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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. minkeygirl

    Adrenal fatigue - saliva test results

    I just looked at my saliva cortisol tests earlier. I think you get a better picture doing it 4 times. My morning is very low and night is high but normal, which could explain why I have problems getting to sleep. I think just getting one time done doesn't give you the full picture. I...
  2. minkeygirl

    Valcyte dangers

    @Applewalks sounds scary for sure but no one here has your medical records and although people here are knowlegable, their advice should not take the place of your treating physicians. I had no problems after almost a year on Valcyte and many other's here have had success with it. Discuss...
  3. minkeygirl

    LDN: Should I expect worse nighttime pain?

    @NilaJones What changed everything for me is when I changed the time of my dose. It's supposed to before an endorphin rush. Mine must be before 8 a.m but after 4 a.m. Even today I'm sleep deprived and feel pretty bad but I imagine without the LDN it'd be much worse.
  4. minkeygirl

    Report in Mail on new suicide and ME? study by King's College

    @Countrygirl all they have to do is look at the memorial thread to know that's true
  5. minkeygirl

    Stroke to the Pons area; psoriasis.

    @guitarmary Here's a thread on DMSO fyi http://forums.phoenixrising.me/index.php?threads/what-is-dmso.40722/#post-655304
  6. minkeygirl

    LDN: Should I expect worse nighttime pain?

    When I was at 1.5 I had a significant reduction in pain. It was amazing. Then I raised to 2 mgs and my pain was horrible. I reduced bacd down to 1.5 mgs and today is the best day I've had in awhile. The thing that made the huge difference for me was when I took it. between 4 and 5:30 am...
  7. minkeygirl

    Immune levels

    @RYO He was a dumb ass for several reasons. First he wanted me to have a cognitive assessment before and during to determine if IVIG was working. I contacted the Primary Deficiency foundation and they had never heard of that and suggested I have them contact him. He also wanted me to have...
  8. minkeygirl

    Mayo Researchers Identify New Borrelia Species that Causes Lyme Disease

    http://newsnetwork.mayoclinic.org/discussion/mayo-researchers-identify-new-borrelia-species-that-causes-lyme-disease/?linkId=21050440
  9. minkeygirl

    Immune levels

    @cb2. I appreciate your interest but please stop. Sometimes feeling crap is just feeling crap.
  10. minkeygirl

    goodrx.com

    @Mij That sight is a price comparison place that I've seen but didn't know about the coupons. What I found out is that many pharmacies, especially independent ones, are more likely to work with you on price if you pay cash. It is shocking to me that people are paying $100 for one month. When...
  11. minkeygirl

    Preparing LDN yourself

    Mine has the expiration date on the bottle. It's usually a few years. It also makes a difference that they are stored correctly.
  12. minkeygirl

    Immune levels

    @cb2 I had an immediate benefit from LDN when I figured out the correct time to take it. It was huge. Energy, mental clarity, pain much less. I felt almost human. The last 2 days have not been so good. I'm hoping it is PEM. I'm also going to lower my dose. I know some people that did...
  13. minkeygirl

    Baicalin - sleep, antiviral, neuropathic pain but dependence?

    Anything with multiple benefits is good by me but for me, the sleep aspect right now is what I'm looking for. There is a difference, if I'm reading this correctly, between Baicalein and Baicalin (see my first post for the link with all the info. "Baicalein appears to be a GABAA receptor...
  14. minkeygirl

    Immune levels

    @cb2 I have drawers and cabinets full of crap I tried and can't take. A well friend asked my why I keep them. lol Well, cuz I paid, and I always try things later to see if something has changed. Or I pass them on to someone else who might want to try them. I every once in a while you hit...
  15. minkeygirl

    Preparing LDN yourself

    @PatJ Thanks. I'm a creature of habit. I eat the same thing every day, go to sleep the same time. Time everything at the same time. I have no issues with the things you posted from Chris Kresser. LDN seems to hugely help my inflammation so for me I think this has more to do with how much...
  16. minkeygirl

    Preparing LDN yourself

    @PatJ I also notice I don't get the same results every day, even when I take it at the same time. I knew within an hour this morning. I had to drag myself out of bed and the pain started almost immediately. It helps make PEM not so miserable It's also interesting to know about your higher...
  17. minkeygirl

    Baicalin - sleep, antiviral, neuropathic pain but dependence?

