@asanders: Thanks for posting your update. Sounds like you are making some progress. Question: You mention that your tinnitus is virtually gone. I'm very glad to hear that (pardon the pun) as I got tinnitus from my Moderna booster about 4 months ago. Is there anything you can point to, like a specific supplement, treatment, etc. that you believe helped resolve the tinnitus? Or do you think it was just a matter of passing time? I am hopeful that mine is not permanent. Thanks again and positive thoughts for your continued recovery.
Hope your tinnitus goes away soon as it has for some others. If you are interested, Dr. Been recently posted a video on tinnitus after covid vaccination:
It seems, if I understand it correctly, a lot of our (or rather my) symptoms are an over-reaction of the immune system, ie. an over-reaction to the spike protein. Has anyone taken a SHORT course of steroids, like prednisolone, to suppress our immune system?
That will not work to heal/cure. May help quite a bit as bandaid for symptoms. Problem is you can't easily stay on steroids forever. Better to treat the cause(s) as much as possible directly. It's also a mix: some people are suffering as a result of too weak an immune system initially; later though most end up with hyper-immune systems. And yet, many people out there keep taking things to "broadly" boost their immune systems with supplements. Quite interesting.
I'm 4.5 months into this and except for blood pressure and insomnia, I'm now 95% healed: extensive skin rashes gone, burning skin sensations gone, random body muscle twitches gone, upper left chest deep pressure and burning pain (likely pericarditis) gone, all different types of headaches gone, right ear twitching 90% gone (generally about 12 - 15 times a day now vs. almost constant before). For BP and insomnia, now well controlled on meds for both for now and just time now.
And this coming out of 5th vaccine in Jan. So it's definitely possible to heal. And I'd say in my case less about time and more about aggressive treatment starting within 8wks of this all starting.
What treatments did you take so far?
@mike411, I may have missed this entirely and if I have, pls forgive me (my brain fog is BAD these days). I am 6 months out from the 2nd Pfizer injection. Is it worth me following the regime you're recommended this far out? Also, how long does one stay on this regime for?
Ivermectin is not available where I live. Maraviroc, I am not sure I can convince my GP to give it to me. He may acquiesce on the statins since I have borderline high cholesterol due to being Hashimoto's. Fluvoxamine I am not convinced my GP will give it to me either, since I already suffer from some of the side effects listed, ie. dizziness, headaches, insomnia, nausea, anxiety/restlessness. I am already on Quercetin, Omega-3, Vit C etc. Looking into H1&H2 blockers. I'd love to know your thoughts (again). Thank you.
6 months out is fine to start. The mRNA vaccines 'can' (does not always happen) keep the body producing new spike for up to 4 months so it can be challenge anyways in the first few months so you should be in good shape and before things get too set.
For how long, it would likely be at least 3 months and then evaluate where your symptoms are at. Even if doing well, might want to add 3 months to whenever symptoms improve to help protect again relapse potential; 6 months would be pretty typical average. I actually plan to stay on for 6 months post my last symptoms (except BP, which is autoimmune so not counting that one).
If that's the case, would definetely focus on atorvastatin to ensure coverage into brain tissue. The watchout with it is when starting there can be a few days to a week for body to adjust. I have no dizziness or GI issues and switched from another statin (rosuvastatin) and the first few days I had alot of dizziness and nausea that slowly tapered off over the first week as my body adjusted. I'm taking 20mg which I believe is the most effective dose for this purpose. I just sucked it up and dealt with symptoms for a few days. The alternative would be to split the 20mg in half first week and just take 10mg and then once adjusted, 2nd week go up to 20mg. Take at night. That is already suggested timing for statins for maximal cholesterol effect and also will help limit side effects as you rest/sleep after taking.
I'd focus on what you can get: statin, aspirin, and supplements. Diet is going to be more important for you in that case. Would look at probiotics, good daily diet (low histamine if needed, otherwise low inflammation diet) and look at 3 to 5 day fasting every 6 to 8 weeks; will help with calming/resetting immune system (process of autophagy).
Mike, thank you sooo much!!
My main concern with the statins, as you've pointed out, is the dizziness . In fact, vertigo (room spinning) and dizziness (feeling unbalanced, feeling like you're in a boat) are my top 2 concerns. I had both and other symptoms a few years ago. Had a 3-year remission and Pfizer brought them all back and added a few others!!
