Tipps der PhD Nutrition & Metabolism Forscherin Harriet Carroll

Hier noch viel ausführlicher : https://dontbelievehype.co.uk/life-of-a-scientist/f/survivors-guide-to-legit-vaccine-injuries

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. This post is intended to help those who have had a chronic long COVID-like reaction to the COVID19 vaccine, and may also have some applicability for long COVID sufferers too. 

This blog is long. If you want the tl;dr version of what I think are the top and (relatively) hassle free ideas, please see this blog post. 

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; although limited, folk are reporting similar reactions to Novavax too) and more to do with the spike protein and the immune (hyper)reaction that causes. As some (I think a minority) 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). 

Remember that there is less evidence on the risks and benefits of the below for vaccine long haulers than we have for the COVID19 vaccines that got us in this mess in the first place

B12 deficiency: Anyone who read my initial post will know this is my bias as we initially thought this is the primary culprit in my reaction. In some folks, we think the inflammatory response from the vaccine caused demyelination/neurodegeneration and in those with baseline low B12 status and inadequate B12 intake (supplements or diet), B12 gets depleted as they try and remyelinate. This will usually lead to neurological problems. In our experience of a couple of cases, these symptoms may not be textbook, for example, experiencing fluctuations in symptoms. 

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). If your serum B12 comes back normal this does not necessarily mean you are not deficient. As many of use have neurological problems, there is clinical reason to explore further. You should get MMA and homocysteine checked. 

Treatment: Intramuscular B12 jabs every 2 days until symptom improvement has plateaued, then move onto oral supplementation. Sublingual B12 supplementation may also be an option, but this is not available on the NHS; therefore if you get sublingual supplements, it may be difficult to know the quality and purity of what you are taking. 

Update: study showing people with ME and fibromyalgia improve in a dose response manner with B12 and folate therapy, though there were some caveats (e.g. thyroid function and opioid use)

UPDATE: case study of me and similar case now published! Read a summary on Twitter here, or the full paper here. We are going to update this paper soon (when I get some final test results through) as we now are confident that B12 was not the primary pathology in my vaccine reaction; I am indeed a vaccine-induced long COVIDer. 

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. 

Tests: blood test for vitamin D (total vitamin D, vit D2, and D3)

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

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. It is worth noting that there are 2 "camps" in the MCAS world; many only recognise it as allergic-type reactions, whilst others (who I would argue are the real experts, e.g. Dr Lawrence Afrin, Dr Tania Dempsey) recognise it as a much broader condition. 

Tests: Tests are usually best done during a flare up of symptoms. Blood test would be for serum tryptase, and a urine test can look at N-methylhistamine, 11B -Prostaglandin F2α (11B-PGF2α) and/or Leukotriene E4 (LTE4). Info on MCAS here. However, Dr Lawrence Afrin, one of the world leaders in MCAS, states that if you have MCAS symptoms, and you respond to antihistamines, that is enough to fulfil a MCAS diagnosis. 

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. Other drugs may also be useful, such as cromolyn and anti-leukotrienes. 

A recent case study showed anti-histamines improved long COVID symptoms in 2 patients. 

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. 

Update: take a quiz here to see whether your symptoms match MCAS as well as other great information (I scored 101 🙃)

Related (in my case, and I imagine some others too, though not everyone of course): it seems vitamin D might help stabilise mast cells, so deficiency could maybe cause or exacerbate MCAS by proxy!

More related stuff: mast cells may be implicated in inflammatory demyelination and other neurological shitstorms

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, discussed below. 

Before moving on, I want to discuss my own n-of-1 case study briefly; you can read a bit more here. I had the CellTrend tests done (see below), and was positive for anti-MAS1, anti-alpha-2-adrenergic, anti-ACE2, as many of us have found. However, I also happened to have plasma frozen from before my vaccine, and low and behold, I was positive for these 3 autoantibodies before my vaccine too! This indicates that the vaccine (or SARS-CoV-2 infection) may not necessarily CAUSEthese autoantibodies (at least in some people). It also might mean that treating the autoimmunity may not be an optimal move. But we really don't exactly know. This is the problem with novel biomarkers, we don't fully understand what they mean. 

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. Indeed, I was negative for all of these. 

For more specialised testing, you will likely have to go private. CellTrend is leading the way and tests most of the below. 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 doctors may still refuse treatment options. However, many patients find having a solid diagnostic therapeutic in itself. As above though, whether these autoantibodies are truly and causally related to our condition is questionable. 

Commonly found autoantibodies include the following (below). A good review of most of these can be found here. 