    @JES i was wondering about tolerance. I'm not going to take it very night just to be safe @Little Bluestem two nights ago I took about 500 mgs sublingual at 10 pm. At 10:30 I couldn't keep my eyes open. Slept straight through til 4am. Then slept til 5:30 when I woke to take LDN. Since I...
  18. minkeygirl

    Immune levels

    @cb2 I can't tolerate caffeine at all. I don't do well on anything that stimulates although about 10 years ago I loved focalin. Crashing and burning is not fun. Lol I looked into kpax awhile ago. i think i ruled it out because I don't like to take sups that have a bunch of ingredients in...
  19. minkeygirl

    Immune levels

    @cb2 Yes I see Dr. Vincent first. He'll decide which way to go. As far as I know I don't have Lyme but I am positive IgM for mycoplasma and HHV6. I have pictures of me hugging deer when I was a kid so that's why I'm hoping the immuno will run labs for co-infections and whatever else he deems...
  20. minkeygirl

    Preparing LDN yourself

    @Firefly_ I did it! Worked great. I looked at 2 1/2 hours and it was done! Thanks for the suggestion.
  21. minkeygirl

    Baicalin - sleep, antiviral, neuropathic pain but dependence?

    I got this information from a reliable source who spoke to their herbalist about Baicalin. They are ok with me posting this. I do think there could be tolerance issues but? I took 500 mgs last night, was out in 1/2 hour and slept 6 hours straight "I asked the doc about Chinese Skullcap and...
  22. minkeygirl

    Immune levels

    I was being kind calling him a dumb ass. He does research on asthma. Even if he did give me tbe IVIG, he would have no idea how to cater it to my ME. I shudder to think how he could have messed me up with his ignorance about ME. I don't know if the new guy uses interferon any more. Back the...
  23. minkeygirl

    Abstract: Does CFS Have a neurological origin?

    Does chronic fatigue syndrome have a neurological origin? Barnden, Leighton "Abstract: Chronic Fatigue Syndrome (CFS) is distinguished by a persistent malaise and lethargy that physical or mental exertion exacerbates for a period of several days. Sufferers can identify a clear-cut beginning...
  24. minkeygirl

    Immune levels

    My hmo had no good immunologists. The first one just wanted to give me more vaccines. The 2nd guy a dumbass. Wanted to make sure my symptoms were physiological. Like I could think myself into an immune deficiency. Neither had a clue about ME. That's why I switched to original medicare. So I...
  25. minkeygirl

    Immune levels

    @cb2 I think there might be some old threads where @Ema talks about this stuff. Yes on the CVID. That is one of the diagnosis that will get you immunoglobulin. I saw an "immunologist" (allergist) who would Rx it for me if I had a psych consult first. I refused. I'm seeing a new clinical...
  26. minkeygirl

    ER visit and severe back pain

    We can't offer medical advice. I recommend you see your primary care provider or go back to the ER.
  27. minkeygirl

    Anybody on Seroquel for sleep?

    I absolutely will not sleep if I don't initate sleep with a benzo. I use 50 mgs seroquel as an add on to sustain sleep. I have no problems with it but alone it wouldn't do anything for me.
  28. minkeygirl

    Medi-cal (California) Eligibility criteria for under 64 yrs old

    It makes zero sense to me that people who are disabled and on a fixed income have to meet a stricter criteria than able bodied people who have the capacity to earn money and are not restricted by illness Seems to be they have it ass backwards or there should be no differention at all. Obama...
  29. minkeygirl

    Immune levels

    Low subset 1 and 3 and low total immunoglobulin indicates CVIG. I think, but can't remember if low IgA is used for that diagnosis.
  30. minkeygirl

    Medi-cal (California) Eligibility criteria for under 64 yrs old

    This is what I found out. If you are under 64 you are eligible for Medi-cal based on income. If however you are disabled, that cancels out any other options and your eligibility is based on assets. So if you are an able bodied person, under 64 who can earn money and that money earned and...