Another relevant interview by Dr. Been:
https://www.youtube.com/watch?v=wXsoI3jTSmg
At minute 37.10, Michelle summarizes the treatments she has tried for her vaccine injury, what has been useful and what hasn't.
Hi everyone. I have been away from this form for a couple of months. I was in much need of a mental break to focus on healing and wellness. Unfortunately, I am still experiencing all my symptoms on a daily basis. I continue going to my vestibular physical therapy every two weeks. I still suffer from head fullness, dizziness, ear ringing, and feeling of off-balance on a daily basis. Been working on increasing the duration of my daily walks and going to places like Trader Joes and Target for about 10-15 minutes once a week to expose myself to the busy enviroment. Being in the car is still hard for me. Functional daily tasks are very difficult for me and flare all my symptoms. I have been working hard on controlling my reaction to dizziness but I have to say when I feel very dizzy and ill it's still hard for me not to panic and think about the worse scenario. Does anyone else feel this way? My doctors still don't correlate my symptoms to the vaccine they say it's PPPD, anxiety, and maybe vestibular migraines. Now for the some wins.... I can do a little cooking, I'm no longer in bed for weeks, I go for short walks at the park (about 10-15min), my daily walks are longer, and I'm able to use grounding and breathing techniques to help me in my bad dizzy times. How is everyone doing? Anyone else with a PPPD diagnosis?
How long has it been for you post-jab?
I have all these symptoms. I've stopped asking Drs. They're of no help!
Since last July 2021 so about 10 months 😕 How about your?
Hi everyone. I have been away from this form for a couple of months. I was in much need of a mental break to focus on healing and wellness. Unfortunately, I am still experiencing all my symptoms on a daily basis. I continue going to my vestibular physical therapy every two weeks. I still suffer from head fullness, dizziness, ear ringing, and feeling of off-balance on a daily basis. Been working on increasing the duration of my daily walks and going to places like Trader Joes and Target for about 10-15 minutes once a week to expose myself to the busy enviroment. Being in the car is still hard for me. Functional daily tasks are very difficult for me and flare all my symptoms. I have been working hard on controlling my reaction to dizziness but I have to say when I feel very dizzy and ill it's still hard for me not to panic and think about the worse scenario. Does anyone else feel this way? My doctors still don't correlate my symptoms to the vaccine they say it's PPPD, anxiety, and maybe vestibular migraines. Now for the some wins.... I can do a little cooking, I'm no longer in bed for weeks, I go for short walks at the park (about 10-15min), my daily walks are longer, and I'm able to use grounding and breathing techniques to help me in my bad dizzy times. How is everyone doing? Anyone else with a PPPD diagnosis?
How long has it been for you post-jab?
I have all these symptoms. I've stopped asking Drs. They're of no help!
Since last July 2021 so about 10 months 😕 How about your?
Hi everyone. I have been away from this form for a couple of months. I was in much need of a mental break to focus on healing and wellness. Unfortunately, I am still experiencing all my symptoms on a daily basis. I continue going to my vestibular physical therapy every two weeks. I still suffer from head fullness, dizziness, ear ringing, and feeling of off-balance on a daily basis. Been working on increasing the duration of my daily walks and going to places like Trader Joes and Target for about 10-15 minutes once a week to expose myself to the busy enviroment. Being in the car is still hard for me. Functional daily tasks are very difficult for me and flare all my symptoms. I have been working hard on controlling my reaction to dizziness but I have to say when I feel very dizzy and ill it's still hard for me not to panic and think about the worse scenario. Does anyone else feel this way? My doctors still don't correlate my symptoms to the vaccine they say it's PPPD, anxiety, and maybe vestibular migraines. Now for the some wins.... I can do a little cooking, I'm no longer in bed for weeks, I go for short walks at the park (about 10-15min), my daily walks are longer, and I'm able to use grounding and breathing techniques to help me in my bad dizzy times. How is everyone doing? Anyone else with a PPPD diagnosis?
How long has it been for you post-jab?
I have all these symptoms. I've stopped asking Drs. They're of no help!
Since last July 2021 so about 10 months 😕 How about your?
Since Dec 2021 (my Pfizer jabs were in Oct & Nov 2021). I am at least partially relieved and happy for you that your symptoms are letting up. My specialists don't ever dare give me a diagnosis. I know exactly what caused my problems!
New pre-print article worth a look. Tagged from Avindra Nath. If you don't know who he is, he is at US NIH and has been investigating post vax for some time. So this would be a publication US doctors would be more inclined to accept as true.
