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

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  1. Parismountain

    Dr. Lapp closing practice, I need a doctor near Bristol Tn or Roanoke Va

    Yes he is retiring. They are cancelling appointments made out into the future. Doesn't look like Dr. Black is an option at the moment. I'm so fuzzy on how to find a local doctor who will do my SSD paperwork now. This was a non-worry area of my life and now it is unsettling to have to...
  2. Parismountain

    Dr. Lapp closing practice, I need a doctor near Bristol Tn or Roanoke Va

    Just got a call that Dr. Lapp is shutting down as of 1/31/2018. Been going there over 20 years. I need a CFS/ME doctor that will similarly see me once or twice a year and fill out disability paperwork. Looking in Western Va/Bristol area or Roanoke Va, or Greenville SC or Raleigh NC. I'm sure...
  3. Parismountain

    Article Headlines Which are Annoying

    http://www.wrcbtv.com/story/27150954/not-just-lazy-chronic-fatigue-is-real-new-brain-scans-show The headline in this recent article is " Not just lazy: Chronic fatigue is real, new brain scans show" I doubt the author meant how it can read but "Not just lazy" is poor phrasing. So we're not...
  4. Parismountain

    Patients to DHHS: Cancel the IOM Contract!

    I'm utterly disheartened. I don't vote for the party Sebelius is a cohort of but it's ironic the party which normally would be accused of plotting our doom doesn't have its hands on this one. I don't agree with the Affordable Care Act, heard a reminder the other day of how a central...
  5. Parismountain

    Question about this Lyme disease study from Tulane

    If that's the proper way to read the study then that is the most astonishing tidbit I've learned this year.
  6. Parismountain

    Question about this Lyme disease study from Tulane

    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029914 I can't decide if I'm reading this correctly but my question is in experiment 2 did they prove that monkeys treated for 7 months on antibiotics, that they then let ticks feed on the monkeys and then tested the ticks for...
  7. Parismountain

    When Lyme Disease Lasts and Lasts

    Suz, We're going back about a dozen years now so my memory is fading on this episode. I met the CDC criteria (I believe I was 7 bands positive on Igenex). I was thrown out of a study my doc was doing on CFS over this finding. I had not been near a tick (to my belief) in 25+ years. I also...
  8. Parismountain

    When Lyme Disease Lasts and Lasts

    http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/ Well written and I like the author's tone. I did the two year antibiotic route based on a Lyme doctor telling me I had Lyme's disease (positive Western). Of course my CFS doc and Lyme doc disagree as to what has made...
  9. Parismountain

    NPR Attacks Disabled Workers

    Here's a paste on Media Matters from Wiki "Media Matters for America (MMfA) is a politically progressive[1] media watchdog group that says it is "dedicated to comprehensively monitoring, analyzing, and correcting conservative misinformation in the U.S. media"." It's fine to link articles...
  10. Parismountain

    flu shots - have you reconsidered this year?

    Just got mine yesterday. First one in about 7 years. Will have my relatives update this if I meet my demise. I'm braving it, this one sounds pretty bad. I even have a cold and went and got the shot. Dr. Lapp warned me in the past but I am overriding that suggestion this year.
  11. Parismountain

    Sulphur question

    Hi, no I haven't done any genetic testing. Wouldn't know really where to start.
  12. Parismountain

    Sulphur question

    Once in a great while I get to pondering what put me in this state of health. I've skim read some methyl posts and read of Rich and there was something the other day (can't quite remember exactly what it was) that when I did a Google search I came up with Rich answering a question on another...
  13. Parismountain

    Benzodiazepine Withdrawal and Tapering

    For people who are inclined to suggest people taper completely off Klonopin I'd like to ask a question. Having been on a small .25 mg dose for 22 years, what would one make of that? Is honing in on my dose and not gradually growing, is that a sign I might be okay maintaining that dose or...
  14. Parismountain

    Benzodiazepine Withdrawal and Tapering

    22 years on .25 milligram Klonopin. About once a month I'll take a whole pill, .5 mg. I have felt funny if I forget a pill and have tried a couple times to get to .125 milligrams, that dose is too small to help with some anxiety I've developed. The worst is a hitch in swallowing, not having...
  15. Parismountain

    What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

    One more thing, with Romney losing I'll now lose my Medicare Advantage plan. I just got the paperwork last week and Blue Cross has left my market. They won't discuss why but there is a 20% reduction in the Advantage subsidy being removed every year under Obamacare and that has kicked in and I...
  16. Parismountain

