• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Long covid improves after vaccine

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
Thank you for explaining what you meant in your prior post @pattismith. My doctor told me the same thing (that these COVID mRNA vaccines are safer than ANY vaccine with adjuvants for someone w/autoimmunity like me). The adjuvants cause the vaccines to speed up the immune response so it is even stronger (and more likely to trigger new autoimmunity or to worsen pre-existing autoimmunity).

However, it is not yet known what these mRNA vaccines will do to someone w/a history of severe autoimmunity (like me). Even though the Pfizer & Moderna vaccines do not contain traditional adjuvants, there are no studies (short or long-term) in how they affect autoimmunity. That is one of the main reasons that I will not be getting the vaccine when it is offered to me in the upcoming months.

If my autoimmunity was not in remission and I was still severely ill and disabled (like I was prior to treatment), than I actually probably would get the COVID vaccine b/c I would feel that I had nothing to lose. But being in remission from the autoimmunity, I feel that I have literally everything to lose if the vaccine ended my remission. I feel that I have a much great chance of damage from the vaccine than from COVID (for me personally).
I understand why you are not getting the vaccine but that adds a wrinkle, you would have to wait until the country is certified covid free before relaxing your preventive steps because the vaccine does not necessarily prevent infection, but it does shorten its duration, prevents it causing death and likely makes it harder to transfer person to person due to suspected lower viral load when infected (but not impossible). You would be depending on more than herd immunity, you would be depending on the virus burning itself out which should happen but not as soon as herd immunity is reached becasue you need more than immunity, you need no exposure.

All that said i have a question, what is the level of concern for everyday exposure to virus/bacteria, we are exposed to things in the air/surfaces 24/7 even without contact with other humans but that does not seem to be an issue in your case (you don't have to live in a hermetically sealed bubble like the bubble boy who had no immune system).
https://en.wikipedia.org/wiki/David_Vetter
 

Gingergrrl

Senior Member
Messages
16,171
All that said i have a question, what is the level of concern for everyday exposure to virus/bacteria, we are exposed to things in the air/surfaces 24/7 even without contact with other humans but that does not seem to be an issue in your case (you don't have to live in a hermetically sealed bubble like the bubble boy who had no immune system). https://en.wikipedia.org/wiki/David_Vetter

I'm not sure if you mean the level of concern in general or to me specifically? If you mean to me, my situation is the opposite of the Wikipedia link. The boy referenced in that link had an immune deficiency in which he was very susceptible to infections. I am the opposite and have not had a traditional cold, flu, or infection since Jan 2013 (now over 8 yrs) including the 2+ yrs that I was immuno-compromised from Rituximab and had no B-cells.

I did not isolate whatsoever during the 2+ yrs that I was getting Rituximab and was constantly exposed to infections from friends & family but never got sick. At present, I am no longer immuno-compromised and my last Ritux infusion was Dec 2019 (and my B-cells are now fully back in the normal range). I also do not have any of the medical conditions that (reportedly) increase the risk of severe COVID (such as asthma, diabetes, high BP, etc).

So I have to assess the overall risk/benefit analysis of getting COVID vs. getting the vaccine in light of my history of severe autoimmunity (vs. the Wiki article that you cited is re: someone with a severe history of immune-deficiency). I hope that makes more sense!
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
I'm not sure if you mean the level of concern in general or to me specifically? If you mean to me, my situation is the opposite of the Wikipedia link. The boy referenced in that link had an immune deficiency in which he was very susceptible to infections. I am the opposite and have not had a traditional cold, flu, or infection since Jan 2013 (now over 8 yrs) including the 2+ yrs that I was immuno-compromised from Rituximab and had no B-cells.

I did not isolate whatsoever during the 2+ yrs that I was getting Rituximab and was constantly exposed to infections from friends & family but never got sick. At present, I am no longer immuno-compromised and my last Ritux infusion was Dec 2019 (and my B-cells are now fully back in the normal range). I also do not have any of the medical conditions that (reportedly) increase the risk of severe COVID (such as asthma, diabetes, high BP, etc).

So I have to assess the overall risk/benefit analysis of getting COVID vs. getting the vaccine in light of my history of severe autoimmunity (vs. the Wiki article that you cited is re: someone with a severe history of immune-deficiency). I hope that makes more sense!
My confusion here is that you are ok for normal exposures but the vaccine is an exposure as well, the only difference is that its a controlled exposure to a non toxic portion of the covid virus.
So why is the vaccine a problem but everyday living is not?
 

Gingergrrl

Senior Member
Messages
16,171
My confusion here is that you are ok for normal exposures but the vaccine is an exposure as well, the only difference is that its a controlled exposure to a non toxic portion of the covid virus. So why is the vaccine a problem but everyday living is not?

I don't know how to explain this without taking this thread off-track but I will try. Basically, I have a history of extremely severe autoimmunity with 11 different autoantibodies (the worst being the LEMS autoantibody that caused me such severe muscle and breathing weakness that I used a wheelchair for four years).

