• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. L

    Dr Conley Flint Michigan

    The problem with Michigan is everyone treats me like a drug seeking patient. I've not been treated that way and my pharmacy record doesn't bear that out. I've contact 2 functional medicine Drs in MI. They will see me for pricey supplements which I do, and alternative medicine which I've done...
  2. L

    Dr Conley Flint Michigan

    Please, any advice on providers? I tried two" functional medicine" Drs since Oct, and both were weird... Just wanted amalgams removed, no scripts, etc I called Dr Conley's office out of desperation. I see a thread where no one had a good experience. I've been to those kind of places. I simply...
  3. L

    Has anyone been formally dismissed from a medical practice?

    I wrote to a law firm that advertised for Patient Abandonment. They wrote back and said they decided not to take my case. If I was in a coma or dead because of neglect, my relatives might get a settlement, IF they even would bother. They wouldn't. They'd be glad it was over. Most Chronically...
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    Has anyone been formally dismissed from a medical practice?

  5. L

    Has anyone been formally dismissed from a medical practice?

    That was the point of the call. I cannot contact the clinic. The Dr did say, he thought I wouldn't come back because " you didn't like me"...? Huh. Then he said he couldn't help me. I'm sure the MAs complaining was the convenient excuse. The Dr clearly didn't want me as a patient.
  6. L

    Has anyone been formally dismissed from a medical practice?

    I'm seeing a counselor but my fifty minutes runs out before we get anywhere. It's All I can do to drive in to see her at 5 pm once a week. There aren't support groups. I don't think anyone in this miserable state has CFS... Even the University of Michigan, four hours away, has nothing even for...
  7. L

    Has anyone been formally dismissed from a medical practice?

    This has NOT helped my stress levels or the huge worsening of symptoms since the end of November. I thought I finally found an internist who took me semi seriously, since I have many MS symptoms. I went in for my first visit, stating I " was willing to wean off clonazepam slowly". He did a...
  8. L

    Surprising (Scary!) results from new gut pathogens GI test

    @Learner1 ... Every time I read your posts I wish I could find a provider like yours. I didn't realize how much it helped having a doctor who read research in the NW, till I lost him . Now that I live in a " medical desert" I can't convey how much UNNECESSARY STRESS there is- it's a Full Time...
  9. L

    Surprising (Scary!) results from new gut pathogens GI test

    I WHOLEHEARTEDLY Concur. The BEST Drs I worked with , now are getting certified in Functional Medicine. The bulk of Drs 40 and under want a 9-5 job that's no more challenging than being an accountant all day. I'm not being insulting... This came from discussions with Drs 50-60 who cannot find...
  10. L

    Kenny De Meirleir treatment

    I live in Michigan. Independent testing 10 years ago showed among symptomatic and asymptomatic people around the Great Lakes ( Minnesota, Wisconsin, Michigan, Ontario Canada, ) 90% tested positive on highly specific borellia Western Blot testing. The study is on the ILADS site. People are...
  11. L

    Kenny De Meirleir treatment

    @bostjan01 I was sick so long and finally got (3 sets) of definitive Borrelia tests . My clinical picture fit ( acted like MS not FM, etc). I lived in two high Lyme areas since birth ( great lakes and Sweden's highest Lyme county). Many my age from school were getting sick around 40 . However...
  12. L

    Surprising (Scary!) results from new gut pathogens GI test

    @Rich D ... Yeah. Ok. No one in the Great Lakes area seems to have anyone. They are all East Coast, some in the South ( Atlanta and FL) or West Coast. I'm glad you have a good Dr. I know what a difference it makes- just having someone who believes you, isn't trying to get rich off your illness...
  13. L

    Surprising (Scary!) results from new gut pathogens GI test

    I'm sorry but I was trained in very good allopathic medicine. What Endocrinology, GI Specialists, Immunologists , et Al won't " treat" or Deem " marginal" amounts to treating individuals on large population ranges of normal; not the individual patient and response. ( t.e. Elimination of signs /...
  14. L

    Surprising (Scary!) results from new gut pathogens GI test

    @Rich D good thread! #1: I'm curious where you're getting good alternative medicine? ( You can pm me if you'd rather) #2: Crypto has been a huge problem in many cities. Whipworm is not that uncommon- it's just no one looks! #3: I also had a serious reaction to an antibiotic , Chloramphenicol-...
  15. L

    Research on ME/CFS and Pregnancy?

