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Immune problems, covid, and waiting for the right vaccine

Marylib

Senior Member
Messages
1,155
Novavax is an older tech that's already been tries in other vaccines. That doesn't automatically mean it's better but it does mean it's more time tested. Hep c or b vax and flu vaccine use same tech as nivavax. In studies it's also less reactogenic but helps with protection against variants more
@frozenborderline I've been looking for studies about novavax being more protective with the more recent variants but haven't been able to find any. If you feel up to it, could you point me to some?

(I guess the whole world is waiting for a vaccine that actually prevents infection for longer than a few months. In the US they are giving out the 4th dose. In New Zealand the booster window is now 3 months after the second dose - down from 6 originally - and if you recover from infection they want you to have another dose within one month to be considered vaccinated. Some with Long Covid are suffering from the vaccinations, too, and/or getting infected again after vaccination, so it's all up to your own best judgement at any given time. The only clear winners are the damn virus and those who can tolerate multiple boosters).

@Learner1 I hadn't considered that the IVIG would now have donor antibodies. Not that I can get IVIG, but that's a very good point. Thanks. I have heard that some of the previously healthy who landed in our boat after the vaccines, have had some success with this to treat the symptoms.
 

frozenborderline

Senior Member
Messages
4,405
and all the ME/CFS docs recommend it for almost all of their patients, with a very few exceptions. My doc has many delicate, sensitive patients, and I only know of a couple that he has told to skip it. For the rest of us, he's recommended loading up on antihistamines and mast cell stabilizers and then doing it, and most of us have been fine.
My mcas isn't really stabilized , it would be impossible for me to load up on mcas meds more than I am.

I have seen many accounts of me/cfs patients that are currently crashed way worse off than they are now. My impression of why me/cfs docs recommend the vaccine still , is that they may think that death and hospitalization are a main concern and not crashing, especially not having our lived experience that crashing is often worse than death. They may also assume that me/cfs patients are so worried about the vaccine bc of anaphylaxis or *acute* mcas reactions, like death from anaphylaxis, rather than more subtle but still awful long term reactions. I'd rather risk anaphylaxis with no long term issues than the other way round. There are treatments for anaphylaxis, and death isn't the worst thing in the world. There arepeople, however. Who have had these vaccines and still aren't better.

Jen brea has tweeted about this a lot, and I think of her as someone who is conservative in posting about topics like this and trends toward pro science stuff , knows statistics etc... it may be that serious vaccine adverse events like pwME aren't reported or measured enough bx how can u medically classify a "crash" that doesn't show up on blood tests etx... it's not like myocarditis or a clot.

But even if the vaccine is risky it would be worth it if it was effective against Long covid. However studies I found and showed in another thread said that while it's somewhat unclear, long covid isn't usually prevented by the vaccine very much if at all. The vaccine reduces risk of hospitalization and death only. If there is is effect reducing long covid it is a very small effect.

I'm not downplaying covid either. The ideal situation for people with this illness would be to not have to choose, and maybe with some of the newer immune treatments we won't have to. Paxlovid is in overly short supply some places but this doesn't mean everywhere , and it has been increasing in supply. Novavax has applied for eua and is available in many countries, just not the USA yet. And evusheld is available for some, personally I qualify , just trying trying see if it's risk profile compares to vaccines or what.

Paxlovid may even help with long covid as well.

It's true we have to deal with reality as it is and not as it should be, but pointing out that it's unfair that we don't have solutions better than vaccines that not all can tolerate could lead to solutions throughactivism, also scientists are starting to realize the vaccines aren't enough, as are leaders, so I think they'll maybe focus on developing other therapeutics. Or better vaccines , which may include safer , not just more effective. One can hope.

Mainly I'm interested in the safety and efficacy of evusheld, masking with n95s (fit properly , of course ), and thymosin alpha , and paxlovid against new variants
 

frozenborderline

Senior Member
Messages
4,405
@frozenborderline I've been looking for studies about novavax being more protective with the more recent variants but haven't been able to find any. If you feel up to it, could you point me to some
Sorry I have genuinely been having eye problems recently which is also demoralizing so being on here for more than a few minutes sucks. Or any screen. I push thru it but it hurts. I've read press releases and articles that mention in passing that novavax may be both more effective against newer variants than Pfizer but also last longer, which may make it a better booster... but that's without without taking into account it may be safer, so it may be better booster anyway. This comes up in many articles I've read on novavax, I didn't look at the firsthand studies yet... I just read most of the news articles that make the case for novavax
 

frozenborderline

Senior Member
Messages
4,405
@Marylib I would respond more in deoth but the eye thing

Regarding the donor antibodies in ivig my mcas doc did mention this so I'm psyched to try ivig although although absolutely need to fix my eye problems first
 

frozenborderline

Senior Member
Messages
4,405
If I were in your shoes, I would load up on antihistamines and go down to CVS and get the shot. I definitely understand your fears, and serious medical history, but a lot of us have been okay, after some discomfort. I think it's a lot worse if many of us actually got the virus. There are others who would argue differently, but as you asked my thoughts, I've shared them with you.
I did ask your thoughts , so it would be unfair to argue, I guess i meant to clarify, as I'm pretty set on getting novavax, which is a legitimately effective vaccine, not pfizer... my mind is made up on that. What I was asking about , or meant to, is whether it's worth bothering with evusheld or paxlovid or ivig in the meantime, whether those things are safe and or effective for helping with covid. I could've been more clear. Im.definirely not getting the shot ... maybe i would if someone showed it protecting against long covid significantly... but about a month back i looked into this and I didn't find anything like that (most arguments for it are about hospitalization and death, not long covid).