The two treatments that put me into remission were immuno-suppressants. Vaccines are the exact opposite of the treatments that put me into remission. Vaccines are extremely immuno-stimulatory and have a known, proven history of both causing and of worsening autoimmune diseases.

I am not concerned that the vaccine would expose me to COVID. I am concerned that the vaccine would literally end my remission from my autoimmune diseases. I am also an anaphylaxis risk to the vaccines from my history of severe MCAS but that is a separate issue.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
I don't know how to explain this without taking this thread off-track but I will try. Basically, I have a history of extremely severe autoimmunity with 11 different autoantibodies (the worst being the LEMS autoantibody that caused me such severe muscle and breathing weakness that I used a wheelchair for four years).

The two treatments that put me into remission were immuno-suppressants. Vaccines are the exact opposite of the treatments that put me into remission. Vaccines are extremely immuno-stimulatory and have a known, proven history of both causing and of worsening autoimmune diseases.
Due to the adjuvants?

I am not concerned that the vaccine would expose me to COVID. I am concerned that the vaccine would literally end my remission from my autoimmune diseases. I am also an anaphylaxis risk to the vaccines from my history of severe MCAS but that is a separate issue.
I understand this is not a risk anyone would want to take.
 

pattismith

Senior Member
Messages
3,931
I wanted to clarify (since I have minimal science background :nerd:), is this study with Sjogrens patients and vaccines an example of molecular mimicry (like you mentioned above) or is it simply showing how autoimmunity can be triggered by vaccines with adjuvants?

The article speaks about adjuvant vaccine triggering autoimmunity in susceptible patients that are not under immunosuppressive treatment. (There is no known mimicry involvement between Sjogren and H1N1);

I agree w/you and if there was a scenario where I had to get a COVID vaccine, I would absolutely want the one without adjuvants (Pfizer & Moderna). Can you explain more what you mean re: "limited antigen content"? Which of the existing COVID vaccines would fall into that category?

Only protein:peptides have antigenic properties (and polysaccharides)
Moderna/Pfizer RNA vaccines are typically with limited antigen content, they only contain RNA with Spike protein code.
Antigen content depends on
-protein content and
-DNA and
-RNA content,
( DNA and RNA are coding for one or several proteins)
In case of Moderna and Pfizer vaccine they only contain RNA coding for one protein, and it seems to me that they don't contain any other protein or coding material.

Astrazeneca contains adenovirus envelope with modified adenoviral DNA inside and a small peace of Covid DNA (coding for spike protein).

In this case, only the covid DNA is supposed to enter the cells nucleus and replicate, however the adenovirus still enters the cell and may induce some inflammatory response...

If I am offered this vaccine, I may agree. (I have MBL deficiency and my CD8 are low limit, so my immunodeficiency makes me sensitive to any virus, especially respiratories.)

I am so sorry to hear that and I have never gotten a flu vaccine in my life. When I had a neurotoxic reaction to a fluoroquinolone antibiotic in 2010 (which damaged the tendon in my arm and I ended up in hospital), I was told by a Neuro at that time that I should never get a flu vaccine in the future. Sadly, I did not learn of the specific reason why, but his words have stuck w/me. And now my current docs agree that I should never get a vaccine w/adjuvants, and ideally I should not get ANY vaccines. COVID is the one exception where they feel the risk could be worth it (and I totally understand why) but I am still not willing to risk ending my remission.

Ginger your docs are certainly one of the best docs, so I'm sure they gave you the right advises for you. I will try to know more about fluoroquinolone reaction; could it be an auto-immune reaction ?
 

Gingergrrl

Senior Member
Messages
16,171
The article speaks about adjuvant vaccine triggering autoimmunity in susceptible patients that are not under immunosuppressive treatment. (There is no known mimicry involvement between Sjogren and H1N1)

Thank you for clarifying this.

Moderna/Pfizer RNA vaccines are typically with limited antigen content, they only contain RNA with Spike protein code... In case of Moderna and Pfizer vaccine they only contain RNA coding for one protein, and it seems to me that they don't contain any other protein or coding material.

Thank you for explaining this also (and I hope that I retain it and do not ask you again :headslap:)

Ginger your docs are certainly one of the best docs, so I'm sure they gave you the right advises for you. I will try to know more about fluoroquinolone reaction; could it be an auto-immune reaction ?

The Neuros in 2010 (who I saw after my neurotoxic reaction & arm injury from Levaquin) were never my ongoing docs. I wish I knew precisely why they told me to avoid the flu vaccine in the future (in relation to fluoroquinolone toxicity /injury). I was in excellent overall health prior to having the neurotoxic reaction to Levaquin. One of the docs at that time described it as a massive assault to my immune system but he believed that I would recover from it.

It took about 1.2 yrs to fully recover from it (except for my triceps tendon which is damaged for life). But I did recover, only to get severe Mono from EBV in 2012, which was the second massive hit to my immune system within a 2-year period. Several other things followed and I went on to develop all of the autoimmune disorders.

When I first saw my ME/CFS specialist in 2014, he said that I should avoid all vaccines in the future b/c my immune system was so abnormal. But all of this pre-dated the existence of COVID which is a complete game-changer re: vaccines. I keep researching in the hope that I will find a piece of information that convinces me that the COVID vaccine will not end my remission but so far, I cannot find it :bang-head:.
 

