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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. Clerner

    "Swish & Spit" AVProtocol

    Not more AV meds. I was on valtrex for 6 months, and famvir b4 the 6 mo. of Valcyclovir. Don't know if it's making a difference, esp. Swish/spit. I might go on it as needed. You should start having more energy and less pain from ldn by now. But, i had 4 viruses and 4 bacterial infections and low...
  2. Clerner

    Anemia only or something else?

    Good idea. I have thought about that.
  3. Clerner

    Anemia only or something else?

    So far so good! But I take magnesium oxide every night to help anyway. Plus, floradix has B12 and b6.
  4. Clerner

    Anemia only or something else?

    Hum... Wonder why. Might be B12 anemia instead. I'm learning difference between iron deficiency anemia and pernicious anemia. You can have both leading to anemia.
  5. Clerner

    Anemia only or something else?

    Great. Thanks for the info!
  6. Clerner

    Anemia only or something else?

    Thanks, just started floradix too! Hope it works. Says it doesn't constipate, but does it?
  7. Clerner

    Anemia only or something else?

    Total iron serum level is 26 (range 60-170) CBC: RBC 3.82 (3.8-5.10) Hemoglobin 9.8 (11.7-15.5) Hematocrit 31.8% (35-45%) MCH 25.7 (27-33) MCHC 30.8 (32-36) Any info would be appreciated!
  8. Clerner

    Larrea tridentada for ebv?

    Aww, that explains it. Thanks!
  9. Clerner

    Larrea tridentada for ebv?

    Thanks, I entered it and couldn't find anything.
  10. Clerner

    Larrea tridentada for ebv?

    Anyone tried this natural supplement for ebv? Option? Experiences?
  11. Clerner

    Low done naltrexone affect test results?

    Yep, it's the ldn. If you Google it lots of people complain about hair loss on different forums.
  12. Clerner

    Low done naltrexone affect test results?

    @daisybell I stopped my 2nd 4.5 ldn dose in pm on July 10th because I had so much hair falling out!! I am now only taking 4.5. But, now I am relapsing? Pain increasing, exhaustion, migraine /nausea, weakness, fast heart beat, pots?, trouble breathing from exertion. I don't know if it related to...
  13. Clerner

    Low done naltrexone affect test results?

    Look what I found : and LDN essentially blocks that cascade by blocking the receptors on those microglial cells. This probably explains why in some of the studies so far LDN has been shown to reduce something called erythrocyte sedimentation rate, or ESR, which is an inflammatory marker that’s...
  14. Clerner

    Can OI/POTS disappear then reappear?

    I had been feeling well enough to start considering going back to work part time. I really had forgotten about the cyclical nature and possible relapses!
  15. Clerner

    Can OI/POTS disappear then reappear?

    True. At one point I got sicker and found out the ebv igg had increased quite a bit since my first acute attack. Plus,ebv EA, and EA-diffuse are still high 1 year and 7 mo. later. Have not checked ebv level since end of Feb.
  16. Clerner

    Can OI/POTS disappear then reappear?

    Guess it's pots, not OI . Pounding, fast pulse. Blood pressure was 138/70. It usually runs low like 129.
  17. Clerner

    Can OI/POTS disappear then reappear?

    Yes, I feel like I'm relapsing after feeling relatively good for a while. Pain, more exhaustion, migraines and pots with fasting, pounding heart beat are all coming back.
  18. Clerner

    Using ATP profile test? Disability?

    Thanks! Looking to prove the amount of fatigue I have. Hoping someone can tell me they sent this test result to disability and was approved.
  19. Clerner

    Using ATP profile test? Disability?

    Has anyone gotten this test (ATP profile)? Does it help prove the fatigue in order to get disability? Is this consideredition a Biomarker of cfs that will prove cfs to disability? Thanks for any information!
  20. Clerner

    Can OI/POTS disappear then reappear?

    Wow! Thought I was going crazy. Trouble breathing, slight dizziness, heart pounding and sweating! The nurse noticed my pounding heart just from walking and being weighed. It had gone away for quite some time. Thanks! Will try to do the least invasive POTS testing.
  21. Clerner

    Can OI/POTS disappear then reappear?

    I had OI/pots at the beginning of my illness for a long time. It then disappeared for about 6 months, and now it is back. I am also more exhausted, and starting to have migrines. I know cfs is cyclical, but can pots/OI go away then come back? Thanks for any info.!
  22. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    What type of dr does this Qsart testing?
  23. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    Great, thanks for that testing info. I am having OI/pots symptoms again. Went to dr. today and my heart rate/pulse was sky high just from walking. It had disappeared for a while ( had it at beginning of illness) and now seems to be back! I did already give all my coxsackievirus results but was...
  24. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    Wonder if anyone on this forum has gotten disability being younger And with a Master's degree?
  25. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    @KitCat I think part of my disadvantage is my age of 45 and education- I have a Master's degree. They say I can do another job. Frustrating!
  26. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    Great idea on making a list, and way to approach my doctor!
  27. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    @KitCat just got appt with lawyer for Aug 10th. They specialize in cfs and sound very knowledgeable. They said there are ways to prove pain and fatigue. I will keep you posted.
  28. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    So! I did look at rfc and it asks for results. All my viruses and infections are listed. But I did not tell about low nk, hypercoagulation, or high c4a showing inflammation.
  29. Clerner

    Applying for Social Security Disability (SSI/SSDI)

    Unfortunately, there is no place on the rfc that asks to list any tests. I don't know how to get a hold of the fatigue report. Guess I need to ask. My doctor specialist had me fill out rfc with the help of his nurse, and he just signed. So I don't know if we filled it out correctly! Plus I only...