New Lyme Vaccine(s) - Please be careful.

Let me start off by saying that I don't like posting controversial topics and I truly hope that this won't start a heated debate. In fact let me explain what prompted this post:

I was browsing a forum 10 months ago, a different Lyme forum, and I read a woman's post asking for help for her boyfriend who was suffering pretty badly.

Her boyfriend had been in the recent 2018 - 2020 Valneva experimental trials for one of the upcoming Lyme vaccines. The way it sounded, her boyfriend was/is in terrible shape after the trial and now she was on a Lyme forum searching for answers.

Ever since I read it, I can't seem to forget about what she wrote. I made me feel really bad for her and her boyfriend.

I think I actually wanted to post it here sooner, but I wasn't sure what to do, with everything being so controversial around vaccines.

As far as I'm aware, Valneva hasn't withdrawn their vaccine. In fact, there is a news article from September 21 this year (2021), that says their Trial Phase II had successful results. Which seems odd to me.

Anyway, I feel like this lady and her boyfriend need to be heard at a minimum.

She was asking for information about an older, withdrawn vaccine (LYMErix) in the hope that it would shed some light on the new vaccine her boyfriend had taken.

So here are some of her posts.
I will provide a link her posts too below.

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Lyme Disease Vaccine Case Studies Phase 1 & Phase 2 - VALNEVA VACCINE (Maker Of LYMErix)
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Has anyone else participated in the phase 1 or phase 2 study?

My boyfriend (28) participated in the phase 2 clynical trial in America from 2018-2020.

He recieved 3 shots in total, with minor immediate symptoms that included soreness and swelling of the injection site.

The following year after the study ended he began experiencing symptoms of anxiety, depression and worsening back and joint pain.

Recently, his anxiety has become debilitating to the point of losing his job because he mentally could not bring himself to go into work. He has been nauseous every morning for the past 6 months and has excruciating knee pain that has almost caused him to collapse on a few occasions.

I have been trying to research the controversies surrounding the LYMErix vaccine, but cannot find any videos of news coverage or documentaries discussing patient experiences. Seems very odd how difficult it is to locate this information and it has me worried, as I believe this new vaccine is identical to LYMErix since it is OSP A and produced by the same company.

Any insight, advice or stories are greatly appreciated.
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Someone asked her what the doctor's in the trial said to her, this was her response:

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Nothing at all, it was a double blind study and ended last January.

They did say the phase two study report would be released late last year, but still nothing. News sources state results were possituve, but no report to back it up besides the phase 1 trial results.

Thanks for the link.
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She also posted an update 5 months later:

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I am so greatful my original post made an impact and brought awareness to others in the lyme community.

Initially I was hesitante to post on this sub, as I was just going off of my gut feeling and minimal research.

I didn't know how my post would be recieved or if I would come across as insensitive.

Since I live on the east coast, I know many people who suffer from this disease and I am well aware of how dibilitating the symptoms can be.

I would also like to acknowledge, I can not personally empathize with sufferers as I believe the pain is undidcribable.

I know many people, including one of my professors, who are greatful this new vaccine is being created. Most of those I had conversations with (or all) thought this was the first time a lyme vaccine was being created - My bf thought so too.

I was very surprised to learn this was the second attempt and became extremely worried when I realized it was almost impossible to find information regarding the origional vaccine online.

Having been with my boyfriend for 8 years, I had a feeling something was very wrong, when his knees almost gave out in the grocery store. He has had issues with his shoulders and back, since he performed in many extreme sports competions as a teenager. But he has never experienced pain in either of his knees, nevermind both at the same time.

That symptom accompanied with behavioral changes, brought me here in search for other study participants or those who had knowledge of the original vaccine.

Since I couldn't find anything - I felt obligated to start the conversation and was very surprised at the responses I recieved.

Most were aware of the first vaccine and were not in favor of the new one being created. Which I did not expect.

Since that incident that sparked concern, my bf's knees have gotten better but still ache everyday. He occasionally experiences anxiety, but not as often since switching jobs. However, his mood has been unstable - constantly changing.

Since he agreed to participate in the study and was paid he is not owed anything. Trying to battle big pharma would be a lost cause.

However, I found it very interesting that many other people in the study experienced arthritis. I also wonder how many more participates experienced symptoms after the study ended - Whom would be unaccounted for since there is no evidence to prove other factors were not involved.

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So those were 2 of her posts.
She left more comments and I will provide links bellow.

In short, I just want to thank this lady and her boyfriend and I truly hope that, whatever decision people make when it comes to vaccines, that they at least had the chance to read this first.

Thank you.

Oh and here are the links (I used an archive just in case they ever get lost)

https://archive.md/yr47b

https://archive.md/656hv

the only thing that strikes me - apart from the fact that it is of course another tragic story of someone struck down in their prime - like many of us is:

what is to say that this person would not have worsening condition over the years after the trial anyway - we read about people sadly deteriorating on this board often enough - so the fact that they took this vaccine and later their health became worse not better may be entirely unconnected. i haven't read all the links - but its not clear to me why they they are so sure its connected to the vaccine.

the other thing that occurred to me is the list of symptoms given - personality changes, unstable mood, anxiety, collapsing in public ( breakaway failure ), back pain/arthritis, pain in both knees at the same time (rather than one or other as is more typical for Lyme) - are pretty textbook Bart - so perhaps the patient had bart all along and it progressed a year after the trial

i think testing for bart at somewhere like galaxy would be a sensible option if they can afford it.

I didn't realize those trials were happening! Interesting.

I don't mean to derail this post, but I read about a new Lyme vaccine recently that has a unique mechanism of action. Because of the oft-repeated myth that it takes a tick 36 hours of attachment to transmit Lyme disease, and the fact that tick saliva numbs the creatures from which they feed, this vaccine would make people's skin react to the tick saliva, notifying the person that a tick has bitten them in fewer hours, and allowing them to remove the tick before it has time to transmit disease. Now, we all have heard the case reports and studies of Lyme and co-infections being transmitted in much less time, but I guess I do see the value in a reduction of the time attached, even if it's not entirely protective. The benefit of this type of vaccine versus one that just targets Lyme spirochetes would be some protection against any tick-borne disease.

https://www.smithsonianmag.com/smart-news/first-ever-mrna-vaccine-for-lyme-disease-shows-promise-in-guinea-pigs-180979090/?utm_source=facebook&utm_medium=news_tab

This study about it is interesting, too, claiming that repeated tick bites lead to "tick immunity." I have never heard of this. Anyone have thoughts on this?
https://www.science.org/doi/10.1126/scitranslmed.abj9827?adobe_mc=MCMID%3D23093234137653293603044630514166490186%7CMCORGID%3D242B6472541199F70A4C98A6%2540AdobeOrg%7CTS%3D1636991521&_ga=2.175338082.1753287829.1636986216-258772416.1572545294

Skinny_joe, I agree that it's odd that pharmaceutical companies are working on ways to address a disease that mainstream medicine believes to be so easily curable. And that they are trying so many different mechanisms of action.

skinny_joe said...
I always find it amazing that companies are trying to find a lyme vaccine for a illness that can be "cured" with two weeks of antibiotics. Makes you wonder. I hope the people in the trial are able to get some releif.

Because we have doctors who don’t recognize, test and treat for Lyme disease early on - resulting in chronic Lyme that doesn’t respond to just 2 weeks of doxy.

If a vaccine would save people from getting sick - it would be useful.