Written by Harriet Carroll, PhD after her Vaccine Injury
6 February 2022 | life of a scientist, weight & health
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Reposted here with Harriet Carroll's permission. Her vaccine injury story is linked at the bottom of this blog.
Since writing about my vaccine injury I’ve had a lot of DMs etc asking what tests should be done, what the likely causes are, and how to handle doctors. So I thought it would be easier to write a post with this information in it. I want to start by acknowledging the amazing vaccine long haul folk (and a very small cohort of fab doctors/scientists) who have found all this out by themselves. I take zero credit for any of this.
I think it is fair to say that no one is a true evidence-based expert on COVID19 vaccine injuries at the moment. The patient community however are highly informed and the few scientists who are taking this seriously are helping contribute to our understanding…often confirming what patient groups are finding. I think this is an important lesson for medical professionals: patients know their shit. Listen to them. I will update this with anything I’ve missed and hopefully as new research comes out. Feel free to send information, I will try and credit people but if I miss your credit, please let me know (brain fog, arghh). My last post on vaccine injuries brought an influx of messages and honestly it took a lot of time to catch up and it was quite exhausting. Please be patient if I take a while to reply, or if I just give your message a "like", and please don’t take offence if your message slips my radar. I want to emphasise that I think vaccines are one of the most important public health interventions we have, and if you are eligible, I strongly recommend you take the recommended jabs. Likely causes, their treatments, and how to test for these Please note that not all of these will apply to everyone, and some people will have more than one thing as the cause. Interestingly, much of this is similar to long COVID sufferers too which makes me (and others) think the main culprit is less to do with vaccine types (mRNA/viral vector) and more to do with the spike protein and the immune (hyper)reaction that causes. As some vaccine long haulers seem to fair ok with COVID, I also wonder whether method of administration matters too. The treatment options below are according to my best knowledge and also based on what others claim has helped. However, please note I am not a medical doctor and none of this is medical advice. These are just ideas you can explore with your medical team (though I fully appreciate many medical teams are being more than unhelpful). B12 deficiency: anyone who read my initial post will know this is my bias as we think this is the primary culprit in my reaction. We think the inflammatory response from the vaccine caused demyelination and in folks with baseline low B12 status and inadequate B12 intake (supplements or diet), B12 gets depleted as you try and remyelinate. This will usually lead to neurological problems. In our experience in seeing me and a few other cases, these symptoms may not be textbook, for example, experiencing vast and rapid fluctuations in symptoms (e.g. I have gone from near bedbound one day to near “normal” the next).
Treatment: intramuscular B12 jabs every 2 days until symptom improvement has plateaued, then moving onto oral supplementation. Sublingual B12 supplementation may also be an option.
Tests: blood test for B12 status. You should also get intrinsic factor tested to check you do not have pernicious anaemia (which means you would not be able to absorb B12 through oral supplements) We are currently writing a paper on this hypothesis, I will link it here when it’s published. Vitamin D deficiency: again, this is my bias. I do not think this is a primary cause of vaccine hyperreactions, but I think it isn’t helping things if it is low. Vitamin D has a role in regulating the immune system so it may be that low vitamin D contributes to a (continued) hyperreaction and/or autoimmunity. Vitamin D deficiency is also implicated in some symptoms many of us experience, like generally feeling unwell, and muscle aches.
Treatment: depending on your deficiency status, (very) high dose 6 week oral loading phase of vitamin D3, followed by continued supplementation thereafter. I am currently on 50,000 IU per week as my loading phase, and then I think I go onto 800 or 1000 IU per day after that
Tests: blood test for vitamin D (total vitamin D, vit D2, and D3) Mast cell activation syndrome (MCAS): mast cells are part of your immune system and are responsible for allergic type reactions. MCAS is the dysregulation of this system so you essentially react to anything unnecessarily.
Treatment: antihistamines and/or low histamine diet. The benefit of antihistamines is that they are relatively low risk and you can get them over the counter (they are used for hayfever). A lot of people report struggling on a low histamine diet as it can be quite restrictive, but those who manage to stick to it often report improvement.
Tests: tests are usually best done during a flare up of symptoms. Blood test would be for tryptase, and a urine test can look at N-methylhistamine, 11B -Prostaglandin F2α (11B-PGF2α) and/or Leukotriene E4 (LTE4). Info on MCAS here.
