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    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.

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  1. W

    Substantial improvement with (strange) dietary adjustments

    I actually logged in just to say how bad red peppers (probably all peppers) are. All nightshades might have to be avoided, but red peppers seem to be the worst. It seems to be worse when they are dried, because symptoms are stronger with paprika powder or with peppers that are a bit older and...
  2. W

    Substantial improvement with (strange) dietary adjustments

    I think so, too, because when I eat pure lecithin, which is basically choline and fat only, no protein, no carbs, nothing happens. When I eat lecithin or a choline supplement (citicoline) with any other food I tried, it strongly worsens me. Something is happening in the gut, I suspect the...
  3. W

    Substantial improvement with (strange) dietary adjustments

    That's fascinating because I had a similar experience with nitric oxide. Oral nitroglycerin, which is absorbed in the mouth didn't do much worsening, but Isosorbiddibnitrate which is swallowed and slow-release cause horrible crashes for several days. Both release nitric oxide in the body, but...
  4. W

    Substantial improvement with (strange) dietary adjustments

    Hello Dysfunktion, Thank you so much for this fascinating report. There are so many similarities, at least in principle. Other triggers in your case, but a similar pattern. My first question is when have you last checked your thyroid function (including all autoimmune antibodies for...
  5. W

    Substantial improvement with (strange) dietary adjustments

    It just hit me that what I may have done wrong in the past weeks is adding more fat to the mushrooms. Musrooms contain choline, and I always suspected that choline plus fat causes a problem (which may also explein why cheese causes fewer problems than eggs). I willl check that.
  6. W

    Substantial improvement with (strange) dietary adjustments

    Absolutely, Wishful, I have been thinking about that. However, when I had broad-spectrum high dose antibiotic therapy (Ampicillin/Sulbactam/Erythromycin) there was hardly any change, neither positive nor negative, so my primary hypothesis is that some harmful compound builds up in the body and...
  7. W

    Substantial improvement with (strange) dietary adjustments

    What still eludes me (if it exists at all) is a state in which my symptoms slowly get better and better, just like they steadily got worse and worse before I did the diet thing. Is there a diet where I could attain that state? It feels like such a state may exist, but it's impossible to know...
  8. W

    Substantial improvement with (strange) dietary adjustments

    Thanks so much for the suggestion. I have taken lithium as a supplement once. I forgot the dose, but it was certainly a higher dose than I could get from the nightshades. I would be surprised if the supplement had less lithium than a few eggplants. If I remember correctly, it did nothing...
  9. W

    Substantial improvement with (strange) dietary adjustments

    Very interesting study and I totally agree that it is very easy to get these things wrong, but unlike the rats who didn't know they were part of an experiment and didn't understand what is going on, what I can luckily do is to make my own experiment. I tried some of these foods over and over and...
  10. W

    Substantial improvement with (strange) dietary adjustments

    "I wish I hadn't done..." I have those as well. All the medications I tried which cost so much money and, more importantly, time. But at the time, it was right to try because I had nothing else I could have done and I worsened steadily. I felt like I had to try everything that's out there. Of...
  11. W

    Substantial improvement with (strange) dietary adjustments

    Hello Aidan, thank you so much for your response and sorry for responding so late, I wasn't logged in in the past 6 weeks so I am very sorry I missed your response until today. It is very interesting that you found a similar pattern that some foods make you worse when consumed repeatedly...
  12. W

    Substantial improvement with (strange) dietary adjustments

    Just a quick update. I have made no further progress and even slid a bit backward, mainly because I found out new things and I am trying a lot new stuff some of which doesn't work and makes me worse. A few of the latest findings: (1) Some foods seem to have an accumulating effect over a long...
  13. W

    Substantial improvement with (strange) dietary adjustments

    Again, I think your case is very different than mine, so important to keep that in mind, but I personally have made the same observation. For many years, I couldn't link specific foods to symptom flares. It all seemed random and I could detect no pattern at all. Today, I am certain this is...
  14. W

    Substantial improvement with (strange) dietary adjustments

    Hey there, many thanks for the comment, I appreciate it. I think my problem is mainly because (1) potatos are nightshades which it seems I really must avoid completely as a group with the exception of maybe a tomato here and there, and (2) because I ate too much of it and breached the 100g...
  15. W

