Long Haul Wiki - User contributions [en]

PSSD

2023-08-26T16:10:33Z

Admin: /* Summaries */

=Post-SSRI sexual dysfunction=

== Summaries ==

=== Wikipedia ===

* An [https://en.wikipedia.org/w/index.php?title=Post-SSRI_sexual_dysfunction&oldid=1150073490 old Wikipedia page on PSSD] has an excellent summary.

=== PSSD Lab / Ghost ===

* An [https://pssdlab.wordpress.com/about/pssd-resources/ '''excellent primer''' on PSSD] - evidence that it exists, links to resources, etc.
* Video explaining the [https://youtu.be/Z4oz0nVgq_o 5-HT1A Autoreceptor Desensitization] theory.
* [https://pssdforum.org/viewtopic.php?t=2681 Suggested treatment plan] with a quick summary of PSSD characteristics.

== Recovery stories ==

=== u/JacobCook715 ===

While this Reddit user's account is suspended, the research is available online.
* Reddit post: https://www.reddit.com/r/PSSD/comments/12g5u0n/pssd_recovery_database_100_full_partial_recoveries/
* Excel document: https://1drv.ms/x/s!AsSCWpHHo6fMg4U7iP7gb61d2praow

The [https://pssdlab.wordpress.com/pssd-genome-project/ PSSD Lab] (Wordpress blog) is one source of data used in this compilation.

[[File:Bubzoluck-PSSD.png|thumb]]

=== TalkingAnt ===

https://docs.google.com/spreadsheets/d/1NCz87IJJ4CKsoxs7piN4JjSo3ZKZ2PBNatTfYnlFO8c/edit#gid=746811409

=== Jrod ===

https://docs.google.com/spreadsheets/d/1bP3CDR8RKTe-rr74-2Eh-TFIsMrleCFr3luyEGq7ayw/edit

=== r/PSSDHealing ===

https://www.reddit.com/r/pssdhealing/

== Research ==

=== PSSD Network list of published studies ===

https://www.pssdnetwork.org/literature

=== Published papers on SSRI-induced sexual dysfunction (not to be confused with POST SSRI sexual dysfunction) ===

* ''Genome-wide association study of SSRI/SNRI-induced sexual dysfunction [...]'' - https://doi.org/10.1016/j.psychres.2012.01.023 [https://sci-hub.se/https://doi.org/10.1016/j.psychres.2012.01.023 Sci-Hub] - This study found that 11 SNPs mapped to the intronic region of the MDGA2 gene were associated with SSRI sexual dysfunction.

=== u/Bubzoluck (PharmD) ===

The Reddit user Bubzoluck has [https://www.reddit.com/r/PSSD/comments/w8vm8v/image_results_of_the_preliminary_survey_conducted/ posted results of his/her PSSD survey]. Findings include:

* Two thirds were male. 80 responses received.
* Young demographic. (It is unclear if this is a reflection of the Reddit demographic?)
* Most people were on their PSSD med for less than a year
* Most people reported having PSSD for >1 year since stopping their med
* SSRIs were the most common cause of PSSD (82.5%). 3 medications were the most common- Zoloft/sertraline (30%), Lexapro/escitalopram (20%), and Prozac/fluoxetine (12%).

Core symptoms were:
* Sexual Symptoms
** Difficulty generating or sustaining an erection
** Reduced genital sensation
** Pleasureless or weak orgasms
** Reduced response to sex stimuli
** Vaginal dryness
* Cognitive Symptoms
** Difficulty concentrating
** Short an/or long term memory impairment
** Loss of creativity and visualization inside mind
** Speaking, reading, writing, solving slower
** Difficulty understanding information
* Mood Symptoms
** Depression and low moods
** Feelings of emptiness or helplessness
** Loss of energy and insomnia
** Suicidal ideation
** Lower self-esteem and lack of pleasure

=== Sheetrit et al. ===

''Post-SSRI Sexual Dysfunction; Clinical Characterization and Preliminary Assessment of Contributory Factors and Dose-Realted Relationship'' by Joseph Ben-Sheetrit et. al Journal of Clin Pharm, 06/2015. DOI:[https://doi.org/10.1097/JCP.0000000000000300 10.1097/JCP.0000000000000300]

The paper is available [https://drive.google.com/file/d/1EPkBcEPh6g8OeAprMurZgSrF_om-hIU7/view?usp=sharing here].

This 2015 paper makes an argument that PSSD is a real condition.

<blockquote>Despite the aforementioned limitations, the current investigation adds to the emerging evidence that SSRI/SNRI-induced sexual dysfunction persists in some patients beyond drug discontinuation and suggests that this phenomenon may not be fully explained by alternative non-pharmacological factors, including depression and anxiety.</blockquote>

=== GoldenHour515 Survey ===

Dropbox: https://www.dropbox.com/sh/18wiqi15udhz2e0/AABD1gHfv3Dy0sfJ6TKZlowDa?dl=0

Deleted Reddit thread: https://www.reddit.com/r/PSSD/comments/15982kr/survey_results/
* 5/135 participants stated that PSSD symptoms began after reinstatement. This suggests that (for those 5 participants) the main cause of PSSD was not an immutable characteristic such as genetics.

* Symptom comparison between PSSD, COVID vaccine injury, and Long COVID (based on GoldenHour515's data): https://forum.sickandabandoned.com/t/some-overlap-between-pssd-long-covid-and-post-vax/254

== Studies currently recruiting ==

See [[Currently_recruiting_studies#PSSD_(for_those_on_SSRIs_or_suffering_post-SSRI_syndromes)_and_related_syndromes|currently recruiting PSSD studies]].

Glenn Chan

2023-04-09T02:59:17Z

Admin:

== Patient-led Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantazatos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers, presentations ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and by the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* [https://odysee.com/@LongHaulWiki:2/Patient-Experiences-Protocol-2022-12-29:8 Patient Experiences Protocol] (Dec 2022)
* [https://odysee.com/@LongHaulWiki:2/PAMPs-and-the-connection-between-chronic-illnesses:a The Connection Between Vaccine Injury, Long COVID, and ME/CFS]
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Public speaking ==
* [https://odysee.com/@glennchan:b/glenn-chan-j4v:6 Justice 4 the Vaccinated] health conference
* December 14 CPSO protest - [https://odysee.com/@glennchan:b/Glenn-chan-speech---CPSO-protest---short-version-for-socials:e 1 minute edit] and [https://odysee.com/@glennchan:b/Glenn-Chan-speech---Rally-at-CPSO-to-Take-Back-Healthcare-Fri-Dec-16:5 full talk]

== Vaccine injury ==

* Video of [https://odysee.com/@LongHaulWiki:2/Action-Tremors:3 action tremors]
* [https://docs.google.com/document/d/e/2PACX-1vRvcix71Pu0hICiZBUpZ22nvX4C69FDXNaQqGodyfy1xDyAIc9FaOzyy_Zu7kslrUW2kedV-z82AfGk/pub Recovery story]

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Glenn Chan

2023-04-03T04:22:36Z

Admin: /* Publications, papers, presentations */

== Patient-led Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantazatos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers, presentations ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and by the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* [https://odysee.com/@LongHaulWiki:2/Patient-Experiences-Protocol-2022-12-29:8 Patient Experiences Protocol] (Dec 2022)
* [https://odysee.com/@LongHaulWiki:2/PAMPs-and-the-connection-between-chronic-illnesses:a The Connection Between Vaccine Injury, Long COVID, and ME/CFS]
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Public speaking ==
* [https://odysee.com/@glennchan:b/glenn-chan-j4v:6 Justice 4 the Vaccinated] health conference
* December 14 CPSO protest - [https://odysee.com/@glennchan:b/Glenn-chan-speech---CPSO-protest---short-version-for-socials:e 1 minute edit] and [https://odysee.com/@glennchan:b/Glenn-Chan-speech---Rally-at-CPSO-to-Take-Back-Healthcare-Fri-Dec-16:5 full talk]

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Glenn Chan

2023-04-03T04:19:35Z

Admin: /* Surveys */

== Patient-led Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantazatos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers, presentations ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and in the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* [https://odysee.com/@LongHaulWiki:2/Patient-Experiences-Protocol-2022-12-29:8 Patient Experiences Protocol] (Dec 2022)
* [https://odysee.com/@LongHaulWiki:2/PAMPs-and-the-connection-between-chronic-illnesses:a The Connection Between Vaccine Injury, Long COVID, and ME/CFS]
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Public speaking ==
* [https://odysee.com/@glennchan:b/glenn-chan-j4v:6 Justice 4 the Vaccinated] health conference
* December 14 CPSO protest - [https://odysee.com/@glennchan:b/Glenn-chan-speech---CPSO-protest---short-version-for-socials:e 1 minute edit] and [https://odysee.com/@glennchan:b/Glenn-Chan-speech---Rally-at-CPSO-to-Take-Back-Healthcare-Fri-Dec-16:5 full talk]

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Glenn Chan

2023-04-03T04:15:16Z

Admin: /* Publications, papers, presentations */

== Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantazatos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers, presentations ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and in the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* [https://odysee.com/@LongHaulWiki:2/Patient-Experiences-Protocol-2022-12-29:8 Patient Experiences Protocol] (Dec 2022)
* [https://odysee.com/@LongHaulWiki:2/PAMPs-and-the-connection-between-chronic-illnesses:a The Connection Between Vaccine Injury, Long COVID, and ME/CFS]
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Public speaking ==
* [https://odysee.com/@glennchan:b/glenn-chan-j4v:6 Justice 4 the Vaccinated] health conference
* December 14 CPSO protest - [https://odysee.com/@glennchan:b/Glenn-chan-speech---CPSO-protest---short-version-for-socials:e 1 minute edit] and [https://odysee.com/@glennchan:b/Glenn-Chan-speech---Rally-at-CPSO-to-Take-Back-Healthcare-Fri-Dec-16:5 full talk]

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Glenn Chan

2023-04-03T04:14:44Z

Admin: /* Vax injury resources maintained */

== Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantazatos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers, presentations ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and in the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* [https://odysee.com/@LongHaulWiki:2/PAMPs-and-the-connection-between-chronic-illnesses:a The Connection Between Vaccine Injury, Long COVID, and ME/CFS]
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Public speaking ==
* [https://odysee.com/@glennchan:b/glenn-chan-j4v:6 Justice 4 the Vaccinated] health conference
* December 14 CPSO protest - [https://odysee.com/@glennchan:b/Glenn-chan-speech---CPSO-protest---short-version-for-socials:e 1 minute edit] and [https://odysee.com/@glennchan:b/Glenn-Chan-speech---Rally-at-CPSO-to-Take-Back-Healthcare-Fri-Dec-16:5 full talk]

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Glenn Chan

2023-04-03T04:12:57Z

Admin: /* Publications, papers */

== Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantazatos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers, presentations ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and in the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* [https://odysee.com/@LongHaulWiki:2/PAMPs-and-the-connection-between-chronic-illnesses:a The Connection Between Vaccine Injury, Long COVID, and ME/CFS]
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Glenn Chan

2023-04-03T04:11:57Z

Admin: /* Surveys */

== Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantazatos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and in the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Glenn Chan

2023-04-03T04:11:37Z

Admin: Created page with "== Surveys == * Treatment Outcomes survey ** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)] ** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023] ** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here]. * [https://web.archive.org/web/2022..."

== Surveys ==

* Treatment Outcomes survey
** [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment (November 2022)]
** [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for 27 people who recovered - Feb 2023]
** Data and raw analysis are [https://longhaulwiki.com/treatment-outcomes/ available here].
* [https://web.archive.org/web/20221116235620/https://react19.org/wp-content/uploads/2022/05/React19-Post-Vaccine-Retrospective-Study-Second-survey-August-24-2022-FULL-DATASET.pdf Persistent Symptoms survey] - In collaboration with React19 volunteers and Spiro Pantatazos
* [https://web.archive.org/web/20221102202355/https://react19.org/wp-content/uploads/2022/07/Risk-factors-survey-FULL-DATASET.pdf Risk Factors survey]

These surveys have been discussed by Pierre Kory at the [https://covid19criticalcare.com/education-on-demand/ 2022 FLCCC conference].

== Publications, papers ==
* [https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation
* [https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf Numerous issues with the TOGETHER trial] - This analysis has been cited by [https://c19ivm.org/meta.html#cite_https://longhaulwiki.com/resources/assets/Numerous%20issues%20with%20the%20TOGETHER%20trial.pdf c19ivm.org] and in the April 6, 2022 FLCCC weekly presentation at [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_6April2022:c?t=2005 33:25].
* (Gutschi et al.) [https://www.canadiancovidcarealliance.org/wp-content/uploads/2022/11/22OC29_EMA-Analysis-of-BNT162b-Manufacture.pdf An Independent Analysis of the Manufacturing and Quality Issues of the BNT162b BioNTech/Pfizer Quasi-vaccine based on the European Medicines Agency’s Public Assessment Report (EPAR)] - Provided editing assistance so that the paper would be more comprehensible for a lay audience.

== Vax injury resources maintained ==

* Canadian Facebook group - https://www.facebook.com/groups/601448841436707?sorting_setting=CHRONOLOGICAL
* LongHaulWiki.com (this website)
* Odysee channel - https://odysee.com/@LongHaulWiki:2

== Volunteer positions ==

Member of the Canadian COVID Care Alliance's SMAC (Scientific and Medical Advisory Committee). See https://www.canadiancovidcarealliance.org/about-us/#GlennChan

Newly injured guide

2023-03-30T03:30:57Z

Admin: Protected "Newly injured guide" ([Edit=Allow only autoconfirmed users] (indefinite) [Move=Allow only autoconfirmed users] (indefinite))

[https://odysee.com/@LongHaulWiki:2/Start-here-guide-October-14-2022:4 A '''video version''' of this guide can be found at the Long Haul Wiki Odysee channel].

==Vaccine injuries aren’t new==

[[File:Japan hpv vaccine use.jpg|thumb|HPV vaccine usage in Japan. Source: https://www.hpvworld.com/articles/hpv-vaccination-in-japan-a-researcher-s-view/]]

Vaccine safety issues have surfaced in the past:

* Japan stopped using HPV vaccines due to safety issues.
* Lymerix, a Lyme vaccine, was pulled off the market despite demonstrating effectiveness.
* Pandemrix, a H1N1 vaccine, was pulled off the market after safety issues regarding narcolepsy surfaced.
* Researchers have published papers on autoimmune issues with aluminium-based adjuvants used in vaccines.

These safety issues have existed for a long time. The HPV vaccines continue to generate billions of dollars in sales each year despite Japan discontinuing their use. Unfortunately, there has not been much progress in treating vaccine injury. This is part of the reason why some doctors are dismissive towards the vaccine injured- they don’t know how to treat those patients.

Mainstream Western medicine ''does'' recognize certain rare conditions like Guillain Barre Syndrome as vaccine injuries.

* A diagnosis of such a condition makes it easier to get medical treatment, which is usually experimental.
* Those particular diagnoses may make it less difficult to get some financial compensation for vaccine injury.

==Do you have Post COVID Vaccination Syndrome?==

One distinctive feature of COVID vaccine injury is that patients tend to have a high number of rare health symptoms. React19's [https://react19.org/react19-patient-led-research-persistent-symptoms-survey-2/ Persistent Symptoms survey (survey #2)] lists the most common symptoms. Click/tap on the image below to see a larger version.

[[File:React19-survey2-symptoms-slide.png|800px]]

Most surveyees had at least 5-10 symptoms:

[[File:React19-survey2-symptom-count.png|800px]]

At the moment, having a large number of symptoms seems to be the best indication of COVID vaccine injury. It is possible that COVID vaccine injury overlaps with Long COVID and ME/CFS; these conditions may be different facets of the same problem.

