Neuropathic symptoms with SARS-CoV-2 vaccination

I was one of the first participants in NIH’s covid vaccine “study”. While I’ve been waiting, like others, to see a published article, as Nath promised, this report is a set-back. I don’t take lightly that Nath’s team repeatedly told us and (participant’s) community providers that corticosteroids need to be taken well beyond 2 weeks. I lost count of how many times I heard the message – too short of a course of steroids, not high enough dose, etc. would not be effective. And I can say specifically that they knew I was on a short course (by their standards), and it didn’t fix a majority of my issues. AND THEY KNEW IT. To misreport the observations and findings of a NIH study, as Nath and Savangi have done in this article – is research misconduct. They should be held accountable. Perhaps starting with a letter to the journal editor from those of us who had different experiences and knowledge that conflicts with what’s reported in the article. Really, to publish an article that doesn’t accurately present the facts will delay further research on vaccine side effects, and blunt the understanding of the mechanisms and ultimately, learning what treatments are effective.

4 Likes

Do it!

It so clear to us that so many individuals and organisations at every step of this disaster have been misrepresenting, obfuscating and outright lying. They all need to be held to account.

1 Like

Hmm I know that Bree sent a letter/comment to the NEJM about the AstraZeneca clinical trial and they rejected her comment. When she mentioned the editor of the journal on a VBRPAC call, that editor got pissed.

So if they publish in one of the captured journals, then a letter to the journal may not go anywhere. As I’ve suggested elsewhere, a video would be good. (Voices can be altered if people want to protect their privacy.)

Also I feel like most of the blame should lie on Nath’s bosses. Nath was actually trying to help in the beginning. He’d be doing research now (with NIH’s super fancy and super expensive toys like their 11 Tesla MRI machine) if his bosses didn’t make him cover up vaccine injury.

1 Like

See if any of the authors have posted anything on ResearchGate and comment directly there. Then their whole network will know about it.

1 Like
i contacted my Gp after I had to have paramedics come in April 2021 as I woke up not able to move my legs, i have Fibromyalgia/ME and osteoporosis of my spine because of all this and my reactions started nine weeks after first vaccine in February 2021 .
Gp put the extreme back pain, the muscle spasm's/ numbness of my toes, numbness of my thigh/ tingling in my hand. down to fibromyalgia but I kept saying it wasn’t he didn’t listen and by December the pain was if the scale but I was told we think it’s a fibromyalgia flare it will go eventually but this was totally different to anything I have had before, no one listened and now one cared I pushed for an MRI it showed corner odema and inflammation and I had a fall feb this year it showed fractures and cracks they didn’t understand where the odema and inflammation coming from so, i just had my second MRI and no one knows still why i have severe back pain, i cant walk hardly and when i do i am like a crab side ways i cant walk properly even with a stick now, i have one shoulder lower than the other, they dont know why i have inflammation and odema all over, i am in 24/7 pain and know one knows why this is happening.

Before  i had these vaccines i was mobile independent but my husband had to give up work to be my full time carer,i can no longer drive, or even make myself a cup of tea, my right hand is useless.

my elbow is swollen its red and scaly gp doesnt know why as it came on a few weeks ago so i have steroid cream its not helping.

my weight has gone up and its not from eating as my weight and height were ok before.

i dont smoke or drink alcohol i never have.

i am waiting for my results of my second MRI as my first one showed the inflammation.
The physio think something has inflamed my nerves and asked me if I took drugs!!!! I am 62 and the only drugs I am taking is painkillers which I started when this happened and wasn’t on any medication before and I certainly don’t take those types of drugs.
1 Like

If you don’t put the three periods before and after, then this forum won’t think that you’re writing computer code that should be formatted a certain way. Here’s what you posted:

i contacted my Gp after I had to have paramedics come in April 2021 as I woke up not able to move my legs, i have Fibromyalgia/ME and osteoporosis of my spine because of all this and my reactions started nine weeks after first vaccine in February 2021 .
Gp put the extreme back pain, the muscle spasm’s/ numbness of my toes, numbness of my thigh/ tingling in my hand. down to fibromyalgia but I kept saying it wasn’t he didn’t listen and by December the pain was if the scale but I was told we think it’s a fibromyalgia flare it will go eventually but this was totally different to anything I have had before, no one listened and now one cared I pushed for an MRI it showed corner odema and inflammation and I had a fall feb this year it showed fractures and cracks they didn’t understand where the odema and inflammation coming from so, i just had my second MRI and no one knows still why i have severe back pain, i cant walk hardly and when i do i am like a crab side ways i cant walk properly even with a stick now, i have one shoulder lower than the other, they dont know why i have inflammation and odema all over, i am in 24/7 pain and know one knows why this is happening.

