Immune problems, covid, and waiting for the right vaccine

[frozenborderline]

I can't feel safe going out to appointments, which I desperately need for a number of things, until I'm somewhat immunologically protected against covid.
I'm unvaccinatd. I have seen what the mrna vaccines risk doing to people with severe ME and mcas. On the other hand I believe covid is horrible, I know it's not just a flu. So I'm stuck in an awful worst of both worlds position. I'm not against all vaccines. I'm cautious with my severe immune hypersensitivity

I am therefore waiting for novavax but it is getting approved in every country before mine (usa) apparently. I mean for God's sake it doesn't look like it will ever be approved despite them having submitted everything they need for approval and quite good studies ... it could even help from public health standpoint of convincing a significant portion of the unvaccinated. But it doesn't seem like I can truly know when novavax will come out.

I also want to see if I'm eligible for evusheld, bc I have low immunoglobulins and am extra at risk for covid regardless of whether or not I am able to get vaccinated.
But doctors are unclear on if I need to try to get vaccinated or hsve a known vaccine allergy to get evusheld.

The other few things I'm trying to think of to see if they will help with covid: having the option to have monoclonal antibodies early in treatment. Or the paxlovid pill. Also trying ambroxol ... which is available le on online pharmacies but we haven't gotten it. And thymosin alpha 1 and VIP (vasoactive intestinal peptide ). And home iv saline , hard without a picc, and losartan.

Is covid any closer to ending than it was at omicron peak. Why is the US not making novavax available? I'm basically having nervous breakdown over this

In my experience covid is serious bc of the long term effects. I don't really care about death or death rates. But the long term effects were nasty when I got it two years ago.

 

[Sizzle]

New territory for me.
Novavax is considered safer for ME/Longcovid patients because it's not a mrna vaccine?

 

[frozenborderline]

I want to add this med , which can help with covid but aldo me/cfs https://t.co/Jw64FfUtvA

 

[frozenborderline]

New territory for me.
Novavax is considered safer for ME/Longcovid patients because it's not a mrna vaccine?

It's a vaccine based on a type of tech used in hep B and flu vaccines. No vaccine is perfectly safe but those vaccines are more time tested thsn mrna. It would be the first vaccine , at least in the US, to use an older technology. Additionally it has also caused less adverse reactions in studies and may work better on variants.

 

[frozenborderline]

Not every novel tech is bad of course. But I've seen mrna results among hypersensitive people ... and it's not pretty.

 

[frozenborderline]

ice9

@__ice9

The continued failure to trial or use ITPP in critical care is an indictment against the regulatory and productive institutions of our supposedly-advanced (increasingly just shorthand for 'gridlocked') economy. https://en.wikipedia.org/wiki/Myo-inositol_trispyrophosphate… It makes blood transport oxygen better.

 

[frozenborderline]

Paxlovid and evusheld , what docs prescribe it. When is novavax coming out

 

[Marylib]

Looks like these people usually carry ITTP powder, but out of stock.
https://liftmode.com/itpp-powder/#1g @heapsreal - have you ever looked into ITTP? You are my go-to guy for having tried many things! Thanks.

 

[frozenborderline]

Looks like these people usually carry ITTP powder, but out of stock.
https://liftmode.com/itpp-powder/#1g @heapsreal - have you ever looked into ITTP? You are my go-to guy for having tried many things! Thanks.

Damn, it's out od stockthat sucks. I'd like to try it. Seems so promising. Well, maybe they'll restock it. Sometimes liftmode does that. Plus them carrying it makes me trust the product. I don't think they carry much sketchy or unsafe things

 

[frozenborderline]

@Hip you should look into itpp it could be a long xovid or me/cfs cure


Guys, I am.being offered evusheld now, and in the absence of novavax , which is very frustrating btw, I may take it... but is evusheld safe, it's basically some long lasting modified monoclonal antibodies...

@Learner1 what do you know about evusheldsafety, I know you do lots of immune treatments,

 

[frozenborderline]

Fda stalling on novavax is UNCONSCIANABLE

 

[Hip]

@Hip you should look into itpp it could be a long xovid or me/cfs cure

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.

 

[heapsreal]

Looks like these people usually carry ITTP powder, but out of stock.
https://liftmode.com/itpp-powder/#1g @heapsreal - have you ever looked into ITTP? You are my go-to guy for having tried many things! Thanks.