If the doctor initially refuses to test for MCAS, trying antihistamines and finding improvement may help persuade them to test for it. However, please be aware that not all doctors acknowledge MCAS as a real thing, sigh. Autoimmunity: autoimmunity is when your own immune system attacks your own cells. Autoimmune conditions you may have heard of include eczema, multiple sclerosis, and type 1 diabetes, however there are lots and lots of types, and some diseases can be caused by autoimmunity in some people but not in others. In vaccine long haulers, we are frequently seeing autoimmunity to some non-standard proteins, including:
ACE2, the protein the SARS-CoV-2 virus uses to enter cells. ACE2 autoimmunity seem relatively common with COVID19 potentially contributing to long COVID and inflammation, and pre-COVID had been associated with damage to blood vessels
AT1, angiotensin II type 1 receptor; angiotensin is part of the same system as ACE2, called the renin-angiotensin-aldosterone system or RAAS. This is also associated with COVID19, and is implicated in inflammation
MAS-1 receptor, this is part of the angiotensin pathway. I struggle to understand the literature on this but it seems to be implicated in inflammation and cardiovascular function
FGFR3, autoimmunity to this is implicated in things like burning sensations (paresthesia) and other neuropathies
TS-HDS, this along with FGF3R is implicated in small fibre neuropathy and dysautonomia which a lot of vaccine long haulers seem to suffer with
Cholinergic autoimmunity (specifically muscarinic type 1, 2, 3, 4, and/or 5 receptors), these are associated with a range of autonomic dysfunctions like poor bladder control, dry eyes, dry mouth/thirst, and cardiovascular problems. M3 receptor specifically is implicated in an autoimmune disease called Sjögren's syndrome
Beta adrenergic receptors, together with muscarinic receptor autoimmunity, beta adrenergic receptor autoimmunity has been associated with chronic fatigue syndrome/ME
IFN-α2, interferon-alpha 2. Interferon is produced by the body to help fight infection and is one reason illness makes us feel so crappy. There’s some evidence of autoimmunity against interferon in long COVID
PPF4, platelet factor 4. Antibodies to this seem to be implicated in the weird blood clots seen after the AZ vaccine
Treatment: standard treatments for autoimmunity include plasmapheresis, intravenous immunoglobulin (IVIg), and immunosuppressants (including steroids). However, whether or not you will be eligible for these treatments if you find you have autoimmunity to any of the above is another question. Many doctors seem reluctant to prescribe these therapies as there is no published evidence for their risks and benefits in situations like ours or for autoimmunity with the above Tests: standard clinical tests for autoimmunity can include antinuclear antibody (ANA), rheumatoid factor (RF), tissue transglutaminase (tTG – this tests for Coeliac’s disease, but could be worth getting checked as Coeliac’s can present with neurological problems). Many patients come back negative for these; a negative test does not mean you do not have an autoimmune disease For more specialised testing, you will likely have to go private. CellTrend is leading the way and tests most of the above. These CellTrend tests require you to obtain your own blood sample, get a lab to centrifuge it to separate the plasma, then send your sample to the lab in Germany, costing around 1000 Euros in total (if you do all the tests + shipping costs). You should be mindful that, as mentioned above, doctors may still refuse treatment options. However, many patients find having a solid diagnostic therapeutic in itself Inflammation / cytokines: both vaccines and infection by their very nature cause some kind of inflammation, even if it’s just a bit of redness where the needle jabbed you. We are probably all familiar with the COVID-induced “cytokine storm” that seems to cause severe COVID19, and some have hypothesised that similar is happening in vaccine long-haulers, including a prolonged/chronic inflammatory response. Chronic (neuro-)inflammation is associated with conditions like chronic fatigue syndrome/ME
Treatment: this can in theory be as simple as something like ibuprofen or other anti-inflammatories, but this should be done with medical supervision as chronic use in particularly has quite a lot of risk particularly of internal bleeding. Dr Bruce Patterson is leading the way with this and (depending on what their tests find), recommends a C-C chemokine receptor 5 (CCR5) antagonist called Maraviroc, as well as statins. I have not read too much into this protocol or the underlying theory, however you can read some of Patterson’s work here or visit his website
Tests: the standard marker of inflammation is often C-reactive protein (CRP), though many patients CRP comes back normal. As with ANA for autoimmunity, a normal CRP does not necessarily mean no inflammation. Other tests which you may have to pay for privately can include interleukins (IL-1, IL-6, and IL-10 I have read a fair bit about regarding chronic fatigue and related problems, but there are also others which might be relevant), vascular endothelial growth factor (VEGF) which may be implicated in long COVID and vascular damage perhaps due to hypoxia, and D-dimer which is a non-specific marker for coagulation and/or inflammation. It is worth noting my D-dimer was elevated and we think this was an artefact of severe B12 deficiency rather than inflammation per se…but it showed something funky was going on at the very least so no one could claim I was making stuff up (in theory at least, some still did)
It is worth noting that sometimes inflammation is tissue-specific, so may not show in your blood. Something like a lumbar puncture or MRI scan can show inflammation more specific to the central nervous system/brain
I want to reiterate here that this hypothesis is something I have looked the least into, so please take this with more pinches of salt than the rest and feel free to correct any errors (here or elsewhere of course)
Side note: an interesting thread on afucosylated antispike-antibody immune complex EDIT: it's should be noted that Dr Patterson's method does not work for everyone, and some have raised questions about the reliability of the tests they use. This is an incredibly difficult landscape to navigate, I do not know the validity of these claims, nor Dr Patterson's unfortunately Microclots: these are “mini” clots found in plasma (the watery part of blood) and have been implicated in long COVID. Such clots could contribute to a range of neurological and cardiovascular symptoms, including brain fog and muscle aches
Treatment: this seems to be a rapidly growing field of clinical interest, but as yet, to my knowledge there is no formal testing or treatment for microclots. In theory, aspirin may help, but as with anti-inflammatories this comes with significant risk, particularly of internal bleeding This is an image I took of my plasma. We did this in suboptimal conditions so it is unclear whether maybe the sample was contaminated (or even the microscope slides were a bit scratched or something?). But they certainly look like what could be microclots?
