Editing List of doctors and approaches

==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.

===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.

'''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

'''Does it work?  What we know so far''':  There is an online network of doctors between Dr. Been, the FLCCC, and Bruce Patterson’s group of affiliated doctors.  They talk to each other and share their experiences about what seems to work among their hundreds of patients.

A clinical trial for Bruce Patterson’s group should be coming soon.  The design of the trial anticipates/suggests that many people won’t respond to a statin plus maraviroc.

===FLCCC===

'''Key treatments''': Ivermectin, a statin (atorvastatin), prednisone, fluvoxamine, melatonin, and many other drugs.
For MCAS (mast cell activation syndrome, which a number of long haulers have): low histamine diet 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 works for rosacea (Soolantra).

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

'''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.

===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

===Microclot therapy / Etheresia (Resia) Pretorius and colleagues===

'''Key treatment''':  A combination of drugs are 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, 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.”

===Berlin Cures / Gerd Wallukat===

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

'''Testing''':  Autoantibody test.

'''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…”

===Takarashi 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.

https://youtu.be/xMFCNtoZWIw?t=1096

===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===

'''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===

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".

===Akiko Iwasaki===

'''Key treatment''': COVID vaccine

'''Theory''':  COVID vaccines seem to help some 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.
*Note:  Some researchers like Bruce Patterson believe that vaccines are more likely to make long COVID worse rather than better.

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 

===Leronlimab===

Leronlimab is a CCR5 antagonist so its mechanism of action is the same as maraviroc (a drug used by the Bruce Patterson / covidlonghaulers.com group).  Clinical trials showed a mild benefit but the improvements were not statistically significant.  A larger trial would provide more evidence as to whether or not this drug (and CCR5 antagonists in general) is helpful.

Because leronlimab is an experimental drug that is very difficult to get, it is not currently relevant to treatment.  Bruce Patterson is involved in a group of investors who are trying to take control of the company (Cytodyn) which owns the right to this drug.

===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.

==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.

There are plenty of Youtube videos and Facebook groups discussing BII.  For more information, you can use Google Scholar to search scientific papers and use Sci Hub to bypass paywalls.  BII may be referred to as:
* Silicone implant incompatibility syndrome
* BII (breast implant illness)
* ASIA - Autoimmune/Inflammatory syndrome induced by adjuvants

===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-led 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.

===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