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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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Search results

  1. Seven7

    Dr to evaluate a Teen for Dysautonomia / CFS taking new patients?

    Hello my folks, I am in desperate need of help. Do any of you know of a doctor that can evaluate a Teen for dysautonomia / CFS that is actually taking new patients (travel within US or money is not issue).
  2. Seven7

    List of "safe" and effective anti inflammatory meds/sups/treatments?

    they did a cytokine profile on me (not sure it helps but to tell me what I already knew, that my inflammatory cytokines are high) But helpful for the other doctors to know something wasn't right with my inmune system ( to take my case more seriously) also a lymphocyte subset. The issue is having...
  3. Seven7

    List of "safe" and effective anti inflammatory meds/sups/treatments?

    I did Celebrex very little Just bought like 30 and only took when my brain inflammation was intolerable back in the day. LDN definitely help with my intolerable body pain (I am not ussual in the sense they put me on 9mg as instead of the 4.5 most CFS do) but I get RA with colitis flares and is...
  4. Seven7

    List of "safe" and effective anti inflammatory meds/sups/treatments?

    Celebrex is the one listed by the experts (but I do not know the safety info). Curcumin (Turmetic), LDN, Fish Oil, were the ones that were given to me and I have been for years (i did stop fish oil after years. Turmetic I do as food.
  5. Seven7

    Poisoned by sleep, please help

    I take trazadone on and off. I try to get off it as much as I can, if I start waking up more than twice in a night then I restart, then I will stop and check if I am able to get off it so often. So I don't stay on it permanently, I try to take as little pills as possible to avoid side affects or...
  6. Seven7

    POLL: Do You Have a Sacral Dimple on Your Lower Back? (Can be Medically Significant, and May be Linked to ME/CFS)

    I do not have a dimple but have a very distintive line, that runs up a bit. DOes that mean anything?
  7. Seven7

    NIH: ME/CFS "PEM" Focus Group Study Results Published

    The point is you cannot fake your wall. VO2 max is a recognize wall (top) and used in sport medicine so doctors understand it. Is when your body switches from aerobic to anaerobic metabolism. This occurs when your lungs cannot put enough oxygen into the bloodstream to keep up with the demands...
  8. Seven7

    Are You Guys Able to Get PainKillers (Hydrocodone) It the only thing that Helps me

    My best things for pain Was not go over my AT. Avoid sugar and allergens And before I discovered all the above, l glutamine helped the most. I get a reaction to codine and any drug that touches autonomic function so if I take for pain. I get the shaking worst
  9. Seven7

    Poll: Have You Regretted any Reasonable Experimental Treatments?

    Mostly was trying random supplements without undertaking the different aspects of Cfs, once I did, I spent less money and targeted with a plan
  10. Seven7

    Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term

    Makes sense, as you add more strains, the disbiosis should solve, resulting on eventual balance and remission. I am working on balancing and adding new strains (I am fermenting my own vegetables, I have a batch on kefir water, Do Kimchi every day, Sourkrout on rotation.... Eventually I will do...
  11. Seven7

    Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term

    Well the relationship looks very clear to me. CFS has issues with immune system (some low, some imbalanced, Some overactive). Steroids lower immune system, So not a good idea long term. I actually feel worst when I do spinal shots! Short term like when I have a colitis flare, and use...
  12. Seven7

    VIP - Vasoactive intestinal Peptide

    Where did you buy it? I do great on peptides and want to try this one.
  13. Seven7

    Cured their ME/CFS, and went on to live their lives (35 Stories)

    I beg to defer, the issue in CFS is one of the best treatment is IVs for those with OI, by far the best!!! so using IV as placebo should not happen. I really did not understand that one!!!
  14. Seven7

    Can one PEM crash really make someone permanently worse or go from mild/moderate to severe?

