Post vaccination syndrome introduction for practitioners
Post vaccination syndrome refers to the constellation of symptoms experienced by sufferers following vaccination.
- The most common symptoms include fatigue, "brain fog", parathesia, dizzines, and heart issues.
- Most experience multiple symptoms.
- The range of symptoms is extremely diverse. The patient population is highly heterogenous in the combination of symptoms that they experience.
- There may be a relapse/remitting pattern to the severity of symptoms.
- Some/many patients develop new symptoms after the initial onset of post vaccination syndrome.
- For many but not all patients, symptoms dramatically reduce after several months.
Treating these patients can be a challenge because the COVID-specific syndrome is new, there are no established treatments, and many symptoms are non-specific.
React19 has survey data that covers the various symptoms that patients experience. See https://www.react19.org/post/persistent-neurological-symptoms-patient-survey and click 'download PDF'
Similarities between long COVID (PASC) and post vaccination syndrome
Symptoms overlap heavily between post vaccination syndrome and long COVID / post-acute sequelae of COVID-19 (PASC). Patients respond similarly to the same treatments. Because of these similarities, many refer to both patient groups as "long haulers". Both syndromes likely share a common root cause: S1 spike protein. See the etiology page for an overview of the various theories that currently exist.
There are two sets of tests that seem to have high specificity and sensitivity for post vaccination syndrome:
- An inflammatory marker panel developed by IncellDX has found unusual levels of various cytokines in post vaccination patients. These include IFN-γ (interferon gamma), IL-2 (interluekin-2), and CCL4-MIP-1β. The details of this test is described in the paper Immune-Based Prediction of COVID-19 Severity and Chronicity Decoded Using Machine Learning (https://doi.org/10.3389/fimmu.2021.700782).
- Auto-antibody tests offered by the German lab Cell-Trend seem to find elevated auto-antibody levels in long COVID patients. A paper by Wallukat et al. provides data on long COVID patients versus controls (see https://doi.org/10.1016/j.jtauto.2021.100100). Some information on the logistics of obtaining these tests can be found here.
- Bruce Patterson's team has found persistent S1 spike protein in the non-classical monocytes cells of patients. Their findings are described in their monocyte paper (https://doi.org/10.1101/2021.06.25.449905) and in online presentations by Bruce Patterson (https://youtu.be/O_XX9_IujeY).
- Protein sequencing of persistent S1 spike protein seems to find differences between post vaccination patients and long COVID patients. See the discussion at 23 minutes of this presentation by Patterson: https://youtu.be/O_XX9_IujeY?t=1417
- Microclots. The following paper describes the blood clots found in long COVID patients: https://doi.org/10.1186/s12933-021-01359-7 It is unclear if post vaccination patients also have microclots.
Standard medical testing often finds nothing
While long haulers may have objective abnormalities such as arrhythmias, patients generally report that their doctors fail to find the root cause of their symptoms. At the moment, the condition is poorly understood and there are challenges in diagnosing and treating patients. Nonetheless, practitioners can still offer the following to their patients:
- Long haulers have certain common comorbidities that can be diagnosed and/or treated
- A diagnosis of the patient's comorbidities can help the patient receive access to disability benefits, vaccine exemptions, support from family and friends, etc.
- Experimental treatments. For information on experimental treatments, please refer to the FLCCC I-RECOVER protocol. Pages 2 and 3 in the downloadable PDF contain some information on the protocol's reasoning. For general practitioners, the FLCCC I-RECOVER protocol may be the easiest to learn about and follow. Also see this wiki's list of experimental treatments.
Experimental treatments may cause more harm than benefit. Clinicians should exercise their professional judgement as to the potential risks and benefits. Some experimental interventions repurpose existing drugs with known safety profiles, so there may be low risk of harm with the safest repurposed drugs.
Long haulers have elevated rates of certain conditions that have known symptom-alleviating treatments. They also have high rates of certain conditions that are not too challenging to diagnose.
Many patients will be able to spot a pattern between too much exertion (mental or physical) and a worsening of symptoms 1-2 days afterwards. Avoiding overexertion is a simple tactic for avoiding post-exertional malaise and the worsening of symptoms associated with it.
