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 syndrome is new, there are no established treatments, and the symptoms may be 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.

Biomarkers 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).

Other biomarkers:

• 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 abnormalities such as arrhythmias, patients generally report that their doctors fail to find the root cause. 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 and the additional pages in the downloadable PDF. Also see this wiki's list of experimental treatments. For general practitioners, the FLCCC I-RECOVER protocol is the easiest to follow.

Common comorbidities

Long haulers have elevated rates of certain conditions that can be objectively diagnosed without relying only on self-reporting by patients. Certain other common diagnoses/treatments should be prioritized and evaluated in every patient.

Post-exertional malaise

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.

Heart conditions

• Arrhythmias
• Pericarditis, myocarditis

Autoimmune conditions

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 literature contains 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.).

POTS

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.

Mast cell activation syndrome

MCAS is a poorly understood condition. However, patients can be diagnosed via symptoms and a "treat to test" strategy. There are fairly safe treatments that can be used as first-line interventions:

• Low histamine diet
• H1 and H2 blockers

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, patients should be evaluated for allergies to vaccine components such as PEG.

Common comorbidities (continued)

Neurological symptoms

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/

Please inform patients of the risks associated with SSRIs. Adverse event reporting databases such as VIGIAccess show significantly elevated rates of suicide. The FDA issued a black box warning for suicide among the pediatric population. There is controversy over whether there should be a suicide warning for adults because they also commit suicide while taking SSRIs.

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.

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Note that these comorbidity lists are not exhaustive.

Differential diagnosis

Post vaccination syndrome has symptoms that overlap heavily with the following illnesses:

• Breast implant illness / silicone implant incompatibility syndrome / and ASIA (autoimmune/inflammatory syndrome induced by adjuvants).
• Chronic Lyme (“PTLDS”).
• ME/CFS.
• 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 controversial 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.)
• It 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 has been controversy as to whether or not BII exists. The FDA website currently provides information on BII and the safety signals in its MDR system. However, the FDA does not follow its own data to a logical conclusion. Its webpage states that currently "BII is not recognized as a formal medical diagnosis".

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 many of those tests have an extremely high false negative rate. When all of the tests come back negative, it is not entirely clear what the patient does or does not have. Both testing and treatment have serious shortcomings. The other side in 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 to take on a persister form when exposed to antibiotics.)

Thyroid

Post vaccination syndrome also shares a few symptoms with thyroid disorders, so thyroid testing may be warranted if symptoms of a thyroid disorder exist.

Political realities

For non-medical reasons, ivermectin has become a controversial drug. While there is little controversy about off-label usage of ivermectin for scabies or invasive ventilation for acute COVID, there is a political firestorm surrounding the off-label usage of ivermectin for COVID and post vaccination syndrome. Many medical boards, pharmacists, activist journalists, and social media platforms are attacking doctors who prescribe ivermectin. A similar intertwined situation exists for doctors who challenge the narrative that all vaccines are "safe and effective". Doctors are supposed to be ignorant about the safety concerns that caused Japan's usage of HPV vaccines to drop to almost zero as well as the reasons why Lymerix (Lyme vaccine) and Pandemrix (swine flu vaccine) are no longer being sold. 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 refuse to fill ivermectin prescriptions (but see the FLCCC website for tips on finding a pharmacy that will fill the script).

One strategy would be to treat "long COVID" instead of PASC. Existing commercially-available tests have shortcomings in their ability to differentiate between long COVID and post vaccination syndrome. Many long COVID specialists argue that patients should be treated for long COVID even if their N nucleocapsid antibody test was negative. (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. However, some patients do not produce detectable N antibodies or their antibody levels have extinguished over time.) Due to the current shortcomings of testing, clinicians should not rule out the possibility of long COVID.

Doctors should also be sensitive towards the challenges that long haul patients face.

• Patients want a specialist familiar with their health problem (post vaccination syndrome or another condition that is being confused with post vaccination syndrome). Unfortunately for them, there is a shortage of specialists with that particular skillset.
• Many patients have been frustrated or traumatized from gaslighting, being diagnosed with anxiety or a psychogenic disorder, and lies that they received from medical professionals.
• Many patients are desperate for some form of treatment. However, they face difficulty accessing prescription drugs and experimental treatments. Some take the "Dallas Buyers Club" route and use veterinary medicines.