=== Onset ===

Symptoms generally begin within 2 weeks of vaccination. However, it is possible that [[Delayed_onset_of_vaccine_injury|symptom onset can be delayed to 10 weeks after vaccination]].

=== Stories ===

To compare your experience with others, you can read the stories at vaccine injury story sites like [https://www.realnotrare.com/ Real Not Rare].

==Treatment==

Treatment protocols are rapidly evolving as doctors gain experience and more data becomes available.

* See the LongHaulWiki Odysee channel for '''[https://odysee.com/@LongHaulWiki:2/data-driven-long-haul-treatment:9 a video summarizing the latest data on positive and negative experiences being reported by patients]'''. Because many of the treatments are experimental, you risk harming your body. Please be careful and understand the risks of what you are doing.

* The FLCCC has their own '''[https://covid19criticalcare.com/covid-19-protocols/i-recover-post-vaccine-treatment/ protocol for COVID vaccine injury]'''. The [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c FLCCC Odysee channel] has various videos explaining their latest protocols. For example, a [https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/weekly_webinar_July12:d July 13 webinar] explains Paul Marik's thoughts on autophagy, its role in clearing spike protein, and drugs that might promote autophagy.

* The [https://odysee.com/@React19:6 React19 Odysee channel] has various webinars aimed at patient and doctor-to-doctor education. It also contains various viewpoints on COVID vaccine injury treatment.

See the [[Newly_injured_guide#Finding_a_doctor_who_is_willing_to_help|finding a doctor section]] below. You may be able to find a doctor who has been learning about COVID vaccine injury treatment. Medical professionals may be able to help you get access to medications and to implement treatment attempts under medical supervision.

== Harmful treatments ==

At the moment (August 2022), it seems that even the best treatments will cause significant harm to a small portion of patients. For certain treatments, the worsening of symptoms can be permanent or long-lasting. It is not known why this seems to be the case.

It may be a good idea to stop treatments that seem to be harming you. (However, it is not known if a cautious approach is actually the best approach.)

==Risks of certain medical tests and treatments==

* '''MRI with gadolinium contrast dye'''. MRI without any contrast or dye is fine. The benefit of the contrast dye is not well-known at this point while we know that there is a small risk of debilitating injury. See [http://GadoliniumToxicity.com GadoliniumToxicity.com]; the gadolinium injured have support groups just like long haulers.
* '''?Lumbar puncture?''' - If you have a connective tissue disorder, your CSF fluid may leak and be hard to patch. The risk/benefit isn't well understood at the moment.
* '''Too many CT scans'''. A few are fine, but too many put you at unnecessary risk of cancer.

Treatments:

* '''COVID vaccines''' - The vax injured seem to be re-injured at very high rates from re-vaccination (possibly over 60%). See the page on [[COVID_prevention_and_treatment|COVID prevention and treatment]].
* '''Flu vaccine''' - Less is known about other vaccines in the vax injured. People with Long COVID report a low rate of worsening after the flu vaccine. '''5/35 (14%)''' in a Body Politic poll reported worsening, with 3/35 reporting significant worsening. For ME/CFS patients, the Bateman Horne Center [http://batemanhornecenter.org/wp-content/uploads/2020/05/BHC-FluVaccine-FAQ-002.pdf discusses the risks of the flu vaccine] in people with ME/CFS.
* '''Exercise''' - Some long haulers get screwed up by this. You can use pacing strategies (e.g. spoon theory) to avoid post-exertional malaise. Pacing can let you optimize your limits a little more.
* '''SSRIs and many psychiatric drugs''' - can lead to horrible withdrawal effects and suicide.
* '''Ativan, benzodiazepenes''' - can lead to horrible withdrawal effects and suicide. However, it is possible that the benefits outweigh the risks.
* ''''Flox' antibiotics''' - Fluoroquinolone antibiotics with 'flox' in their name, e.g. ciprofloxacin (Cipro), can have devastating side effects. Those injured by these antibiotics (floxies) have their own support groups. As many alternatives exist, flox antibiotics can be avoided.
* '''Botulinum toxin (e.g. Botox, Dysport)''' - This toxin damages nerves and can spread well beyond where it is supposed to stay. While the toxin can cause dysautonomia by itself, it is unknown if it synergizes with dysautonomia from vaccine injury. Support groups exist for those harmed by 'iatrogenic botulism'.
* '''Breast implants, joint replacements, surgical mesh, pacemakers''' - These can get infected and lead to chronic illness. The last three items were never designed to be taken out of your body. That is a problem if they get infected.

Remember to get informed consent! Doctors often will not tell you about what can go wrong with the tests and treatments listed above. YOU need to be responsible for your own informed consent.

==Medical testing==

Before doing anything risky, it is probably a good idea to figure out what you have.

Medical testing might also help you deal with people who don’t believe that your health problems are “real”.

=== Relevant medical tests (a few of which you can do at home) ===

'''Abnormal pulse''' - You can measure your own pulse to see if it is too fast (e.g. over 100bpm while resting), too slow (below 60bpm is borderline slow for non-athletic adults), or irregular. A doctor can use an ECG to measure your heart’s electrical signals to detect abnormalities.

'''Medical imaging (e.g. ultrasound, X-ray, MRI) to detect myocarditis or pericarditis''' - Some vaccine injured people have myocarditis/pericarditis while others do not (even though their heartbeat is not normal). Ask your doctor about these tests. If a doctor wants to give you an MRI “with contrast” involving a gadolinium-based contrast dye, please do your own research on the safety of gadolinium-based contrast dyes. A Reddit thread summarizes the concerns as patients report debilitating long-term health effects: https://www.reddit.com/r/neuroscience/comments/cja9pe/connection_between_gadoliniumbased_contrast/ Also see [https://gadoliniumtoxicity.com/ GadoliniumToxicity.com].

'''Chiari malformation''' - A Chiari malformation refers to a part of the brain (cerebellum) that dangles down into the spinal column instead of holding its normal rounded shape. This unusual structure can be detected via a scan of the brain (e.g. MRI, CT, etc.). Because some people have a herniated cerebellum without symptoms, diagnosis is based on both symptoms and an abnormal brain scan.

[[File:MRI of human brain with type-1 Arnold-Chiari malformation and herniated cerebellum.jpg]]

Chiari support groups and forums will have additional information on this condition.
* https://www.chiarisupport.org/
* https://www.chiariassociation.org/ has a list of doctors with experience in treating Chiari

Chiari may be a co-morbid condition that is more common among the vaccine injured.

'''Hypermobility''' - Some people have extremely flexible joints and are prone to physical injury due to that hyperflexibility. The flexibility did not arise from stretching or contortionist training. The [https://www.ehlers-danlos.com/assessing-joint-hypermobility/ Beighton test] can be performed at home and provides objective evidence for medical diagnosis.

Hypermobile Ehlers Danlos Syndrome (hEDS) support groups may have more information on that condition with information on doctors knowledgeable about diagnosing and treating that condition. EDS support groups are another place to look for information on hEDS.

hEDS may be a co-morbid condition that is more common among the vaccine injured.

'''Dizziness, fast heartbeat, or fainting when going from lying down to standing''' - If you experience this, you can do a poor man’s tilt table test at home as described in Youtube videos such as this one: https://youtu.be/eX7ZWWVVPXo . If you feel faint while standing up, please have somebody watch you in case you pass out. A tilt table test at a specialist will be more reliable. It will measure both heart rate and blood pressure.

The NASA Lean Test may be a more sensitive test for spotting issues with orthostatic intolerance (development of symptoms when standing upright that are relieved when reclining). The Health Rising ME/CFS website has [https://www.healthrising.org/blog/2020/08/25/bateman-nasa-lean-test-chronic-fatigue-syndrome-orthostatic-intolerance/ an analysis of the NASA Lean test] along with [https://www.healthrising.org/forums/resources/a-simple-test-for-orthostatic-intolerance-in-chronic-fatigue-syndrome-and-fibromyalgia-the-nasa-way.388/ simple instructions] for performing the test in a doctor's office. While the guide suggests stopping certain medications, please note that discontinuing many anti-depressants (e.g. TCAs, SNRIs) can be very dangerous and sudden withdrawal is often the most dangerous way of stopping those medications.

If you do get a tilt table test with a specialist, please be careful about the Valsava manuever ''if you have a CSF (CerebroSpinal Fluid) leak''. It [https://www.reddit.com/r/CSFLeaks/comments/o36v1g/valsava_is_a_no_no/ may blow your CSF patch].

'''Mast cell activation syndrome (MCAS) and histamine intolerance''' - These related conditions have similar symptoms and treatments. Diagnosis often involves doing a trial run of a low histamine diet and/or antihistamines. See the page on [[MCAS_and_histamine_intolerance|MCAS and histamine intolerance]] for information on how to try low histamine diets and how to find specialists.

'''Various auto-antibody tests''' - Your body has a very long list of antigens that it can theoretically produce auto-antibodies against. For some/many of those antigens, commercially-available antibody tests exist. While it is possible to throw every medical test that exists at a patient, doing so isn’t necessarily productive. If enough tests are used on a patient, some will come up positive because medical tests have a false positive rate.

However, auto-antibodies seem to be far more common in long haulers than average people. It is likely that a significant portion of symptoms are being driven by autoimmunity and that detectable autoantibodies are being produced in many patients. Auto-antibody testing relevant to particular symptoms (e.g. POTS, small fiber neuropathy, personality changes, thyroid) may be warranted. Autoimmunity often targets specific tissues and therefore generates unique symptoms, e.g. attacks on small nerve fibres will generate symptoms consistent with small fiber neuropathy.

Some doctors may erroneously assume that no autoimmunity is occurring if ANA and other initial auto-antibody tests are negative. However, those tests are far from being reliable in ruling out autoimmunity.

'''Thyroid workup''' - A few vax injured are diagnosed with a new thyroid condition after vaccination (likely at a rate much dramatically higher than the general population according to [https://react19.org/react19-patient-led-research-risk-factors-survey-3/ React19 Survey #3]). If you have the symptoms of hypothyroidism (underactive thyroid) or hyperthyroidism (overactive thyroid), you may ask your doctor for an evaluation. Some medical professionals believe that borderline test results may indicate a "subclinical" condition where you are partway towards developing a clear thyroid condition. You can think of a "subclinical" condition as somebody who is borderline obese- they are part of the way there. However, please keep in mind that not all doctors believe in subclinical hypo/hyperthryoidism. At least one thyroid condition can lead to your body switching between an overactive and underactive thyroid.

'''Dysfunctional nerves and/or small fiber neuropathy''' - Damage to the small fibers of the peripheral nervous system can cause burning pain, numbness, inability to sense hot/cold, and/or tingling sensations. A skin biopsy can measure the density of nerve fibres in the skin and test for small fiber neuropathy. [[Emerging_autoantibody_lab_tests|Non-standard auto-antibody tests]] for SFN are also available, which may be useful for patients seeking experimental IVIG treatment. IVIG approval resources are available [[IVIG_approval_resources|here]].

The ability to sweat normally can be tested via the QSART test.

'''Lyme tests''' - This is a very controversial topic, but the short story is this: the tests are bad and have a very high rate of false negatives. If you test positive, you should go see a doctor about getting treated (*standard antibiotic regimens do not wipe out persister-form bacteria in animal models or 'in vitro' studies, so conventional treatment may not necessarily work). If you test negative, you or your doctor may erroneously assume that you do not have Lyme.

If you have tried everything else and your health problems persist, you can look up the symptoms of Lyme disease. Try https://www.lymedisease.org/lyme-disease-symptom-checklist/ Then, if you think you might have Lyme, you can do your own research on the controversy surrounding chronic Lyme. DrBeen’s [https://youtu.be/FqVlOfzZJH0 conversation with Steven Philips on Youtube] is a good introduction to the controversy. Philips believes that chronic illness is linked to transmissible diseases and that chronic illness can be treated. The other side of the controversy argues that chronic Lyme doesn’t exist. They may argue that grifter doctors exploit their patients for several years by “treating” them for Lyme bacteria that don’t exist.

'''Other medical tests''' - This list is not exhaustive and leaves out many things. You could have a health condition that doctors know how to diagnose and treat.

A longer list of medical tests can be found [https://docs.google.com/spreadsheets/d/1xOiYHqtRmbDd5aqK6OQhwmtJwRybc_oPKA53NaTCjvk/edit?usp=sharing in this Google Sheets document].

== Support groups ==

[https://docs.google.com/spreadsheets/u/2/d/e/2PACX-1vSebDq-oqiy0vTN8B92uH76W5_r13bTWpH0fR7RCskBcmjdPlXDtslDuyhhQ0Nbz5_V_wQ_Bgy3--SX/pubhtml# '''The first tab in this Google sheet'''] lists support groups for vaccine injury.

Support groups are one of the best places to get '''country-specific information''' on good doctors, tips on navigating your healthcare system, etc. You should start with country-specific support groups but there may also be information in the general international support groups if you can't find all of the answers that you are looking for.

==Doctors who don’t want to try==

There can be different reasons why doctors may not want to help you with serious health problems:

* '''Denial of vaccine injury'''. For social, political and non-medical reasons, some doctors want to support the narrative that vaccines are “safe and effective”.
* '''Lack of knowledge'''. A doctor may know very little about diagnosing and treating vaccine injury.
* '''Unwillingness to say “I don’t know”'''.
* '''Inability to help'''. It would take time for a doctor to learn about vaccine injury and how to treat it, especially when vaccine injuries (and similar conditions like ME/CFS) are poorly understood. Many doctors do not have the time to learn about obscure health conditions. Or, because of how they are paid, they will not be properly paid for the time that they spend treating vaccine injured patients.
* '''Persecution from the medical establishment'''. Currently, doctors can lose their job for prescribing ivermectin, opposing vaccine mandates on social media, or for recognizing vaccine injuries that the medical establishment does not recognize. Many people do not want to lose their job.

You may encounter doctors that lie to you, gaslight you, misdiagnose you with anxiety or a functional disorder (psychological illness), or otherwise dismiss you. Trying to fight these doctors is probably not the most productive use of your time.

== Finding a doctor who is willing to help ==

* '''[https://docs.google.com/spreadsheets/u/2/d/e/2PACX-1vSebDq-oqiy0vTN8B92uH76W5_r13bTWpH0fR7RCskBcmjdPlXDtslDuyhhQ0Nbz5_V_wQ_Bgy3--SX/pubhtml# The second tab in this Google sheet]''' contains lists of doctors who treat long COVID and/or vaccine injury. The support groups listed in the first tab often have members discussing doctors in your area.
* Some doctors are willing to help ''long COVID'' patients. Because the treatments for long COVID seem to work for vaccine injury, you can simply tell your doctor that you might have long COVID. There is no definitive test for Long COVID that is commercially available. The nucleocapsid (N) antibody test has false negatives and false positives, so it is not a definitive test for Long COVID.
* Alternative and natural medicine practitioners tend to be very open-minded. However, be careful as some of these practitioners claim to have a cure for every health problem that exists.
* In the United States, a DO (doctor of osteopathic medicine) would have training in alternative medicine so they tend to be very open-minded. They are able to prescribe medications like a MD.

==Vaccine injury compensation==

Billions of dollars have been paid out for vaccine injury claims as most countries have vaccine injury compensation programs. However, your country’s system likely does not work the way you think it works.

To understand how things work ''in your country'', do web searches for

* “Vaccine injury” attorney
* “Vaccine injury” lawyer
* “Vaccine injury” lawyer United States (replace US with the name of your country)

Law firms will put useful information on the Internet as a way of attracting new clients.

At the moment, many programs are not paying COVID-19 vaccine claims (but may do so in the future). The amount of money being paid out may be low.