    What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

    I'm concerned my Medicare which had been slightly more advantageous for a provider to accept is now on the level of Medicaid and I know how difficult it is to find a good doctor if you're on Medicaid. I'm disappointed another go around and perhaps a wiser solution to health care in general has...
  17. Parismountain

    Questions on SSDI/SSI hearing

    Very happy for your victory to get your benefits. I didn't understand your answer to the judge on the judge's question. "One of the quesions that the judge ask me was "You appear to have been receiving you best possible care when you were going to the Hunter Hopkins Center. Why did you not...
  18. Parismountain

    Completely eliminated my severe anxiety symptoms with three supplements!

    Thanks for your observation. I've been a bit busier than normal which has me whooped so when I'm whooped I'm a little more susceptible to anxiety. Probably not the best moment to benchmark but I'll finish up the 60 supply and go from there. Thanks again
  19. Parismountain

    Completely eliminated my severe anxiety symptoms with three supplements!

    Splurged and bought 3 supplements, Tumeric, NAG and flaxseed oil. That oil doesn't taste so well. Only my fifth day so we'll see how it goes.
  20. Parismountain

    cold limbs

    Maybe have your thyroid checked out. You might need synthroid. Just a suggestion.
  21. Parismountain

    Paul Ryan wants to abolish Medicare and replace it with a voucher system, Obama may be just as bad

    We've been told that Obamacare will not affect those with insurance, or actually very few. I have Medicare Advantage. That program is going to go away under Obamacare (most of the 700 billion he robbed from Medicare to pay for expanding Medicaid to the poor. I will lose my lower co-pay, my...
  22. Parismountain

    Boosting testosterone for ME symptom alleviation?

    Wow I checked into the price of Arimidex, ouch. I just found out there is a generic I can get for $9 on my insurance drug plan. No restrictions for male use only so I guess I should follow the advice here, make an appointment, check the three blood things mentioned, free, t, and the estrogen...
  23. Parismountain

    Boosting testosterone for ME symptom alleviation?

    Heapsreal if it were converting to E2 what is the strategy then? I did have monthly shots but then my wife is good at giving shots and we on our own broke the monthly shot into 4 pieces, one per week but my T was not climbing. I was around 220 or so. So we started with the Testim gel daily...
  24. Parismountain

    Boosting testosterone for ME symptom alleviation?

    I'd be careful with the T shots. I started with a medium dose (can't remember), had a whammy effect on me. Never had sweat in years then wow I'm sweating again. That lasted about a month and then the shots would be back to no effect on me again. Doubled the dose, nothing. Took blood tests...
  25. Parismountain

    New problem: Vertigo

    It's weird to preface a post like this but if you have insurance I'd check into possibly getting a sleep study done. I had that same vertigo dizzy move your head and swim feeling and my doc and I chased it down. Thought it was a deep seated ear infection to heart trouble and then low and...
  26. Parismountain

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    You know Vincent van Gogh could slice his ear and after he departed his art is most admired. So Mikovits maybe is a bit eccentric. The irony here is she apparently orchestrated activities which weren't kosher to be able to continue her research elsewhere (and meanwhile sink WPI) but in the end...
  27. Parismountain

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    It's pretty obvious Judy M is cooked, discredited for life for her actions. She could find the cure for every cancer out there and nobody would take notice because of these sorted events. Even if that's the way it goes down I still have empathy for her, her tenacity which endeared her to many...
  28. Parismountain

    Whittemore Institute suing Mikovits for alleged theft of lab notebooks and data

    Random agitated thoughts before the arraignment today. What must Dr. Peterson be thinking? Lucky to get out of there? His name still on the institute. Don't answer any knocks on the doors, could be next? What's the job posting going to look like over at WPI? Interviewee - But you put...
  29. Parismountain

    Whittemore Institute suing Mikovits for alleged theft of lab notebooks and data

    Yes that is from John 18. I highly doubt that the whole truth will ever be known in this fiasco. Did Casey Anthony kill her daughter? What's the truth that came out there? People are funny, they think truth floats to the top or something.
  30. Parismountain

    Whittemore Institute suing Mikovits for alleged theft of lab notebooks and data

    "PS I think everyone should settle down and let this play out, the truth will come out eventually!" What is truth?