Different recovery stories

[nerd]

For 2.5 months I forgot I was ever sick, never felt better, but in June it all came back and is way way way worse than ever. I'm in bed a lot now and I have scary symptoms like crazy muscle weakness and pain.

I'm sorry to read that it got worse again. I think Prof. Scheibenbogen intended to look into the vaccines and why they temporarily help, but I don't think she was aware of the possibility that it can get even worse than before.

 

[georgina699]

I'm sorry to read that it got worse again. I think Prof. Scheibenbogen intended to look into the vaccines and why they temporarily help, but I don't think she was aware of the possibility that it can get even worse than before. Some groups like the FLCCC also wrote guidelines for the post-vaccine syndrome.

It's already known fact why VACCINES help and hurt (it should make you wonder about your professor's competence).
They help because they overstimulate your immune system when it's introduced into your body.
They hurt because spike protein (from vaccine) has an ability to cross the blood-brain barrier, reactivating dormant infections/triggering autoimmune diseases/affecting nervous system.

 

[nerd]

It's already known fact why VACCINES help and hurt (it should make you wonder about your professor's competence).
They help because they overstimulate your immune system when it's introduced into your body.
They hurt because spike protein (from vaccine) has an ability to cross the blood-brain barrier, reactivating dormant infections/triggering autoimmune diseases/affecting nervous system.

This mostly matches my own understanding but I wasn't aware that this is already established as a fact. If it's so simple, they could try to use only the adjuvant without the vaccine. Because this is the ingredient that actually triggers immune response and some vaccine adjuvants can even regulate immunity, increase CD8+ activity and such.

I might try and get the Novavax in the coming months. It also contains a novel plant-based adjuvant and the spikes might not spread from the tissue as easily because it doesn't replicate from cells. I hope it'll remain in the muscle where it belongs.

I've also made a moderate experience with the flu vaccine. It got better for a month or so, not completely, but I can't tell if it got worse later just as it always gets worse or if the vaccine also played a role. Nothing obvious.

Maybe it's also reactive autoimmunity that plays a role. First, the immune system is triggered. Once it's done with the vaccine or pathogen, it's still activated and looks for a new target. In this case, the adjuvant itself wouldn't be much better.

 

[georgina699]

This mostly matches my own understanding but I wasn't aware that this is already established as a fact. If it's so simple, they could try to use only the adjuvant without the vaccine. Because this is the ingredient that actually triggers immune response and some vaccine adjuvants can even regulate immunity, increase CD8+ activity and such.

regulate immunity for how long?

I think I made a mistake, when I felt better after vaccination I partied and drank alcohol every damn day making it easier for spike protein to travel wherever it wanted.

 

[georgina699]

I was reading fb posts of covid long haulers. some of them recovered after vaccination and it never came back again while others recovered only temporarily.

 

[hapl808]

It's already known fact why VACCINES help and hurt (it should make you wonder about your professor's competence).
They help because they overstimulate your immune system when it's introduced into your body.
They hurt because spike protein (from vaccine) has an ability to cross the blood-brain barrier, reactivating dormant infections/triggering autoimmune diseases/affecting nervous system.

I think the immune system is immensely complex and we barely understand how it truly functions. So while there are many theories with significant evidence, I think it's hard to say much is 'fact' when dealing with immune response. That's my layman's understanding, plus I put a pretty high bar on fact as a designation when dealing with health issues.

 

[nerd]

regulate immunity for how long?

No idea, it's supposed to serve as an initial trigger. Later on, the effects overlap with the response against the spike protein.

I think I made a mistake, when I felt better after vaccination I partied and drank alcohol every damn day making it easier for spike protein to travel wherever it wanted.

It might not be the sole cause, but my personal experience with alcohol is the worst. It's always been. I'll never touch it even if I recover. It's bad for the liver, bad for toxins, and also for histamine and mast cell stability, it also affects the same nerve receptors that are affected by ME's pathophysiology.