You know what, I haven't tried it .
Inositol itself I have.
One use I tried it for was for sleep as I had read it being helpful for anxiety and thought it may help sleep. Can't say it helped.
Another reason is that it can help protect the liver from different stresses and is usually combined with Choline to help rejuvenate the liver and has been used to treat fatty liver. I usually do a 3 week course a couple of times a year. Noted nothing obvious but then again my liver always is good on blood work, have to say I use nac year round which helps the liver. The combo of Inositol/Choline at too higher dose can give you diarrhoea, it's one of the 2 substances but can't recall which one.
As for helping the Red blood cells release more oxygen, I don't know. That particular issue I haven't looked into. It may help increase endurance through a pathway that helps you utilise fat as energy???
ITTP itself I can't say I've used but it 'may' have been in a product I used by injection that had adenosine monophosphate in it but I'm really guessing to try and say I may have used it

 

[Marylib]

LOL Thanks for your detailed reply as usual @heapsreal

 

[Marylib]

@Hip you should look into itpp it could be a long xovid or me/cfs cure


Guys, I am.being offered evusheld now, and in the absence of novavax , which is very frustrating btw, I may take it... but is evusheld safe, it's basically some long lasting modified monoclonal antibodies...

@Learner1 what do you know about evusheldsafety, I know you do lots of immune treatments,

I know a few with ME who are trying evusheld. I'd love to try but don't have access- so maybe it is a good plan for you? Why are you attracted to novavax? Sorry if you have answered this elsewhere or previously @frozenborderline My memory is shot. I'm having a nervous breakdown over the whole thing too, so you are not alone in this.

 

[frozenborderline]

I know a few with ME who are trying evusheld. I'd love to try but don't have access- so maybe it is a good plan for you? Why are you attracted to novavax? Sorry if you have answered this elsewhere or previously @frozenborderline My memory is shot. I'm having a nervous breakdown over the whole thing too, so you are not alone in this.

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]

You know what, I haven't tried it .
Inositol itself I have.
One use I tried it for was for sleep as I had read it being helpful for anxiety and thought it may help sleep. Can't say it helped.
Another reason is that it can help protect the liver from different stresses and is usually combined with Choline to help rejuvenate the liver and has been used to treat fatty liver. I usually do a 3 week course a couple of times a year. Noted nothing obvious but then again my liver always is good on blood work, have to say I use nac year round which helps the liver. The combo of Inositol/Choline at too higher dose can give you diarrhoea, it's one of the 2 substances but can't recall which one.
As for helping the Red blood cells release more oxygen, I don't know. That particular issue I haven't looked into. It may help increase endurance through a pathway that helps you utilise fat as energy???
ITTP itself I can't say I've used but it 'may' have been in a product I used by injection that had adenosine monophosphate in it but I'm really guessing to try and say I may have used it

Regular inositol and this are pretty different. Not that myoinositol doesn't have some good uses... but

 

[heapsreal]

Regular inositol and this are pretty different. Not that myoinositol doesn't have some good uses... but

Yeah you got me lol. But your right I have tried a few things or two. A couple of times I've started writing a list of things I've tried and just given up. It's like a black hole lol. But something I will keep an eye on now.

 

[Learner1]

@Learner1 what do you know about evusheldsafety, I know you do lots of immune treatments

Sorry, not sure why I didn't get the tag. Looking through your questions...

BA.2 is on the rise and it is more contagious than Omicron. You are definitely wise to be seeking more protection.

By all accounts I've seen, getting the vax is better than getting the virus, 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.

I had "normal" side effects,ceorse than done, better than others, except the full dose booster was pretty bad for 2 days then I improved. I also had HHV6 reactivate after the 2nd dose - found because I have a standing order for PCR tests for my viruses, and was able to get on valgancyclovir and famciclovir and get on top of it before it got out of control.

My immunologist told me at my last visit that Evushield and Paxlovid aren't readily available, so not to count on them, as a noted major hospital nearby only got something like 20 doses of Paxlovid. He said if I got the virus, the state has mobile units, so I was to contact him And he'd put me on the list to get sovtrovimab, but that's not an option any more. From what I understand, my state, which is big on following rules, only has been giving Evushield to organ transplant and advanced cancer patients - I've heard of other cancer patients not being able to get it. According to the US government, my immunodeficiency should qualify me, but because they only bought 1 dose for every 7 people who need it, there's a prioritized list for who can get it, and people like me aren't high enough on the list, so I probably won't get it

So, the next best thing is to get IVIG which now has donor antibodies in it.

I don't think this pandemic virus is going away anytime soon, because of people's behavior, including our politicians and business leaders, this thing is going to keep going around and round and mutating, until eventually the vulnerable die off, it burns itself out, or everyone becomes immune, but I think any of those possibilities is a long way off...

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.

Best wishes...

 

[hapl808]

I think one of my concerns is there are ME/CFS people who got the shot and had bad side effects. Then got COVID and still had (have) awful symptoms. We can wonder if their symptoms would be worse if they were unvaccinated, but we have no way to know.

I wish we had trials on specifically ME/CFS people that judged both the effects of the vaccines on ME/CFS level and the effects of getting COVID on ME/CFS if unvaccinated or vaccinated or boosted. Of course, no one tends to run any trials on us so we're just shooting in the dark and making (possibly dangerous) assumptions.