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  1. ShyestofFlies

    Hiatal hernia? / stomach fullness

    I have a small hiatal hernia also discovered during endoscopy. I was told never to lay down after eating, or it could get bad enough as to require surgery. Nasty business. I sometimes get the fullness feeling but no earlier than I should. When stressed I involentarily vomit in my mouth...
  2. ShyestofFlies

    Gamma Globulin and Fibro

    I'm pretty sure Dr. Levine in NYC does this depending on bloodwork and other treatment, you could call her office and ask to be sure.
  3. ShyestofFlies

    Jodi Basset : Creator of Hummingbirds Foundation For M.E. Is Dead at the Age of 39*

    If you want to read direct from the source the hummingbird foundation has pages dedicated to her and her fellows views. The short version is that she believed that ME was a real, serious, neglected illness. Which I would agree with. Where I disagree with her is that she believed CFS was a...
  4. ShyestofFlies

    The Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Sore Throat Poll

    I have not had CFS very long, but I have an off and on sore throat that I can't explain at least cause wise. It isn't very unique. One week I had it my voice also became raspy.
  5. ShyestofFlies

    Jodi Basset : Creator of Hummingbirds Foundation For M.E. Is Dead at the Age of 39*

    While I disagree with her on CFS, I am very sorry to hear she has passed away.
  6. ShyestofFlies

    Have Doctors Gone Too Far on Exercise For Fibromyalgia?

    With the exception of my cfs specialist, every doc I have seen has recomended exercise and offered no other alternative. Nothing for my pain, fog, fatigue, literally nothing, including the doctor that diagnosed me. When I tell them I used to walk 2-7 miles a week, but now struggle to walk around...
  7. ShyestofFlies

    Bioidentical hormone replacement therapy the go to in Pennsylvania CAM

    Have you tried BHRT? Any positive results? Any negatives? After doing some reading I can say I'm pretty skeptical, still. My doctor selection in PA is slim when it comes to complementary and alternative medicine friendly doctors. Of 3 options I have- one local, one fairly doable, and one on...
  8. ShyestofFlies

    Getting on the waitlist for a cfs specialist

    So I called one office the other day and their prerecorded message mentioned needing a refering doctor as well as contact information for myself. I might be able to get a referal after my sleep study, but I was hoping to get on the waitlist as soon as possible. I don't think my pcp would like...
  9. ShyestofFlies

    The Caffeine ME/CFS and FM Poll

    I originally went off caffiene because it made my ocd and anxiety so much worse, gave me heart palpitations. I also couldn't tell if it had any effect. On my bad days I still needed to take naps and go to bed unusually early for me. Now when I take it I don't notice any difference, except...
  10. ShyestofFlies

    Our Mitochondria need Greens and Light

    I take liquid chlorophyll. Less than the daily recomended dose because I can't stand the taste, I just add a small splash to my water or tea.
  11. ShyestofFlies

    Yet another reason to have vitamin d tested

    I supplement with 5,000 iu a day. I'm still borderline after months of taking it, so my doc told me to stay on it. She recomended 4,000 a day but I've been on 5,000 since it's way easier to find and better to pop just one pill that 4. Didn't notice any difference in any of my symptoms though...
  12. ShyestofFlies

    Burning Pain - Does Anyone Else Experience That?

    I have never been diagnosed with allodynia, just regarded it as a symptom of my fibro, the doctors just like to blame everything on "it's your fibro, nothing we can do"... No explanations or extrapolations to break down specific symptoms. I figured out my hyperalgesia and allodynia divide on my...
  13. ShyestofFlies

    Considering getting Contave presribed for LDN and weight loss. Thoughts?

    I am just over the 40 bmi so I might pursue it with my pcp for now and see how it goes. I really blame the abilify for making me gain the last 53 pounds though. :/
  14. ShyestofFlies

    Belsomra: Drugs You Don't Need for Disorders You Don't Have.

    Oh boy, I have sleep paralysis already I definately don't need a med with that as the side effect, thanks for the heads up.
  15. ShyestofFlies

    Burning Pain - Does Anyone Else Experience That?

    :sorry: I have burning pain in my feet which I assumed is undiagnosed PN. None of my doctors seem to care... No tests or anything. The blankets touch my feet sometimes and it's excruciatingly painful. Not always. When it first happened I thought I was just wearing shoes that were too small! Well...
  16. ShyestofFlies

    A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?

    Contrave is the name of the drug I mentioned: it is a compound of 80mg wellbutrin the antidepressant and 8 mg naltrexone. Naltrexone is usually used at doses 50+ for addiction. Contrave is a weight loss drug, if you are under weight or anorexic/afflicted with an eating disorder it would not be...
  17. ShyestofFlies

    Novel Finding Sparks NIH Chronic Fatigue Syndrome (ME/CFS) Gut Study

    I have to second the nac tablets, when you get the toxic effects of tylenol and sometimes with an overdose of certain meds, they pump nac into your system, usually the liquid form. It really tastes rank, and you must build up to a fairly large theraputic dose for full effect (I was taking 3600mg...
  18. ShyestofFlies

    A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?

    I thought one of the keys to diagnosing fibro was that there supposedly was no inflamation? I'd appreciate if they'd make up their minds lol
  19. ShyestofFlies

    A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?

    Hey I'm not sure how your body would do with a little wellbutrin but if you can't get the naltrexone any other way you might beable to get contrave, 80mg welbutrin, 8 mg naltrexone and split it up. Some people have some more energy from wellbutrin but on label it is a atypical antidepressant...
  20. ShyestofFlies

    Pillow recomendations?

    I found one other type I am intested in- memory foam that's been shreded and put in a cover. It sounds to me like the ideal pillow for me in theory, but I'm not sure how practical that is in terms of how long it would hold up well

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