Anti-ACE2 (angiotensin converting enzyme 2): The protein SARS-CoV-2 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  

Anti-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 

Anti-MAS-1 receptor: This is part of the angiotensin pathway. I struggle to fully understand the literature on this but it seems to be implicated in inflammation and cardiovascular function  

Anti-FGFR3 (fibroblast growth factor receptor 3): Autoimmunity to this is implicated in things like burning sensations (paresthesia) and other neuropathies

Anti-TS-HDS (trisulfated heparin disaccharide): This along with FGF3R is implicated in small fibre neuropathy and dysautonomia which a lot of vaccine long haulers seem to suffer with 

Update: saw this study in people with TS-HDS/autoimmune small fibre neuropathy, showing 12 out of 17 patients improved with plasma exchange, half got at least 1 side effect

Anti-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 

Anti-Beta adrenergic receptors: Some of these have been associated with postural tachycardia which many of us are suffering with. Together with muscarinic receptor autoimmunity, beta adrenergic receptor autoimmunity has been associated with chronic fatigue syndrome/ME 

Anti-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 and seems unlikely. 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. Additionally, not all autoimmune conditions are treated with these therapies which adds further credence for not going gung ho with treatments like steroids. 

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. Dr Bruce Patterson's group have recently shown evidence for distinct cytokine patterns in those suffering vaccine-induced long COVID symptoms, compared to infection-induced long COVID and other chronic illnesses. Chronic (neuro-)inflammation is associated with conditions like chronic fatigue syndrome/ME. 

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. Some have hypothesised that inflammatory proteins get "trapped" in microclots (see below), which may be why so many of us come back with normal inflammatory markers. 

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. 

The cytokine / chronic inflammation 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 

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 of things like 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 

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. Personally, I would approach with caution, particularly in the UK where transparency has not been forthcoming. 

Microclots: These are “mini” clots found in platelet poor 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. 

Tests: Outwith research studies (which use fluorescence), there are no clinical tests for microclots. 

🚨 Some places are claiming to measure microclots commercially. The methods used are NOT validated, and do not show microclots as we know them. Prof Doug Kell and Prof Resia Pretorius, the two leading experts in microclots, who validated their measurement in platelet poor plasma, have explicitly spoken outagainst these groups 🚨

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, Dr Beate Jaeger, Dr Asad Khan and Prof Doug Kell (and others) are leading the way with this. 

Venous oxygen saturation (SvO2) is also a useful measure. This is different to what pulse oximeters show (they show arterial oxygen saturation, SpO2). Venous oxygen should not really be lower than around 65 %. Lower than this suggests that your cells are so starved of oxygen that when the arteries delivery the oxygen, cells try and sook as much of it up as possible. In other words, cells are suffocating, and we think this might be because microclots are clogging small blood vessels (capillaries). Unfortunately (in the UK), SvO2 is NOT a routine measure. It is usually only done in hospital because that is where the equipment is and it is a time sensitive measure. However, myself and a few others have managed to get it tested without a hospital admission. Mine was 39 %. I have heard of vaccine injured folks with much lower. SvO2 does not PROVE microclots, but it helps build a clinical picture whereby microclots seem increasingly likely. 

You can also DIY test for microclots but please note this is an unvalidated methodso we do not know what the results truly mean. I have tried this twice and honestly I found the results hard to interpret (see image). Update: we tried two more times, see here and here. To do this, get a blood sample (in this type of tube, with citrate in it), centrifuge it at 3,000 x g for 15 minutes, pipette out the plasma from the top of the supernatent so it's hopefully platelet poor, 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. Personally, I do not think this is worth doing as the results are unclear and essentially meaningless. 

Treatment: This seems to be a rapidly growing field of clinical interest, but as yet, there are no clinical guidelines for microclots. Leaders in the field like Dr Beate Jaeger and Prof Resia Pretorius' group use triple anticoagulation therapy. From what I have heard, this is so far quite successful. However, you will struggle to get this on the NHS as there is no test for microclots, and therefore no recognised treatment. Indeed, many patients are travelling to Germany and South Africa to get the help they need. If you are willing and able, please donate here to help raise money so researchers can develop a clinically useful method of measuring microclots. 

In theory, aspirin and nattokinase may help, but as with anti-inflammatories this comes with significant risk, particularly of internal bleeding. I discuss these more here. 

Other stuff to consider...