Before i had these vaccines i was mobile independent but my husband had to give up work to be my full time carer,i can no longer drive, or even make myself a cup of tea, my right hand is useless.

my elbow is swollen its red and scaly gp doesnt know why as it came on a few weeks ago so i have steroid cream its not helping.

my weight has gone up and its not from eating as my weight and height were ok before.

i dont smoke or drink alcohol i never have.

i am waiting for my results of my second MRI as my first one showed the inflammation.
The physio think something has inflamed my nerves and asked me if I took drugs!!! I am 62 and the only drugs I am taking is painkillers which I started when this happened and wasn’t on any medication before and I certainly don’t take those types of drugs.

Sorry you’re going through all of that. I might stay away from certain content like this because you’ll go through an angry phase that’s not the most productive.

See this guide if you haven’t already: Newly injured guide - Long Haul Wiki

I personally think that persistent infections are causing the health problems. For some reason, the vaccine affects the body’s ability to hold persistent infections down. Here’s my wiki page on it. As far as treatment goes, I outline some things that people should try first here: Hot takes on what to try for vaccine injury (Mar 2022 edition)

I hope that helps.

1 Like

Thanks for your comments. Couple of thoughts… I wouldn’t want to judge the reaction of all other journal editors based on one :). Let each study participant’s conscience guide them if they think the paper represents their experience.

I wasn’t a fly on the wall during Nath and NIH’s leadership communications. But will disclose many of my perspectives are shaped by my 4+ decades research career involving NIH, including my postdoc training. I retired from NIH not long ago.

Long covid research is a low hanging fruit for researchers yet brings pressure. NIH has received heat about its failure to recruit study participants after Congress allocated $1.2B to them a long while back. With the low recruitment numbers I saw, Nath likely was behind in recruiting for his long covid studies. They’re short staffed and covid activities have typically been done in addition to staff’s other commitments. Nath pivoting his attention to long covid isn’t shocking. The more problematic piece is that the vaccine results that he and Savanagi spearheaded appear to have been twisted. I’ve worked with his NIH “bosses” on research activities and based on those experiences – at this writing I do not believe they’d condone changing research findings. I just don’t. However, I did witness disturbing things about how Nath and his team ran his research pertaining to the vaccines. I may bring up more in time. I’ve never discussed them outside of NIH.

I’m still thinking this through as the paper needs damage control. It’ll be challenging to garner more research interest (i.e. funding – the cornerstone of research) with the findings Savanagi and Nath presented.

The video has some possibilities depending on reaching the target audience(s).

One of NIH’s robust machines was used for my brain MRIs. Nath placed me on the covid protocol to study my brain. I had many cranial symptoms from V, but never had Covid. Even with NIH’s super machines, whatever is going on at the cellular level wasn’t detected via MRI’s – even NIH’s. However, NIH’s super machine did give me new tinnitus and I lost hearing thereafter.

2 Likes

That is so weird. Did you get contrast dye? (Gadolinium?) Some people seem to report negative reactions to MRI without contrast dye… it seems strange that MRI can cause issues. (The dye is known to cause rare problems… they have support groups just like this one.)

I’ve heard other stories of tinnitus getting worse after some people’s MRI.

1 Like

NIH has ~8 MRI machines, so I cannot speak for all of them. But the one I was in was louder and felt more powerful than any others (I’ve been in several). And the research sequence is longer than the brain imaging in a community facility. Plus, the technician wouldn’t let me wear silicone ear plugs – which are my “go-to” plugs (E.g Mack brand you can buy at almost any pharmacy). Technician said the machine would melt them. So louder and more robust machine, less ear protection than I’m accustomed to, and longer sequence. The only thing I knew ahead is that I’d be in the machine longer – twice as long as in a typical MRI. Yep, had gadolinium. I’d had a brain MRI 10 days earlier (community facility) and no findings. Repeated at NIH only for the research and they promised me treatment.