Your particular vaccine injuries may be dismissed. The compensation programs may find excuses to label your vaccine injuries as not vaccine-related (this has happened with other vaccines). The appendix at the end of this document has a list of conditions that are more likely to be considered a vaccine injury (in the eyes of conventional, mainstream medicine). However, you may wish to talk to a lawyer/attorney who specializes in vaccine injury claims (''for your country'') because they would likely know more than you do about which injuries will be recognized.

'''Resources:'''

* [https://ecf.cofc.uscourts.gov/cgi-bin/CFC_VaccineAttorneys.pl List of attorneys in the United States]

==Tell your story + report adverse events to safety surveillance systems==

See [https://docs.google.com/spreadsheets/u/2/d/e/2PACX-1vSebDq-oqiy0vTN8B92uH76W5_r13bTWpH0fR7RCskBcmjdPlXDtslDuyhhQ0Nbz5_V_wQ_Bgy3--SX/pubhtml# the "Tell Your Story" tab in this Google Sheet].

==Closing thoughts==

Vaccine injury is not well understood so there isn’t a clear treatment or cure. It can also be frustrating to deal with doctors who don’t want to help you. If you want a place to vent, feel free to come join the support groups. 💜

==Appendix - Health conditions that mainstream medicine may consider to be vaccine-related==

* '''Heart''': Myocarditis, pericarditis
* '''Allergy''': Allergic reaction to the vaccine or a vaccine component such as PEG (polyethylene glycol).
* '''Shoulder injury''': SIRVA, frozen shoulder, adhesive capsulitis
* '''Bleeding disorders''': Low blood platelets (thrombocytopenia), VITT (Vaccine-Induced Immune Thrombotic Thrombocytopenia, ITP (Immune thrombocytopenic purpura).
* '''Blood clotting disorders''': e.g. embolism (blood clot), stroke
* '''Facial paralysis''': Bell’s Palsy.
* '''Nerve damage''': Guillain barre syndrome (the immune system damages the nerves, causing muscle weakness and sometimes paralysis).

Certain rare conditions:

* CIDP (this is sort of like the permanent form of Guillain Barre Syndrome)
* Parsonage Turner syndrome (brachial neuritis)
* ADEM (Acute disseminated encephalomyelitis)
* Aplastic anemia (not enough new blood cells)
* Cellulitis (bacterial skin infection)
* Complex Regional Pain Syndrome - a form of chronic pain that usually affects an arm or a leg
* Encephalitis - brain swelling, which can be caused by an autoimmune response
* Polymyalgia Rheumatica - inflammatory disorder that causes muscle pain and stiffness, especially in the shoulders and hips
* Polyneuropathy - simultaneous malfunction of many peripheral nerves throughout the body
* Pemphigus - blisters on skin (Google image search this to see what it looks like)
* Transverse myelitis - inflammation of both sides of one section of the spinal cord
* Vasculitis - a group of disorders that destroy blood vessels by inflammation

Main Page

2023-03-30T03:28:08Z

Admin: Protected "Main Page" ([Edit=Allow only administrators] (indefinite) [Move=Allow only administrators] (indefinite))

== Resources for vaccine injury and/or long COVID ==

[[Newly_injured_guide|'''Guide for the newly injured''']]

[https://docs.google.com/spreadsheets/u/2/d/e/2PACX-1vSebDq-oqiy0vTN8B92uH76W5_r13bTWpH0fR7RCskBcmjdPlXDtslDuyhhQ0Nbz5_V_wQ_Bgy3--SX/pubhtml# Lists of doctors, support groups, and places to tell your story]

=== Resources and treatment information ===

* [https://odysee.com/@LongHaulWiki:2/data-driven-treatment-november-2022:d A data-driven approach to Long COVID and COVID vaccine injury treatment] (November 2022)
* [https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d What worked for those who recovered] (Feb 2023)
* [https://odysee.com/@LongHaulWiki:2/Patient-Experiences-Protocol-2022-12-29:8 Patient Experiences Protocol] (Dec 2022)

Odysee / Youtube videos
* [https://odysee.com/@LongHaulWiki:2 Long Haul Wiki videos]
* [https://odysee.com/@React19:6 Danice Hertz's + Angel Lopez's webinars for vax injured patients and practitioners]
* [https://odysee.com/@LongHaulWiki:2/FLCCC-long-haul-treatment-videos:d FLCCC long haul videos]
* [https://covid19criticalcare.com/education-on-demand/ FLCCC educational conference recordings]
* [https://odysee.com/@LongHaulWiki:2/world-council-for-health-vax-injury:2 World Council for Health long haul videos]
* [https://www.youtube.com/@mygotodoc9567/streams Syed Haider] (mostly Long COVID but he treats vax injury)
* [https://www.youtube.com/c/RUNDMC1 Gez Mezinger's Youtube channel on Long COVID]

[[Ivermectin]] - how to obtain it and safety information

[https://odysee.com/@LongHaulWiki:2/Dallas-Buyers-Club:c How to get access to healthcare] if you face extreme barriers to prescription drugs or experimental treatments.

[[V🥕ccn_injury_research_surveys_(completed)|Vaccine injury survey results]]

[[COVID prevention and treatment]] - why it's important in long haulers

=== More treatment information ===

[[MCAS and histamine intolerance|MCAS and histamine intolerance overview]]

[[IVIG_approval_resources|IVIG approval resources]]

[[List_of_doctors_and_approaches|A list of doctors treating long haul and their different treatment approaches]]

== General resources ==

[[Emerging_autoantibody_lab_tests|Non-standard auto-antibody lab tests]] explained

[[Foreign_object_infections|Foreign object infections]]

[[Multiple_persistent_infections|Multiple persistent infections]] - an explanation for long haul syndromes and possibly ways of treating it.

== Resources for clinicians and researchers ==

[https://longhaulwiki.com/resources/assets/Vaccine-injury-primer-Dec-12-2022.pdf COVID vaccine injury primer] - Dec 2022 slide presentation

<s>(''Work in progress'') [[Post_vaccination_syndrome_introduction_for_practitioners|Post vaccination syndrome introduction for practitioners]]</s>

Protocols: [https://covid19criticalcare.com/treatment-protocols/i-recover/ FLCCC I-RECOVER] | [https://docs.google.com/document/d/1toh_0ZNEdzHgypQS8QQSmPKmfMZvmoTydHyt0zIrMf4/mobilebasic?fbclid=IwAR0FuBWA-IA8xKqvuumJ2yCj1mI2euP3Pj2PBccljxgWMbw58Y8paQF6pw8 Syed Haider] | [https://www.truthforhealth.org/vaccine-injury-resources/ Truth 4 Health (scroll down to Vaccine Injury Treatment Guide)] | [https://twitter.com/LongHaulWiki/status/1624815469185179649 Dr. Darrell Demello (Feb 2023)] | [https://bornfree.life/experimental-treatment-methodology/7/ Joshua Leisk] | [https://odysee.com/@LongHaulWiki:2/Patient-Experiences-Protocol-2022-12-29:8 Patient experiences]

[[Etiology|Possible etiologies of long COVID and post vaccination syndrome]]

[[Delayed_onset_of_vaccine_injury|Delayed onset of vaccine injury]] can be 10 weeks after vaccination.

A list of [[Vax_injury_research_surveys|Post COVID Vaccination Syndrome]] surveys that have been completed or are being planned.

== Contributing to this wiki ==

[https://www.mediawiki.org/wiki/Cheatsheet MediaWiki syntax cheat sheet]

[[How_to_use_the_wiki|How to use the wiki]]

List of doctors and approaches

2022-05-24T16:48:47Z

Admin: /* Akiko Iwasaki / vaccination for long haulers */ removing vax for long haulers for now

==Doctors treating long haul COVID and vaccine injury (post vaccination syndrome)==

This is a list of doctors and doctor groups treating long haul. These health problems are new so ''there hasn’t been much research about what’s safe and effective''. Please become informed about the risks of medical experimentation!

===FLCCC===

'''Key treatments''': Ivermectin, a statin (atorvastatin), prednisone, fluvoxamine, and many other drugs.
For MCAS (mast cell activation syndrome, which a number of long haulers have): low-dose naltrexone (LDN) and various drugs

'''Theory''': Ivermectin's mechanism of action is unclear. It seems to work for long haul but not in all sufferers. Ivermectin may be beneficial because it binds to the spike protein, perhaps preventing an autoimmune reaction that occurs in some people but not others. It may also affect the way the immune system functions (immunomodulatory), which could explain why ivermectin applied on the skin (FDA approved as Soolantra) works for rosacea.

Dr. Been’s youtube channel has talks about fluvoxamine, MCAS (e.g. chats with Tina Peers and Lawrence Afrin), long haul, etc. etc.

His talk with Bruce Patterson and Ram Yogendra may explain why maraviroc is listed as a third-line treatment in the Jan 20222 protocol: https://odysee.com/@DrMobeenSyed:1/long-covid-discussion-with-dr.-bruce:f?r=9U5LyeCuf2jpinYRxYjvNdaM6nQqsThF

His talk with Keith Berkowitz on the FLCCC channel discusses LDN and the Jan 2022 I-RECOVER protocol: https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/FLCCC-WEBINAR-020222_FINAL-EDIT:e?r=9U5LyeCuf2jpinYRxYjvNdaM6nQqsThF

'''How to get more information''':
The I-RECOVER protocol can be found at https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/

A list of doctors friendly to the FLCCC protocols can be found here: https://covid19criticalcare.com/network-support/the-flccc-alliance/

'''Does it work? What we know so far''': Dr. Been talks to many other doctors and aggregates their shared knowledge and experience.

===Bruce Patterson / CovidLongHaulers.com group===

'''Key treatments''': A statin (pravastatin), maraviroc or other CCR5 antagonist, ?ivermectin?, avoiding exercise that makes you sweat, baby aspirin

'''Testing''': An inflammatory marker panel invented by Patterson’s company IncellDX. The panel was designed to specifically measure acute COVID and long haul COVID (PASC).

'''Their theory''': For some reason, the body cannot clear the S1 portion of spike protein from the body. It is the root cause of long haul through hyperimmunity, autoimmunity, or some combination of both hyperimmunity and autoimmunity. Hyperimmunity is when the immune system is overly active, leading to inflammation in blood vessels that cause the body to dysfunction. Autoimmunity is when the immune system starts attacking its host.

Since Patterson’s company makes medical tests, their approach is geared around “precision medicine”. The idea is to test the patient to figure out what’s wrong and to use those tests to guide treatment. That’s the theory anyways. In practice, their concierge service doctors may not necessarily practice precise medicine, e.g. they may recommend maraviroc even if CCL5 is not elevated.

'''For more information''': Search Youtube for drbeen bruce patterson. You’ll find talks between Dr. Mobeen Syed and Dr. Bruce Patterson about the treatment of long haul.
You can sign up for testing at covidlonghaulers.com

====Statin and maraviroc effectiveness ====

On [https://youtu.be/wCEiDAUrOG4?t=600 a podcast with Dr. Drew], Patterson and Eric Osgood briefly discuss the trial design of their anticipated clinical trial. The design of the trial anticipates/suggests that many patients won’t respond to a statin plus maraviroc. Osgood draws from the lessons learned from clinical trials studying chronic pain:

<blockquote>...chronic pain is a very difficult uh condition to study because a lot of the study drugs are only going to work on maybe 30 or so percentage of the- of that particular disease population and then it is so prone to the placebo effect as well as to people maybe not being that precise or accurate in the way that they report and so there is a need often to do enriched designs or enriched enrollment designs in order to better demonstrate proof of concept...</blockquote>

A paper put out by the Patterson group (''Targeting the Monocytic-Endothelial-Platelet Axis with Maraviroc and Pravastatin as a Therapeutic Option to Treat Long COVID/ Post-Acute Sequelae of COVID (PASC)'' https://www.researchsquare.com/article/rs-1344323/v1) found a statistically significant benefit to pravastatin plus maraviroc (n=18). However, the larger Cytodyn RCT on the CCR5 antagonist leronlimab (n=56) did ''not'' find a statistically significant benefit. See [[List_of_doctors_and_approaches#Leronlimab|the leronlimab section]] for more information on leronlimab.

The Patterson group study had a retrospective observational design and would be less reliable than a RCT (randomized controlled trial). The lengthy survey process used in the Patterson group study may heavily bias the results because maraviroc+statin non-responders may not necessarily spend time on the phone completing lengthy questionnaires, especially if they have cognitive difficulties from long haul. The paper does not describe the drop-out rate. It also does not fully describe how 18 patients were selected out of the thousands of patients that have done an IncellDX panel test.

===Mast Cell Activation Syndrome specialists===

'''Theory''': Overly active mast cells are responsible for a wide range of symptoms.

MCAS is a syndrome that has been researched for many years before COVID. While it is difficult to diagnose and treat, experimentation with various drugs (some of them are sold over-the-counter) may yield something that will alleviate the patient's symptoms. MCAS seems to be common in long haulers.

'''How to get more information''': A MCAS diagnosis and treatment guideline by Afrin et al. can be found at https://doi.org/10.3109/07853890.2016.1161231

Youtube has many interviews with MCAS specialists such as Lawrence Afrin, Theoharis Theoharides and Tina Peers.

The patient support organization ''The Mast Cell Disease Society'' has a list of medical centers treating MCAS at https://tmsforacure.org/resources/finding-a-physician/

===HELP Apheresis===

'''Key treatment''': Apheresis. Available in Germany.

'''Theory''': Apheresis removes microscopic blood clots that are causing health problems.

'''How to get more information''': You can search Facebook for groups with “apheresis” in their name.

Gez Medinger’s Youtube channel has a talk with his friend Dr. Asad Khan about this treatment. https://youtu.be/rEJDjfj7oi8

A youtube interview with Resia Pretorius has a brief segment on HELP apheresis. https://youtu.be/C8tzTmVwEpM

===Microclots / Etheresia (Resia) Pretorius and colleagues===

'''Key treatment''': A combination of drugs is used to reduce microclots in long COVID patients: Clopidogrel, Aspirin, a direct oral anticoagulant (Apixiban), plus a proton pump inhibitor (pantoprazole). “''Such a regime must only be followed under strict and qualified medical guidance to obviate any dangers''”; Resia warns that the therapy carries (significant) risk and should only be done under proper medical supervision. Patients were pre-screened with medical tests (e.g. Thromboelastography) to determine if microclots existed and to determine if the patient was a candidate for therapy.

'''Theory''': Microclots (tiny blood clots) are found in long COVID patients and are the source of major symptoms that they experience. Academic papers on this subject include:

* ''Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae of COVID-19 (PASC) is accompanied by increased levels of antiplasmin'' https://doi.org/10.1186/s12933-021-01359-7
* ''Huynh, A., Kelton, J.G., Arnold, D.M. et al. Antibody epitopes in vaccine-induced immune thrombotic thrombocytopaenia''. Nature 596, 565–569 (2021). https://doi.org/10.1038/s41586-021-03744-4

'''For more information''': There is a Youtube interview with Dr. Resia Pretorius on LongCovid microclots (spike protein, HELP apheresis + other topics) https://youtu.be/C8tzTmVwEpM

Pretorius and her colleagues have published a pre-print on the therapy they tried on 24 patients: https://www.researchsquare.com/article/rs-1205453/v1

'''Does it work? What we know so far''': The pre-print mentioned previously strangely contains very little data on how much patients improved on the therapy. The abstract claims: “Each of the 24 treated cases reported that their main symptoms were resolved and fatigue as the main symptom was relieved, and this was also reflected in a decrease of both the fibrin amyloid microclots and platelet pathology scores.”