- Pericarditis, myocarditis
Long haulers exhibit much higher rates of auto-antibodies than healthy controls.
In terms of treatment, the scientific literature contains many case reports of vaccine injury and the immunomodulatory treatments being used experimentally (e.g. corticosteroids, IVIG, etc.) to treat those patients. The case reports contain a mix of successful treatments (that reduce symptoms but do not eliminate them) and unsuccessful treatments (e.g. death, treatment abandoned due to a reaction from the patient, etc.).
Postural orthostatic tachycardia syndrome can be diagnosed with the "poor man's tilt table test" performed by the patient in their home or in the doctor's office. A formal tilt table test can be performed for a more definitive diagnosis.
Bisaccia et al. have published a paper on the treatment of POTS and cardiovascular autonomic dysfunction in PASC patients. See https://doi.org/10.3390/jcdd8110156
In addition to pharmacological measures, they suggest non-pharmacological measures as prime consideration for 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.
Histamine intolerance and MCAS (Mast Cell Activation Syndrome)
There are various strategies to diagnose histamine intolerance. One of these strategies is to diagnose based on symptoms and a 'treat to test' strategy. For a primer on histamine intolerance, see this factsheet by Tina Peers.
There are fairly safe treatments that can be used as part of a treat-to-test strategy:
- Low histamine diet. A food compatibility list can be found at https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf and a more detailed/advanced one at https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
- H1 and H2 blockers
- Loratadine (Claritin), Fexofenadine (Allegra), Cetirizine (Zyrtec, Benadryl Allergy One a Day Relief 🇬🇧) and Acrivastine (Benadryl Allergy Relief 🇬🇧 / Semprex 🇺🇸) are H1 receptor antagonists that are sold over-the-counter in most countries.
- Famotidine (Pepcid) is a H2 receptor antagonist that is sold over-the-counter.
- Many other H1 and H2 blockers are available.
A subset of people with histamine intolerance may also have MCAS and see benefit from a mast Cell stabilizing medication such as rupatadine or nizatidine. The treat-to-test strategy would then involve a mast cell stabilizer in addition to a H1 and H2 blocker.
Unfortunately, MCAS is a poorly understood syndrome that is difficult to diagnose and treat.
- MCAS resembles mastocytosis, a rare disease caused by too many mast cells. In contrast, people with MCAS have a normal number of mast cells that are overly active and therefore mimic mastocytosis.
- Diagnostic biomarkers such as heparin, prostaglandin D2, histamine, chromogranin A and tryptase exist. However, these tests are mediocre. The paper Characterization of Mast Cell Activation Syndrome argues that there are currently no "biomarkers for predicting effective treatments in the individual or for objectively assessing response". See https://dx.doi.org/10.1016%2Fj.amjms.2016.12.013
- Patients may have to trial various MCAS treatments to find the ones that work best for them.
A MCAS diagnosis and treatment guideline by Afrin et al. can be found at https://doi.org/10.3109/07853890.2016.1161231
Patients can be referred to a MCAS specialist. 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/
Small fiber neuropathy
Damage to the small fibers of the peripheral nervous system can cause burning pain or tingling sensations. A skin biopsy can measure the density of nerve fibres in the skin and test for small fiber neuropathy.
Allergic reactions to COVID vaccines
Allergic reactions to a COVID vaccine may have a different etiology than post vaccination syndrome. Nonetheless, if there are signs of an allergic reaction, patients should be evaluated for allergies to vaccine components such as PEG.
Common comorbidities (continued)
For neurological symptoms such as poor concentration, forgetfulness, and mood disturbance, some patients seem to respond to SSRIs such as fluvoxamine. Please refer to the FLCCC i RECOVER protocol for more information. https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/
Patients should receive informed consent about the risks associated with SSRIs. Adverse event reporting databases such as VIGIAccess strongly suggest significantly elevated rates of suicide. The FDA has issued a black box warning for suicide among the pediatric population; there is controversy over whether the FDA should also have issued a black box warning for suicide among adults.