Marylib

Senior Member
Messages
1,155
@Gingergrrl
People are reporting all kinds of things. A friend who I do know from real life says her mRNA first dose did end her remission of ME/CFS. She also had a Lupus dx at one point and another inflammatory illness. She is determined to bounce back and last I heard was on the search for something to deal with the headache alone. She had been avoiding vaccines for years, as I have been. So I won't be having it unless my circumstances change. Not worth the risk in my particular situation. Like the doc who said she could inject enzymes into my Duyputrens (sp?) contracture to dissolve it, but that if she missed I'd lose the tendon. Not at this time, thanks all the same. My friend who had an episode of Guillane Barre (and at one time had a cfs diagnosis) was ordered off all vaccines forever. It's like Russian roulette out there...
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl People are reporting all kinds of things. A friend who I do know from real life says her mRNA first dose did end her remission of ME/CFS. She also had a Lupus dx at one point and another inflammatory illness. She is determined to bounce back and last I heard was on the search for something to deal with the headache alone. She had been avoiding vaccines for years, as I have been.

I am sorry to hear about your friend and am hoping that she will make a full recovery from the vaccine and regain her remission. Was her ME/CFS, Lupus, and other inflammatory illness all in remission due to a specific treatment(s)?

So I won't be having it unless my circumstances change. Not worth the risk in my particular situation. Like the doc who said she could inject enzymes into my Duyputrens (sp?) contracture to dissolve it, but that if she missed I'd lose the tendon. Not at this time, thanks all the same.

I am fully of the same perspective as you that the risk of the vaccine is not worth the potential cost in my specific situation. I have discussed it with my doctors (who I trust) and asked them if there was a chance that the vaccine could permanently end my remission and they said yes. They didn't say that it WOULD happen but they all felt that it COULD happen and I am simply not willing to take that risk.

My friend who had an episode of Guillane Barre (and at one time had a cfs diagnosis) was ordered off all vaccines forever. It's like Russian roulette out there...

Do you mean that your friend was incorrectly diagnosed with "CFS" but in reality had Guillain Barre or did you mean that your friend actually had both ME/CFS & Guillain Barre? My new PCP (GP) has a patient that had been paralyzed (quadriplegic) due to Guillain Barre and his situation reversed with high dose IVIG & steroids and he is now an athlete again. To clarify, he never had ME/CFS but he had a very severe neuromuscular disease go into remission and she told him absolutely not to get the vaccine or it could reverse it. She also advised me not to get the vaccine b/c I have autoimmune neuromuscular illness in remission and getting the vaccine would be like Russian roulette for me as well.
 

Marylib

Senior Member
Messages
1,155
@Gingergrrl and everyone on this thread - sorry I won't see these without a tag of some kind. I finally learned how to watch threads. Friend who had episode Guillain-Barre was at one point diagnosed with CFS - but without PEM, that means a misdiagnosis. So her doc - (I don't know who diagnosed her Guillain-Barre) said no more vaccines ever. She also has a cardiac problem. So forgive me for asking again, if I am, @pattismith and @Pyrrhus or @Hip @godlovesatrier @MikeC @Alvin2 - but what are your theories about reactions to this mRNA vaccine? (Not including AZ vaccine or Johnson and Johnson 1 dose in this):

1. "I didn't notice anything." (presumed like in the elderly, not able to mount an immune response, similar to immune suppressant meds.)

2. "I felt better for awhile, then back to previous level of function within 2 weeks. I want more of it!"

3. "It destroyed what little life I had left in me - worst decision of my life. Now I have to go on steroids." (obvious systemic inflammatory response)

I am working with an immunologist who hopes! to get sufficient funding for Long Covid people (I am only suspected Post-Covid because I could not get tested in Feb-April of 2020). This immunologist is willing to take anyone pre-Covid vaccine - including people with ME if she can get enough volunteers - to do immune measures pre and post mRNA vaccine. I am asking for a mini-dose, paediatric style dose, if she can work this out with her study parameters, or one dose of Pfizer mRNA - then test again, over time, etc. She is also accepting Long Covid people who already had both doses of Pfizer mRNA. Time is of the essence and she needs to get this funding before mid-July.

Theories? Hypotheses?
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl and everyone on this thread - sorry I won't see these without a tag of some kind. I finally learned how to watch threads.

No worries @Marylib! I don't check PR very frequently any more and also tend to miss a lot!

Friend who had episode Guillain-Barre was at one point diagnosed with CFS - but without PEM, that means a misdiagnosis. So her doc - (I don't know who diagnosed her Guillain-Barre) said no more vaccines ever. She also has a cardiac problem.

Thanks for clarifying. I've now had three different doctors (my long-term main doctor, a new GP, and my dermatologist) tell me that I absolutely should not get the COVID vaccine. It is just too immuno-stimulatory for me and high chance of ending my remission. All three of them 100% endorse and support the vaccine, just not for me with my specific medical history. Similar to your friend with her medical history.