[https://www.reddit.com/r/covidlonghaulers/comments/t5ezh1/have_you_tried_blood_thinners_did_that_help/ Survey data from r/CovidLongHaulers] shows that 11/22 (50%) of poll respondents reported small or significant improvement in symptoms from blood thinners, substantially below the 100% reported in the pre-print.

===Berlin Cures / Gerd Wallukat===

'''Key treatment''': BC 007 (experimental drug), removal of antibodies from the blood via apheresis

'''Testing''': Auto-antibody test. They are one of three German labs providing novel auto-antibody tests (see [[Emerging_autoantibody_lab_tests|here]]).

'''Theory''': Autoimmunity. The body is producing autoantibodies that engage in “friendly fire” and attack specific host tissues instead of foreign antigens (invaders and other things that shouldn’t be in the body).

'''Resources regarding this group’s work''':

https://www.fau.eu/2021/07/06/news/medication-for-autoantibodies-also-effective-for-long-covid/

https://berlincures.de/

https://youtu.be/XHaDCBXWArU - “...we assume that the immunoadsorption or plasmapheresis [which get rid of antibodies that cause health problems] represent a new therapeutic option to treat patients…”

===Takashi Yamamura===

Key treatment: corticosteroids (e.g. prednisone), IVIG, and treatments used for rheumatoid arthritis (there are a lot of them).

Theory: It is likely that there is some sort of autoimmune component associated with long haulers, e.g. researchers can measure auto-antibodies in patients. In theory, doctors could take treatments that work on classic autoimmune conditions like rheumatoid arthritis and apply those treatments to long haulers. (In practice, Bruce Patterson reports that low-dose corticosteroids seem to work better than high-dose. That isn’t the case with classic autoimmune conditions.)

Classic autoimmune conditions are regularly treated by suppressing the immune system with drugs. IVIG is also thought to be beneficial for autoimmune conditions.

Avindra Nath (NIH) and Takashi Yamamura discuss ME/CFS and long COVID in a discussion available on Youtube: https://youtu.be/xMFCNtoZWIw?t=1096

==== IVIG effectiveness ====

[https://www.cadth.ca/sites/default/files/pdf/htis/2018/RC0962%20Neurology%20Off-Label%20IVIG%20Final.pdf A report by the Canadian government-funded organization CADTH] summarizes various meta-analyses on the off-label use of IVIG. Most of the systematic reviews found that IVIG did no better than placebo. Two randomized controlled trials of IVIG on postpolio syndrome found no statistically significant benefit to IVIG compared to placebo, with the possibility of some treatment-related harm in the IVIG group.

<blockquote>IVIG was also no better than placebo for postpolio syndrome and reporting of adverse events was lacking</blockquote>

Various articles in scientific journals advocate for the use of IVIG, as listed on the [[IVIG_approval_resources#Scientific_papers_discussing_IVIG_treatment_of_conditions_commonly_found_in_long_haulers|IVIG approval resources page]].

The NIH believes that there may be some merit to IVIG and corticosteroids in the treatment of long COVID patients. A [https://www.science.org/content/article/rare-cases-coronavirus-vaccines-may-cause-long-covid-symptoms ''Science'' magazine article] notes:

<blockquote>Some of the patients who spoke with Science say medications that tamp down the immune system have offered at least a measure of relief. Nath noticed the same phenomenon. He hopes results from an NIH clinical trial testing IVIG and intravenous steroids in Long Covid patients “will be applicable to the vaccine-related complications.” None of the patients with whom Science spoke has fully recovered.</blockquote>

==== Rituximab effectiveness ====

It is unclear if rituximab is being used in long haulers, although it is a drug used to treat rheumatoid arthritis. For ME/CFS, rituximab did not show a benefit in the 151 patients randomized in a controlled trial (see https://doi.org/10.7326/M18-1451).

=== Non-standard auto-antibody tests ===

The following chart shows disorders and the labs offering tests to determine if there are auto-antibodies related to those conditions. Auto-antibodies would suggest that the condition is being caused by the body attacking itself. If so, existing treatments for autoimmunity may be helpful.

[[File:Panel_tests_available_from_5_labs.png]]

See the page on [[Emerging_autoantibody_lab_tests|non-standard auto-antibody tests]] for more information.

=== Plasma exchange / apheresis ===

'''Theory:''' Whereas intravenous immunoglobulin (IVIG) therapy injects donated antibodies into a patient, plasma exchange will remove the patient's existing antibodies first before replacing them with donated antibodies. The theory is that problematic auto-antibodies are removed and replaced with non-pathogenic antibodies from donors. Plasma exchange is usually combined with a therapy to suppress the immune system so that the patient does not create more problematic auto-antibodies.

Note that IVIG contains auto-antibodies too because healthy donors have auto-antibodies, but at lower rates than unhealthy people (see https://www.jaad.org/article/S0190-9622(08)00939-0/fulltext#relatedArticles).

Plasma exchange is known by other names such as apheresis, plasmaphersis, TPE (therapeutic plasma exchange), PE, PET (PE therapy), and PLEX. It is not the same as HELP apheresis. HELP apheresis substitutes ''clotting-related'' components of the blood (and other things such as pathogens associated with those portions of the blood) while plasma exchange focuses on substituting the ''antibody-related'' components of the blood.

'''More information:'''
* A Youtube video from Yale Medicine explains apheresis: https://www.youtube.com/watch?v=8mnOUoI3bDk&ab_channel=YaleMedicine
* Avindra Nath, a researcher at NIH, talks about long COVID treatment: https://youtu.be/YpfHoz22ePk?t=1952
* A letter to the editor discusses PE as a treatment for encephalitis (brain inflammation) caused by acute COVID-19: https://doi.org/10.1093/brain/awaa337

===Gustavo Aguirre Chang===

'''Key treatments''': ivermectin, monoclonal antibodies, HELP apheresis

'''Theory''': Monoclonal antibodies treat a persistent SARS-CoV-2 infection that is causing long COVID. Ivermectin is an antiviral that works against SARS-CoV-2.

'''More information''':

monoclonal antibody paper: https://www.researchgate.net/publication/355806161_INCLUSION_OF_MONOCLONAL_ANTIBODIES_AGAINST_THE_VIRAL_LOAD_IN_THE_FIRST_LINE_OF_THERAPEUTIC_ACTION_FOR_CHRONIC_COVID_LONG_COVID

Ivermectin paper: https://www.researchgate.net/publication/344318845_POST-ACUTE_OR_PROLONGED_COVID-19_IVERMECTIN_TREATMENT_FOR_PATIENTS_WITH_PERSISTENT_SYMPTOMS_OR_POST-ACUTE

===David Putrino / Physical therapy===

'''Key treatment''': Physical therapy for dysautonomia

'''Theory''': Physical therapy can help ‘retrain’ the body’s autonomic nervous system (ANS). The ANS controls certain bodily functions without you having to think about it. For example, if you start doing exercise, your heart rate will go up and you will breathe more.
*Note: The ME/CFS community would argue that graded exercise therapy (GET) has caused more harm than good in people with ME/CFS. Physical therapy for long COVID could have similar problems. Putrino is aware that exercise causes symptoms to flare in long COVID patients so his treatment involves low levels of exercise that the patient can handle.

Putrino has multiple interviews on Youtube such as this one: https://youtu.be/ggyOnEpM0x8

===Bisaccia, Ricci, Fedorowski, Gallina, and colleagues / dysautonomia treatments ===

This group published a review paper on PASC / long COVID. It discusses '''dysautonomia''' treatment: https://www.mdpi.com/2308-3425/8/11/156/pdf

Key treatments (for dysautonomia): Non-pharmacological measures should be considered as first-line treatment options
* physical reconditioning with aerobic progressive exercise training programs
* compression garments / stockings
* liberal intake of water and salt
* drinking water before getting up in the morning
* sleeping with the head of the bed elevated
* careful avoidance of situations that can exacerbate symptoms (sleep deprivation, heat exposure, alcohol intake, or large or heavy meals)
* Physical maneuvers such as leg crossing, muscle tensing, and squatting have been shown to be effective in delaying/preventing vasovagal syncope if used at the onset of prodromal symptoms.

Pharmacological therapies have been frequently used in PASC patients (see Table 3 in their paper). These should be reserved for patients which do not respond to nonpharmacological therapies and are complementary to nonpharmacological measures in patients with severe, refractory symptoms. Recommended drugs have also been extensively used where symptoms persist. These include:
* volume expanders (fludrocortisone, desmopressin, and intravenous saline)
* heart rate inhibitors (propranolol, ivabradine, and pyridostigmine)
* vasoconstrictors (midodrine, octreotide, methylphenidate, and droxidopa)
* sympatholytic drugs (clonidine and methyldopa)

Decisions regarding which treatment to initiate should be guided by specific symptoms and hemodynamic patterns, i.e., tachycardic vs. hypotensive phenotypes.

The tachycardic phenotype can be treated with beta-blockers, i.e., metoprolol, or ivabradine. Recently, intravenous metoprolol has been tested for use in the treatment of acute respiratory distress in acute COVID-19 and was found to improve oxygenation and reduce alveolar inflammation, shortening the duration of invasive mechanical ventilation overall [92]. Large-scale randomized evidence is eagerly awaited to [figure out if the drug is helpful or not].

In patients with the hypotensive phenotype, droxidopa, midodrine, or pyridostigmine may be considered. In hypovolemic patients, intravenous saline infusion and intravascular volume expansion would be highly desirable, while the use of fludrocortisone and desmopressin should be reserved to patients with severe refractory symptoms. Sympatholytic drugs, such as clonidine and methyldopa, can be proposed to patients with hyperadrenergic features, including hyperhidrosis and tachycardia.

Beyond these drugs, immunological therapy with '''intravenous immunoglobulins [IVIG]''' has been proposed for compassionate use in a patient with autoimmune features

'''Diagnosis protocol''': Figure 2 in the paper shows a diagnosis algorithm to differentiate between PASC (long COVID) and other conditions that may resemble it. Some of the tests include:

* '''CRP (C-reactive protein) / PCT (procalcitonin)''' - markers of systemic inflammation and bacterial infection
* '''NT-proBNP''' - High levels can mean your heart isn't pumping as much blood as your body needs → heart failure
* '''TSH''' - thyroid stimulating hormone levels indicate a healthy/unhealthy thyroid
* '''Morning cortisol''' - cortisol level may show problems with the adrenal glands or pituitary gland
* '''Holter ECG''' - This portable device tracks the patient’s heart rhythm over 1 or 2 days.
* '''24-hour ambulatory blood pressure monitoring''' - portable device that tracks blood pressure.
* '''Exercise testing'''
* '''Valsalva maneuver''' - a breathing method that may slow your heart when it's beating too fast.
* '''Auto-antibody testing''' if known or suspected autoimmune condition
* '''Serum (blood levels of) histamine and tryptase testing''' if MCAS suspected. MCAS symptoms include flushing, headache, GI symptoms.

===Stellate ganglion block===

[[File:Stellate ganglion block patient outcomes.jpeg|thumb|Patient #1's outcomes reported in Figure 1 of the paper by Liu and Duricka.]]
[[File:Stellate ganglion block patient 2 outcomes.jpeg|thumb|Patient #2's outcomes reported in Figure 2 of the paper by Liu and Duricka.]]

The ''stellate ganglion'' is a collection of nerves that are part of the autonomic nervous system / sympathetic nervous system, which directs the body's rapid involuntary response to dangerous or stressful situations. "Block" refers to injecting a local anesthetic to block the activity of this set of nerves, allowing the regional autonomic nervous system to "reboot". It may help treat symptoms related to '''dysautonomia'''. The experimental treatment has been used prior to COVID by different doctors on various conditions.

A paper by Luke D Liu and Deborah L Duricka (https://doi.org/10.1016/j.jneuroim.2021.577784) presents a case series of two long COVID patients treated with a stellate ganglion block. Their outcomes were reported in figures 1 and 2 of the paper (click the thumbnails on the right to enlarge the figures). The paper notes that the mechanisms "for the durable central nervous system effects of the SGB in these conditions are unclear, delaying its broad acceptance as a valid treatment".

It is likely that the clinic has seen many patients and that the case reports only selectively highlight results from highly satisfied patients. As well, retrospectively-recalled outcomes and retrospective observational studies may have biases in their data.

===Mary Bowden / monoclonal antibodies ===

She uses '''monoclonal antibodies''' in addition to the FLCCC protocols to treat long haul (long COVID and post vaccination syndrome). See the 25 minute mark of this video: https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/FLCCC-WEBINAR-120121_FINAL:f?r=9U5LyeCuf2jpinYRxYjvNdaM6nQqsThF&t=1502
Bowden is based in Houston TX. breathemd.org

===Keith Berkowitz / intravenous vitamin C / LDN ===

In addition to other drugs/treatments like ivermectin, he uses '''intravenous vitamin C''' for the treatment of long COVID. See the 33 minute mark of this video - https://youtu.be/hEcQ2SdwEmI?t=1979

He uses '''low-dose naltrexone''' for MCAS (mast cell activation syndrome).

===BMJ treatment guidelines===

Many mainstream doctors will follow the treatment guidelines outlined in the British Medical Journal: https://www.bmj.com/content/370/bmj.m3026

'''Key treatments''': None (!!!). The guidelines argue that doctors shouldn’t try because “There are not yet definitive, evidence based recommendations for the management of post-acute covid-19.”

If a patient has blood clotting issues, the guidelines highlight “prophylactic anticoagulation”- giving anti-clotting drugs to prevent future blood clots.

'''Significance''': The medical establishment believes that doctors should avoid trying to treat the patient if they encounter weird health problems that they don’t understand.

===🇺🇸 CDC recommendations===

According to the CDC's webpage on the management of post-COVID conditions ([https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-management.html current version], [https://web.archive.org/web/20220113124332/https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-management.html archived version]), the CDC believes that patients may benefit from certain types of unproven treatments but not others.

* A conservative exercise-based rehabilitation plan may be indicated for patients with post-exertional malaise (symptoms that worsen following too much physical or mental exertion).
* Symptom management approaches for ME/CFS, fibromyalgia, post-treatment Lyme disease syndrome, dysautonomia, and MCAS may be useful in patients who share some of the symptoms.

Otherwise, doctors should discourage their patients from using other treatments that have been offered because they "lack evidence of efficacy or effectiveness, and could be harmful to patients". Healthcare professionals should inquire about any unprescribed medications, herbal remedies, supplements, or other treatments. Presumably, this is to discourage the patients from trying the 'wrong' treatments.

Doctors should also avoid extensive testing of long COVID patients due to "the increased risk for incidental findings, anxiety about abnormal results that do not have clinical significance, imaging-related radiation exposure, and cost" ([https://web.archive.org/web/20220113123758/https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-clinical-eval.html archived version]). However, testing should not be delayed when there are signs and symptoms of urgent and potentially life-threatening conditions (e.g., a blood clot in an artery in the lung, heart attack, pericarditis with effusion, stroke, kidney failure).

== Experimental drugs in clinical trials ==

Experimental drugs tend to be very difficult to get, so they may not be very relevant to patients. They generally do not have an established safety track record.

===Leronlimab===

Leronlimab is a CCR5 antagonist so its theoretical mechanism of action is the same as maraviroc (a drug used by the Bruce Patterson / covidlonghaulers.com group). Cytodyn's study of leronlimab on long COVID did not reach statistical significance (source: [https://www.globenewswire.com/news-release/2021/06/21/2250254/19782/en/CytoDyn-Inc-Announces-Positive-Preliminary-Results-of-Unblinded-Data-from-Long-Haulers-Trial-Showing-Greater-Improvement-in-Leronlimab-Group-over-Placebo-in-18-of-24-Symptoms.html Cytodyn press release]). Cytodyn claims that the trial was not designed to reach statistical significance and notes that the sample size was 56 patients. A larger trial would provide more evidence as to whether or not this drug (and perhaps CCR5 antagonists in general) is helpful.