Long-term use of SSRIs can lead to severe withdrawal problems. The Inner Compass Initiative has setup a patient-centered website (https://withdrawal.theinnercompass.org/) with information on withdrawing from psychiatric medications.
Vaccine-induced Thrombotic Thrombocytopenia (VITT)
VITT is a rare blood clotting disorder with low blood platelet count. A treatment guideline by Bussel et al. argues that urgent medical evaluation for VITT is indicated if any of the following develop 4 to 42 days after vaccination:
- Severe headache
- Visual changes
- Abdominal pain
- Nausea and vomiting
- Back pain
- Shortness of breath
- Leg pain or swelling
- Petechiae, easy bruising, or bleeding
If VITT is suspected, perform immediate CBC with platelet count and imaging for thrombosis based on symptoms.
Full treatment guidelines can be found here: https://www.hematology.org/covid-19/vaccine-induced-immune-thrombotic-thrombocytopenia
Note that the comorbidity lists above are not exhaustive.
Post vaccination syndrome also shares a few symptoms with thyroid disorders, so thyroid testing may be warranted if symptoms of a thyroid disorder exist.
Autoimmune thyroid disorders may be a facet of post vaccination syndrome as autoimmunity exists at higher rates in post vaccination patients.
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.
MIS-C / MIS-A / MIS-V
Multisystem Inflammatory Syndrome (MIS) is a rare condition most commonly found in children following COVID (which may have been a mild case), although it is also found in adults and in vaccinated individuals who were never infected with SARS-CoV-2. Symptoms overlap heavily with Kawasaki disease, which should be ruled out before a MIS diagnosis can be made. Brighton Collaboration diagnostic criteria can be found here: https://www.sciencedirect.com/science/article/pii/S0264410X21000931 Case reports of MIS-V include:
The relationship between MIS-V (MIS following vaccination) and post vaccination syndrome is unclear. Whereas post vaccination syndrome affects females more than males, the opposite is true for MIS (see https://doi.org/10.1101/2021.02.07.21251212). MIS-V and post vaccination syndrome could have different etiologies.
Other debilitating, poorly-understood illnesses
Post vaccination syndrome has symptoms that overlap heavily with the following illnesses:
- Breast implant illness / silicone implant incompatibility syndrome / ASIA (autoimmune/inflammatory syndrome induced by adjuvants).
- Chronic Lyme (“PTLDS”).
- Gulf War syndrome, which affected participants of the 1991 Gulf war.
- HPV vaccine injury.
- Post viral syndromes from SARS1, MERS, Ebola, etc.
- Long COVID / PASC.
Breast implant illness is a syndrome that, by definition, only affects people with implants. Here are the key points:
- Most but not all sufferers report significant improvements in health after their implants are removed.
- There is no test that can predict whether or not explanation will resolve symptoms. (Hopefully this information becomes outdated and such a test will exist in the future.)
- BII occurs regardless of whether the implants are intact. It affects all generations of breast implants as well as both textured and non-textured implants.
- There is controversy as to whether or not BII exists. The FDA website currently provides information on BII; the safety signals in its MDR system link breast implants to adverse events. Despite the data presented, the FDA webpage states that "BII is not recognized as a formal medical diagnosis".
More information on BII can be found in its resources page.
Chronic Lyme is another controversial medical condition. The short story is this: there are various tests for bacteria and viruses that are transmitted via tick bites and other vectors.
- Some believe that most of those tests have very high rates of false negatives because the pathogens can persist in tissue. There are "low biomass" infections that can cause persistent health problems while being very difficult/impossible to detect. (Diagnosis is often uncertain and based on symptoms or non-standard tests.) Unfortunately, both testing and treatment have serious shortcomings. Treatment can require several years with no guarantee of success.
- The other side of the 'Lyme wars' believes that the Lyme tests and antibiotic treatments are excellent; if patients continue to suffer Lyme-like symptoms after a course of antibiotics, they are suffering from a mysterious "Post-treatment Lyme Disease Syndrome" rather than a persistent Lyme infection. (In vitro and animal studies have found Lyme bacteria to take on a persister form when exposed to antibiotics, allowing the bacteria to escape eradication. Despite these studies, some believe that antibiotics are 100% effective when used in vivo.)