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. Indeed, vitamin C may have antihistamine effects 

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 zinc can cause copper deficiency 

Copper: Similar to zinc, 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 high quality outcome 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 

Omega 3: I personally take this as a precautionary principle, i.e. if taken in reasonable doses, there is minimal chance for harm, but considering most of us are displaying symptoms of nerve damage, I figure it might help (or do nothing). This may be particularly pertinent for those who do not eat oily fish and other (usually animal) sources of omega 3 (e.g. vegans). Ideally you want both DHA and EPA. I take 1 a day of these (as a vegan friendly option if you're in the UK) 

Nattokinase: This has clot busting activity so may be helpful. It seems safe assuming you don’t have a bleeding disorder, like haemophilia. Lumbrokinase is similar and I think is more potent than nattokinase 

Moringa: Someone (sorry, I can't remember who) linked me to moringa and said it helps some people. I don't know much about. It seems to have anti-inflammatory effects. This was the article I was linked to which seems quite balanced and includes risks and medications you should not take with moringa, but makes a lot of claims that are not cited, so I would not trust this as an authoritative source. This review seems to suggest there is not much high quality research on it's uses in health. 

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 problemsthat many of us already suffer with 

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: This 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

RSLV-132: This seems to be in phase 2 clinical trials for long COVID, therefore, if shown to be effective, it may indeed help us too. According to the trial registration linked above, "RSLV-132 is an enzymatically active ribonuclease designed to digest the ribonucleic acid contained in autoantibodies and immune complexes and thereby render them biologically inert". This drug is more typically studied in the context of an autoimmune disease called Sjogren’s syndrome

Low dose Naltrexone (LDN): Naltrexone is typically used to treat opiate addiction. However, in low doses there is (some, very weak) evidence it may have efficacy in ME and chronic fatigue, MS, and Crohn's disease. However, I want to highlight that evidence is weak, and inconsistent, and the risks of LDN have not been properly quantified, especially in vaccine long haulers. There is a study underway investigating LDN with NAC for long COVID. Many vaccine long haulers, I would say particularly those with chronic pain (like small fibre neuropathy/similar) but also many others with non-pain symptoms seem to find LDN helps, likely due to its anti-inflammatory mechanisms of action. As such, it has been hypothesised to be useful for COVID-19 (see examples here and here). Sourcing LDN can be difficult and many have had to find somewhere private to prescribe it, then dilute the naltrexone themselves to make it "low dose". Please also note the side effects(particularly if the dosage is not diluted enough) can include: liver damage (especially at high doses), nausea, dizziness, abdominal pain, appetite reduction, headache, fatigue, insomnia, dizziness, depression. You will notice that many of us are already suffering these problems, so please take with caution and under proper medical supervision. More information on LDN here, courtesy of Christina Wood(who also sent me a couple other references in this paragraph)

More on LDN from someone on Twitter who didn't want credit: 

Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment - this is a single patient case study of a patient with severe POTS and MCAS who received LDN and IVIg and antibiotics to help with small intestinal bacterial overgrowth (SIBO). I am not sure we can make too many inferences based on this, but it is certainly interesting! 

Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) - this study looked at medical records of people with ME who take LDN and found a good safety and effectiveness profile. Again, we can't get too excited about this, but it helps us form a good picture of LDN having high potential.

The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain - this is a narrative review where the authors are decidedly pro-LDN, and they put forward what they think is a solid case for wider study in the treatment of chronic pain. They do rightly highlight many gaps in our knowledge about LDN, and that there are no large scale high quality studies to properly support LDN in clinical practice. However, it seems to have an excellent safety profile. 

For the geeks out there, here's a list of LDN studies that are going on...as you can see it may have potential way beyond the conditions described in this article!

Amitriptyline: This is a pain, migraine, and depression medication, which a few people have found success with, I think mostly those with chronic pain. As with other things, this can have side effects that many of us already experience like dizziness

Hyperbaric oxygen treatment: This is gaining significant traction and is something I am looking into. Nearly everyone has reported benefits. I talk about it more here, but in brief you go in a high pressure chamber whilst breathing in pure oxygen. This seems to have anti-inflammatory effects, whilst also forcing oxygen into our suffocating cells. For UK patients, see here 

Overin: Someone (sorry, please let me know if it's you and you want credit - I open tabs and forget to make a note of credits) linked to overin which I think they said is only available in Eastern Europe (or something). I have never heard of it and so cannot give any opinions. But maybe doctors can help you decide if this would be suitable (if it's licenced where you live). One of it's uses seems to be in MS so maybe there is something to it