    Yes has happened to me a few times trying to exercise. I have pushed really hard and set myself back permanently and never recover the points of energy I lost.
  15. Seven7

    Episodic Paralysis? low potassium may be an issue

    When I was researching my paralysis I came across this. Did not solve my issue. I think mine is an issue with cord compression and the other type due to sleep issues (I have 2 types). Is more like autonomic issue for me. But again we are all guessing at this point.
  16. Seven7

    Rep. Raskin introduces ME/CFS legislation sponsored by Solve M.E.

    I tried but nothing happened, no button or anything came up on my represetatives
  17. Seven7

    Anyone try green tea

    Green tea is a TH2 shifter, I had my immune system shifted (there was some talk about CFS being TH@ shifted) so even is great for some people, is bad for other TH2 shifted diseases. So it crashes me really bad
  18. Seven7

    Oxford peptides.

    I forgot to say. Not sure if I am stalled at the moment, but I started excersicing stronger, so not sure if that means I am better or same. Also pulling 12h work days!!! Plus all the other stuff I do.
  19. Seven7

    Oxford peptides.

    Yes still on it. If I stop I decline so I keep on them. By now I should of been in maintenance but still not there. I do skip a month here and there and seems to be ok. By far this has been the second best thing I tried. I will keep on it as long as I can
  20. Seven7

    Autonomic Dysfunction Specialist in NSW, Aust?

    Electrophisiologyst (in a cardiology practice) is the discipline that treats OI (OI is common on older folks).
  21. Seven7

    Swollen Lymph Nodes Poll

    I didn't get LN pain until year 10 maybe? way late in the illness
  22. Seven7

    Telemedicin Docs that will prescribe B12

    Here any general practitioner will do that (just ask them to test you for B12 if low they will prescribe). Also weight loss clinic do it, Also homeopathic natural clinics where they do Vit C IVs, Myers Cocktails... I have gotten shots even from the dermathologyst office (my labs are always low)...
  23. Seven7

    NK (Natural Killer) cell count

    They told me not to quit ( the opposite) the reason why I did it, is because when women cannot get pregnant because of high Nk, they give them fish oil. I was months away from my appointment when I read that and quit to ask her. But when I was my labs I decided not to take and do a lower...
  24. Seven7

    Excessive Vein Dilation?

    Yes, they give me midodrine for it. I have to adjust based on what my body is doing ( I will know by the passing out if I need more or not)
  25. Seven7

    NK (Natural Killer) cell count

    For me was quiting fish oil ( my doctor says should not matter so against medical advice) and definitely Nk cell activator from life extension. I also raised LDN at some point to 9mg a day ( for pain for doctors instructions). They all are consider to raise it ( and gosh oil to modulate it)...
  26. Seven7

    Pacing: can anyone recommend a heart rate monitor or app?

    I use alpha mio because is continuous, but unless you need it for excercise any of the cheaper ones are ok, also the polar chest strap are very accurate (i can't use because of big breast) but if that is not an issue for you, those are very good. Any fit bit should work if you do not need max...
  27. Seven7

    Does anyone get periodic random breaks in symptoms?

    No idea, doctor could not answer either. I imagine some hormone increase. I am sorry about your relapse and I hope you get better soon. I am trying to follow all the people that got better/cured and how they did it. Trying to find what works for me. I am very high functioning at this point.
  28. Seven7

    Does anyone get periodic random breaks in symptoms?

    Yes, I consider myself remitting relapsing. The last relapse left me in a more permanent cfs state. I used to get remissions with my periods. Now only get remissions with colds and viral infections ( I went kareoking with zica!!!) I used to ask myself how I will make it, we get better at...
  29. Seven7

    Recommendations For Adjustable Beds?

    I have one but I forgot the name, the only thing I can tell you if you have somebody else in the bed, I did not like the split mattres on top because we ended up both rolling into the hard edges, we ended up having to change it to a split base but one matress on top.
  30. Seven7

    NK (Natural Killer) cell count

    It can be both, just not as common (I know of other patient in same boat), Which I agree is more common to just have the Low activity and normal Count. FYI I had (or have haven't tested this year) low NK numbers as well as function, It is officially called Natural Killer cell dysfunction and...