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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. R

    Overmethylated= Ear Ringing and Histamine Intolerance?

    My tinnitus turned out to be from allergies. Dust mites in particular which are terrible him my humid climate. Also, common drugs can cause this so check out what you are taking for tinnitus side effects. For me it was Lovastatin & Neomycin - both are used in SIBO treatment.
  2. R

    Evusheld—Any side effects?

    And I received Evusheld A few days back. I felt ill the next day. It was a breath of fresh air, as I had about a two week reaction from three mRNA Covid shots. I took Tylenol, leuteolin,quercetin, Zyrtec A few days before, and afterword. I feel so relieved to have some protection from this devil.
  3. R

    Anyone live in a townhouse?

    For me, carrying laundry up and down the stairs wears me out. Like you I am trying to move but will be avoiding as many stairs as possible.I want to be an ex townhouse owner.
  4. R

    Does anyone have any suggestions for nasal congestion & runniness?

    FLONASE nasal spray twice a day should help. It sounds like allergy testing Would be useful, if possible. I’ve had Pots for many years, but diagnosed with allergies and nasal symptoms only recently.
  5. R

    My first visit to see Dr Klimas and team (Success in the End)

    Is there harm in applying for IVIG from an insurance standpoint? It helps in autoimmunity and low IGG. The dose is more powerful in Auto. vs low IGG. It could be given by a nurse at home at a slow rate with a lower dose. I'm sorry you are in so much pain.
  6. R

    Alternative ways to get extra potassium?

    Carbs help keep potassium in your cells. Salt competes with potassium, but most of us that. Carnovor diets push potassium out. So, is the carnivore diet really helping your autoimmune symptoms? Simple carbs tend to be easily digested and don't ferment in the gut. Think white bread. Oh...
  7. R

    NIH Intramural me/cfs study questions

    Using the wheelchair service that all airlines provide is a MUST. I set this up ahead of time. They'll have an attendant there when you land. Bring a can to fill with water after going through security. Thanks for participating!
  8. R

    Kava kava

    Consumer Reports says it's not safe, I believe.
  9. R

    Basic question about getting out of bed!

    I have POTS too. I bought huge glasses, really cylindrical vases at a dollar store. I use these throughout the day to keep hydrated. Easier than refilling all the time. In the morning I drink 2 of these before moving much. I take POTS meds before I get out of bed, then wait about 10...
  10. R

    My first visit to see Dr Klimas and team (Success in the End)

    I hope you are more comfortable in your own home/bed. You are so intelligent, can help inform your doctors for a quicker diagnosis. May relief come soon.
  11. R

    My first visit to see Dr Klimas and team (Success in the End)

    spiculated nodule of GI https://www.google.com/search?client=firefox-b-1-d&ei=ROu0XJrGAcGV_Qb0rLzQCg&q=spiculated+nodule+gi&oq=spiculated+nodule+gi&gs_l=psy-ab.3...46471.47741..48314...0.0..0.199.548.0j3......0....1..gws-wiz.......0i71j0j0i67j0i22i30.IxFY0gvvtWo So, it could be anything, but...
  12. R

    The Solve ME/CFS Initiiative Conference is about to start in a few minutes

    Hate that I missed the Klimas talk. Anyone have key points the medical presentation of advocacy was about?
  13. R

    Learn About the Newest OMF-funded Research Center at Uppsala Univ, Sweden

    It sounds very impressive. Great write-up. Another accomplishment for OMF.
  14. R

    My first visit to see Dr Klimas and team (Success in the End)

    Thanks you, @Belbyr, for the lab results. What lab does she use?
  15. R

    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    I agree that these oils are great and easier to use than absorbing a pill in the mouth or inj. Strong potassium need right afterword but that got better when I added B1 and B2. I used the combo Greg suggests. Think I'll add these minerals too, Hip. Thank you. My neurologist complained that my...
  16. R

    Is Nevada a sanctuary state for ME? And what does that mean?

    I investigated moving there 5 years ago and learned PRIVATE insurers must cover experimental drugs for ME/CFS, Ampligen. I don't have private insurance. NV state law. I have no knowledge of current Ampligen info. At the time, Peterson would see you if he felt he could help you after reviewing...
  17. R

    Heart Rate Monitor Watch with Audible Alarm

    You can only program the apple 4 in 10 point increments, as in alarm at 90,100, 110 beats. Charge every day too. This is how it would be for me to track sleep too. I read one might charge it resting in the evening.
  18. R

    Bad experience with keto

    I had to quit keto as it raised my blood pressure noticably. I was on it a month. I still love the organic sunflower oil it had me discover. The diet did kill off some SIBO gut bugs though.
  19. R

    Young, Unemployed and Scared: A Trilogy! Any Recommendations?

    Pushing through is pushing down on your delicate, ill body. You will be rewarded with worse health. Is career counseling available? In the past, this has helped me identify what I'm good at, what are my weaknesses. With many teachers in my family, a teacher's aid for little children would...
  20. R

    What does low homocysteine mean

    I've never figured out how to do proper methylation for my illness. As in my energy has never improved, so I don't know what the heck is going on. 23 and me showed several gene kinks and Klimas asked me to be in her recent folate trial, but I declined as I have this low homocysteine problem...
  21. R

    What does low homocysteine mean

    Mine was quite low and I discovered that methylfolate reduces homocysteine. So I don't take my 400mcg daily.
  22. R

    Hear Ron Davis' IIMEC 13 Presentation (video)

    Great presentation. Made me hopeful even more than usual.
  23. R

    Chronic fatigue syndrome patients have alterations in their oral microbiome composition (PLoS ONE)

    It is my understanding that sanitizing mouthwash can ruin the good bacteria in the gut as does hand sanitizer.
  24. R

    Interpreting genova comprehensive stool test

    I remember it helped constipation, but after the 60 pills supply, I just don't know. It was suggested years ago by Dr Cheney.
  25. R

    ME/CFS alert latest episode (exercise intolerance)

    For POTS, I was given propranolol first. Then I added Mestinon/py. a quarter increase at a time as my body brain adjusted. I'm sure I was wearing my Polar heart monitor to see benefit or not. I was hesitant to up the last of Mestinon to a full pill, but an OI specialist encouraged me as the...
  26. R

    Interpreting genova comprehensive stool test

    I ordered Mutaflor to the US in fall of 2016, so I think it can be had. It must be shipped cold so I waited past summer to do this. It was sent with ice packs. Sorry, I can't find the source.
  27. R

    New York, New York! The State of New York Officially Gets It About ME/CFS

    May be the best. It seems superior to CDC description, no? A couple of months since I've read it.
  28. R

    2016 Ramsay: Research Team 1 Update February 22, 2018

    Did we ever know how many scans he needed on this project?