But I also needed multiple attempts to realize how bad it really is. My hangover has always been so much worse, even if I didn't feel very drunk the night before.

But I totally empathize with the wish to catch up with life. Do the things we missed and all. If I can one day eat normally, gain weight, work full-time in the field I always chased, and also do sports again, maintain friends and find a relationship, that's all I could wish for. But far away, beyond my visual fantasy.

 

[JES]

regulate immunity for how long?

I think I made a mistake, when I felt better after vaccination I partied and drank alcohol every damn day making it easier for spike protein to travel wherever it wanted.

I would think it's very unlikely that a) you would start noticing symptoms several months later due to a side effect of the vaccine itself and b) that the spike protein would travel somewhere several months later. The mRNA that the vaccine introduces lasts for a couple of days at most and after that no new spike protein is synthesized in your body. The spike protein itself is estimated to survive a couple of weeks, like other proteins.

As someone else pointed out, I find it much more likely that your improvement and later worsening was due to the vaccine's effect on your immune system. People with ME/CFS often feel better on various immune boosters. We now know the mRNA vaccines start losing their effect already in a couple of months, which would co-inside with your timeline of worsening.

Several years ago, some ME/CFS patients were able to reach remission by taking a monthly dose of a Staphylococcus vaccine. There is a 38 page thread about the topic here. Unfortunately, this particular vaccine is no longer produced, but it gave an insight into how immune boosters/modulators could help some of us.

 

[Martin aka paused||M.E.]

If I can one day eat normally, gain weight, work full-time in the field I always chased, and also do sports again, maintain friends and find a relationship, that's all I could wish for.

You will! I cross my fingers for you and every other pwME that it will happen sooner than we except..

 

[nerd]

We now know the mRNA vaccines start losing their effect already in a couple of months, which would co-inside with your timeline of worsening.

This is unlikely the case because the immune provokation lasts maybe a couple of weeks, not months. The decline of antibodies is a natural process that isn't coupled to or associated with immune activity. It happens quickly, a few weeks after reaching its peak after the second shot. Immune activity might be a completely detached process that lasts longer after the provokation, because lymphocyte cell count/profile doesn't just change like that. It takes time.

But I could also imagine that the actual immune boost doesn't last longer than the provocation, but that it fights off a pathogen, and that this pathogen takes time to become relevant again after the fight. Another theory is that the boosted immune system affects the metabolism in a certain way and that the metabolism stays in this state until it eventually fades again.

 

[roller]

The decline of antibodies is a natural process that isn't coupled to or associated with immune activity. It happens quickly, a few weeks after reaching its peak after the second shot.

good, but then (harmful) autoantibodies should decline too, within weeks?
also should "insufficient" antibodies, mounted by the immune system disappear?

(insufficient = i mean things like Antibody-dependent Enhancement)

 

[Marylib]

@georgina699 Very sorry to hear this story. It's only natural that you wanted to have fun when you were feeling better and I'm sure your liver can recover. This whole vaccination thing is massive at the moment. Like many people who have had this diagnosis for nearly 20 years, I have avoided them, because it's well known anecdotally that there is a potential danger in every 'immune insult.' Some people developed ME following a vaccination. And homeostasis is at least more predictable. Nobody can tell us anything because doing a study is yet another provocation study, like the 2 day Vo2 max exercise test. Who wants that? Some people have gone for 'bee venom therapy' to produce a little immune activation to look for a boost. Now theres a vaccine booster eagerness for those who improved with it. @roller I want to know the same thing you do, and maybe @nerd can put his thinking cap on when he feels like it.

 

[nerd]

good, but then (harmful) autoantibodies should decline too, within weeks?

There are different theories for this. Naturally, they should decline as well. One theory is that there remains pathology from the original pathogen and this mediates the sustained autoimmunity. Another theory is that the cellular damage from autoimmunity triggers the formation of even more auto-antibodies.

also should "insufficient" antibodies, mounted by the immune system disappear?

