And I respect your opinion I just disagree with it from some of the points outlined above and in autoimmune threads.
I had food poisoning once and I felt mental clarity and normal for once. Minor positive in libido as well
I donāt think soā¦if it did why did i almost got into ICU from covid instead of feeling awesome? Same with @Patrik82. Covid hit some of us pfs sufferers very severely. I donāt believe in autoimmunity. If this was the case why donāt people try some immunosuppresant like dexamethasone and get cured !! I donāt think Autoimmune disorders effect entire body. My body has been effected from head to toeā¦
Iām really not here to argue, just to share ideas with people who believe it is autoimmune. I work on the COVID floor and have seen this thing for the past year: COVID is a different animal. Def have thought about immunosuppressants since across all forums some people have gotten great results and others not so much. the hardest part is insurance and prescribing the right kind and dose. Some autoimmune diseases respond to nothing, others like statin induced myopathy with hmgcr antibodies require ridiculous amounts to achieve functional results. Anyway, I could be wrong just here to discuss with others who share a similar belief.
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Have you tried autoimmune diet? Thatās first line treatment.
Yes I have. Perhaps slightly better. If diet was all there was to it the autoimmunity would be long gone. Tried almost every diet known to man
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I just wanted to inform you that in January this year I started a strict autoimmune protocol. I wanted to do it for 90 days, but unfortunately I had to finish it after ā¦ 12 days. This was necessary because the AIP gave me very bad kidney pains, constipation and a huge bloating stomach (I have a lot of bloating on a daily basis, but during the AIP they got so big that when I exhaled the air my stomach was the same size. I look really strange, because Iām slim and I have a really big belly). Additionally, brain fog, headache, and anxiety increased. In fact, until now I havenāt gotten rid of all the effects of AIP.
Well, I donāt mean to say that our problem isnāt autoimmune or that AIP isnāt working, but the diet is not good for me at least (the best for me is a diet consisting of complex carbohydrates, vegetables, healthy fats, and a small amount of meat, eggs, nuts and lentils. For some reason I have an intolerance to fruit sugar. For the same reason I canāt eat a lot of carrots or parsley).
These are just a few words from me.
@hrihor Some of what you were eating on AIP are also bad for a lot of people with Pfs. Eg root vegetables and most fruits. I used to eat lots of fruit and veg I canāt go anywhere near any of them now because of the reasons youāve stated. Regardless I still believe part of this is autoimmune. The quick reactions to so many things are text book AI. Iāve had agressive R Arthritis from being a teenager and can feel some similarities in what happens. I also believe receptors are damaged in some of us, generally the ones who donāt improve or get worse. Unfortunately because Pfs is not recognised not many get to try powerful AI drugs so we donāt know. Those with food intolerances canāt push forward with an AIP or many other diets. One thought!! Pfs took years to blow me apart could it be because the strong AI drugs suppressed itās advancement. I always thought it was because I wasnāt as prone as many others and taking it on and off for a longtime caused my demise ie increasing damage and setting off periodic bombs. Interestingly now that Iām at my lowest possible point with Pfs Iām also not raking any AI drugs. To note even though I had agressive RA I never had high inflammatory markers. A common theme? I donāt think we can confidently rule out AI as a key player in this
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I personally crashed after having ebv, getting 6 vaccines for school, and then taking 5 alpha reductase inhibiting substances. I have another autoimmune condition oral lichen planus which is nothing and common but interesting. Just like another user on here, Iāve talked to a ton of people that developed this around stressful periods in their lives
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Also I believe receptors turn over and new ones are made every so often
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Correct which is where the epigenetic changes come into play ie why donāt we get better upon receptor renewal but are our immune systems attacking them in certain sufferers / situations. How has your oral lichen planus been since developing Pfs?
Did you test for active EBV?
Yeah I mean the whole body usually turns over over time I think and some autoimmune conditions keep attacking. I just take other things into account how people can tolerate it for years and then boom, one pill boom, stress boom, after stopping the substance for some people boom.
Idk man you can see no one knows, this is just what gives me the most peace of mind and makes the most sense to me
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Not recently in three or so years
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Speaking about stressā¦ This guy developed similar symptoms after moving to university ( I imagine this is stress triggered) He never took fin , which he states in his OP.
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I know, I also try to avoid fruit and some vegetables. As strange as it is since I have PFS, I donāt respond to anything the same. For example: I canāt eat broccoli for one year, so that later it wonāt cause any problems - and this is the case with almost any type of food (probably thatās why I canāt adjust the ideal diet).
I agree with you that PFS (one of the types of PFS?) May have something to do with autoimmunity. I wonder if this is the secret of the success of natural methods such as chi, cdnuts and others. Iām not a specialist, but maybe they raised androgen levels, and as a result their immune system was suppressed (and as you know, women are generally more likely than men to suffer from autoimmune diseases, including due to lower testosterone).
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Itās more than a complex puzzle!
I believe Cdnuts had temporary hormonal disregulation caused by fin then gradually recovered as many do. Diets and protocols can dampen down AI disorders but canāt cure them. I lived on an extreme diet for rheum most of my adult life. IE avoiding trigger foods. PFS is a different beast with many more facets.
I would give a lot to at least suppress PFS symptoms ā¦
I just wonder why (assuming that autoimmune diseases are not actually curable) so many of us PFS feel much better over time, and some even feel recovered. This is definitely above my scientific level.
Of course you are right, PFS is an especially difficult puzzle.
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perhaps there is something preventing recovery from taking place?
Systemic Inflammation from the gut? Leaky gut? Adrenal fatigue?
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I would give a lot to at least suppress PFS symptoms ā¦
Me too Iām only deterioratiing which is very worrying
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