I figure that the root cause is Hashimoto's. So my autoimmune system has gone into HYPER overdrive, triggered by the Pfizer vaccine (and before that, as I mentioned, by Botox). My TPO is now through the roof!! Just some background.
Might it be ok if I were to split the 20mg dose into 3 or even 4 parts?
I also have GI issues (leaky gut, hence constipation and nausea etc). But I fear that vertigo and dizziness may be worsened by the statins.
I am on a low HI diet. Will get the aspirin too. Not sure which probiotics are good when you're on a low HI diet. Will have to do some research.
(Still not sure about the fasting. I've gone very skinny due to malabsorption of foods and being on a low HI diet, not much I can eat. I get the shakes badly when I'm hungry).
Thank you again.
You can split the statin pill into smaller pieces and trying spacing out doses and also start with smaller daily dose and try working up over a few weeks; take it slow. The pills are not extended release or anything so no issues splitting. I think you are likely to have issues, particularly with atorvastatin, if you go too fast. Alternatives would be to look at pravastatin for some benefit in body; though it won't penetrate into brain. The upside, is because it doesn't penetrate into brain, it should have much lower side effects there as result. The other option, which is a bit weaker still in Niacin. It does not help with cytokine inflammation so much but it does help (down regulate) with the fractalkine receptors which is the primary focus of the statins. The trick with Niacin is getting the dose right: need a pretty large dose for this effect and too much Niacin can have serious side effects of its own.
If you have GI/leaky gut, you really want to look into adding probiotics. I don't have histamine issues so my regime is simply focused on best strains and sources for enhanced GI support and optimizing entire body immune system. If you have histamine issues, you need to spend time looking at strains and sources to ensure they won't present an issue. Some strains can trigger histamine and some probiotics use milk/yogurt proteins that can be problematic. In general though, you want to get to a good probiotic blend that you can work up to 100 billion + daily. A cup of yogurt/kefir and/or one pill alone is not going to get you there for the most part. I'm taking 300 billion plus (with good amount of prebiotics) to really push it hard. I didn't want to eat up time working up to dose so just went all in at beginning and put up with ALOT of gas and bloating. But it was so worth it. After 3 weeks, things settled down and it was a great move. Gut tissue has so much surface area interface with the body that improving its functioning and boosting immune system thru it can be very rewarding with time!
Thank you sooo much, Mike. I will look into your recommendations. I am really scared though of reacting to anything new. So will start at very low levels and go slowly up.
@mike411 I am going to do the Incell DX test and the celltrend.de tests. I have a question for you--will a lab do the celltrend test without a doctor's order? I'm a little confused about this. Also, about the INUSphereses, I was initially interested in this too, but then I read that the antibody removing filters process also involves replacing one's albumin with other "human" (!) albumin, which can cause some super strong reactions. Is there another way to remove the antibodies without adding foreign albumin?
@asanders: Thanks for posting your update. Sounds like you are making some progress. Question: You mention that your tinnitus is virtually gone. I'm very glad to hear that (pardon the pun) as I got tinnitus from my Moderna booster about 4 months ago. Is there anything you can point to, like a specific supplement, treatment, etc. that you believe helped resolve the tinnitus? Or do you think it was just a matter of passing time? I am hopeful that mine is not permanent. Thanks again and positive thoughts for your continued recovery.
Hope your tinnitus goes away soon as it has for some others. If you are interested, Dr. Been recently posted a video on tinnitus after covid vaccination:
I really have no idea why or how tinnitus is resolved. Perhaps this is just temporary and it will come back too.
My other symptoms, especially burning, prickling, twitches and muscle-bone pain all came back after a 2 week remission. This is really becoming a vicious circle for me. 3-4 weeks of high inflammation with a lot of pain followed by 1-2 weeks of remission and then again the same cycle. But each circle leaves some permanent damage.
I don't know how this remission flare circle starts and stops, but this time when I was feeling really good, I decided to eat a small pizza and then immediately my symptoms started..I dont think that was a coincidence.
I believe most of my problems are because of the inflammation inside the blood vessels, so no neurologist or rheumatologist can help with this. Actually, no one can help. The only solution seems to have Plasmapheresis as suggested in Dr.beens videos, but I cant even make my doctors believe I have a real problem, convincing them that I need an expensive procedure like plasmapheresis seems impossible.