1 Like

Oh by the way there should be a React19 MRI study coming out soon in a few months… if you happen to have a copy of your MRI, that might be interesting because it may have been done on some super fancy 11T machine or something. The study will probably run the MRI through a lesion analysis algo to see if there are correlations between symptoms and MRI abnormalities. (Though I presume that the NIH took a good look at your MRI because they’re doing research-level stuff there.)

1 Like

Interesting. Thanks for the heads up. I have a “typical” brain MRI, then the one that NIH did soon after the first. So same structure, but different machine with more detailed sequences and a more detailed review. Now that I know more about cranial injuries – a MRI likely wasn’t going to show much. But good you’re doing the study as those of us injured have had all sorts of symptoms, and many films may not have been closely reviewed.

1 Like

What corticosteroid did you take and did it help any of the symptoms, I was prescribed them but wasn’t sure if they were right?

1 Like

Thanks for your input. And I agree!!

Here’s the thing: If Savanagi and Nath make these claims in print (meaning in public), they’re most certainly minimizing our injuries in conversations with leadership of key agencies, organizations, etc. So damaging.

Those who were in the study, or who contacted Savanagi / Nath and requested help or to be in the study – yet were rejected, can each write and contact the editor to express their experiences and concerns.

Brianne Dressen is rounding up the patients in the Nath paper. I don’t remember asking you this but… were you one of the people in Nath’s paper? If so, please shoot me a private message and I’ll give you Bree’s contact information. She’d like to round everybody up so that we can clear up what actually happened.

1 Like

Hey Glenn, no I was never part of that study.

I was having issues with my sense of balance being bad and I had difficulty walking. I went to a Neurologist who is the first Dr to tell me that he had many patients who were having problems after getting their covid vaccines. He ordered a Tilt Table Test (to test for dizziness) and a Brain MRI (no contrast). The Tilt Table Test was negative. But the MRI showed a white area on my brain that he said indicated that I had Small Vessel Disease. He said it is caused by a mini-stroke, or more likely in my case, high blood pressure. He said the effect it has is to make someone’s balance/walking be bad. He had no treatment to offer, but is having me take Baby Aspirin (81mg daily) to keep it from getting worse.
I have to mention that before my covid vaccines (1st and 2nd only Moderna) I had excellent blood pressure but now I have to be on medication to control it.

A friend had sent me an article that was in a manor medical publication that mentioned that 1% of Moderna recipients had a changed gait. I wanted to read that article again so I did a search on the internet and accidentally stumbled into a CDC Database on Adverse Reactions to all 3 of the vaccines given in the USA: Pfizer, Moderna, and J & J. They are all listed by Reaction, Gender and Age. You can find the home page for this that the CDC doesn’t seem to mention at:

I went through the database and found my own report that I had made to them.

There are literally10s of thousands of adverse reactions reported there. I highly recommend making a visit to it. Unfortunately, it only goes through Aug 11, 2021. I’m sure there’s lots more since then.

Oh it looks like that website repackages the data from VAERS. OpenVaers.com is a different website that would allow you to view your VAERS report. There’s a public version which you can see and a private version which will contain information not in the public version.

Some of the VAERS data is a little misleading because it includes a lot of adverse events not caused by the vaccine. For example, suppose that somebody was selling a bulletproof vest. The CDC wants to know if the bulletproof vest works or releases dangerous fumes or something like that. If people get shot with bullets and some of them die, most of those deaths probably aren’t caused by the bulletproof vest. Most of the records are of bullets killing people. The other vaccines don’t have that going on because measles, polio, etc. aren’t a pandemic.

VAERS has a huge under-reporting problem though.

Thank you for sharing your knowledge and that other VAERS database with me Glenn. I was totally unaware of it. I took a very quick peek at it and intend to go into it more deeply. At least the database you referred me to is “current” (?) and goes through July of this year while the one I mentioned was only through Aug of last year.
Thank you so much!

1 Like