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

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Search results

  1. T

    new sleep med/orexin antagonist??

    Looks like if it is approved it wont be available until mid 2013
  2. T

    Insomnia from Valtrex?

    Hi Alice I have called around 4 or 5 pharmacies in a day when I was looking for a certain generic. The pharmacy is usually very nice about it. Just say you are looking for a certain generic, tell them the name of them med and the strength. They should be able to look it up in their computer...
  3. T

    Receeding Hairline in Women

    Are there any other women out there that are dealing with receeding hairline hair loss? To be clear, I am not experiencing hair loss all over. In fact, my hair is quite thick and I dont seem to loose very much hair when I shower. The receeding hairline started about 5 years ago when I...
  4. T

    new sleep med/orexin antagonist??

    Ah hell, I hope not! I actually hope this may be something promising, I am in need of a miracle sleep drug.
  5. T

    Sinusitis (?) but scared of antibiotics - any ideas?

    The number of replies in such a short time shows I think how common sinus problems are in me/cfs! I have had surgery on mine, they still swell up and get congested when I lie down, apparently common, but it makes sleeping even more difficult!
  6. T

    new sleep med/orexin antagonist??

    Interesting. Wonder how long til it comes to market, if it gets approved. I will have to google.... All I know about orexin is that it is somehow connected to narcolespy......but I cant remember if they had a deficiency or too much of it? "Turning off wakefulness" is what I need. My brain...
  7. T

    would it be rude to take info into doctor to read?

    Hi! I was wondering if you tried electrolytes for your POTS/ OI ? I just started using a drink called Electro Mix by Alacer. Others are also using it. Its very cheap online. Just a thought.
  8. T

    would it be rude to take info into doctor to read?

    I've found that if a doctor isnt naturally inquisitive by nature, they probably wont be thrilled with being presented with information they dont know about. You can usually tell quickly if they are the inquisitive kind who enjoys continuing to learn. An open minded GP or Integrative doc usually...
  9. T

    Dibencoplex for the active B12? Fred have you tried it yet?

    It was only the adb12 and LCF they discontinued that caused their sleep problems to return? Were they still taking Mb12 and Mfolate? I feel that the adb12 along with the mb12 is probably crucial in my situation. In all my years of on again off again methylb12 and mfolate supplemention, I never...
  10. T

    Dibencoplex for the active B12? Fred have you tried it yet?

    Hi freddd, Yes, I agree with you it probably is ATP generation, otherwise like you said I would not be having the hyper responses to the supplements. Since I have been ill for quite a long time I am not expecting a miracle over night. I think in regards to sleep, what I have is called FREE...
  11. T

    would it be rude to take info into doctor to read?

    No! I do it all the time! Usually just one or two short pages, and only if I plan on discussing that exact issue with the doctor during that apointment. Unless they are a specialist and you come to them with something totally out of their field of medicine....they may not like that. Probably...
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    Dibencoplex for the active B12? Fred have you tried it yet?

    Hi curemind, I orderd this, will try a small amount on Sunday probably. I ordered this because someone else said it was much better than the source natural adb12, and it also does not contain mannitol or sorbitol which irritate my gut terribly. I'll let you know how I like it , but I have to...
  13. T

    Cancer - The Forbidden Cures

    No one is talking about the reasons for Chronic Fatigue? Everyone is talking about the possible reasons for Chronic Fatigue! And searching for answers to their illness....that is why everyone is here.........
  14. T

    Cancer - The Forbidden Cures

    Let me guess......Dental Infections? :D There could be a million and one reason for "Chronic Fatigue" Why do people keep using that damn phrase? :mad: I'm just in a lousy mood today
  15. T

    Why saying "CFS DOES NOT EXIST" is terribly harmful to ALL patients

    Maybe I should not have posted this at all....I hope this does not turn into one big misunderstanding. I respect everyones opinion and their right to their own opinion. I just cringe whenever I hear "me/cfs does not exist" because I know the psychological and possibly physical damage that can...
  16. T

    Why saying "CFS DOES NOT EXIST" is terribly harmful to ALL patients

    My point was really just that when ordinary people read comments made by doctors online which proclaim that "me/cfs does not exist!" all it does is encourage people to beleive that anyone who has a me or cfs diagnosis is NOT PHYSICALLY ILL AT ALL. I believe many people are not properly...
  17. T

    Why saying "CFS DOES NOT EXIST" is terribly harmful to ALL patients

    This is a response I posted in the ME/CFS Doctors section, the post title "Looking for a good CFS doc in New Jersey/New York City".....in response to some comments made by a Dr. Mirza which member rlc posted starting at post #22 (This is an OPEN FRIENDLY HONEST DISCUSSION. I am not fighting...
  18. T

    Looking for a good CFS doc in New Jersey/New York City

    I have a major problem with random Doctors saying that CFS does not exist, especially on the Internet where millions of people can see......and the reason for this are: (and I think most poeople will agree with this)..... #1. There are thousands of people bedridden with M.E. who are given a...
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    Looking for a good CFS doc in New Jersey/New York City

    Hi rlc, I wrote a long reply which just totally disappeared. I really can not type it again, my brain fog is too bad, and your post was about as long as a chapter in "War and Peace"!!! :) All I will say is that I still stongly disagree with much of what Dr. Mirza said, as well as his...
  20. T

    Cured Myself After 4 Years of CFS

    Ok, this last post on saturday you are still talking about gut bacteria, NOT hormones. Now on Tuesday....you are totally cured, but by hormones now? Please clarify. I have never come across so many conflicting statements by one person. Is this entire thread a moot point now? You seem to...
  21. T

    Vasopressin/ADH ... My Story

    Great summary SOC ....I am not the only one confused by these very conflicting statements. Hopefully xks will bring some clarification to this situation.
  22. T

    Insomnia from Valtrex?

    You know I searched high and low for teva or mylan but NO pharmacy had anything but Ranbaxy or Sandoz. Not even mail order. I had the insomnia problems with the name brand valtrex too though....and the severe stomach bloating. I would look 6 months preggo and felt like my stomach was going to...
  23. T

    CFS is a Bacterial Infection

    Xks, do you still think CFS is a bacterial infection? Lactic acid poisoning? Mutaflor cures CFS? Just asking. Also, why do you say in one post you spent probably "one hundred thousand dollars" on treatment, when in another you say $50,000 (one of your qualifications you stated for writing...
  24. T

    Vasopressin/ADH ... My Story

    What happened to Soil Based Organisms, and Mutaflor? A few weeks ago you were saying that CFS is caused by lactic acid poisoning and the cure was Mutaflor. In fact, that was your signature! I cant follow your posts as they are continually changing about what cured you, was it Mutaflor that cured...
  25. T

    Anyone here a patient of Dr Peterson's?

    I bumped up a thread in the "Phoenix Rising Articles" section (near the top) titled "Article: Corinne at Dr Petersons" it is there now, can you find it? I think there was another member named Tristen who also was seeing Peterson if I read correctly....looks like Corinne was last logged in a...
  26. T

    Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

    Bringing this up for IVANA to see, she was wanting to get in touch with Corinne
  27. T

    Article: Corinne At Dr. Peterson #6 Including Picking Dr. Peterson's Brain!

    I am repsonding to this thread for IVANA, who was looking to get in touch with Corinne