Third partial remission (no PEM) post-Moderna mRNA vaccine

[Wishful]

Yes it's a very interesting pattern and surely it would help shine a light on what causes or perpetuates the manifestation of PEM, at least in some pwME.

Yes, I wish the research community would be more receptive to these unusual cases where patients have a reliable response to something. Even if they can't do a detailed analysis immediately, they could freeze some samples and post the patient's situation, so that eventually some researcher might decide that it's worth analysing. I did offer to provide before/after samples when cumin was working reliably for me. Maybe it would have revealed what is involved with PEM. That opportunity is lost now.

 

[GlassCannonLife]

Yes, I wish the research community would be more receptive to these unusual cases where patients have a reliable response to something. Even if they can't do a detailed analysis immediately, they could freeze some samples and post the patient's situation, so that eventually some researcher might decide that it's worth analysing. I did offer to provide before/after samples when cumin was working reliably for me. Maybe it would have revealed what is involved with PEM. That opportunity is lost now.

Oh, it doesn't work for you anymore??

 

[Diwi9]

Noooo! Don't lead yourself into psychosomatic worsening. Think happy thoughts of it being a permanent improvement!

Good luck with that. My ME never listens to me.

Hahaha! No remission has ever been full. I find this illness to be a kaleidoscope of symptoms. Some appear for a while and fade while other reappear for a time. My course changes throughout the day...gotta keep things exciting, you know?

 

[Gingergrrl]

Hi @Gingergrrl - I hope I answer your questions correctly because it is late and I have become overwhelmed by the ME/CFS categorizations and random research findings over the years.

Thank you and you definitely answered my question!

I think I should have been more clear re: that I wasn't even referring only to ME/CFS specifically vs. to ALL illnesses that affect the immune system and skew it away from normal functioning (with one sub-group that leans toward immuno-suppression and another sub-group that leans toward autoimmunity plus allergic reactions).

My illnesses, diagnoses, symptoms and treatments without question all skew toward auto-immunity & allergic reactions and NONE toward immuno-suppression. I was curious how similar you were to me in light of your improvement with the vaccine and I appreciate the info.

 

[Diwi9]

Thank you and you definitely answered my question!

I think I should have been more clear re: that I wasn't even referring only to ME/CFS specifically vs. to ALL illnesses that affect the immune system and skew it away from normal functioning (with one sub-group that leans toward immuno-suppression and another sub-group that leans toward autoimmunity plus allergic reactions).

My illnesses, diagnoses, symptoms and treatments without question all skew toward auto-immunity & allergic reactions and NONE toward immuno-suppression. I was curious how similar you were to me in light of your improvement with the vaccine and I appreciate the info.

If it helps at all with my subtype, I have the mannose-binding lectin protein deficiency genetic mutation and when tested, I was completely deficient. There is no specific consensus on what MBL deficiency means longterm, but obviously it accounts for a part of the compliment immune system being knocked out.

Best wishes to you, @Gingergrrl. Thanks for taking the time to interact on my thread. I hope you continue to manage your myriad of conditions with success and improved QoL.

 

[Gingergrrl]

If it helps at all with my subtype, I have the mannose-binding lectin protein deficiency genetic mutation and when tested, I was completely deficient. There is no specific consensus on what MBL deficiency means longterm, but obviously it accounts for a part of the compliment immune system being knocked out.

I just Googled "mannose-binding lectin protein deficiency genetic mutation" (and the disease itself) and was not familiar with it. It sounds like it causes immuno-suppression and frequent infections and that frequent vaccines are required. So this would match with your situation although, if I am understanding correctly, you don't have the disease vs. just the genetic mutation?

Best wishes to you, @Gingergrrl. Thanks for taking the time to interact on my thread. I hope you continue to manage your myriad of conditions with success and improved QoL.

Thank you and I found your thread really interesting and helpful (in my ongoing process of gathering info re: vaccines and autoimmunity). I am so happy that you have had a third remission from the vaccine/boosters! I am hoping that this one will be permanent vs. temporary.

Have you found that other vaccines (besides Covid) or other treatments that stimulate the immune system have been helpful for you (meaning the exact opposite of my situation)? Thank you also for the kind words about my situation and I really appreciate it (but I don't want to say more here and take this thread completely off track)!

