I read you in total post on your treatment and ailments. I too have almost the exact same symptoms. Got second dose of Pfizer vac in aug 2021 and since then my works has turned upside down. I've seen every type of dr under the sun. Finally saw an immunologist who did genetic testing and discovered and mitochondrial myopathy. My follow up in Jan 9 to discuss further and Treat plan. I believe whole heartedly the vaccine caused this gene to ignite because I never had any issues like this prior to vaccine. I'm at A loss. 36 year old women and three little boys ages 5,3 and 1. I just want to feel and be their normal mom again❤️
Maybe this is an explanation for other symptoms as well.
https://vestibular.org/forum/dizziness/covid-19-vaccine-side-effects/paged/980/#post-22026
thank you. I don't even know where to begin. I'm so scared anxious nervous. All I do is cry
Hello everyone.
I've had a long absence but I am back for a follow-up. Please copy and paste this data to your phone/computer for safe keeping in the event it disappears.
My wife has undergone testing by some of the top experts in the nation, and the summation is - she has vaccine induced POTS, but that all of it may be Mast Cell Activation Syndrome initiated or exacerbated by the mRNA vaccine. We believe based on all available evidence that this is actually what the vaccine is doing to many, and potentially most people. The reason this is so hard to pin down is because the systems are varied based on which system is impacted and the triggers are varied.
I STRONGLY encourage anyone with any vaccine side effects to examine Mast Cell Degranulation, MCAS/MCAD, and related systems it impacts, and the symptoms it can present. My theory is mRNA transcode errors cause the body to view these impacted areas as being pathogenic, damaged/injured, or foreign invaders. As a response to this, the body rushes in mast cells, degranulates them as if there is an injury at the particularly impacted site/organ, or even systemically in some people.
You can determine which area has mRNA transcode errors by examining where you have 'flare ups'. I am presenting symptoms of mast cell degranulation events on a per-site basis below to help you extrapolate where the mRNA transcode is failing, causing the body to view the mRNA as a injury/pathogen/etc. Applying this technique SHOULD allow most people to do some targeted mast cell stabilization to those areas with appropriate therapies/modalities/supplements, etc.
EXAMPLE: If the Ophthalmologic systems are impacted, support for the eyes may prove essential. Ketotifen or Hypochlorous Eye drops to stabilize mast cells. Lutein/Zeaxanthin for supplemental support. A good anti-oxidant eye drop like Bio-Pure (with lubrication) may actually sporadically resolve mRNA errors pinned to the cells of the eye and drop degranulation events significantly.
Systemic Mast Cell Stabilization techniques can be implemented along with targeted responses to impacted areas. For example you can take a probiotic with histamine dissolving strains such as 'Mood Super Strains' which have all of the system mast stabilizer strains. You can increase Vitamin C (Ester-C or Lipsomal are best IMO). You can add Dihydroquercetin or Quecetin, Bovine Colostrum, Humic/Fulvic Minerals, increased D3/K2, Meriva, Apigenin, Myricetin, DAO, etc. Then add in stress reduction techniques, good sleep, and most importantly dietary/FOODMAP type of changes. This may provide systemic relief, especially when combined with targeted therapies for specifically impacted areas.
First, use my information below to determine impacted systems;
Common constitutional symptoms of Mast Cell Activation Syndrome (MCAS) include fatigue, malaise, suddenly feeling hot or cold, inappropriate sweats, flushing, unprovoked changes in appetite or weight.
Dermatologic: Common dermatologic symptoms of MCAS include rashes and lesions of many sorts (e.g., migratory and waxing/waning patches of redness, acne-like folliculitis), itching, flushing (sometimes migratory), swelling (often migratory), pregnancy-like purplish lines/bands ("striae") about the abdomen, flanks, armpits and/or hips, redness in the track of a scratch ("dermatographism"), poor healing, and nail issues (e.g., brittleness, longitudinal ridging, "white spots" (dyshydrotic eczema); ingrown nails, too, are seen sometimes).