@asanders: Thanks for posting your update. Sounds like you are making some progress. Question: You mention that your tinnitus is virtually gone. I'm very glad to hear that (pardon the pun) as I got tinnitus from my Moderna booster about 4 months ago. Is there anything you can point to, like a specific supplement, treatment, etc. that you believe helped resolve the tinnitus? Or do you think it was just a matter of passing time? I am hopeful that mine is not permanent. Thanks again and positive thoughts for your continued recovery.
Hope your tinnitus goes away soon as it has for some others. If you are interested, Dr. Been recently posted a video on tinnitus after covid vaccination:
I really have no idea why or how tinnitus is resolved. Perhaps this is just temporary and it will come back too.
My other symptoms, especially burning, prickling, twitches and muscle-bone pain all came back after a 2 week remission. This is really becoming a vicious circle for me. 3-4 weeks of high inflammation with a lot of pain followed by 1-2 weeks of remission and then again the same cycle. But each circle leaves some permanent damage.
I don't know how this remission flare circle starts and stops, but this time when I was feeling really good, I decided to eat a small pizza and then immediately my symptoms started..I dont think that was a coincidence.
I believe most of my problems are because of the inflammation inside the blood vessels, so no neurologist or rheumatologist can help with this. Actually, no one can help. The only solution seems to have Plasmapheresis as suggested in Dr.beens videos, but I cant even make my doctors believe I have a real problem, convincing them that I need an expensive procedure like plasmapheresis seems impossible.
Could this be a histamine issues? Pfizer has brought on my histamine and MCAS issues. I never had them before, or if I did they were so mild they were having negligible effects on my life before. Now, they're RAGING!!
@mike411 I am going to do the Incell DX test and the celltrend.de tests. I have a question for you--will a lab do the celltrend test without a doctor's order? I'm a little confused about this. Also, about the INUSphereses, I was initially interested in this too, but then I read that the antibody removing filters process also involves replacing one's albumin with other "human" (!) albumin, which can cause some super strong reactions. Is there another way to remove the antibodies without adding foreign albumin?
In Us, the national labs like LabCorp and Quest will not draw blood for external labs but there are other options. The labs IncellDX use to run the tests, recommend AnyLabTestNow.com which has offices around the US. You can use them also to draw blood for CellTrend. That's what I did. Had both drawn at same time there. Other option is mobile phlebotomist. You just google for "mobile phlebotomist near me" and see who is around. They will come to your house to draw blood for you or sometimes they also have an office you can go to as well.
Whether Apheresis requires replacement plasma/proteins, depends on the type. Plasmapheresis replaces the separated and removed plasma with albumin or similar and there can be reactions in some cases. INUSpheresis does not do this as it is not removing plasma. Whether it removes antibodies depends on the filter screens being used. That said, there are some inherent risk with any Apheresis as they are removing your blood, filtering and reintroducing. There is a remote risk of infection for example from this process; but with a well recognized clinic, that is quite rare. Generally, it requires 2 treatments the first week and ideally repeat in a few months. But you get a good idea if its going to work within the first few weeks. If there is active stimulation to produce more antibodies, the immune system can just replace with more. That's always a risk with these procedures that that will occur.
It seems, if I understand it correctly, a lot of our (or rather my) symptoms are an over-reaction of the immune system, ie. an over-reaction to the spike protein. Has anyone taken a SHORT course of steroids, like prednisolone, to suppress our immune system?
That will not work to heal/cure. May help quite a bit as bandaid for symptoms. Problem is you can't easily stay on steroids forever. Better to treat the cause(s) as much as possible directly. It's also a mix: some people are suffering as a result of too weak an immune system initially; later though most end up with hyper-immune systems. And yet, many people out there keep taking things to "broadly" boost their immune systems with supplements. Quite interesting.
I'm 4.5 months into this and except for blood pressure and insomnia, I'm now 95% healed: extensive skin rashes gone, burning skin sensations gone, random body muscle twitches gone, upper left chest deep pressure and burning pain (likely pericarditis) gone, all different types of headaches gone, right ear twitching 90% gone (generally about 12 - 15 times a day now vs. almost constant before). For BP and insomnia, now well controlled on meds for both for now and just time now.