 

[Diwi9]

@Gingergrrl - I have the MBL deficiency gene mutation, so I asked my doctor for the blood test to check my levels and I was totally deficient. This is how LabCorp describes the purpose of the test: The determination of MBL concentrations in serum may be useful for the elucidation of suspected immune defects and as a prognostic indicator alerting to the need for heightened therapeutic or prophylactic measures in immunosuppressed patients, including patients receiving cancer chemotherapy and patients with cystic fibrosis, SLE, or rheumatoid arthritis.

Like, I said, the genetic mutation has a high frequency in the population, so it's often dismissed, but could in fact be a complicating factor.

I've not had any other vaccinations to determine how they would affect me. I had a flu shot (H1N1) in either late 2008 or early 2009, I had an adverse reaction with sore joints and flu-like symptoms. It was a later in 2009 when I first developed mild ME. I am interest in getting a shingles jab later this year.

 

[Wishful]

Oh, it doesn't work for you anymore??

No, but the wonderful thing is that it doesn't work because taking it for ~2 years seems to have completely cured my PEM, so there's nothing for cumin to do. I re-test treatments occasionally, to see if they're still working or if the optimal dosage has changed. I tried skipping my cumin and doing something that should have triggered it, and no PEM occurred. I've been PEM-free since.

I assume that cumin has to effectively block PEM in order for it to cure it after 2 years. However, there's no guarantee that it won't cure PEM if you take it for 2 years even if it doesn't show any immediate benefits. I expect that thought will bother the cumin-haters out there. Can you be sure that it won't work for you?

BTW, cumin continued to be a reliably effective PEM-blocker for the whole 2 years.

 

[Consul]

@Wishful have you concidered telling some of the top researchers about your experience with cumin as a PEM blocker?

 

[Wishful]

@Wishful have you concidered telling some of the top researchers about your experience with cumin as a PEM blocker?

Yes, I did that years ago. I think I got a 'thank you', but nothing further. Besides, I expect that many researchers read these forums, so the information is out there.

I've been waiting for more people to report wonderful effectiveness of cumin, but so far there's been a lack of cooperation. C'mon people, get it working for you.

 

[Gingergrrl]

@Gingergrrl - I have the MBL deficiency gene mutation, so I asked my doctor for the blood test to check my levels and I was totally deficient. This is how LabCorp describes the purpose of the test: The determination of MBL concentrations in serum may be useful for the elucidation of suspected immune defects and as a prognostic indicator alerting to the need for heightened therapeutic or prophylactic measures in immunosuppressed patients, including patients receiving cancer chemotherapy and patients with cystic fibrosis, SLE, or rheumatoid arthritis.

Thank you for explaining this and it is interesting that they include patients who are immuno-suppressed from a treatment (for cancer or autoimmunity) vs. only from an illness. I had never heard of MBL deficiency before you mentioned it. I was considered immuno-suppressed during the years that I was getting Rituximab (but no longer once I stopped the treatment and my B-cells grew back in both number and function).

I've not had any other vaccinations to determine how they would affect me. I had a flu shot (H1N1) in either late 2008 or early 2009, I had an adverse reaction with sore joints and flu-like symptoms. It was a later in 2009 when I first developed mild ME. I am interest in getting a shingles jab later this year.

I've never had any vaccinations since I got sick (and have never gotten a flu shot in my entire life). I had all of my childhood vaccines & boosters though up through adulthood (but many years before I got sick). Did you feel that your reaction to the H1N1 shot was one of the triggers of your ME/CFS? I wasn't sure if I understood properly?

 

[Diwi9]

I've never had any vaccinations since I got sick (and have never gotten a flu shot in my entire life). I had all of my childhood vaccines & boosters though up through adulthood (but many years before I got sick). Did you feel that your reaction to the H1N1 shot was one of the triggers of your ME/CFS? I wasn't sure if I understood properly?

I didn't consider the vaccine a prognosticator for my illness, but just something going wonky with my immune system as I had also developed allergies around this time and was having frequent mouth sores. I have noticed that many people seemed to have developed ME/CFS around 2009. So, maybe a spike in post-viral illness due to H1N1 or the vaccine completely ignored by the CDC?

 

[Diwi9]

It has been exactly four weeks since I entered the partial remission. It is over. It was a fun ride and I really enjoyed myself while it lasted, even having house guests, going downtown, grocery shopping, driving, and even kayaking. The biggest pleasure was just being able to do things on the fly.

 

[hapl808]

Sorry to hear that it's over, but glad you enjoyed it. Things like that really seem to indicate that improvement is possible if you could trigger the same mechanism in some way. I have found some benefits from AHCC which is supposed to improve immune function, so I wonder if higher doses or synergistic combinations could duplicate some of those effects.