Ophthalmologic: Common eye symptoms include irritation and inflammation of the eyes (often described as feeling "sandy," "gritty," "dry," and usually without any clear infection to account for it), usually fairly brief episodes of difficulty focusing vision, eyelid tremors/tics ("blepharospasm"), and unusual sensitivity to either bright lights or lights of certain colors.
Otologic: Common ear symptoms include ringing in the ears and irritation and inflammation in the ears. Less common are a sense of chronic fluid build-up in the ears, hearing loss (one-sided or two-sided), or uncomfortable heightened hearing sensitivity.
Nasal/Oral: Common oral and nasal symptoms include ulcers and pain (sometimes described as "burning"), white patches about the tongue or other surfaces, swelling of the tongue or other surfaces, sensitivity and/or deterioration of the teeth and/or gums despite reasonably good attention to dental and gum hygiene, alterations in the sense of taste, throat irritation/soreness/inflammation and/or hoarseness (without any infection clearly being present to account for it), difficulty swallowing, congestion of the sinuses and nose, sores up inside the nose, and nasal and post-nasal drip.
Lymphatic: Common symptoms of the lymphatic system include a diffusely migratory, waxing/waning enlargement and/or irritation/inflammation of the lymph nodes, typically about the neck and in either armpit and to either side of the groin, but possibly in other areas, too (including in the spleen, the body's largest lymph node, which often is felt as a left upper quadrant abdominal discomfort).
Respiratory: Common respiratory tract symptoms include painful discomfort at any level of the respiratory tract, bronchitis, cough, shortness of breath (often modest and inconstant; "from time to time, I just suddenly can't catch a deep breath" is the most common phrasing MCAS patients use to describe their shortness of breath). Frank wheezing is not seen all that often, and when it's present during the episodes of shortness of breath, it's usually fairly subtle. Obstructive sleep apnea can happen, too, even in patients who are not morbidly obese.
Cardiovascular: Common cardiovascular symptoms and findings include palpitations, lightheadedness, unexplained/unexpected hypertension and/or hypotension, palpitations, chest discomfort or pain (usually non-anginal in character), vascular malformations such as aneurysms or hemorrhoids or hemangiomas or telangiectasias).
Gastrointestinal: Common gastrointestinal symptoms include pain/inflammation (often migratory) in one or more segments of the GI tract, gastroesophageal reflux, abdominal discomfort/pain, abdominal bloating (usually shortly following meals), unexplained/unexpected fluctuations in appetite and/or weight, queasiness, nausea (vomiting is relatively uncommon), and diarrhea (or "soft stools") and/or constipation (often alternating). Blood in the stool can happen but is pretty uncommon.
Urinary: Common urinary symptoms include unusual frequency of urination, difficulty initiating urination, inability to fully empty the bladder, and painful urination (as if a urinary tract infection is present, except that testing can't find clear evidence of infection). Flank or abdominal pain from kidney stones can happen but is not all that common. Blood in the urine can happen but is pretty uncommon.
Genital Tract: Other than decreased libido and erectile dysfunction and possible fertility issues, genital tract symptoms are uncommon in men but may include inflammation of the prostate or other parts of the genital tract. In women with MCAS, genital tract symptoms are common and include an inflamed and/or itchy vulva and/or vagina (often mistakenly attributed to, and treated as, bacterial or yeast infections even though no evidence of infection can be found), inappropriate/dysfunctional uterine/menstrual bleeding, and painful intercourse. Endometriosis seems somewhat common, too.
Pregnancy: Women who have MCAS also can have decreased libido and fertility challenges. Women with MCAS who become pregnant sometimes experience early miscarriages, excessively severe or prolonged vomiting ("hyperemesis gravidarum"), the assortment of high blood pressure and other problems collectively called pre-eclampsia, and pre-term labor. In delivery, women with MCAS sometimes find difficulties tolerating, or getting relief from, anesthetics.
Muscular: Common muscular symptoms include migratory pain and weakness.