Seems the data supports. Interesting the super heavy skew to females, which I've heard elsewhere as well: this is vastly more a female vs. Male issue both in likelihood to contract and in severity. Also interesting on early treatment with steroids and longer term IVIG results.....
https://www.medrxiv.org/content/10.1101/2022.05.16.22274439v1
Thank you for posting this. It is a start. At least they stated that: "Since all SARS-CoV-2 vaccines encode the spike protein, anti-spike protein immune responses may link post-COVID and post-vaccine syndromes."
You may have seen Dr. Been's recent interview about the NIH/NINDS study.
"First Ever NIH/NINDS Study on Vaccine-Caused Neurological Injuries (Preprint)."
https://www.youtube.com/watch?v=9XGpe6MTaFg
It covers some of the possible treatments for neurological and other vaccine injuries and explains why treatments such as steroids and IVIg may only have a temporary effect. (Steroids such as prednisone may be most useful if given within a week or two after the initial vaccine injury.) Benefits of an anti-inflammatory diet are also discussed.
If anti-spike antibodies and especially autoantibodies are a major factor behind symptoms, Dr. Been suggests that it would be optimal to figure out a way to get rid of the B cells producing the antibodies as well as the B cells producing the autoantibodies, as opposed to just getting rid of the antibodies and autoantibodies themselves.
Dr. Been said he plans to interview Dr. William Murphy, who has studied autoantibodies after covid vaccination, on Monday.
Here is one of Dr. Murphy's articles:
https://www.nejm.org/doi/full/10.1056/NEJMcibr2113694
And responses to his paper:
I read some of the comments to the video with Dr. Mobeen and Brianne and I searched what some people recommended and they are sure helpful:
Supplements For Resolving Neuro-inflammation
Another relevant interview by Dr. Been:
https://www.youtube.com/watch?v=wXsoI3jTSmg
At minute 37.10, Michelle summarizes the treatments she has tried for her vaccine injury, what has been useful and what hasn't.
I noticed statin and maravoric are core treatments in her progress. I wish doctors at least were out there pushing post vax patients into trialing statins for a few months as soon as the patient comes in mentioning symptoms. Would likely make a huge change in outcomes getting everyone that can tolerate them, on them as soon as possible after things Start. Then spend more time testing and considering adding maravoric for some.
My POV is atorvastatin + low dose aspirin is core treatment for most. Then add on top other med, supplements, diet, exercise modification, and treatments like HBOT.
Another relevant interview by Dr. Been:
https://www.youtube.com/watch?v=wXsoI3jTSmg
At minute 37.10, Michelle summarizes the treatments she has tried for her vaccine injury, what has been useful and what hasn't.
I noticed statin and maravoric are core treatments in her progress. I wish doctors at least were out there pushing post vax patients into trialing statins for a few months as soon as the patient comes in mentioning symptoms. Would likely make a huge change in outcomes getting everyone that can tolerate them, on them as soon as possible after things Start. Then spend more time testing and considering adding maravoric for some.
My POV is atorvastatin + low dose aspirin is core treatment for most. Then add on top other med, supplements, diet, exercise modification, and treatments like HBOT.
Yes, can understand that point of view. It may take published results of studies of people with long-term vaccine reactions for some doctors to agree to prescribe statins for that purpose.
Am trying to keep an open mind to the multiple current theories behind vaccine reactions. In the case of higher blood pressure after vaccine or covid infection, wonder if a pathway like this might be involved:
- Spike protein itself or anti-ACE2 antibodies bind to ACE2 and decrease ACE2 activity.
- As ACE2 generally converts Angiotensin II to Angiotensin (1-7), decreased ACE2 activity could lead to an increase in Angiotensin II.
- Higher Angiotensin II could increase inflammation and cause vasoconstriction and higher blood pressure.
@mike411 what are you doing for insomnia?
10mg time release melatonin, 500mg Gaba, 200mg L-Theanine, 400mg Magnesium Glycinate, and Ambien CR (extended release) 12.5mg.
I fall asleep now within 10 minutes, wake up usually once a night around 3am and then sleep again until 6 or 7am. In total, I'm getting a decent 6.5 to 7hr sleep every night.
I wear my apple watch and use the Pillow app on my iPhone and it's showing I'm getting between 82% to 90% quality sleep now. A couple months ago it was at best in the low 70s.
@mike411 what are you doing for insomnia?
10mg time release melatonin, 500mg Gaba, 200mg L-Theanine, 400mg Magnesium Glycinate, and Ambien CR (extended release) 12.5mg.