Tests: outwith research studies (which use fluorescence), there are no clinical tests that I am aware of for microclots. One hypothesis is that microclots may even trap inflammatory proteins and may be contributing to many of our results coming back normal. However, (chronically) elevated D-dimer or VEGF *may* (very speculatively) indicate microclots in the absence of any evidence for regular clots (that might show up in a head CT scan for example). Prof Resia Pretorius is leading the way with is, along with Dr Asad Khan and Prof Doug Kell (and others)
You can also DYI test for microclots. I have tried this twice and honestly I found the results hard to interpret (see image). To do this, get a blood sample, centrifuge it, pipette out the plasma, and look at the plasma under a microscope. If you see little circles in your plasma, allegedly these are microclots. You can read more here Virus reactivation: there is some evidence that some viruses, like Epstein-Barr or Herpes Zoster virus might be reactivated. I do not know much about this but I wanted to include this information too in case it is helpful to anyone Supplements: many people are also taking supplements or otherwise self-medicating. Some common ones are below with some thoughts:
Vitamin B12: this is very low risk, and many report benefit, though it may be unnecessary if you do not have deficiency
Vitamin C: many people report benefit to this, and in reasonable doses it seems pretty risk free
Vitamin D: similar to B12 and C, but stay within recommended doses as too much can be toxic
Vitamin E: similar to above, though I would avoid high doses as these can cause toxicity. Vitamin E supplementation also carries other risks, such as potentially increasing prostate cancer risk. So unless you’re deficient, I would probably not bother with this, or only take a low dose
Magnesium: I do not know enough about Mg to offer anything useful, but a lot of people find it helps, particularly at night before bed if you have sleep problems
Zinc: I would probably avoid unless you are deficient as too much Zn can cause copper deficiency
Copper: similar to Zn, I would avoid unless you have deficiency. If you have neurological problems, copper should be checked
Melatonin: this can have anti-inflammatory effects, personally I find it helpful for symptoms. However, it may be contraindicated in those suffering autoimmune disease, and despite its wide availability in most countries, we do not have very much research on it so take with caution
N-acetyl cysteine (NAC): this is popular in the CFS/ME community and seems relatively risk free. If you suffer with energy problems, this might be helpful, but evidence is scant as far as I know. There is a study on NAC (with amino acids) for long COVID but I don't think the results are out yet
Coenzyme Q10 (CoQ10): this is also popular in CFS/ME, and as with NAC evidence is not really there but some find it helpful and it seems quite safe
Nattokinase: this allegedly helps with blood clotting so may be helpful. Again I don’t know too much about this but it seems safe assuming you don’t have a bleeding disorder Medications/treatments that you might be tempted to try and some thoughts on these: Ivermectin: I would avoid this unless you have a relevant parasite infection or are otherwise prescribed it. Side effects can include neurological and other problems that many of us already suffer with
Acetylcholinesterase inhibitors: these are used in some conditions where by the cholinergic system is malfunctioning and this causes slowness. These are prescription only drugs. I feel in theory, they might be helpful to some people considering the cholinergic system might be involved in some symptoms. However, I have no data to back this assertion
H.E.L.P.-apheresis: I do not know enough about this to comment, but some have claimed it has helped. I have seen people cite this website which might be useful to anyone interested
BC 007: I do not know much about this drug. It was originally for heart disease, but allegedly can neutralise (G protein coupled receptor; GPCR) autoantibodies (and improve circulation in small vessels like in the eyes) (GPCRs include the above mentioned proteins, like beta adrenergic receptors). It is being investigated for long COVID. Whilst there seems to be a lot of media hype about BC 007, I cannot find much research on it in long COVID so I am not sure we are at a position to say whether it has benefits or not yet. Other tests you might want to ask for include: fibrinogen, platelet factor 4, troponin, a general blood count, immune cells (basophils, eosinophils etc), immunoglobins, prothrombin time, activated partial thromboplastin clotting time, and other markers of health to check nothing is contributing (e.g. high blood sugar can cause neuropathy).