So again, I'm really asking, in your knowledge of these immune treatments like monoclonal antibodies and evusheld, the long lasting version, are those reasonably safe ... ? Are they effective? How about paxlovid ? My caregiver checked and found tbat i should be eligible for paxlovid if i test positive, doctor said she'd prescribe evusheld if I want it ... I just need to decide soon! In meantime I actually worked on a more careful seal for my n95s, I never just go with surgical masks or cloth crap. Not perfect but I've heard well fit n95s do help a little bit.
 

Marylib

Senior Member
Messages
1,155
I hope you can find something. My GP said the paxlovid where I live would go to the folks on chemotherapy - not me. I'll see what I can find out about novavax on my own. So no worries, @frozenborderline. Save your eyes.
 

Marylib

Senior Member
Messages
1,155
@frozenborderline - about evusheld and people with ME. There is a small facebook group for that. So far the ones with evusheld are managing well. One has Long Covid - got worse from the vaccine, so she was able to access it too - so far so good for her. I think she is in New York and has an integrative medicine style doc. This doc also has his own formulation of a heparin nasal spray to help the virus collapse before it digs in too far.
 

frozenborderline

Senior Member
Messages
4,405
@frozenborderline - about evusheld and people with ME. There is a small facebook group for that. So far the ones with evusheld are managing well. One has Long Covid - got worse from the vaccine, so she was able to access it too - so far so good for her. I think she is in New York and has an integrative medicine style doc. This doc also has his own formulation of a heparin nasal spray to help the virus collapse before it digs in too far.
Wow. I'm in NYC area but might have to leave. AnywY maybe I should try that doc
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
So again, I'm really asking, in your knowledge of these immune treatments like monoclonal antibodies and evusheld, the long lasting version, are those reasonably safe ... ? Are they effective? How about paxlovid ? My caregiver checked and found that i should be eligible for paxlovid if i test positive, doctor said she'd prescribe evusheld if I want it ... I just need to decide soon!
Evushield lasts 6 months and side effects include hypersensitivity reactions (including anaphylaxis), bleeding at the injection site, headache, fatigue and cough. It prevents severe illness and death.

Here is info on Paxlovid.

https://www.yalemedicine.org/news/1...:text=“Paxlovid is usually very well,Diarrhea

Paxlovid also contains milk allergens, making it problematic for some patients.

Different states have different policies and priorities for who gets these treatments. My immunologist just told me he'll refer me when 3 months ago, he said I wasn't high enough on my states priority list.

I don't think any of these solutions is completely safe, but neither is getting COVID.
 

frozenborderline

Senior Member
Messages
4,405
Maybe I'll go to Croatia or Austria for novavax. They don't require vaccine to enter and they have novavax. Probably have some good air too
 
Messages
181
Not sure where to put this, but this is a very interesting study from Canada on timing the doses of the vaccines. It came out last month but I just saw it from Dr Eric Topol on twitter. https://drerictopol.com/
SARS-CoV-2 Omicron Spike recognition by plasma from individuals receiving BNT162b2 mRNA
vaccination with a 16-week interval between doses
https://www.cell.com/action/showPdf?pii=S2211-1247(22)00153-X
A longer intervall is definetely good. There have already been studies on that last year, not for Omicron obviously. But it was clear that the antibody's and T-cell's quality and ability to neutralise different variants are better with a longer intervall.
 

Marylib

Senior Member
Messages
1,155
I edited because I'm not sure exactly where I found the report. All I know is they told us to have the first two doses 3 weeks apart and the next one 12 weeks later - like the manufacturer said to do. This is going to make some people unhappy, for various reasons.
 

BenFromNZ

Senior Member
Messages
151
Some people are trying ITPP on the Discord server, including @mitoMAN.

There are some dubious sources, but this source I believe is good. A dose of 100 mg per day is normally suggested, but some are taking higher.

I've just been looking into ITPP and hoping to source some. However I came across that source a few days ago and figured it wouldn't be possible to get at the moment because of the war as they are based in Kyiv, Ukraine.

@mitoMAN Hey man, are you able to shed any light on where the ones in the discord group are sourcing their ITPP from? Cheers
 
Last edited:

BenFromNZ

Senior Member
Messages
151
Looks like it was a wrong assumption, they(source linked in @Hip 's post) are indeed still in business even though the war is going on. I have just ordered some ITPP and Bromantane from them.