 

[Diwi9]

@hapl808 - I hope better explanation arises for the reaction. Since the vaccine triggers a massive immune reaction for me, it must be in that camp...something about that response dampens the PEM mechanism. Many symptoms remained, but they were things I could manage/tolerate. PEM is non-negotiable.

 

[Wishful]

PEM is non-negotiable.

Sure it is. Just offer it something spicy.

Okay, for some people maybe the effective treatment is something non-spicy, such as some bitter root or bark. It's a shame that we can't ask our ME/PEM what it would like in return for easing up.

 

[Gingergrrl]

I didn't consider the vaccine a prognosticator for my illness, but just something going wonky with my immune system as I had also developed allergies around this time and was having frequent mouth sores. I have noticed that many people seemed to have developed ME/CFS around 2009. So, maybe a spike in post-viral illness due to H1N1 or the vaccine completely ignored by the CDC?

Thank you for explaining and I had just wondered if you considered the H1N1 vaccine to be one of the triggers of your illness (among many other immune triggers). My illness followed a series of multiple immune triggers (although not a vaccine in my case).

It has been exactly four weeks since I entered the partial remission. It is over.

I am so sorry to hear this and was hoping that it would last for you this time .

I hope better explanation arises for the reaction. Since the vaccine triggers a massive immune reaction for me, it must be in that camp...

Do you mean that you now feel that you are in the camp (or sub-set) in which things that stimulate your immune system (like a vaccine) bring you partial or temporary remissions? Meaning the exact opposite of me in which things that suppress the immune system brought me remission?

I don't know if this makes sense but from talking to so many different people on different online platforms with multiple diagnoses (ME/CFS, POTS, MCAS, LEMS, other Autoimmune diseases, etc), it seems like people fall into two camps - those who improve with immune-suppressants and those who improve with immune-stimulants. Although I guess there are also immune-modulators that just bring the person's immune system back toward where it belongs (in either direction)?

 

[Marylib]

It has been exactly four weeks since I entered the partial remission. It is over. It was a fun ride and I really enjoyed myself while it lasted, even having house guests, going downtown, grocery shopping, driving, and even kayaking. The biggest pleasure was just being able to do things on the fly.

That must have been so much fun! Sorry it's over for you - at the moment. I always feel better after being able to run a fever. Maybe something will come up to keep that immune response activated for you. I keep thinking of those people who try bee venom therapy.

 

[zuperhero]

@Diwi9 Apologies if you have explained this elsewhere but (prior to the vaccine) did your illness present in the way that you were immuno-compromised or prone to getting infections? I know that the word "sub-groups" is not perfect but I'll use it here for lack of a better term.

There seems to be a sub-group in which the person has an immune system which is skewed toward immune deficiency and tests low for IgG Sub-Classes and high for viral titers and has flu-like symptoms, fevers, sore throats, swollen lymph nodes, etc. This sub-group would easily get colds, flu, and other infections when exposed.

Then the other sub-group would be someone who has an immune system that is skewed toward autoimmunity and allergic reactions. They would not test low for IgG sub-Classes, or have positive viral titers, and would often have a positive ANA Titer and test positive for many autoantibodies. They would not have flu-like symptoms and would not ever get a cold, flu, infection, and not get fevers. Most likely they would be skewed toward allergic reactions & anaphylaxis and/or MCAS (plus other various autoimmune diagnoses).

Regardless of what we label the illness, I am skewed toward the second group and have not had a traditional cold or flu since 2013 (and in spite of being directly exposed to many infections since 2013, I did not catch them). The treatments that led to my remission (and the treatments that I do best with in general) are immuno-suppressants. For me, I cannot do anything like a vaccine that is immuno-stimulatory b/c it could bring my autoimmunity out of remission (which took three years of infusions to fully put it into remission).

I was just curious if you were in the first sub-group that I mentioned vs. the second (at baseline prior to getting the vaccine)? I realize this is just an informal description and I hope that my question made sense!

hi by any chance, is there any discution about those sub-types in other topic, it seems really interesting

 

[Gingergrrl]

hi by any chance, is there any discution about those sub-types in other topic, it seems really interesting

I think there are many posts throughout PR that talk about sub-groups and when I mentioned it above, I did not mean it in any formal capacity. I just could not think of a better term to describe what I was asking re: immunodeficiency vs. autoimmunity (re: vaccine reactions). I hope that makes more sense!