Bruce Patterson was involved in a group of investors that is trying to take control of Cytodyn, the company which owns the right to this drug.

Gaylis and colleagues have published a pre-print on leronlimab for long COVID (https://doi.org/10.1093/cid/ciac226).

=== RSLV-132 ===

RSLV-132 is a protein designed to 'digest' RNA that is circulating in the blood, hopefully leading to a reduction in inflammation. Clinical trials started years ago with the intent of developing a drug to use against autoimmune conditions such as Sjogren's Syndrome (e.g. [https://clinicaltrials.gov/ct2/show/NCT03247686 NCT03247686]). The company does not seem to be pursuing a phase III trial for Sjogren's Syndrome. See https://resolvetherapeutics.com/product-candidates/rslv-132/

==== NCT03247686 ====

'''The present study will examine the role of circulating RNA complexed with autoantibodies and immune complexes and its role in activation of inflammatory pathways in patients with primary Sjogren's syndrome'''. The study will be conducted in a subset of Sjogren's patients who have elevated levels of autoantibodies and a pattern of elevated interferon-stimulated gene expression in blood cells. A number of biochemical and clinical parameters will be analyzed to determine the potential therapeutic utility of nuclease therapy in Sjogren's syndrome.

https://clinicaltrials.gov/ct2/show/NCT03247686

==== NCT04944121 ====

Phase 2 Study of RSLV-132 in Subjects With Long COVID

https://clinicaltrials.gov/ct2/show/NCT04944121

=== AXA1125 ===

AXA1125 is a drug originally developed to see if it is viable for the treatment of NASH, or 'fatty liver disease'. The drug is being trialed to see if resolving mitochondrial dysfunction will heal the fatigue associated with long COVID. See https://axcellatx.com/pipeline/axa1125/

=== BC 007 ===

BC 007 is designed to eliminate auto-antibodies against G protein-coupled receptors. Such auto-antibodies are found in patients with advanced heart failure, dilated cardiomyopathy, myocarditis, long COVID, dementia, ME/CFS, POTS, glaucoma, and other conditions.

BC 007 has yet to be proven for any health condition, although Berlin Cures has published case studies on individual patients.

* ''Case Report: Neutralization of Autoantibodies Targeting G-Protein-Coupled Receptors Improves Capillary Impairment and Fatigue Symptoms After COVID-19 Infection'' https://www.frontiersin.org/articles/10.3389/fmed.2021.754667/full
* ''Functional autoantibodies in patients with different forms of dementia'' https://doi.org/10.1371/journal.pone.0203253
* ''The aptamer BC 007 for treatment of dilated cardiomyopathy: evaluation in Doberman Pinschers of efficacy and outcomes'' https://doi.org/10.1002/ehf2.12628
* ''Functional autoantibodies in patients with different forms of dementia'' https://doi.org/10.1371/journal.pone.0192778

=== Phyto-V phytochemical capsule (undisclosed conflict of interest) ===

Professor Robert Thomas is the lead author of various papers on Phyto-V such as [https://doi.org/10.3390/covid2040031 this placebo-controlled trial paper]. The paper states that "The authors declare no conflict of interest". Nonetheless, the paper thanks Keep-Healthy.com for the donated probiotics; the Keep-Healthy.com website lists Robert Thomas as a "medical advisor" ([https://archive.ph/rUPK5 archive.is]). The same website has also advertised consultation services offered by Thomas ([https://web.archive.org/web/20210127124919/https://www.keep-healthy.com/professor-robert-thomas/ archive.org]).

Health Education Publications is listed as the owner of Keep-Healthy.com and is also the publisher of a 2010 book by Robert Thomas ([https://www.amazon.com/Lifestyle-After-Cancer-Robert-Thomas/dp/0955821215 amazon.com], [https://archive.ph/wip/J8tdc archive.ph]).

==Other conditions that might resemble long haul==

Patients should also consider the possibility that they may have a treatable condition that isn’t long haul. Unfortunately, many of these conditions may be difficult to diagnose.

===Breast implant injury (BII)===

As the name suggests, this only affects people with breast implants.

BII can affect anybody with an implant regardless of whether the implant is intact. It seems to affect all generations of breast implants. The treatment is straightforward: breast implant explantation (removal). There is controversy as to whether or not all of the scar tissue should be removed too.

While there is no test for BII, a MRI scan can reveal ruptured implants. A ruptured implant could drive the decision to have implants removed.

See the [[Breast_implant_illness_resources|BII resources page]] for more information.

===Iatrogenic botulism from Botox, Dysport, etc.===

This condition can only affect people who have botulinum toxin in their body, e.g. due to Botox injections. In some people, the toxin can spread to other areas of the body and affect nerve function outside of targeted areas. This can result in symptoms such as:
* Difficult swallowing (dysphagia)
* Drooping of the upper eyelid (ptosis)
* Diplopia (double vision)
* Systemic weakness
* Muscle paralysis

The Facebook group [https://www.facebook.com/groups/224009391310103 'Botox Dysport (Side Effects) Support'] has resources on this condition, with references to published scientific papers.

===Medical devices, joint replacements, IUDs, and other foreign objects in the body===

Medical devices and artificial joints can lead to an infection from bacteria or fungi such as Candida Albicans, in turn leading to chronic health problems.

Essure is a permanent birth control device that is no longer being sold. It was featured in the 2018 Netflix documentary ''The Bleeding Edge'' and was pulled off the US market shortly after the documentary premiered. Facebook support groups exist for Essure.

===Chronic Lyme (and Lyme+)===

There are various ways in which you can pick up a persistent infection of the various bacteria associated with Lyme disease. Lyme+ refers to all pathogens that can cause serious health problems and share similarities with chronic Lyme: difficult to diagnose and difficult to treat.

There is controversy as to whether or not chronic Lyme exists. For a good introduction to the topic, see DrBeen’s conversation with Steven Philips on Youtube: https://youtu.be/FqVlOfzZJH0

Lyme disease can be diagnosed by:
* Taking multiple photos of the tick bite. However, most people do not have a tick bite
* Blood tests. However, the blood tests aren’t reliable and have a very high rate of false negatives.
* Diagnose based on symptoms. (This diagnosis method isn’t reliable.) Typical symptoms include fever, headache, fatigue, and a characteristic “bullseye” skin rash called erythema migrans. See https://www.lymedisease.org/lyme-disease-symptom-checklist/ for a diagnosis checklist.
* Getting treated with a course of antibiotics too see if the patient develops a Jarisch-Herxheimer (“Herx”) reaction. The reaction is unpleasant and may lead to hospitalization.

Patient advocacy organizations like LymeDisease.org will have lots of information on chronic Lyme, its treatments, and information on how to find a ‘Lyme literate medical doctor’ specializing in this condition. Treatment may require several years and does not always succeed.

===Autoimmune conditions affecting the thyroid or brain===

Hashimoto’s disease is an autoimmune condition where the immune system attacks the thyroid gland. Its symptoms include:

* Fatigue and sluggishness
* Increased sensitivity to cold
* Depression

Autoimmune encephalitis is a very rare condition where the immune system attacks the brain. It causes moderate deficits of memory and cognition, often followed by suppressed levels of consciousness or coma. It can be misdiagnosed as schizophrenia.

If you have symptoms of either autoimmune condition, further investigation may be helpful.
Thyroid hormone levels in the blood can be tested.
The NMDA receptor antibody test can detect autoimmune encephalitis. However, many doctors may be unfamiliar with that test. For more information, you can read the book ''Brain on Fire'' or its Netflix adaptation.

One way to treat and test for autoimmune conditions is to try either of the following diets:
Water fasting. Drink water and don’t eat for a few days.
A meat-only elimination diet (“carnivore diet”).
You can find plenty of information about these diets online. They may have dangerous interactions with medications (e.g. because the diet can reverse underlying conditions and the drugs suddenly become dangerous when the underlying condition such as diabetes goes away). They likely have interactions with psych meds.

The Paleomedicina group of doctors in Hungary treats autoimmune conditions through diet. They provide online consultations and should have experience with the safe discontinuation of medications.

===HPV vaccine injury (Gardasil, Cervarix) and vaccines with aluminium-based adjuvants (e.g. anthrax)===

These vaccines have safety controversies somewhat similar to the COVID vaccines. Japan's usage of HPV vaccines has dropped to almost zero.

===Chiari, craniocervical instability (CCI), hypermobile EDS, and related mechanical issues===

A Chiari malformation refers to a part of the brain (cerebellum) that dangles down into the spinal column instead of holding its normal rounded shape. This unusual structure can be detected via a scan of the brain (e.g. MRI, CT, etc.). Because some people have a Chiari malformation without symptoms, diagnosis is based on both symptoms and an abnormal brain scan.

[[File:MRI of human brain with type-1 Arnold-Chiari malformation and herniated cerebellum.jpg]]

Chiari support groups and forums will have additional information on this condition.
* https://www.chiarisupport.org/
* https://www.chiariassociation.org/ has a list of doctors with experience in treating Chiari

The prevalence of Chiari, CCI, and hypermobile EDS tends to overlap. People with unusually flexible joints (without stretching or contortionist training) may be more likely to fit the diagnostic criteria for hypermobile EDS and Chiari.

===Tethered cord syndrome ===

Tethered cord syndrome is a rare condition in which the spinal cord is 'tethered' (attached) to the surrounding tissues of the spine. People with this condition may find it easier to walk using their toes and without using their heel ("toe walking").

===ME/CFS===

The tests for myalgic encephalitis / chronic fatigue syndrome aren’t great and neither are the treatments. Patients may want to rule out everything else first.

An interview with Dr. John Chia - https://youtu.be/LSucgoEvoUQ - outlines some tests and treatments for enterovirus infections. (*Note: Chia mentions remdesivir, a deadly drug that killed 1-3 patients in the French DisCoVeRy trial. Be careful with that drug because there must be a reason why its manufacturer abandoned its clinical trials for using remdesivir in early COVID treatment.)

ME-pedia has an overview of symptom management of ME/CFS - https://me-pedia.org/wiki/Primer_for_patients#Drugs_and_treatments

List of doctors and approaches

2022-05-24T16:48:15Z

Admin: /* Akiko Iwasaki / vaccination for long haulers */

==Doctors treating long haul COVID and vaccine injury (post vaccination syndrome)==

This is a list of doctors and doctor groups treating long haul. These health problems are new so ''there hasn’t been much research about what’s safe and effective''. Please become informed about the risks of medical experimentation!

===FLCCC===

'''Key treatments''': Ivermectin, a statin (atorvastatin), prednisone, fluvoxamine, and many other drugs.
For MCAS (mast cell activation syndrome, which a number of long haulers have): low-dose naltrexone (LDN) and various drugs

'''Theory''': Ivermectin's mechanism of action is unclear. It seems to work for long haul but not in all sufferers. Ivermectin may be beneficial because it binds to the spike protein, perhaps preventing an autoimmune reaction that occurs in some people but not others. It may also affect the way the immune system functions (immunomodulatory), which could explain why ivermectin applied on the skin (FDA approved as Soolantra) works for rosacea.

Dr. Been’s youtube channel has talks about fluvoxamine, MCAS (e.g. chats with Tina Peers and Lawrence Afrin), long haul, etc. etc.

His talk with Bruce Patterson and Ram Yogendra may explain why maraviroc is listed as a third-line treatment in the Jan 20222 protocol: https://odysee.com/@DrMobeenSyed:1/long-covid-discussion-with-dr.-bruce:f?r=9U5LyeCuf2jpinYRxYjvNdaM6nQqsThF

His talk with Keith Berkowitz on the FLCCC channel discusses LDN and the Jan 2022 I-RECOVER protocol: https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/FLCCC-WEBINAR-020222_FINAL-EDIT:e?r=9U5LyeCuf2jpinYRxYjvNdaM6nQqsThF

'''How to get more information''':
The I-RECOVER protocol can be found at https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/

A list of doctors friendly to the FLCCC protocols can be found here: https://covid19criticalcare.com/network-support/the-flccc-alliance/

'''Does it work? What we know so far''': Dr. Been talks to many other doctors and aggregates their shared knowledge and experience.

===Bruce Patterson / CovidLongHaulers.com group===

'''Key treatments''': A statin (pravastatin), maraviroc or other CCR5 antagonist, ?ivermectin?, avoiding exercise that makes you sweat, baby aspirin

'''Testing''': An inflammatory marker panel invented by Patterson’s company IncellDX. The panel was designed to specifically measure acute COVID and long haul COVID (PASC).

'''Their theory''': For some reason, the body cannot clear the S1 portion of spike protein from the body. It is the root cause of long haul through hyperimmunity, autoimmunity, or some combination of both hyperimmunity and autoimmunity. Hyperimmunity is when the immune system is overly active, leading to inflammation in blood vessels that cause the body to dysfunction. Autoimmunity is when the immune system starts attacking its host.

Since Patterson’s company makes medical tests, their approach is geared around “precision medicine”. The idea is to test the patient to figure out what’s wrong and to use those tests to guide treatment. That’s the theory anyways. In practice, their concierge service doctors may not necessarily practice precise medicine, e.g. they may recommend maraviroc even if CCL5 is not elevated.

'''For more information''': Search Youtube for drbeen bruce patterson. You’ll find talks between Dr. Mobeen Syed and Dr. Bruce Patterson about the treatment of long haul.
You can sign up for testing at covidlonghaulers.com

====Statin and maraviroc effectiveness ====

On [https://youtu.be/wCEiDAUrOG4?t=600 a podcast with Dr. Drew], Patterson and Eric Osgood briefly discuss the trial design of their anticipated clinical trial. The design of the trial anticipates/suggests that many patients won’t respond to a statin plus maraviroc. Osgood draws from the lessons learned from clinical trials studying chronic pain:

<blockquote>...chronic pain is a very difficult uh condition to study because a lot of the study drugs are only going to work on maybe 30 or so percentage of the- of that particular disease population and then it is so prone to the placebo effect as well as to people maybe not being that precise or accurate in the way that they report and so there is a need often to do enriched designs or enriched enrollment designs in order to better demonstrate proof of concept...</blockquote>

A paper put out by the Patterson group (''Targeting the Monocytic-Endothelial-Platelet Axis with Maraviroc and Pravastatin as a Therapeutic Option to Treat Long COVID/ Post-Acute Sequelae of COVID (PASC)'' https://www.researchsquare.com/article/rs-1344323/v1) found a statistically significant benefit to pravastatin plus maraviroc (n=18). However, the larger Cytodyn RCT on the CCR5 antagonist leronlimab (n=56) did ''not'' find a statistically significant benefit. See [[List_of_doctors_and_approaches#Leronlimab|the leronlimab section]] for more information on leronlimab.

The Patterson group study had a retrospective observational design and would be less reliable than a RCT (randomized controlled trial). The lengthy survey process used in the Patterson group study may heavily bias the results because maraviroc+statin non-responders may not necessarily spend time on the phone completing lengthy questionnaires, especially if they have cognitive difficulties from long haul. The paper does not describe the drop-out rate. It also does not fully describe how 18 patients were selected out of the thousands of patients that have done an IncellDX panel test.

===Mast Cell Activation Syndrome specialists===

'''Theory''': Overly active mast cells are responsible for a wide range of symptoms.

MCAS is a syndrome that has been researched for many years before COVID. While it is difficult to diagnose and treat, experimentation with various drugs (some of them are sold over-the-counter) may yield something that will alleviate the patient's symptoms. MCAS seems to be common in long haulers.