Skeletal: Common skeletal symptoms include migratory pain. Fractures are uncommon but can happen from loss of skeletal strength, and these include vertebral fractures which can lead to loss of height.
Joint: Common joint symptoms include migratory pain; migratory swelling and even redness, too, can happen, but usually are not as prominent as pain.
Neurologic: Common neurologic symptoms include headache (including migraines), episodic lightheadedness/dizziness/vertigo (which can happen either when getting up or even when lying down or sitting or after already been up for a while) (total loss of consciousness can happen but is much less common than lightheadedness), tingling/numbness (most commonly in the hands and feet but potentially anywhere), weakness, tics/tremors, and a wide variety of sleep disruptions (most commonly insomnia and frequent waking and non-restorative sleep but also excessive sleep, sleepwalking or sleep talking, sleep paralysis, or night terrors).
Psychiatric: Common psychiatric symptoms include anxiety (sometimes even to the point of panic), depression, mood lability, anger, attention deficit, and a wide variety of aspects of cognitive dysfunction, most commonly issues with memory, word-finding and concentration. "Disassociation" or "depersonalization" is occasionally seen. Frankly psychotic behaviors (e.g., auditory or visual hallucinations) are fairly uncommon.
Endocrinology: Common endocrinologic/metabolic issues include delayed or premature puberty, excessively painful and/or irregular periods, excessive menstrual bleeding, weak bones, thyroid abnormalities, high cholesterol or triglycerides, high glucose levels (usually diagnosed as diabetes mellitus) or low glucose levels (sometimes rapid alternation among normal and low and/or high levels), and selective abnormalities in absorbing or transporting or using certain important minerals and vitamins (e.g., iron).
Hematologic: Common hematologic and clotting system issues include modest abnormalities in blood counts, easy bruising, and easy bleeding (for example, excessive menstrual bleeding or easy nosebleeds). Excessive blood clotting is a good bit less common than easy bruising/bleeding.
Immunologic: Common immunologic issues include prolific and/or unusual sensitivities/reactivities/allergies, impaired healing, an unusual extent of autoimmune diseases, increased susceptibility to infection, and difficulty recovering from infection.
Next, you need to find mast cell stabilizers and anti-oxidant/support therapies for the impacted systems and apply them appropriately and examine your success/failure, and adjust according. I may be recommended to apply systemic therapies and lifestyle changes along with targeted therapies. Top overall Mast Cell Stabilization substances are categorized here for you;
The “A” Team:
Quercetin – 2000 mg daily, dose divided
Green tea (EGCG, L-Theanine) – 2 to 3 cups daily. Supplement with 500 mg (175 mg of ECGC) twice daily
Curcumin (Meriva is a common brand name) – 1 to 4 g daily, dose divided
Chamomile tea (Apigenin, luteolin) – 1 to 2 cups before bed
Resveratrol – 20 mg twice daily
Diamine oxidase enzymes (DAO) – 2 capsules with each meal
Vitamin C – may need a non-citrus source such as rose hips – 1 to 3 g dailyThe “B” Team:
Luteolin – 100 mg twice daily
Ginkgo biloba – 500 mg daily
Silymarin – 500-1000 mg daily, doses divided
Shea oil – 3 capsules daily
Ellagic acid – 500 mg daily
Pycnogenol – 500 to 1000 mg daily
Magnolia/Honokiol – 200 to 250 mg twice daily
Parthenolide (Feverfew) – 200 to 400 mg twice dailyThe “C” Team:
Fiestin – 100 mg twice daily
Rutin – 200 mg daily
Genistein (isoflavone)
Mangostin (often taken as a juice) – 500 to 1000 mg daily
Xanthium (dihydroleucodeine, also known as cocklebur) – 6 to 9 capsules daily
Isatis (indoline) – 6 to 9 capsules dailyOther things to consider in MCAS:
Ensure you have sufficient magnesium levels, as a deficiency has been shown to induce the emergence of mast cells, particularly in the liver. Magnesium also has hundreds of other important functions in a healthy body.