    Substantial improvement with (strange) dietary adjustments

    Maybe just a quick recap what my rules are currently (knowing they will almost certainly change substantially again going forward): *Avoid all animal products, maybe with the exception of occasional cheese *Avoid all high-arsenic foods (esp. rice, but also apples, pears, grapes and in the US...
  16. W

    Substantial improvement with (strange) dietary adjustments

    I also want to take occasion to share my latest updates on the diet. *It currently looks like I have been wrong all along about oleic/monounsaturated fatty acids. It appears (at least so far) that I can tolerate high-oleic refined sunflower oil. The problem with oil in general seems to be only...
  17. W

    Substantial improvement with (strange) dietary adjustments

    Hello and Happy New Year to everyone! The past year was the first year in which I systematically followed the dietary approach after I had suspected for many years that dietary factors play a huge role in my case, but thought it was all too weird to make sense and therefore never followed the...
  18. W

    Substantial improvement with (strange) dietary adjustments

    So things that I currently try to limit or avoid and see how it goes: - Carb overload (100g max per meal, fiber not included) - Choline - Omega 3 - Oxalic acid - Allium and brassica family vegetables (onion and cabbage), can possibly wash off harmful compounds. - Hot spices, esp. pepper, chili...
  19. W

    Substantial improvement with (strange) dietary adjustments

    Exactly, that's the point. I am now avoiding all high-Omega 3 foods and also large amounts of foods that contain some Omega 3 but in higher quantities it adds up. For instance, olive oil contains about 1% Omega 3, which is still 0.1g for about a tablespoon (10g), so a few table spoons here and...
  20. W

    Substantial improvement with (strange) dietary adjustments

    In the past weeks, I have found out the following: 1. Omega 3 intake must be limited (for some weird reason because they are actually very healthy). Foods that are not known to contain a lot of Omega 3 can still have substantial amounts when consumed regularly. 100g of cheese has about 0.4...
  21. W

    Substantial improvement with (strange) dietary adjustments

    Tried them, no effect in my case. But so glad to hear they helped you!
  22. W

    Substantial improvement with (strange) dietary adjustments

    I have also found out that it is absolutely essential to limit both overall carb intake, but also individual meal size especially when it comes to carbs. I have found that I can tolerate only about 100g of carbs per meal (starch and sugar, not sure to what extent fiber counts). So 150g of dry...
  23. W

    Substantial improvement with (strange) dietary adjustments

    Hey y'all, thanks for the comments and sorry for responding late. I have been trying a lot of things and haven't logged in for a while, but here is another update.
  24. W

    Substantial improvement with (strange) dietary adjustments

    I think the problem with potatos is that they contain some oxalate (peeled potatos aren't that high actually) and they are also relatively high in lysine for a plant food (containing up to 0.2g per 100g baked potato). Since I eat the potatos plain, with nothing else, I have to eat over 2 pounds...
  25. W

    Substantial improvement with (strange) dietary adjustments

    I think I have made an important observation regarding oxalate. First, french fries, vor some reason, appear to be very high in oxalates even with the skin removed. Potatos in general have quite a bit, cooking in copious amounts of water seems to remove some of it, but even after that, it's...
  26. W

    Distinguishing features of Long COVID identified through immune profiling

    I strongly suspect that many cases of CFS/ME was "Long Covid" caused by the old endemic coronaviruses. I suspect my own illness to have that cause. It appeared after an infection in the summer, which might very well have been a coronavirus, which does not have a pronounced seasonal pattern like...
  27. W

    Distinguishing features of Long COVID identified through immune profiling

    Possible biomarkers found in the blood. If confirmed and replicated, this is potentially hugely important to prove this isn't psychological or psychosomatic. https://www.nature.com/articles/s41586-023-06651-y
  28. W

    Substantial improvement with (strange) dietary adjustments

    Hey there! Quick update: I haven't improved further over the course of the summer, but I think this might be because I had too much sun exposure (vitamin D). I think my vitamin D must not exceed 30-35, otherwise I can no longer improve. I will have to see in the fall when levels slowly drop if...
  29. W

    Substantial improvement with (strange) dietary adjustments

    I think mushrooms may be causing the hypothyroid effect even when consumed in the evening. The problem seems to be if they are consumed on consecutive days. I will limit it to 2 pounds of mushrooms every other day or every third day. I am not sure if this effect only occurs during pollen season...