'''How to get more information''': A MCAS diagnosis and treatment guideline by Afrin et al. can be found at https://doi.org/10.3109/07853890.2016.1161231

Youtube has many interviews with MCAS specialists such as Lawrence Afrin, Theoharis Theoharides and Tina Peers.

The patient support organization ''The Mast Cell Disease Society'' has a list of medical centers treating MCAS at https://tmsforacure.org/resources/finding-a-physician/

===HELP Apheresis===

'''Key treatment''': Apheresis. Available in Germany.

'''Theory''': Apheresis removes microscopic blood clots that are causing health problems.

'''How to get more information''': You can search Facebook for groups with “apheresis” in their name.

Gez Medinger’s Youtube channel has a talk with his friend Dr. Asad Khan about this treatment. https://youtu.be/rEJDjfj7oi8

A youtube interview with Resia Pretorius has a brief segment on HELP apheresis. https://youtu.be/C8tzTmVwEpM

===Microclots / Etheresia (Resia) Pretorius and colleagues===

'''Key treatment''': A combination of drugs is used to reduce microclots in long COVID patients: Clopidogrel, Aspirin, a direct oral anticoagulant (Apixiban), plus a proton pump inhibitor (pantoprazole). “''Such a regime must only be followed under strict and qualified medical guidance to obviate any dangers''”; Resia warns that the therapy carries (significant) risk and should only be done under proper medical supervision. Patients were pre-screened with medical tests (e.g. Thromboelastography) to determine if microclots existed and to determine if the patient was a candidate for therapy.

'''Theory''': Microclots (tiny blood clots) are found in long COVID patients and are the source of major symptoms that they experience. Academic papers on this subject include:

* ''Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae of COVID-19 (PASC) is accompanied by increased levels of antiplasmin'' https://doi.org/10.1186/s12933-021-01359-7
* ''Huynh, A., Kelton, J.G., Arnold, D.M. et al. Antibody epitopes in vaccine-induced immune thrombotic thrombocytopaenia''. Nature 596, 565–569 (2021). https://doi.org/10.1038/s41586-021-03744-4

'''For more information''': There is a Youtube interview with Dr. Resia Pretorius on LongCovid microclots (spike protein, HELP apheresis + other topics) https://youtu.be/C8tzTmVwEpM

Pretorius and her colleagues have published a pre-print on the therapy they tried on 24 patients: https://www.researchsquare.com/article/rs-1205453/v1

'''Does it work? What we know so far''': The pre-print mentioned previously strangely contains very little data on how much patients improved on the therapy. The abstract claims: “Each of the 24 treated cases reported that their main symptoms were resolved and fatigue as the main symptom was relieved, and this was also reflected in a decrease of both the fibrin amyloid microclots and platelet pathology scores.”

[https://www.reddit.com/r/covidlonghaulers/comments/t5ezh1/have_you_tried_blood_thinners_did_that_help/ Survey data from r/CovidLongHaulers] shows that 11/22 (50%) of poll respondents reported small or significant improvement in symptoms from blood thinners, substantially below the 100% reported in the pre-print.

===Berlin Cures / Gerd Wallukat===

'''Key treatment''': BC 007 (experimental drug), removal of antibodies from the blood via apheresis

'''Testing''': Auto-antibody test. They are one of three German labs providing novel auto-antibody tests (see [[Emerging_autoantibody_lab_tests|here]]).

'''Theory''': Autoimmunity. The body is producing autoantibodies that engage in “friendly fire” and attack specific host tissues instead of foreign antigens (invaders and other things that shouldn’t be in the body).

'''Resources regarding this group’s work''':

https://www.fau.eu/2021/07/06/news/medication-for-autoantibodies-also-effective-for-long-covid/

https://berlincures.de/

https://youtu.be/XHaDCBXWArU - “...we assume that the immunoadsorption or plasmapheresis [which get rid of antibodies that cause health problems] represent a new therapeutic option to treat patients…”

===Takashi Yamamura===

Key treatment: corticosteroids (e.g. prednisone), IVIG, and treatments used for rheumatoid arthritis (there are a lot of them).

Theory: It is likely that there is some sort of autoimmune component associated with long haulers, e.g. researchers can measure auto-antibodies in patients. In theory, doctors could take treatments that work on classic autoimmune conditions like rheumatoid arthritis and apply those treatments to long haulers. (In practice, Bruce Patterson reports that low-dose corticosteroids seem to work better than high-dose. That isn’t the case with classic autoimmune conditions.)

Classic autoimmune conditions are regularly treated by suppressing the immune system with drugs. IVIG is also thought to be beneficial for autoimmune conditions.

Avindra Nath (NIH) and Takashi Yamamura discuss ME/CFS and long COVID in a discussion available on Youtube: https://youtu.be/xMFCNtoZWIw?t=1096

==== IVIG effectiveness ====

[https://www.cadth.ca/sites/default/files/pdf/htis/2018/RC0962%20Neurology%20Off-Label%20IVIG%20Final.pdf A report by the Canadian government-funded organization CADTH] summarizes various meta-analyses on the off-label use of IVIG. Most of the systematic reviews found that IVIG did no better than placebo. Two randomized controlled trials of IVIG on postpolio syndrome found no statistically significant benefit to IVIG compared to placebo, with the possibility of some treatment-related harm in the IVIG group.

<blockquote>IVIG was also no better than placebo for postpolio syndrome and reporting of adverse events was lacking</blockquote>

Various articles in scientific journals advocate for the use of IVIG, as listed on the [[IVIG_approval_resources#Scientific_papers_discussing_IVIG_treatment_of_conditions_commonly_found_in_long_haulers|IVIG approval resources page]].

The NIH believes that there may be some merit to IVIG and corticosteroids in the treatment of long COVID patients. A [https://www.science.org/content/article/rare-cases-coronavirus-vaccines-may-cause-long-covid-symptoms ''Science'' magazine article] notes:

<blockquote>Some of the patients who spoke with Science say medications that tamp down the immune system have offered at least a measure of relief. Nath noticed the same phenomenon. He hopes results from an NIH clinical trial testing IVIG and intravenous steroids in Long Covid patients “will be applicable to the vaccine-related complications.” None of the patients with whom Science spoke has fully recovered.</blockquote>

==== Rituximab effectiveness ====

It is unclear if rituximab is being used in long haulers, although it is a drug used to treat rheumatoid arthritis. For ME/CFS, rituximab did not show a benefit in the 151 patients randomized in a controlled trial (see https://doi.org/10.7326/M18-1451).

=== Non-standard auto-antibody tests ===

The following chart shows disorders and the labs offering tests to determine if there are auto-antibodies related to those conditions. Auto-antibodies would suggest that the condition is being caused by the body attacking itself. If so, existing treatments for autoimmunity may be helpful.

[[File:Panel_tests_available_from_5_labs.png]]

See the page on [[Emerging_autoantibody_lab_tests|non-standard auto-antibody tests]] for more information.

=== Plasma exchange / apheresis ===

'''Theory:''' Whereas intravenous immunoglobulin (IVIG) therapy injects donated antibodies into a patient, plasma exchange will remove the patient's existing antibodies first before replacing them with donated antibodies. The theory is that problematic auto-antibodies are removed and replaced with non-pathogenic antibodies from donors. Plasma exchange is usually combined with a therapy to suppress the immune system so that the patient does not create more problematic auto-antibodies.

Note that IVIG contains auto-antibodies too because healthy donors have auto-antibodies, but at lower rates than unhealthy people (see https://www.jaad.org/article/S0190-9622(08)00939-0/fulltext#relatedArticles).

Plasma exchange is known by other names such as apheresis, plasmaphersis, TPE (therapeutic plasma exchange), PE, PET (PE therapy), and PLEX. It is not the same as HELP apheresis. HELP apheresis substitutes ''clotting-related'' components of the blood (and other things such as pathogens associated with those portions of the blood) while plasma exchange focuses on substituting the ''antibody-related'' components of the blood.

'''More information:'''
* A Youtube video from Yale Medicine explains apheresis: https://www.youtube.com/watch?v=8mnOUoI3bDk&ab_channel=YaleMedicine
* Avindra Nath, a researcher at NIH, talks about long COVID treatment: https://youtu.be/YpfHoz22ePk?t=1952
* A letter to the editor discusses PE as a treatment for encephalitis (brain inflammation) caused by acute COVID-19: https://doi.org/10.1093/brain/awaa337

===Gustavo Aguirre Chang===

'''Key treatments''': ivermectin, monoclonal antibodies, HELP apheresis

'''Theory''': Monoclonal antibodies treat a persistent SARS-CoV-2 infection that is causing long COVID. Ivermectin is an antiviral that works against SARS-CoV-2.

'''More information''':

monoclonal antibody paper: https://www.researchgate.net/publication/355806161_INCLUSION_OF_MONOCLONAL_ANTIBODIES_AGAINST_THE_VIRAL_LOAD_IN_THE_FIRST_LINE_OF_THERAPEUTIC_ACTION_FOR_CHRONIC_COVID_LONG_COVID

Ivermectin paper: https://www.researchgate.net/publication/344318845_POST-ACUTE_OR_PROLONGED_COVID-19_IVERMECTIN_TREATMENT_FOR_PATIENTS_WITH_PERSISTENT_SYMPTOMS_OR_POST-ACUTE

===David Putrino / Physical therapy===

'''Key treatment''': Physical therapy for dysautonomia

'''Theory''': Physical therapy can help ‘retrain’ the body’s autonomic nervous system (ANS). The ANS controls certain bodily functions without you having to think about it. For example, if you start doing exercise, your heart rate will go up and you will breathe more.
*Note: The ME/CFS community would argue that graded exercise therapy (GET) has caused more harm than good in people with ME/CFS. Physical therapy for long COVID could have similar problems. Putrino is aware that exercise causes symptoms to flare in long COVID patients so his treatment involves low levels of exercise that the patient can handle.

Putrino has multiple interviews on Youtube such as this one: https://youtu.be/ggyOnEpM0x8

===Bisaccia, Ricci, Fedorowski, Gallina, and colleagues / dysautonomia treatments ===

This group published a review paper on PASC / long COVID. It discusses '''dysautonomia''' treatment: https://www.mdpi.com/2308-3425/8/11/156/pdf

Key treatments (for dysautonomia): Non-pharmacological measures should be considered as first-line treatment options
* physical reconditioning with aerobic progressive exercise training programs
* compression garments / stockings
* liberal intake of water and salt
* drinking water before getting up in the morning
* sleeping with the head of the bed elevated
* careful avoidance of situations that can exacerbate symptoms (sleep deprivation, heat exposure, alcohol intake, or large or heavy meals)
* Physical maneuvers such as leg crossing, muscle tensing, and squatting have been shown to be effective in delaying/preventing vasovagal syncope if used at the onset of prodromal symptoms.

Pharmacological therapies have been frequently used in PASC patients (see Table 3 in their paper). These should be reserved for patients which do not respond to nonpharmacological therapies and are complementary to nonpharmacological measures in patients with severe, refractory symptoms. Recommended drugs have also been extensively used where symptoms persist. These include:
* volume expanders (fludrocortisone, desmopressin, and intravenous saline)
* heart rate inhibitors (propranolol, ivabradine, and pyridostigmine)
* vasoconstrictors (midodrine, octreotide, methylphenidate, and droxidopa)
* sympatholytic drugs (clonidine and methyldopa)

Decisions regarding which treatment to initiate should be guided by specific symptoms and hemodynamic patterns, i.e., tachycardic vs. hypotensive phenotypes.

The tachycardic phenotype can be treated with beta-blockers, i.e., metoprolol, or ivabradine. Recently, intravenous metoprolol has been tested for use in the treatment of acute respiratory distress in acute COVID-19 and was found to improve oxygenation and reduce alveolar inflammation, shortening the duration of invasive mechanical ventilation overall [92]. Large-scale randomized evidence is eagerly awaited to [figure out if the drug is helpful or not].

In patients with the hypotensive phenotype, droxidopa, midodrine, or pyridostigmine may be considered. In hypovolemic patients, intravenous saline infusion and intravascular volume expansion would be highly desirable, while the use of fludrocortisone and desmopressin should be reserved to patients with severe refractory symptoms. Sympatholytic drugs, such as clonidine and methyldopa, can be proposed to patients with hyperadrenergic features, including hyperhidrosis and tachycardia.

Beyond these drugs, immunological therapy with '''intravenous immunoglobulins [IVIG]''' has been proposed for compassionate use in a patient with autoimmune features

'''Diagnosis protocol''': Figure 2 in the paper shows a diagnosis algorithm to differentiate between PASC (long COVID) and other conditions that may resemble it. Some of the tests include:

* '''CRP (C-reactive protein) / PCT (procalcitonin)''' - markers of systemic inflammation and bacterial infection
* '''NT-proBNP''' - High levels can mean your heart isn't pumping as much blood as your body needs → heart failure
* '''TSH''' - thyroid stimulating hormone levels indicate a healthy/unhealthy thyroid
* '''Morning cortisol''' - cortisol level may show problems with the adrenal glands or pituitary gland
* '''Holter ECG''' - This portable device tracks the patient’s heart rhythm over 1 or 2 days.
* '''24-hour ambulatory blood pressure monitoring''' - portable device that tracks blood pressure.
* '''Exercise testing'''
* '''Valsalva maneuver''' - a breathing method that may slow your heart when it's beating too fast.
* '''Auto-antibody testing''' if known or suspected autoimmune condition
* '''Serum (blood levels of) histamine and tryptase testing''' if MCAS suspected. MCAS symptoms include flushing, headache, GI symptoms.

===Stellate ganglion block===

[[File:Stellate ganglion block patient outcomes.jpeg|thumb|Patient #1's outcomes reported in Figure 1 of the paper by Liu and Duricka.]]
[[File:Stellate ganglion block patient 2 outcomes.jpeg|thumb|Patient #2's outcomes reported in Figure 2 of the paper by Liu and Duricka.]]

The ''stellate ganglion'' is a collection of nerves that are part of the autonomic nervous system / sympathetic nervous system, which directs the body's rapid involuntary response to dangerous or stressful situations. "Block" refers to injecting a local anesthetic to block the activity of this set of nerves, allowing the regional autonomic nervous system to "reboot". It may help treat symptoms related to '''dysautonomia'''. The experimental treatment has been used prior to COVID by different doctors on various conditions.

A paper by Luke D Liu and Deborah L Duricka (https://doi.org/10.1016/j.jneuroim.2021.577784) presents a case series of two long COVID patients treated with a stellate ganglion block. Their outcomes were reported in figures 1 and 2 of the paper (click the thumbnails on the right to enlarge the figures). The paper notes that the mechanisms "for the durable central nervous system effects of the SGB in these conditions are unclear, delaying its broad acceptance as a valid treatment".

It is likely that the clinic has seen many patients and that the case reports only selectively highlight results from highly satisfied patients. As well, retrospectively-recalled outcomes and retrospective observational studies may have biases in their data.

=== Akiko Iwasaki / vaccination for long haulers ===

'''Key treatment''': COVID vaccine

'''Theory''': COVID vaccines seem to help many people suffering from long COVID (but not vaccine injury). It also makes symptoms worse in some long haulers. A viral reservoir of SARS-CoV-2 would explain why vaccination helps with symptoms in those who benefit from vaccination.

Iwasaki is doing a study on long haulers who plan on taking a COVID vaccine. They will receive blood tests that may not be commercially available. Participants must be close to New Haven, CT, USA. https://www.survivorcorps.com/yale

While the results of that study do not seem to be available yet, Iwasaki ([https://twitter.com/VirusesImmunity/status/1521905071172239361 @VirusesImmunity]) and her colleague Harlan Krumholz are currently enrolling for a study on post-vaccine syndromes (along with long COVID and post-acute infection syndromes). She is certainly recognizing vaccine injury as something that is worth studying.