I fall asleep now within 10 minutes, wake up usually once a night around 3am and then sleep again until 6 or 7am. In total, I'm getting a decent 6.5 to 7hr sleep every night.
I wear my apple watch and use the Pillow app on my iPhone and it's showing I'm getting between 82% to 90% quality sleep now. A couple months ago it was at best in the low 70s.
I just got 200mg of magnesium glycinate. And I have 10 mg of time release melatonin ..don't have the others think these 2 combinations will work or should I take 2 magnesium?
if you haven't taken magnesium belore, 200mg is ok to start with to make sure it agrees with you. Most do quite fine on it. Generally, you'd want to try to go up to 400mg for better sleep effect. I take it 2hrs before bed and melatonin about 30 to 45min before bed. If those are not working enough, then I'd suggest try adding Valerian root for a week and see how that works. I love it but it conflicts with the ambien so I don't take it nowadays. It usually takes about a week to know if it's going to start working well for you or not. Valerian Root is similar pharmokenetics to a very mild Benzo, without the dramatic side effects/addiction
Hello everyone,
I also want to give you all some much needed hope in your recovery.
i had 2 Pfizer shots and was fine, after the 2nd one I had tingling in my fingers for a week and then it went. So, in December when the Uk government was pushing everyone to get their booster jab for Xmas I went along feeling pressure that 2 vaccines wasn’t enough to protect us from omicron (eye roll)
I had the booster on 22nd December and was fine. Then on 10th Jan just over 2 weeks after the booster I started with burning nerve pain and tingling pins and needles. I can tell you that after 8-12 weeks the burning nerve pain went away and it hasn’t come back thank god. It’s now been just over 4 months for me and the main issue is my groin in my right leg, I get an ache there like I’ve been walking all day. The pins and needles pain in the right leg goes away for weeks at a time but just the week it’s come back again and my right leg and foot is tingly and pins and needles. However, I have read from other peoples recovery timelines that you can feel better like your symptoms are going away and then it comes back for a week and then goes again for a month or two - apparently there is no linear timeline in recovery. Many people are getting better then have a random bad few days again then it goes again, it’s all part of recovery but try not to get disheartened by set backs. I do believe we will all completely recover in time, I read it takes 15 months for the cells the back damaged to die off so I just have to say to myself it’s only been 4 months and already my burning nerve pain is completely gone so I’m already half way to full recovery. The burning nerve pain was by far the worst symptom so I am glad that has been the first to go away! Don’t lose hope guys, I am proof that these side effects will go away and you do get better it just takes time 🙂
Another relevant interview by Dr. Been:
https://www.youtube.com/watch?v=wXsoI3jTSmg
At minute 37.10, Michelle summarizes the treatments she has tried for her vaccine injury, what has been useful and what hasn't.
I noticed statin and maravoric are core treatments in her progress. I wish doctors at least were out there pushing post vax patients into trialing statins for a few months as soon as the patient comes in mentioning symptoms. Would likely make a huge change in outcomes getting everyone that can tolerate them, on them as soon as possible after things Start. Then spend more time testing and considering adding maravoric for some.
My POV is atorvastatin + low dose aspirin is core treatment for most. Then add on top other med, supplements, diet, exercise modification, and treatments like HBOT.
Yes, can understand that point of view. It may take published results of studies of people with long-term vaccine reactions for some doctors to agree to prescribe statins for that purpose.
Am trying to keep an open mind to the multiple current theories behind vaccine reactions. In the case of higher blood pressure after vaccine or covid infection, wonder if a pathway like this might be involved:
- Spike protein itself or anti-ACE2 antibodies bind to ACE2 and decrease ACE2 activity.
- As ACE2 generally converts Angiotensin II to Angiotensin (1-7), decreased ACE2 activity could lead to an increase in Angiotensin II.
- Higher Angiotensin II could increase inflammation and cause vasoconstriction and higher blood pressure.
I'm betting VERY heavily, the total picture has a cause/effect flow along these lines:
1. Spike protein (and viral remnants in case of post covid). in post vax, new spike can continue to be produced for up to 4 months post.
2. improper immune response leaves spike/viral fragments unable to be cleared (e.g. nonclassical monocytes --> senescence)
3. Cytokines elevation = inflammation, micro clotting, lower tissue oxygenation
4. *reactivation of and interaction with prior viral/bacterial infections (EBV, CMV, ME/CFS, Lyme, HPV) (*only in subset of those with these factors)
5. *Autoimmune response (auto antibodies) to body's inability to clear foreign agents and confusion with self (*doesn't occur in every case)
So unless one clears the upstream cause with treatments and/or time, the downstream targets will remain frustrating to target.