And this coming out of 5th vaccine in Jan. So it's definitely possible to heal. And I'd say in my case less about time and more about aggressive treatment starting within 8wks of this all starting.
What treatments did you take so far?
Part of Patterson protocols and older FLCC one:
* atorvastatin 20mg
* low dose aspirin
* Omega 3 3grams
* Vitamin C 500mg x2 (time release)
* multi vitamin
* Magnesium Glycinate 400mg nightly
* Melatonin 10mg nightly (time release)
* pre & probiotics (multiple strains, 300 billion+ CFUs daily)
Plus BP meds and other med/supplement for insomnia
Has anyone tried this for inflammation/calming down the cytokines?
It's my understanding that what we're dealing with is massive inflammation. Am I correct or not? Can someone pls help me understand.
@mike411 Thanks so much, Mike!! All this information was hugely helpful. After reading your reply I'm thinking more seriously now about INUSpheresis.
Hello everyone!
I’ve been taking a bit of a break from online forums etc as I felt like it was making my anxiety worse.
I wanted to post here and share how I’m doing now that I’ve passed the 3 month mark on my second Pfizer jab. I’ve been on colchicine for my pericarditis for the last almost three weeks and have noticed a considerable difference. Like many others, I too tried every new remedy I came across and never really saw much of a difference. I ended up stopping everything except for: Vit D, Magnesium, Vit B12, Fish Oil and Curcumin (I have to stop this also, as a type 2 diabetic it’s plummeting my blood sugar which I already have controlled with diet and exercise). These things have, I feel, helped with my previous side effects of: all over paraesthesia, brain fog, tremors, dizziness etc.
I did start getting new symptoms which align with POTS. They’re frustrating but nowhere near as debilitating as the previous ones. Heart rate is fine when sitting/laying and jumps by 30+ getting up and walking around. I have what feels like sunburn on my face but no temperature or real hotness. Body aches! My shoulders, back, legs, you name it they are all aching at different times. I was prescribed medicinal cannabis (flower) which has helped a lot with these symptoms. I was referred to an endo and neurologist, I’ve an appointment with the endo in April and I haven’t been able to get into the neuro yet.
I hope this somewhat positive post helps someone and that you are all taking care of yourselves!
Hi, how are you feeling? Any remaining symptoms? Any updates? What about the pericarditis, did go away? Thank you! Pray for you!
9.5 months on and still feeling hurrendous 😢 please if anyone knows how to help the dizziness please reach out to me, I feel constantly like I’ve just come off a really fast spinning fair ground ride! Yano that sicky dizzy feeling, it’s making me so depressed 😭 I have no relief, I just want to be a proper mum to my kids again and to be able to go out without feeling like I’m going to pass out! I can’t see any light at the end of this tunnel everytime I do my symptoms come back and remind me I’m still so unwell 😢 sorry for the rant I’m just so low at the moment x
@glennchan Thank you Glenn!! What a surprise to come across this. You put a lot of work into the long haul wiki pages and the directory of doctors. Very kind of you! Now I have three different doctors I can call tomorrow. I hope one works out! I've been having a very tough time since I got the vaccine in August '21. Time to go read the Newly Injured Guide. Thanks again.
9.5 months on and still feeling hurrendous 😢 please if anyone knows how to help the dizziness please reach out to me, I feel constantly like I’ve just come off a really fast spinning fair ground ride! Yano that sicky dizzy feeling, it’s making me so depressed 😭 I have no relief, I just want to be a proper mum to my kids again and to be able to go out without feeling like I’m going to pass out! I can’t see any light at the end of this tunnel everytime I do my symptoms come back and remind me I’m still so unwell 😢 sorry for the rant I’m just so low at the moment x
Hi
I haven't posted for a while. I'm almost 12 months post first Vax , and about 8 months post 2nd. I still have head pressure, chronic fatigue, dizziness , insomnia and this weird "weak" feeling when I breath out. I can do very mild exercise, but if I overdo it even a little I relapse hard. I also seem to relapse everytime I get an infection, like the cold. It's been tough. My immune system feels like it's drained, which makes my body feel so fatigued all the time.
Granted, I have made improvements, functionally atleast.
What's helped for me is pacing. You have young kids, so it's hard. I have young kids too.. they always bring the cold or sth into the home which makes it seem like I'm always relapsing lol