Nicotinamide mononucleotide (NMN): Another one I've never heard of so can give no real insight on. Allegedly some have found some success with this. Christina Wood pointed me in the direction of this case study in which NMN seemed to help a patient with a COVID19 cytokine storm. I am not clear whether acute infection-induced inflammation relates to chronic vaccine reactions. It seems quite safe, but high levels of vitamin B3 may increase risk of side effects

Statins: Usually used to treat high cholesterol (which consistently has increased in many of us post-vaccine and post-infection), but it has anti-inflammatory effects too. As above, Dr Bruce Patterson's group often recommend these

Angiotensin receptor blockers (ARBs): Usually used to treat high blood pressure and heart failure, also have anti-inflammatory and anti-oxidative effects. Kidney function needs to be monitored on these, and since they're traditionally used for high blood pressure, they may not be suitable if you're suffering from low blood pressure 

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), VQ scan to check for signs of lung damage (associated with microclots)…and I’m sure I’ve forgotten loads! 

*EDIT RE TILT TABLE TEST: I recently learnt about the NASA Lean Test which is an easy enough (and validated) test you can do at home which mimics the tilt table test. You will need: a blood pressure monitor and a pulse oximeter. If you're in the UK, you can buy these here and here.  Lay on the floor for 10 minutes. At 5 and 10 minutes measure and record your heart rate and blood pressure (probably good to have someone help you). Then stand up with your feet about six inches from a wall, your body straight (i.e. your bum should NOT be touching the wall), and your shoulders leaning back against the wall. Measure your heart rate and blood pressure every minute (I don't think you need to measure this that frequently but I found the time trend at this frequency interesting to watch). If your heart rate increases consistently > 30 beats per minutes and your blood pressure does NOT become low (hypotensive), then you likely have POTS. I explain the science of this a bit on Twitter here. What is interesting to me is that I did this initially as I was recovering from a relapse, then the next week (after a generally good week), I repeated the test and it came back normal. This is important because it may indicate that timing of tests is important...particularly considering many of us get tests done and they come back normal (*screams into pillow*). 

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, impending feeling of doom/similar, funky blood pressure regulation, 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… 

That is a lot of information to take in. So below is a list of the thing I personally think you should ask your dr for

Nutrition: Particularly vitamin B12 (and if needed, it's cofactors MMS and homocysteine), folate, and vitamin D

Standard autoimmunity markers: Antinuclear antibody (ANA), rheumatoid factor (RF), tissue transglutaminase (tTG)

Inflammatory markers: CRP, IL6 (not all hospitals have access to IL6)

Clotting: D-dimer, VEGF (not all hospitals will measure this), activated partial thromboplastin time (aPTT), prothrombin time (PT) and international normalised ratio (INR)

Haematology: Full blood count

I would push for venous oxygen (SvO2) to be measured as well. It is highly unlikely they will say yes, but this test result is incredibly telling and cannot be ignored

What you can do for yourself: 

Dysautonomia: Buy an oximeter and monitor your heart rate for signs of POTS or other problems (including doing the NASA Lean Test described above)

Neurodegeneration/demyelination: Check your Romberg's sign, see here

Listen to your body: Rest if you need

Self-help treatments: Whilst I generally do not encourage self-help treatments to such an extent, the lack of treatment and care we are getting is beyond abysmal and myself and others strongly suspect doing nothing will lead to great long term harm. This blog post outlines what I think is most useful for most of us, based on what I think are the key pathologies (microclots and MCAS) 

If you have ME or fibromyalgia, this may be a useful article to read with regards to whether you should get vaccinated against COVID19: ME/CFS/FM Experts On Whether to Get Vaccinated – Take II, Plus the Coronavirus Vaccine Improvements Poll and a Roundup on Past Poll Results 

I would take this information with caution, as with the information I provided above...ideas to discuss with a suitably qualified medical professional. No studies have been done to test these ideas, so we know less about the benefits and risks than we do with the vaccines. 

Remember that a very common side effect of COVID19 is fatigue and vaccination should help reduce that. However, the reason I have included this information here is because it might be helpful for vaccine long haulers who are considering (for whatever reason) getting another vaccine 

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. 

Since doctors tend to trust the BMJ, you may wish to show them our rapid responseto a BMJ Editorial claiming that neurological events are unlikely caused by COVID19 vaccination. 

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. As Dr Kevin Deansrecently told us: it is your dr's job to believe you, not your job to convince them

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 Deansfor 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! 

@brucy7 

Wäre es nicht vielleicht übersichtlicher gewesen, die betreffenden Artikel zu verlinken, statt alles zu pasten?