Physical tests can include: the tilt table test (for dysautonomia, particularly POTS), Romberg’s test (for neurodegeneration), MRI and/or CT scan (to check for demyelination, inflammation, blood clots, and similar – though please note a lot of us seem to get chronic and debilitating reactions to the contrast dyes they use for some of these scans. For me, even the sensory stimulation sets me off a bit), lumbar puncture (for neuroinflammation), nerve conduction tests (for nerve function), Holter monitor (for cardiac function)…and I’m sure I’ve forgotten loads!
The pathologies outlined above can all cause a range of symptomatic diagnoses from dysautonomia (in various forms, like POTS), cardiovascular issues (like tachycardia), chronic fatigue/ME and many others. Individual symptoms often include: nausea, dizziness, numbness, internal vibrations, tremors, chronic pain of various kinds (e.g. small fibre neuropathy), thirst, slowness (bradykinesia), breathlessness, brain fog, skin problems, speech problems (e.g. slowness, stuttering), temperature regulation problems, general feeling of unwell, cold/hayfever like symptoms, headaches/migraines, hypersensitivity (e.g. sensory overload, or [chronically] reacting to things like medications or contrast dyes used in scans)…and the list goes on…and on…and on… How to handle doctors A lot of us are having trouble being taken seriously. I honestly do not have answers for this. Here are some things I have picked up along the way. Whether they will help or hinder will probably depend on your doctor.
Be persistent: I should have pushed harder for B12 to be tested. If you feel strongly something reasonable should be tested, push for it. If they refuse, ask them to write on your medical records that you asked for it to be tested and they said no
Only give relevant information: past trauma and mental illness are not (always) relevant. Doctors can and do use this to slap a “it’s psychological” label on people. I would avoid giving them any reason to do that. Stick to your current problems and do not deviate from that. (Of course, for many this whole ordeal is traumatic and you may want support for that. Personally, I would separate that from trying to get answers for your vaccine injury – separate medical appointments in my opinion). I wrote a thread here about fun ways to deal with neurologists who slap functional neurological disorder diagnoses on us
Move on: if a doctor seems dismissive even when you bring evidence, then find someone new. You may go through several doctors, but finding someone who believes you and wants to help you is essential in this journey
Take control: if a doctor starts mentioning that they think this is psychological or “functional”, ask for a copy of what they have written in your medical records. If you are not happy, get this information removed. You do not want it there for future doctors to make a judgement
Be informed: if the doctor diagnoses you with something you don’t think is right, or they dismiss/refuse to test for something you feel quite strongly about, ask what their differential diagnosis is, and how they have ruled that out. This is basically asking them “you say it is X and not Y, how have you ruled out Y [when you have not tested for Y]?”. Ask them to record their answer on your medical records for accountability. I would also be inclined to remind them how informed you are: ask how much time have they spent reading the vaccine injury literature, and what papers have they found particularly compelling. If they can't answer (which many won't), then reel off your vast research and remind them that you have been thinking about this nearly constantly for however many months. This of course may not go down well, but hey, dismissive doctors don't go down well either! If you're worried about hurting their feelings, remember crappy doctors are destroying your life. I think it's a fair trade.
Believe in yourself: doctors can do amazing things when they know how, like seriously impressive stuff in ridiculously high pressure life and death split second decision moments. When they don’t know how though, they have an amazing ability to make us feel like trodden on shit. In these moments you need to believe in yourself and remember that many others are suffering just like you. This is real. It is physiological. We don’t fully understand it but one day we will. This is not in your head. This is not “functional”. You are not making things up. You deserve tests. You deserve treatment. You deserve respect. You deserve life. Credit to Dr Kevin Deans for telling me this over and over and over again when I've been gaslit by other doctors!
We have a vast range of opinions and experiences in our community. Even when we disagree about things and have debates about how fucking complex and messy this all is, remember that at the end of the day, we are all here for each other. We are all living some version of the same hell. We have all felt lost, betrayed, confused, angry, sad, overwhelmed, and very few people on this planet will ever understand what we have and are going through. But we are a solid community, ready to support each other (and hopefully improve the next generation of vaccines, and improve the future of patient treatment).
I hope this is helpful to some of you. The ideas above have not been properly tested so please bear that in mind. We do not know the true implications, benefits, or risks. For those reasons, I think it is important to have a proper medical professional guide you in this journey to monitor how things are going. I would also encourage them to write up your case as a case study so we get better coverage in the scientific literature. Please stay safe, and as hard as it is, and as tempting as it may be, please don't believe the hype!
Read Harriet's Full Vaccine Injury Story Here: https://dontbelievehype.co.uk/life-of-a-scientist/f/i-am-a-covid-scientist-i-had-a-severe-chronic-vaccine-reaction
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