View source for Newly injured guide

[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