Außerdem ist Harriet Schottin, nicht Amerikanerin. 🙂

/e: laut meiner Pulmonologin gestern ist der vq scan ne veraltete Untersuchungsmethode und findet deswegen heute kaum noch Anwendung. 

@cogitoergodumm oh.. ich dachte sie wäre Amerikanerin, danke für die Korrektur ! 

ich denke das kann man von beiden Seiten sehen. Es ergibt sich die Möglichkeit dadurch Dinge kurz zu überfliegen um zu wissen worum es überhaupt geht. Ich finds cool. 

Was ist denn dann die äquivalente neue Technik dazu ? 

Lg

@brucy7 

🙂 

Im Grunde nicht viel Neues, aber gute Zusammenfassung und Übersicht. Der für mich wichtigste Satz ist aber:

I had the CellTrend tests done (see below), and was positive for anti-MAS1, anti-alpha-2-adrenergic, anti-ACE2, as many of us have found. However, I also happened to have plasma frozen from before my vaccine, and low and behold, I was positive for these 3 autoantibodies before my vaccine too!

Nattokinase: This has clot busting activity so may be helpful. It seems safe assuming you don’t have a bleeding disorder, like haemophilia. Lumbrokinase is similar and I think is more potent than nattokinase 

Hat schon mal jemand die Lumbrokinase ausprobiert? Falls es wirklich besser, als die Nattokinase ist, wäre es doch mal ein Versuch wert, oder?

@thea

Habe mich auch Mal bezüglich Lumbrokinase schlau gemacht und ist halt mit 50€ relativ teuer für ein NEM. Zusätzlich lässt sich kaum etwas über dieses Zeug finden. Ist wohl so eine Art Extrakt aus Regenwürmern. Ob das jetzt der heilige Gral ist nach dem wir alle suchen 😀 

LG

Eine Frage in die Runde - hat jemand von euch schon einmal seinen svo2-Wert messen lassen ? Harriet ( die Betreiberin des oben verlinkten Blocks und Wissenschaftlerin) hat ihren messen lassen und er war deutlich zu gering bei knapp 35 Prozent. Nicht verwechseln mit dem Blutsauerstoffwert der routinemäßig gemessen wird. Der war bei ihr auch völlig in Ordnung. So wie bei den meisten wahrscheinlich. 

Ihre Aussage zu dem niedrigen svo2-Wert: 

Ich finde dieses SvO2-Ergebnis höchst interessant; es erklärt so vieles: warum ich so langsam gehe, Müdigkeit, Taubheit, Atemlosigkeit, Gehirnnebel usw. Zusammen glauben wir, dass dies tatsächlich auf Mikroklumpen hinweist .

--- 

Wäre ja vielleicht ein Ansatz. 

LG 

@ramon 

Ich war schon immer der Meinung, dass die Auto Antikörper nicht die einzigen Biomarker sind und wahrscheinlich sind sie auch nicht der Auslöser, aber ein Kofaktor, der post-vac begünstigt.

@tobias93 hab mir bei meinem einen Aufenthalt im Krankenhaus bei der Aufnahme ne Blutgasanalyse erbettelt, aber das wurde kapillär gemessen, was von den Werten näher an einer arteriellen BGA ist als an einer venösen (das ist das v in svo2). Da ich Raucher bin, habe ich da eh verfälschte Werte. 

Hat wer Harriets aktuellen Eintrag gelesen? 

Sie kontaktiert das schottische Gesundheitsamt in ihrer Kapazität als NHS-Forscherin zu Sars-cov2 und als Impfgeschädigte.

Kommt das jemandem bekannt vor?

@cogitoergodumm ah okay, vielen Dank! Habe nächste Woche einen Termin beim Kardiologen. Mal schauen ob er mir bei dem Anliegen weiterhelfen kann bzw. möchte 🙂 

PS: Hammer hart der Bericht aus Schottland, es lässt ein gewisses Muster erkennen und dazu braucht es keinen Aluhut. 

@cogitoergodumm Hammer hart. Erst wird einem die Wahl und dann die Würde genommen. 

Das mit den Microclots scheint mir irgendwie gefühlt in die richtige Richtung zu gehen. Das würde meine monatelangen Beinschmerzen erklären. Viele hier berichten ja ähnliche Beschwerden. Ich habe inzwischen gelesen, sie sind typisch für Durchblutungsstörungen. Ich hatte das vorher nie und inzwischen zum Glück auch nicht mehr. Also solche Schmerzen ohne dass es eine richtige Thrombose ist, könnte passen.