I'm skeptical of spike having any direct effect beyond the first few months when it is still being produced (up to ~4 months post vax). As spike is produced, there is a very short window where it either docks with receptors (ACE2) or is directly engulfed by monocytes. Why all these things like the "spike protein detox guide" are not effective.
The RAAS impact is probably one of the most variable factors across different people based on their genetics. Many have good fortune controlling BP with ACE or ARB blockers. A significant group appears unaffected by those and need different meds like calcium channel blockers, clonidine, etc for effect. The teaching/research hospital I go to now, had me meet with one of the immunology researchers and there feeling, which I agree, is that maybe half the BP cases are RAAS interruption due to receptor malfunction (down regulation, auto antibodies, etc) and remaining are due to autonomic nervous system control in brain (even in those without POTS otherwise).
I have high auto antibodies to ACE2 and MAS-1 which correlate with RAAS system but it's not as easy to say those are the specific cause as alot of people are showing up with much higher antibodies to those than myself, without any BP issues. So the immunologists believe there are adjacent G-protein coupled receptor auto antibodies that are not being tested for that are causing BP issues in many such as myself. Since those cannot be identified or tested for, we can only use my symptoms and monitoring of the ACE2 antibody levels as a proxy for status and recovery.
@asanders Are you better?! I really hope so. What about the joints inflammation, are the popping and clicking sounds still there? Any improvements? Thanks!
Actually I was a lot better for a few weeks, but then I thought I am getting better so I guess I can eat a pizzaa...then boom everything came back but still not as severe as before. so I guess I am still in the recovery mode...or is this just a remission I dont know. Now I am back to veggies and intermittent fasting...usually I eat every other day.
Popping and clicking sounds are gone now but there are still a lot of problems with my knees and feet and shoulders. I think now I have some irreversible/permenant problems
but having less burning pain is a lot of improvement for me. I was practically living with thermo ice packs to soothe the burning.
Tinnitus seems to be gone....thats good too. My tinnutus was not as bad as others but still it was very annoying.
I still have bloody metallic taste in my mouth..this taste comes with other symtomps and goes with other symtomps.
Internal tremor, Sudden muscle movements, jerks, twitches still come and go.. but less severe now.
I really do have a big problem with my arms...Even lifting groceries/very light exercise cause my arms to twitch and shake.... And using my arms to lift stuff triggers other symptoms all over my body.
Still using:
atorvastatin / aspirin / Fluvoxamine / quercetin-zinc / liposomal c / High dose dust form C / AlphaLipoicAcid /
omega 3 / coconut oil / curcumin extrat / nigella sativa / silymarin / selenium /
D3K2 / Ata-Mg, magnesium malate , magnesium bisglycinate, elemental magnesium /
H1-H2 antihistamines / monteloucast / ibuprofen / Coenzym q10 / Resveratrol / Boswellia
and Prednisolone
New FLCCC Post Vax Treatment Protocol was released this past Wednesday (May 25th) -
Includes more background on dymanics of the contributing factors and their perspective on how best to treat. A few changes in meds and priorities vs their last list and now includes more lifestyle actions, including diet/fasting, meditation, etc. as well as some more symptom related treatments, which are pretty much copy of what already exists.
In general, while I believe they have some useful treatment recommendations, I do not find their approach as strong and focused as Patterson's, which I greatly prefer.
Some things like adding fasting make sense, although I really don't think daily is that compelling. Most of research I've seen and my Rheumatologist and Immunologist back, is that the best target is a 3 day to 5 day fast approx every 6 to 8 weeks with well focused diet in between.
Not so sure LDN belongs on the top tier recommendations for general post vax. Very hit or miss and for most it's more of a bandaid at best, and symptoms resume as soon as they stop. I'd see that as more of a targeted treatment for certain potential symptom relief.
They don't have Statins on this list, which is their biggest miss and they continue to elevate IVM treatment as tier one, when it really should be more tier 2. and including Hydroxy as Second Tier treatment is a bit much. That should be a lower tier/adjunct treatment for those that have exhausted other treatments AND have a good indication that it really is autoimmune before trying an immune modulator like that.
I would be VERY cautious with their probiotics recos. Those are spore (soil) based probiotics and not your typical strains. Many people have strong body wide reaction (sore joints, vomiting) to those. Just take a look at low reviews on Amazon and other places.
They moved steroids down to second tier reco vs. top tier on their last list. I'd probably move that down to an even lower tier. Probably gives some a false sense of hope since steroids just dampen down the symptoms while on them and symptoms come right back shortly after stopping.