ADE is a manifold issue. They might disappear, but cross-reactivity most likely leads to different developments in the presence of a sustained presence in the herd. But an ill-trained immune memory can be updated.

Some people have gone for 'bee venom therapy' to produce a little immune activation to look for a boost.

A first look into the subject looks promising. It might come close to vaccine adjuvant properties but combined with immune-humoral anti-inflammatory properties as they are exhibited by Ivermectin. On top of that, it even seems to increase GABAergic activity. But allergic reactions should be checked first. Even for the vaccines, allergic reactions could be checked prior by allergologists, not that anybody offers it. I wonder how large the correlation is between vaccine anaphylaxis and pre-existing bee venom allergy.

 

[Martin aka paused||M.E.]

Now theres a vaccine booster eagerness for those who improved with it.

I also improved after Pfizer. I think it's prone to the immune-compromised subset perhaps that they improve on vaccines?!

 

[Learner1]

I got sick in April of 2017. Thanks to Internet I read about Lerner's protocol and convinced my doctor to presctibe high doses of Valtrex in July of 2017. I was on 3g of Valtrex for 6 weeks. I never recovred 100%, but I became functional. Fatigue was still there, at times pretty severe, but pain and dizziness went away.
In March of 2021 I received my second Pfizer shot. For 2.5 months I forgot I was ever sick, never felt better, but in June it all came back and is way way way worse than ever. I'm in bed a lot now and I have scary symptoms like crazy muscle weakness and pain. My eyes are also almost shut from ptosis. Dizzy and tired but wired feeling.

My 2 Modernas reactivated HHV6 (PCR positive). It has taken both Valcyte and Famvir to beat it back. You might check into this and other herpes viruses - there are published cases of shingles and EBV reactivating.

 

[nerd]

My 2 Modernas reactivated HHV6 (PCR positive).

May I ask, did you have any specific symptoms on top of the typical ME symptoms when HHV reactivated?

 

[georgina699]

I also improved after Pfizer

for how long?

 

[Marylib]

for how long?

@Martin aka paused||M.E. has flat B cells. Am I correct? So he is officially immune compromised, as opposed to having a far-too-awake innate immune system. They call it by many names: overactive, compensatory, etc. Yeah, if anyone can get their hands on antiviral medication, sounds like a good plan in the event those viruses wake up and appear as herpes zoster (shingles), HHV6 (my usual fate) EBV, etc. A chronic fatigue syndrome. Sometimes it's mold and environmental. It's so ironic when I read a long list of symptoms for Long Covid and people were in shock that there were so many. Things can always get worse for me personally, but I guess I am not shockable anymore.

 

[Float]

I don t know if it's allowed to post this,but this is an independant channel(not based on one special treatment,or selling anything) on you tube where people got interviewed by Raelan who has recovered herself and share their recovery stories from ME/CFS ,mold toxicity,Lyme, etc....

https://youtube.com/c/RaelanAgle

Thanks @Irat . I don't think we see enough recovery stories. Not because they aren't out there, but because they are under reported, perhaps.

 

[Arius]

Regarding Raelan Agle: in my opinion, she is not to be trusted. You can read what people think of her in this reddit thread, including one user who found out that she's listed on a fraud alert website:

https://www.reddit.com/r/cfs/comments/106a6nn

She's clearly got some sort of marketing deals worked out with various people selling brain-retraining programs etc, which she doesn't disclose. I've called her out in the comments for indirectly promoting Miguel Bautista's fraudulent program on her channel (he gives his clients discounts if they make fake "recovery" videos, many of which now flood youtube, attributing their success to his program), and she ignored my message. I've watched a LOT of her content, almost none of it resonated with my experience, and I've never learned anything useful from her.

The Environmental Health Clinic, Dr. Sarah Myhill, and Dr. Jacob Teitelbaum on the other hand, have put out information that has actually significantly helped me.