Zinc is another mineral you should ensure you’re getting enough of because it is important in appropriate mast cell signalling.
Stress reduction is also important in stabilising mast cells. When you’re stressed, your body releases corticotropin-releasing hormone (CRH), which is associated with the activation of skin mast cells. Incorporate meditation, yoga, breathing exercises and other stress-reducing techniques into your daily life.
Maintaining a schedule is a great way to help stabilise your mast cells because they exhibit circadian rhythm patterns. Try to wake up and go to sleep at the same time each day. Also, avoid electronic screens before bed or wear a pair of blue-blocking glasses for better hormone regulation.
Correct gut dysbiosis – Correcting the balance of your gut microbiome has been shown to reduce inflammation and improve immune system health. Specifically, there are certain strains of probiotics that have been shown to help breakdown histamine, including:
Bifidobacterium adolescentis
Bacteroides thetaiotaomicron
Bacteroides fragilis
Lactobacillus rhamnosus
(Mood Superstrains is VERY good blend for Mast Cell IMO)
All of this should provide the catalyst on your road to recovery. Please share this with others. We've got concrete medical evidence now in terms of my wife after hundreds of thousands of dollars in testing from some of the top medical professionals in the fields related to such matters to feel confident enough to provide this data.
Disclaimer: Only your doctor can recommend treatments, and should be consulted before following any advice here. This is not medical advice and is only for research/documenting purposes.
Jason: Thank you so much for the very informative post. In brief, I had my booster in Dec, 2021 and got sudden on-set tinnitus 6 weeks later, accompanied by a brain fog and severe anxiety. Tinnitus is my biggest issue & concern. I have tried a regimen of vitamins & supplements (C, D#, B12, Turmeric, Krill oil), with limited to no results. I've felt like the T was get better a few times only to have it come back as bad as before. My T is definitely in my head vs. in my ear, and is a high-pitched electric-type squeal. I believe this is an indication that both the Spike protein created by the vaccine and my immune system antibodies cross the blood brain barrier, causing some sort of inflammation or damage, thus resulting in tinnitus, etc. I am starting to feel like this is going to be permanent, which certainly impacts my life. You seem to have more info from direct research than anybody else I've seen on this forum. Some questions for you:
1: Did you wife get tinnitus and, if yes, has it resolved to any degree?
2: In your research did you find anything that would indicated that tinnitus from the vaccines is either temporary or permanent?
3: Do you have a recommended regimen of vitamins & supplements that would specifically address my tinnitus, or the brain fog & anxiety?
4: Is there a specific lab test to diagnose MCAS? Are elevated cytokines a part of MCAS?
5: Last question, did you wife ever have a positive test result for auto-immune antibodies? I did have one but there was no specific auto-immune antibody detected. A lot of people on the forum indicated the same thing happened to them. Is this a sign of MCAS?
Thanks again for taking the time to share all of the information you have gathered. I'm sure your post will elicit a lot of responses like mine, so I appreciate any feedback you can offer.
The@carlapucci
Oh wow this is not a possibility I have thought of, I will certainly look into gene testing as well. Do you feel that your family condition is hereditary and activated by the vaccine or do you feel the vaccine may have caused cellular damage?
I’m sorry you are struggling, I find it difficult to cope with my 1.8 year old as it is and can’t imagine the burden you are going through with 3 children. Have you seen any improvement in your symptoms? You will absolutely get through this, people are recovering with similar symptoms to us and I stay 100% hopeful that things will continue to improve.
@plandistry
Thank you for your feedback! I have noted some very useful suggestions I will certainly try.
Please keep us posted with your progress and improvements!