Patients can be referred to a 'Lyme-literate medical doctor' (LLMD) or a PTLDS specialist; both types of specialists may sit on opposing sides of the 'Lyme wars'. Patient-led support groups and organizations have online resources that can help locate LLMDs, e.g. https://www.lymedisease.org/find-lyme-literate-doctors/
ME/CFS is difficult to diagnose because there is no established test for the condition. It is diagnosed based on symptoms; different diagnostic criteria exist.
Lessons from ME/CFS
Many long haulers will eventually fulfill the diagnostic criteria for ME/CFS if they do not improve over time. Even if the patient does not develop ME/CFS, long haul syndromes have overlapping co-morbidities with ME/CFS.
The ME/CFS clinician coalition website has many excellent resources on the treatment of co-morbidities associated with ME/CFS. In particular, it links to some relevant treatment guides:
- Mast cell diseases and MCAS - The Mastocytosis Chronicles
- Testing information for differential diagnosis - https://mecfscliniciancoalition.org/resources/#additionaltesting
- NASA 10 minute lean test to diagnose orthostatic intolerance (2021) - https://batemanhornecenter.org/wp-content/uploads/filebase/providers/mecfs/10-Minute-NASA-Lean-Test-Clinician-Instructions-06_2021.pdf
For non-medical reasons, there are heated politics surrounding two practices:
- Prescribing ivermectin for COVID-related illnesses (and post vaccination syndrome). While there is little controversy about off-label usage of ivermectin for scabies or the experimental use of invasive ventilation for acute COVID, there is a political firestorm surrounding specific off-label uses of ivermectin.
- Challenging the narrative that all vaccines are "safe and effective".
Many medical boards, pharmacists, activist journalists, and social media platforms have attacked the livelihoods and platforms of doctors who engage in either practice. The political backlash has contributed to a shortage of doctors willing to treat post vaccination syndrome. Patients and their physicians may also become frustrated when pharmacists unilaterally refuse to fill ivermectin prescriptions (but see the FLCCC website for tips on finding a pharmacy that will fill the script).
One potential strategy for circumventing politics is to treat "long COVID" instead of PASC. Due to the current shortcomings of commercially-available testing, clinicians should not rule out the possibility of long COVID. Existing commercially-available tests have shortcomings in their ability to differentiate between long COVID and post vaccination syndrome. A SARS-CoV-2 infection can cause the body to produce antibodies against the S, M, and N proteins of SARS-CoV-2. Because vaccines do not provoke the body into producing antibodies against the M and N proteins, the N antibody test is useful for detecting a previous SARS-CoV-2 infection in vaccinated individuals. However, some patients do not produce detectable N antibodies or their antibody levels have extinguished over time. Because of such issues, many long COVID specialists argue that patients should be treated for long COVID even if their N nucleocapsid antibody test was negative.
Understanding long haul patients
Doctors should be aware of the challenges that many patients face.
- Patients want a specialist familiar with their debilitating health problems. Unfortunately for them, there is a shortage of clinicians that specialize in treating people with their symptoms.
- Patients may be frustrated that their previous doctors had little understanding of their health problems.
- Many patients have been frustrated or traumatized from gaslighting, inappropriate diagnoses (e.g. anxiety, a psychogenic disorder, "functional" disorders), and/or lies that they received from medical professionals.
- Many patients are desperate for some form of treatment because their symptoms are debilitating and may have taken away their ability to work. (This desperation may not necessarily be healthy because medical interventions can be more harmful than helpful.) However, they face difficulty accessing prescription drugs and experimental treatments. Some take the "Dallas Buyers Club" route and use alternative routes for buying medication (e.g. Indiamart, veterinary ivermectin).
- Some patients are aware that Maddie de Garay's and Brianne Dressen's vaccine injuries were not reported during the clinical trials for COVID vaccines. This may be why some patients do not trust conventional medicine. They did not receive informed consent.
Medical professionals can acknowledge that some/many of their patients have valid reasons to be frustrated with and/or distrustful of doctors based on their past experiences.