    @RebeccaRe All I can add his my experience. ( Btw, before I start, I turned out to have had lifelong Lyme disease and EBV since age 4, positive CMV probably from patients. Had all the viruses as a child including both types of measles and chicken pox. My baby was perfect) I had CFS before it...
  16. L

    Do you have ME/CFS with or without sore throat?

    DISCLAIMER: I have BAD MCS. I get a sore throat from anything perfumed, in about a minute. Also paints, propane, some cooking smells, exhaust on roads,,,, so I gets lots of them. I need a bubble in the desert.
  17. L

    Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome

    This is how aricept works in dementia. Works for any short term memory loss that's not from obvious causes- pulling all nighter in college, alcohol abuse, etc.
  18. L

    Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome

    Because lack of brain acetylcholine is Associated with dementia , or just memory loss,, and I take two anticholinergics ( even daily allergy meds increase brain degeneration risk)... I've been taking either Citicholine, or alpha gpc for 9 months or so. I'm too tired to read this entire thread...
  19. L

    hsCRP

    I'm taking curcumin and antioxidants that reduce cns inflammation, but noted no change over past year. Haven't tolerated ibuprofen for years, but can now. I'm taking it to ( hopefully) take the edge off 4-5 times a week. Long term is risky, I guess. Haven't noticed any change. No change with...
  20. L

    POTS mediated by hypertension?

    I don't have too much cortisol or adrenaline. Sometimes Pseudoephedrine helps. I get very dizzy but it's true vertigo. I've tried to relate my symptoms to something I did or ate. I can't. I'm really too exhausted at 60 after 20 years researching stuff to do much more- and Im out if money. If...
  21. L

    hsCRP

    Someone tested mine, it's high. Any experience folks? All I can find is in relation to Angina/MI IN OTHERWISE HEALTHY ADULTS. I've known it was a CV test for decades. I find regulate CRP is always elevated in Autoimmune/ chronic inflammation, so I'm not surprised. Can't find hsCRP value...
  22. L

    POTS mediated by hypertension?

    Yes. Elevates ACE without any thing that normally triggers ACE, like hemorrhage.
  23. L

    Any one feel worse with Inositol?

    @Sancar thanks. It's been 20 years of trying $$$ supplements, different regimens. I do take everything you mentioned with it though. I take R alpha lipoic acid, acetyl l carnatine, + other Vit/ min / aminos. Things like OQQ, mitochondrial support stuff. It goes on and one, maybe$200+ things a...
  24. L

    POTS mediated by hypertension?

    Anyone know if high blood pressure alleviates POTS? I had it seriously as a child , teen and in my 20s. I'm 60, and noticed this stopped happening in my 40s. I attributed it to moderate weight gain. Anyway- my point: I just sent my raw DNA data to a medical company. I was SURPRISED to find...
  25. L

    IP6?

    Has anyone felt worse rather than better after starting it?
  26. L

    Any one feel worse with Inositol?

    I just ordered some, have taken maybe 10 days. I'm wondering if I'm worse from it? So hard to know why one feels worse and flu like. I'm leery of things that activate my immune system. ButI Ihad read positive things about Inositol and IP6 in CFS. I'm not seeing a knowledge Dr who would...
  27. L

    Pesticide activated de-iodinase type 3 enzymes (DIO3) and produce reverse Triiodothyronine (rT3)

    @pattismith I'm afraid you won't find rT3 studies. Some Medical Drs know it's real, studies show post cardiac surgery patients have a vastly improved survival rate given T3, as they have high rT3 after surgery ( as do burns, traumas, other major surgeries, sepsis etc). Still, it's not studied...
  28. L

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Yup. Me too re increased energy/decreased fatigue with Tramadol, Oxycodone and Dilaudid . It took me from bedridden to doing amazing things. Once I got IV Dilaudid in the ER for severe gastroenteritis ; the next day I was playing basketball, Rock wall climbing and swimming ALL DAY with my ten...
  29. L

    Starting 10-pass ozone today!

    @Ema thank you :)
  30. L

    Pulmonary test results - anyone knows how to read it ?

    I didn't exactly mean it wasn't bad at all...COPD can come crashing down without much warning except shortness of breath and cough. It's irreversible. Long history of Asthma is a risk factor for COPD. I'd say you have a good Dr. if he's following your asthma for progression to COPD. I'd see him...