@plandistry: Thank you so much for the very informative post. In brief, I had my booster in Dec, 2021 and got sudden on-set tinnitus 6 weeks later, accompanied by a brain fog and severe anxiety. Tinnitus is my biggest issue & concern. I have tried a regimen of vitamins & supplements (C, D#, B12, Turmeric, Krill oil), with limited to no results. I've felt like the T was get better a few times only to have it come back as bad as before. My T is definitely in my head vs. in my ear, and is a high-pitched electric-type squeal. I believe this is an indication that both the Spike protein created by the vaccine and my immune system antibodies cross the blood brain barrier, causing some sort of inflammation or damage, thus resulting in tinnitus, etc. I am starting to feel like this is going to be permanent, which certainly impacts my life. You seem to have more info from direct research than anybody else I've seen on this forum. Some questions for you:
1: Did you wife get tinnitus and, if yes, has it resolved to any degree?
2: In your research did you find anything that would indicated that tinnitus from the vaccines is either temporary or permanent?
3: Do you have a recommended regimen of vitamins & supplements that would specifically address my tinnitus, or the brain fog & anxiety?
4: Is there a specific lab test to diagnose MCAS? Are elevated cytokines a part of MCAS?
5: Last question, did you wife ever have a positive test result for auto-immune antibodies? I did have one but there was no specific auto-immune antibody detected. A lot of people on the forum indicated the same thing happened to them. Is this a sign of MCAS?
Thanks again for taking the time to share all of the information you have gathered. I'm sure your post will elicit a lot of responses like mine, so I appreciate any feedback you can offer.
hi all, I’ve been lurking through your comments for about 6 months now desperately looking for a “cure” so to say..
to sum up my story, i’ve had every possible symptom on this forum and fast forward to now, dizziness (like im falling), high heart rate spikes, and fatigue are still the main ones. 10 months after my vaccine, I feel only about 60% back to normal.
my main problem is the POTS symptoms. my heart rate rises to 105/110 when i stand and 120/125 when I walk! and even a simple walk to the kitchen feels like i’ve run a marathon. (easier described than experienced)
just wanted to see if there are others who have experienced this? or anyone who’s recovered from this? i just turned 26 and never in my life have I ever experienced anything like this. im so scared of staying like this for the rest of my life..
it would also be great if people who were posting in the beginning of this forum could come back even for a little bit and update us on how they’re feeling now..
thanks for reading and you’re all in my prayers every night
how are you? Any improvements?
@plandistry: Thank you so much for the very informative post. In brief, I had my booster in Dec, 2021 and got sudden on-set tinnitus 6 weeks later, accompanied by a brain fog and severe anxiety. Tinnitus is my biggest issue & concern. I have tried a regimen of vitamins & supplements (C, D#, B12, Turmeric, Krill oil), with limited to no results. I've felt like the T was get better a few times only to have it come back as bad as before. My T is definitely in my head vs. in my ear, and is a high-pitched electric-type squeal. I believe this is an indication that both the Spike protein created by the vaccine and my immune system antibodies cross the blood brain barrier, causing some sort of inflammation or damage, thus resulting in tinnitus, etc. I am starting to feel like this is going to be permanent, which certainly impacts my life. You seem to have more info from direct research than anybody else I've seen on this forum. Some questions for you:
1: Did you wife get tinnitus and, if yes, has it resolved to any degree?
2: In your research did you find anything that would indicated that tinnitus from the vaccines is either temporary or permanent?
3: Do you have a recommended regimen of vitamins & supplements that would specifically address my tinnitus, or the brain fog & anxiety?
4: Is there a specific lab test to diagnose MCAS? Are elevated cytokines a part of MCAS?
5: Last question, did you wife ever have a positive test result for auto-immune antibodies? I did have one but there was no specific auto-immune antibody detected. A lot of people on the forum indicated the same thing happened to them. Is this a sign of MCAS?
Thanks again for taking the time to share all of the information you have gathered. I'm sure your post will elicit a lot of responses like mine, so I appreciate any feedback you can offer.
just wondering if you ever tried magnesium?
@margaret2022: I tried magnesium, long with a few other vitamins and supplements, last spring for a few months. It is not in the regimen I'm taking now. I probably should add it back. i understand the Glycinate form is preferred. Did you try it and did it have any affect?