Iwasaki has various presentations on Youtube such as:
https://youtu.be/ggyOnEpM0x8
https://youtu.be/kFqK2M_FK7o

===Mary Bowden / monoclonal antibodies ===

She uses '''monoclonal antibodies''' in addition to the FLCCC protocols to treat long haul (long COVID and post vaccination syndrome). See the 25 minute mark of this video: https://odysee.com/@FrontlineCovid19CriticalCareAlliance:c/FLCCC-WEBINAR-120121_FINAL:f?r=9U5LyeCuf2jpinYRxYjvNdaM6nQqsThF&t=1502
Bowden is based in Houston TX. breathemd.org

===Keith Berkowitz / intravenous vitamin C / LDN ===

In addition to other drugs/treatments like ivermectin, he uses '''intravenous vitamin C''' for the treatment of long COVID. See the 33 minute mark of this video - https://youtu.be/hEcQ2SdwEmI?t=1979

He uses '''low-dose naltrexone''' for MCAS (mast cell activation syndrome).

===BMJ treatment guidelines===

Many mainstream doctors will follow the treatment guidelines outlined in the British Medical Journal: https://www.bmj.com/content/370/bmj.m3026

'''Key treatments''': None (!!!). The guidelines argue that doctors shouldn’t try because “There are not yet definitive, evidence based recommendations for the management of post-acute covid-19.”

If a patient has blood clotting issues, the guidelines highlight “prophylactic anticoagulation”- giving anti-clotting drugs to prevent future blood clots.

'''Significance''': The medical establishment believes that doctors should avoid trying to treat the patient if they encounter weird health problems that they don’t understand.

===🇺🇸 CDC recommendations===

According to the CDC's webpage on the management of post-COVID conditions ([https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-management.html current version], [https://web.archive.org/web/20220113124332/https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-management.html archived version]), the CDC believes that patients may benefit from certain types of unproven treatments but not others.

* A conservative exercise-based rehabilitation plan may be indicated for patients with post-exertional malaise (symptoms that worsen following too much physical or mental exertion).
* Symptom management approaches for ME/CFS, fibromyalgia, post-treatment Lyme disease syndrome, dysautonomia, and MCAS may be useful in patients who share some of the symptoms.

Otherwise, doctors should discourage their patients from using other treatments that have been offered because they "lack evidence of efficacy or effectiveness, and could be harmful to patients". Healthcare professionals should inquire about any unprescribed medications, herbal remedies, supplements, or other treatments. Presumably, this is to discourage the patients from trying the 'wrong' treatments.

Doctors should also avoid extensive testing of long COVID patients due to "the increased risk for incidental findings, anxiety about abnormal results that do not have clinical significance, imaging-related radiation exposure, and cost" ([https://web.archive.org/web/20220113123758/https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-clinical-eval.html archived version]). However, testing should not be delayed when there are signs and symptoms of urgent and potentially life-threatening conditions (e.g., a blood clot in an artery in the lung, heart attack, pericarditis with effusion, stroke, kidney failure).

== Experimental drugs in clinical trials ==

Experimental drugs tend to be very difficult to get, so they may not be very relevant to patients. They generally do not have an established safety track record.

===Leronlimab===

Leronlimab is a CCR5 antagonist so its theoretical mechanism of action is the same as maraviroc (a drug used by the Bruce Patterson / covidlonghaulers.com group). Cytodyn's study of leronlimab on long COVID did not reach statistical significance (source: [https://www.globenewswire.com/news-release/2021/06/21/2250254/19782/en/CytoDyn-Inc-Announces-Positive-Preliminary-Results-of-Unblinded-Data-from-Long-Haulers-Trial-Showing-Greater-Improvement-in-Leronlimab-Group-over-Placebo-in-18-of-24-Symptoms.html Cytodyn press release]). Cytodyn claims that the trial was not designed to reach statistical significance and notes that the sample size was 56 patients. A larger trial would provide more evidence as to whether or not this drug (and perhaps CCR5 antagonists in general) is helpful.

Bruce Patterson was involved in a group of investors that is trying to take control of Cytodyn, the company which owns the right to this drug.

Gaylis and colleagues have published a pre-print on leronlimab for long COVID (https://doi.org/10.1093/cid/ciac226).

=== RSLV-132 ===

RSLV-132 is a protein designed to 'digest' RNA that is circulating in the blood, hopefully leading to a reduction in inflammation. Clinical trials started years ago with the intent of developing a drug to use against autoimmune conditions such as Sjogren's Syndrome (e.g. [https://clinicaltrials.gov/ct2/show/NCT03247686 NCT03247686]). The company does not seem to be pursuing a phase III trial for Sjogren's Syndrome. See https://resolvetherapeutics.com/product-candidates/rslv-132/

==== NCT03247686 ====

'''The present study will examine the role of circulating RNA complexed with autoantibodies and immune complexes and its role in activation of inflammatory pathways in patients with primary Sjogren's syndrome'''. The study will be conducted in a subset of Sjogren's patients who have elevated levels of autoantibodies and a pattern of elevated interferon-stimulated gene expression in blood cells. A number of biochemical and clinical parameters will be analyzed to determine the potential therapeutic utility of nuclease therapy in Sjogren's syndrome.

https://clinicaltrials.gov/ct2/show/NCT03247686

==== NCT04944121 ====

Phase 2 Study of RSLV-132 in Subjects With Long COVID

https://clinicaltrials.gov/ct2/show/NCT04944121

=== AXA1125 ===

AXA1125 is a drug originally developed to see if it is viable for the treatment of NASH, or 'fatty liver disease'. The drug is being trialed to see if resolving mitochondrial dysfunction will heal the fatigue associated with long COVID. See https://axcellatx.com/pipeline/axa1125/

=== BC 007 ===

BC 007 is designed to eliminate auto-antibodies against G protein-coupled receptors. Such auto-antibodies are found in patients with advanced heart failure, dilated cardiomyopathy, myocarditis, long COVID, dementia, ME/CFS, POTS, glaucoma, and other conditions.

BC 007 has yet to be proven for any health condition, although Berlin Cures has published case studies on individual patients.

* ''Case Report: Neutralization of Autoantibodies Targeting G-Protein-Coupled Receptors Improves Capillary Impairment and Fatigue Symptoms After COVID-19 Infection'' https://www.frontiersin.org/articles/10.3389/fmed.2021.754667/full
* ''Functional autoantibodies in patients with different forms of dementia'' https://doi.org/10.1371/journal.pone.0203253
* ''The aptamer BC 007 for treatment of dilated cardiomyopathy: evaluation in Doberman Pinschers of efficacy and outcomes'' https://doi.org/10.1002/ehf2.12628
* ''Functional autoantibodies in patients with different forms of dementia'' https://doi.org/10.1371/journal.pone.0192778

=== Phyto-V phytochemical capsule (undisclosed conflict of interest) ===

Professor Robert Thomas is the lead author of various papers on Phyto-V such as [https://doi.org/10.3390/covid2040031 this placebo-controlled trial paper]. The paper states that "The authors declare no conflict of interest". Nonetheless, the paper thanks Keep-Healthy.com for the donated probiotics; the Keep-Healthy.com website lists Robert Thomas as a "medical advisor" ([https://archive.ph/rUPK5 archive.is]). The same website has also advertised consultation services offered by Thomas ([https://web.archive.org/web/20210127124919/https://www.keep-healthy.com/professor-robert-thomas/ archive.org]).

Health Education Publications is listed as the owner of Keep-Healthy.com and is also the publisher of a 2010 book by Robert Thomas ([https://www.amazon.com/Lifestyle-After-Cancer-Robert-Thomas/dp/0955821215 amazon.com], [https://archive.ph/wip/J8tdc archive.ph]).

==Other conditions that might resemble long haul==

Patients should also consider the possibility that they may have a treatable condition that isn’t long haul. Unfortunately, many of these conditions may be difficult to diagnose.

===Breast implant injury (BII)===

As the name suggests, this only affects people with breast implants.

BII can affect anybody with an implant regardless of whether the implant is intact. It seems to affect all generations of breast implants. The treatment is straightforward: breast implant explantation (removal). There is controversy as to whether or not all of the scar tissue should be removed too.

While there is no test for BII, a MRI scan can reveal ruptured implants. A ruptured implant could drive the decision to have implants removed.

See the [[Breast_implant_illness_resources|BII resources page]] for more information.

===Iatrogenic botulism from Botox, Dysport, etc.===

This condition can only affect people who have botulinum toxin in their body, e.g. due to Botox injections. In some people, the toxin can spread to other areas of the body and affect nerve function outside of targeted areas. This can result in symptoms such as:
* Difficult swallowing (dysphagia)
* Drooping of the upper eyelid (ptosis)
* Diplopia (double vision)
* Systemic weakness
* Muscle paralysis

The Facebook group [https://www.facebook.com/groups/224009391310103 'Botox Dysport (Side Effects) Support'] has resources on this condition, with references to published scientific papers.

===Medical devices, joint replacements, IUDs, and other foreign objects in the body===

Medical devices and artificial joints can lead to an infection from bacteria or fungi such as Candida Albicans, in turn leading to chronic health problems.

Essure is a permanent birth control device that is no longer being sold. It was featured in the 2018 Netflix documentary ''The Bleeding Edge'' and was pulled off the US market shortly after the documentary premiered. Facebook support groups exist for Essure.

===Chronic Lyme (and Lyme+)===

There are various ways in which you can pick up a persistent infection of the various bacteria associated with Lyme disease. Lyme+ refers to all pathogens that can cause serious health problems and share similarities with chronic Lyme: difficult to diagnose and difficult to treat.

There is controversy as to whether or not chronic Lyme exists. For a good introduction to the topic, see DrBeen’s conversation with Steven Philips on Youtube: https://youtu.be/FqVlOfzZJH0

Lyme disease can be diagnosed by:
* Taking multiple photos of the tick bite. However, most people do not have a tick bite
* Blood tests. However, the blood tests aren’t reliable and have a very high rate of false negatives.
* Diagnose based on symptoms. (This diagnosis method isn’t reliable.) Typical symptoms include fever, headache, fatigue, and a characteristic “bullseye” skin rash called erythema migrans. See https://www.lymedisease.org/lyme-disease-symptom-checklist/ for a diagnosis checklist.
* Getting treated with a course of antibiotics too see if the patient develops a Jarisch-Herxheimer (“Herx”) reaction. The reaction is unpleasant and may lead to hospitalization.

Patient advocacy organizations like LymeDisease.org will have lots of information on chronic Lyme, its treatments, and information on how to find a ‘Lyme literate medical doctor’ specializing in this condition. Treatment may require several years and does not always succeed.

===Autoimmune conditions affecting the thyroid or brain===

Hashimoto’s disease is an autoimmune condition where the immune system attacks the thyroid gland. Its symptoms include:

* Fatigue and sluggishness
* Increased sensitivity to cold
* Depression

Autoimmune encephalitis is a very rare condition where the immune system attacks the brain. It causes moderate deficits of memory and cognition, often followed by suppressed levels of consciousness or coma. It can be misdiagnosed as schizophrenia.

If you have symptoms of either autoimmune condition, further investigation may be helpful.
Thyroid hormone levels in the blood can be tested.
The NMDA receptor antibody test can detect autoimmune encephalitis. However, many doctors may be unfamiliar with that test. For more information, you can read the book ''Brain on Fire'' or its Netflix adaptation.

One way to treat and test for autoimmune conditions is to try either of the following diets:
Water fasting. Drink water and don’t eat for a few days.
A meat-only elimination diet (“carnivore diet”).
You can find plenty of information about these diets online. They may have dangerous interactions with medications (e.g. because the diet can reverse underlying conditions and the drugs suddenly become dangerous when the underlying condition such as diabetes goes away). They likely have interactions with psych meds.

The Paleomedicina group of doctors in Hungary treats autoimmune conditions through diet. They provide online consultations and should have experience with the safe discontinuation of medications.

===HPV vaccine injury (Gardasil, Cervarix) and vaccines with aluminium-based adjuvants (e.g. anthrax)===

These vaccines have safety controversies somewhat similar to the COVID vaccines. Japan's usage of HPV vaccines has dropped to almost zero.

===Chiari, craniocervical instability (CCI), hypermobile EDS, and related mechanical issues===

A Chiari malformation refers to a part of the brain (cerebellum) that dangles down into the spinal column instead of holding its normal rounded shape. This unusual structure can be detected via a scan of the brain (e.g. MRI, CT, etc.). Because some people have a Chiari malformation without symptoms, diagnosis is based on both symptoms and an abnormal brain scan.

[[File:MRI of human brain with type-1 Arnold-Chiari malformation and herniated cerebellum.jpg]]

Chiari support groups and forums will have additional information on this condition.
* https://www.chiarisupport.org/
* https://www.chiariassociation.org/ has a list of doctors with experience in treating Chiari

The prevalence of Chiari, CCI, and hypermobile EDS tends to overlap. People with unusually flexible joints (without stretching or contortionist training) may be more likely to fit the diagnostic criteria for hypermobile EDS and Chiari.

===Tethered cord syndrome ===

Tethered cord syndrome is a rare condition in which the spinal cord is 'tethered' (attached) to the surrounding tissues of the spine. People with this condition may find it easier to walk using their toes and without using their heel ("toe walking").

===ME/CFS===

The tests for myalgic encephalitis / chronic fatigue syndrome aren’t great and neither are the treatments. Patients may want to rule out everything else first.

An interview with Dr. John Chia - https://youtu.be/LSucgoEvoUQ - outlines some tests and treatments for enterovirus infections. (*Note: Chia mentions remdesivir, a deadly drug that killed 1-3 patients in the French DisCoVeRy trial. Be careful with that drug because there must be a reason why its manufacturer abandoned its clinical trials for using remdesivir in early COVID treatment.)

ME-pedia has an overview of symptom management of ME/CFS - https://me-pedia.org/wiki/Primer_for_patients#Drugs_and_treatments

Newly injured guide

2022-04-08T13:15:25Z

Admin: /* Other medical tests (some of which you can do at home) */

==Vaccine injuries aren’t new==

[[File:Japan hpv vaccine use.jpg|thumb|HPV vaccine usage in Japan. Source: https://www.hpvworld.com/articles/hpv-vaccination-in-japan-a-researcher-s-view/]]

Vaccine safety issues have surfaced in the past:

* Japan stopped using HPV vaccines due to safety issues.
* Lymerix, a Lyme vaccine, was pulled off the market despite demonstrating effectiveness.
* Pandemrix, a H1N1 vaccine, was pulled off the market after safety issues regarding narcolepsy surfaced.
* Researchers have published papers on autoimmune issues with aluminium-based adjuvants used in vaccines.

These safety issues have existed for a long time. The HPV vaccines continue to generate billions of dollars in sales each year despite Japan discontinuing their use. Unfortunately, there has not been much progress in treating vaccine injury. This is part of the reason why some doctors are dismissive towards the vaccine injured- they don’t know how to treat those patients.

Mainstream Western medicine ''does'' recognize certain rare conditions like Guillain Barre Syndrome as vaccine injuries.

* A diagnosis of such a condition makes it easier to get medical treatment, which is generally experimental.
* Those particular diagnoses may make it less difficult to get some financial compensation for vaccine injury.

==Treatment==

Some good news: it seems like many vaccine injured people will see significant improvement (or recovery) after several months. It is unclear if any treatment speeds up or slows down that process.

Because COVID-19 vaccines are so new, treatment is basically medical experimentation that tries to fix the problems caused by medical experimentation.

