List of doctors and approaches

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Doctors treating long haul COVID and vaccine injury (post vaccination syndrome)[edit]

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[edit]

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[edit]

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[edit]

On 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:

...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...

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 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[edit]

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[edit]

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[edit]

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:

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.”

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[edit]

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 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[edit]

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[edit]

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.

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

Various articles in scientific journals advocate for the use of IVIG, as listed on the 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 Science magazine article notes:

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.

Rituximab effectiveness[edit]

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[edit]

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.

Panel tests available from 5 labs.png

See the page on non-standard auto-antibody tests for more information.

Plasma exchange / apheresis[edit]

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:

Gustavo Aguirre Chang[edit]

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[edit]

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[edit]

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[edit]

Patient #1's outcomes reported in Figure 1 of the paper by Liu and Duricka.
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[edit]

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. (*Note: Some researchers like Bruce Patterson believe that vaccines cause more harm than benefit in long haulers.)

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

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

Mary Bowden / monoclonal antibodies[edit]

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[edit]

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[edit]

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[edit]

According to the CDC's webpage on the management of post-COVID conditions (current version, 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" (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[edit]

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[edit]

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: 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[edit]

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. 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[edit]

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[edit]

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

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

AXA1125[edit]

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[edit]

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.

Phyto-V phytochemical capsule (undisclosed conflict of interest)[edit]

Professor Robert Thomas is the lead author of various papers on Phyto-V such as 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" (archive.is). The same website has also advertised consultation services offered by 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 (amazon.com, archive.ph).

Other conditions that might resemble long haul[edit]

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)[edit]

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 BII resources page for more information.

Iatrogenic botulism from Botox, Dysport, etc.[edit]

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 '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[edit]

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+)[edit]

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[edit]

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)[edit]

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[edit]

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.

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.

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[edit]

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[edit]

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