I am getting more and more worried that the issues I'm dealing with are going to be permanent. I keep coming back to MCAS and/or a cytokine storm but don't have a clue as to how to actually get tested/diagnosed for that, and what/how to treat it. Now everything that pops up with me I attribute to the vaccine, which is likely not accurate to do. I've definitely experienced an increase in eye floaters over the past year or so, or maybe I'm just noticing them more. I've had them in both eyes for years so I'm probably being over-reactive about it. My vision seems to have gotten a little worse too, but i probably am just due for a current eye exam / new glasses. If my foot falls asleep or if my face feels a little tight, I jump right to "it's a neuropathy from the vaccine". My booster was 11 month ago and I don't think I should be getting any new issues this late in the game. That said, I've read where they don't expect the real level of adverse side effects of these vaccines for years/decades.
The whole tinnitus, anxiety, my body constantly feeling like it's in "fight or flight" mode is wearing me out. I know I should get back on my SSRI, but I'm afraid that it may exacerbate my tinnitus because SSRI's are known to be ototoxic. So I probably have at least a partial cure right in front of me but I'm too scared to try it. And I can't talk to my family about it, they simply think it's my normal anxiety and that getting back on the SSRI would solve everything (and they may be right).
How are you doing? I've read many of your posts and know you have been through a lot. Have you found any relief from any of your side effects? Which ones are causing you the most discomfort? Any progress with doctors at least acknowledging that these issues can be caused by the vaccines?
I saw a holistic dr that could not get to the bottom and luckily she referred me to dr ambrus he is in Buffalo ny. He ran genetic testing which was very expensive but gave me answers. I totally believe the vaccine unhinged my gene mutation. Mitochondrial myopathy is not a good diagnosis though...no cure only supportive treatment. Now I pray and wait that supplements and probably iv infusions can put this atleast into remission.
I wonder if that's what a lot of you are dealing with though bc all our symptoms sound so similar. Hope you find some answers. I know I wanted them but I will not lie this diagnosis is life changing:(
I’m so sorry for that. I had no idea. I really hope the supplements work for you. I wonder what type of medication regimen they use for that diagnosis. Keep us posted. I wish you nothing but the best on your journey.
@j still struggling. My second mri showed no change. Have another neuro appt and mri schedule for dec 9.
I did see an immunologist in the mean time who ran genetic testing and discovered a mitochondrial myopathy that he believes was triggered by the vaccine waiting for so follow up jan 9 to see where to go from here. This is a nightmare. I pray to God I can get healthy again. How are you doing?
Hi Carla, it is excellent news that you have no additional brain lesions. Regarding “mitochondrial myopathy” do your symptoms line up with that condition? Just wondering if you could text positive for it, but have no related symptoms and maybe all symptoms are just the vax reaction?
I am not great like all of us. Currently: headache for a month, retinal hemmorrhage for. I reason (luckily it will apparently repair itself within 3 months and not in my field of view), neuropathy in forearms pretty constant, upper eye socket pain, nerve pain in hands/feet but not constant. New referral to opthomologist and another MRI requested (family doc worries about blood pressure and lasting headache). My blood pressure is 108/68 at home and 138/? In doctors office because of stress I guess…and chest pain back for last month.
not fun for any of us
if you are interested check out the Yale LISTEN study (put LISTEN in your search bar). They are recruiting international participants (vaccine induced long haul & long COVID patients are elligable). I signed up. You get access to study results pretty regularly - there is a town hall I am dialing into tomorrow night to hear the latest.
Very quick update, just got seen after 4 months waiting list by a doctor studying these issues.... Blood sample under microscope to understand whats going on... I have red blood cell clumping, some traces of graphene, and around it the blood cells disperse.... My mom had good flowing blood cells but pretty big pieces of graphen crystals, some are more visible because they have tried to hide the graphene with an silicone agent to make it less visible..... However we have been given a detox protocol for a month and see how things go.. Will keep all posted
nice