COVID-19 vaccine injury has many similarities to these other conditions:

* Long COVID / PASC (Post-acute Sequelae of COVID-19)
* ME/CFS
* Chronic Lyme
* Lyme+ (this is basically Lyme-like health problems caused by non-Lyme bacteria, viruses, parasites, etc.)
* Post viral syndrome
* ASIA (Autoimmune/Inflammatory syndrome induced by adjuvants)
* Gulf War Syndrome
* Breast implant illness / Silicone implant incompatibility syndrome
* Mast Cell Activation Syndrome
* Dysautonomia, POTS

It is theoretically possible to repurpose existing treatments and cures so that they can be applied to vaccine injury. If you happen to have medical devices, breast implants, or other foreign objects in your body, removing that object may be a possibility. See the page on [[Foreign_object_infections|foreign object infections]]. The bad news is that most of the illnesses listed above do not have a cure despite patients trying to treat themselves and millions of research dollars spent on ME/CFS, Gulf War syndrome, and Lyme. Only Lyme+ has a cure that might be useful for vaccine injury.

Treatments for Lyme+ involve getting rid of problematic bacteria, viruses, parasites, etc. that are causing chronic health issues. If COVID-19 vaccines turn pre-existing infections into something that’s debilitating, then Lyme+ treatments may work for vaccine injuries. However, at the moment, it is unclear if Lyme+ treatments are useful for the vaccine injured.

For a list of doctors treating vaccine injury and what treatments they are trying here, see [[List_of_doctors_and_approaches|this page]]. Long COVID treatments are included on that page because most of those treatments appear to work in the vaccine injured (with the exception of giving vaccines to the vaccine injured).

Because all/many of the treatments are experimental, you risk harming your body. Please be careful and understand the risks of what you are doing.

If you want to minimize your risk, you can start with the treatments that have long track records of being safe. There are low-risk treatments and drugs that are safe enough to be sold over-the-counter:

* Baby aspirin (low dose aspirin)
* Not exerting yourself physically/mentally to avoid post-exertional malaise
* Low histamine diet
* Certain anti-histamine drugs
* Melatonin (*prescription drug in the UK)
* Ivermectin (*prescription drug in most developed countries)

Your other options involve risk. Here are some prescription drugs and treatments with mild risk:

* Statins
* Corticosteroids like prednisone

The following prescription drugs have “black box” warnings or other serious safety issues:

* Maraviroc
* Fluvoxamine and most SSRIs - suicide risk, can lead to severe withdrawal problems if used long-term
* Benzodiazepines - can lead to severe withdrawal problems if used long-term

Many doctors will not give you informed consent about the risks of SSRIs, antidepressants, and benzodiazepines because they aren't aware of them. You should do your own research. (e.g. Many doctors simply don’t know about the safety issues of the drugs that they prescribe. Many people do not know that Brianne Dressen’s and Maddie de Garay’s disabling injuries during the clinical trials were not reported to the public.)

==Medical testing==

Before doing anything risky, it is probably a good idea to figure out what you have.

Medical testing might also help you deal with people who don’t believe that your health problems are “real”.

==Tests sensitive to vaccine injury==

There are two tests that many vaccine injured people test positive on:

* '''IncellDX’s inflammatory marker panel''' - This test measures the various molecules that the immune system uses to coordinate its actions. These signs of inflammation indicate that the body is trying to fight something (e.g. the microbes that live inside us, our own tissues, etc.) or is inappropriately hyperactive. Its creators have written a scientific paper on their test (https://doi.org/10.3389/fimmu.2021.700782) which explains how the test determines whether or not somebody is a ‘long hauler’ (has long COVID or post vaccination syndrome / vaccine injury).
** This test is available by signing up at covidlonghaulers.com; the test is available in the US and a growing number of countries.
* '''Auto-antibody tests from German labs (CellTrend, ERDE, Berlin Cures)''' - The word “auto-antibodies” refers to antibodies that engage in ‘friendly fire’ and attack your body’s own cells instead of things that shouldn’t be in your body. Auto-antibodies are not a sign of good health because your immune system should not be trying to attack its host. Because healthy people have autoantibodies too (at low levels), there can be some subjectivity as to whether your autoantibodies are problematic. That depends on their levels and whether you have symptoms in line with those antibodies.
** For the logistics of getting this test, see the page on [[Emerging_autoantibody_lab_tests|emerging auto-antibody lab tests]].

Most doctors aren’t familiar with these tests and may not know what to do with them.

These tests provide evidence that vaccine injury has a biological basis and not a psychogenic or psychological basis. Other objective tests can also provide evidence- however, testing positive on those tests is less common among the vaccine injured.

==Other medical tests (some of which you can do at home)==

'''Abnormal pulse''' - You can measure your own pulse to see if it is too fast (e.g. over 100bpm while resting), too slow (below 60bpm is borderline slow for non-athletic adults), or irregular. A doctor can use an ECG to measure your heart’s electrical signals to detect abnormalities.

'''Medical imaging (e.g. ultrasound, X-ray, MRI) to detect myocarditis or pericarditis''' - Some vaccine injured people have myocarditis/pericarditis while others do not (even though their heartbeat is not normal). Ask your doctor about these tests. If a doctor wants to give you an MRI “with contrast” involving a gadolinium-based contrast dye, please do your own research on the safety of gadolinium-based contrast dyes. A Reddit thread summarizes the concerns as patients report debilitating long-term health effects: https://www.reddit.com/r/neuroscience/comments/cja9pe/connection_between_gadoliniumbased_contrast/ Also see [https://gadoliniumtoxicity.com/ GadoliniumToxicity.com].

'''Chiari malformation''' - A Chiari malformation refers to a part of the brain (cerebellum) that dangles down into the spinal column instead of holding its normal rounded shape. This unusual structure can be detected via a scan of the brain (e.g. MRI, CT, etc.). Because some people have a Chiari malformation without symptoms, diagnosis is based on both symptoms and an abnormal brain scan.

[[File:MRI of human brain with type-1 Arnold-Chiari malformation and herniated cerebellum.jpg]]

Chiari support groups and forums will have additional information on this condition.
* https://www.chiarisupport.org/
* https://www.chiariassociation.org/ has a list of doctors with experience in treating Chiari

Chiari might be a co-morbid condition that is more common among the vaccine injured.

'''Hypermobility''' - Some people have extremely flexible joints and are prone to physical injury due to that hyperflexibility. The flexibility did not arise from stretching or contortionist training. The [https://www.ehlers-danlos.com/assessing-joint-hypermobility/ Beighton test] can be performed at home and provides objective evidence for medical diagnosis.

Hypermobile Ehlers Danlos Syndrome (hEDS) support groups may have more information on that condition with information on doctors knowledgeable about diagnosing and treating that condition. EDS support groups are another place to look for information on hEDS.

hEDS might be a co-morbid condition that is more common among the vaccine injured.

'''Dizziness, fast heartbeat, or fainting when going from lying down to standing''' - If you experience this, you can do a poor man’s tilt table test at home as described in Youtube videos such as this one: https://youtu.be/eX7ZWWVVPXo . A tilt table test at a specialist will be more reliable. It will measure both heart rate and blood pressure.

The NASA Lean Test may be a more sensitive test for spotting issues with orthostatic intolerance (development of symptoms when standing upright that are relieved when reclining). The Health Rising ME/CFS website has [https://www.healthrising.org/blog/2020/08/25/bateman-nasa-lean-test-chronic-fatigue-syndrome-orthostatic-intolerance/ an analysis of the NASA Lean test] along with [https://www.healthrising.org/forums/resources/a-simple-test-for-orthostatic-intolerance-in-chronic-fatigue-syndrome-and-fibromyalgia-the-nasa-way.388/ simple instructions] for performing the test at home or in a doctor's office.

'''Mast cell activation syndrome (MCAS) and histamine intolerance''' - These related conditions have similar symptoms and treatments. Diagnosis often involves doing a trial run of a low histamine diet and/or antihistamines. See the page on [[MCAS_and_histamine_intolerance|MCAS and histamine intolerance]] for information on how to try low histamine diets and how to find specialists.

'''Various auto-antibody tests''' - Your body has a very long list of antigens that it can theoretically produce auto-antibodies against. For some/many of those antigens, commercially-available antibody tests exist. While it is possible to throw every medical test that exists at a patient, doing so isn’t necessarily productive. If enough tests are used on a patient, some will come up positive because medical tests have a false positive rate.

However, auto-antibodies seem to be far more common in long haulers than average people. It is likely that a significant portion of symptoms are being driven by autoimmunity and that detectable autoantibodies are being produced in many patients. Auto-antibody testing relevant to particular symptoms (e.g. POTS, small fiber neuropathy, personality changes, thyroid) may be warranted. Autoimmunity often targets specific tissues and therefore generates unique symptoms, e.g. attacks on small nerve fibres will generate symptoms consistent with small fiber neuropathy.

Some doctors may erroneously assume that no autoimmunity is occurring if ANA and other initial auto-antibody tests are negative. However, those tests are far from being reliable in ruling out autoimmunity.

'''Dysfunctional nerves and/or small fiber neuropathy''' - Damage to the small fibers of the peripheral nervous system can cause burning pain, numbness, inability to sense hot/cold, and/or tingling sensations. A skin biopsy can measure the density of nerve fibres in the skin and test for small fiber neuropathy. [[Emerging_autoantibody_lab_tests|Non-standard auto-antibody tests]] for SFN are also available, which may be useful for patients seeking experimental IVIG treatment. IVIG approval resources are available [[IVIG_approval_resources|here]].

The ability to sweat normally can be tested via the QSART test.

'''Lyme tests''' - This is a very controversial topic, but the short story is this: the tests are bad and have a very high rate of false negatives. If you test positive, you should go see a doctor about getting treated (*standard antibiotic regimens do not wipe out persister-form bacteria in animal models or 'in vitro' studies, so treatment may not necessarily work). If you test negative, you or your doctor may erroneously assume that you do not have Lyme.

If you have tried everything else and your health problems persist, you can look up the symptoms of Lyme disease. Try https://www.lymedisease.org/lyme-disease-symptom-checklist/ Then, if you think you might have Lyme, you can do your own research on the controversy surrounding chronic Lyme. DrBeen’s [https://youtu.be/FqVlOfzZJH0 conversation with Steven Philips on Youtube] is a good introduction to the controversy. Philips believes that chronic illness is linked to transmissible diseases and that chronic illness can be treated. The other side of the controversy argues that chronic Lyme doesn’t exist. They may argue that grifter doctors exploit their patients for several years by “treating” them for Lyme bacteria that don’t exist.

'''Other medical tests''' - This list is not exhaustive and leaves out many things. You could have a health condition that doctors know how to diagnose and treat.

A longer list of medical tests can be found [https://docs.google.com/spreadsheets/d/1xOiYHqtRmbDd5aqK6OQhwmtJwRybc_oPKA53NaTCjvk/edit?usp=sharing in this Google Sheets document].

==Doctors who don’t want to try==

There can be different reasons why doctors may not want to help you with serious health problems:

* '''Denial of vaccine injury'''. For social, political and non-medical reasons, some doctors want to support the narrative that vaccines are “safe and effective”.
* '''Lack of knowledge'''. A doctor may know very little about diagnosing and treating vaccine injury.
* '''Unwillingness to say “I don’t know”'''.
* '''Inability to help'''. It would take time for a doctor to learn about vaccine injury and how to treat it, especially when vaccine injuries (and similar conditions like ME/CFS) are poorly understood. Many doctors do not have the time to learn about obscure health conditions. Or, because of how they are paid, they will not be properly paid for the time that they spend treating vaccine injured patients.
* '''Persecution from the medical establishment'''. Currently, doctors can lose their job for prescribing ivermectin, opposing vaccine mandates on social media, or for recognizing vaccine injuries that the medical establishment does not recognize. Many people do not want to lose their job.

You may encounter doctors that lie to you, gaslight you, misdiagnose you with anxiety or a functional disorder (psychological illness), or otherwise dismiss you. Trying to fight these doctors is probably not the most productive use of your time.

==Finding a doctor who is willing to help==

* The [[List_of_doctors_and_approaches|list of doctors and what they're trying]] has some information on finding doctors treating vaccine injury / post vaccination syndrome.
* Support groups for vaccine injury (e.g. [https://www.realnotrare.com/groups Real Not Rare], Reddit, Facebook) will have members discussing doctors in your area.
* Some doctors are willing to help ''long COVID'' patients. Because the treatments for long COVID seem to work for vaccine injury, you can simply tell your doctor that you might have long COVID. There is no definitive test for long COVID that is commercially available. (A protein sequencing test may be able to tell the difference between vaccine-generated proteins and wild virus proteins because their protein sequences are different. However, such a test is not commercially available currently.)
* Alternative and natural medicine practitioners tend to be very open-minded. However, be careful as some of these practitioners claim to have a cure for every health problem that exists.
* In the United States, a DO (doctor of osteopathic medicine) would have training in alternative medicine so they tend to be very open-minded. They are able to prescribe medications like a MD.

==Vaccine injury compensation==

Billions of dollars have been paid out for vaccine injury claims as most countries have vaccine injury compensation programs. However, your country’s system likely does not work the way you think it works.

To understand how things work ''in your country'', do web searches for

* “Vaccine injury” attorney
* “Vaccine injury” lawyer
* “Vaccine injury” lawyer United States (replace US with the name of your country)

Law firms will put useful information on the Internet as a way of attracting new clients.

At the moment, many programs are not paying COVID-19 vaccine claims (but may do so in the future). The amount of money being paid out may be low.

Your particular vaccine injuries may be dismissed and not considered to be vaccine-related. The appendix at the end of this document has a list of conditions that are more likely to be considered a vaccine injury (in the eyes of conventional, mainstream medicine). However, you may wish to talk to a lawyer/attorney who specializes in vaccine injury claims (for your country) because they would likely know more than you do about which injuries will be recognized.

==Closing thoughts==

Vaccine injury sucks. It is not well understood so there isn’t a clear treatment or cure. It can also be frustrating to deal with doctors who don’t want to help you. If you want a place to vent, come join the support groups.

==Appendix - Health conditions that mainstream medicine may consider to be vaccine-related==

* '''Heart''': Myocarditis, pericarditis
* '''Allergy''': Allergic reaction to the vaccine or a vaccine component such as PEG (polyethylene glycol).
* '''Shoulder injury''': SIRVA, frozen shoulder, adhesive capsulitis
* '''Bleeding disorders''': Low blood platelets (thrombocytopenia), VITT (Vaccine-Induced Immune Thrombotic Thrombocytopenia, ITP (Immune thrombocytopenic purpura).
* '''Blood clotting disorders''': e.g. embolism (blood clot), stroke
* '''Facial paralysis''': Bell’s Palsy.
* '''Nerve damage''': Guillain barre syndrome (the immune system damages the nerves, causing muscle weakness and sometimes paralysis).

Certain rare conditions:

* CIDP (this is sort of like the permanent form of Guillain Barre Syndrome)
* Parsonage Turner syndrome (brachial neuritis)
* ADEM (Acute disseminated encephalomyelitis)
* Aplastic anemia (not enough new blood cells)
* Cellulitis (bacterial skin infection)
* Complex Regional Pain Syndrome - a form of chronic pain that usually affects an arm or a leg
* Encephalitis - brain swelling, which can be caused by an autoimmune response
* Polymyalgia Rheumatica - inflammatory disorder that causes muscle pain and stiffness, especially in the shoulders and hips
* Polyneuropathy - simultaneous malfunction of many peripheral nerves throughout the body
* Pemphigus - blisters on skin (Google image search this to see what it looks like)
* Transverse myelitis - inflammation of both sides of one section of the spinal cord
* Vasculitis - a group of disorders that destroy blood vessels by inflammation