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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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Search results

  1. M

    Pain gone with AMBROXOL

    Lisa, Here's why we don't just order it from ebay. It would cost $60 CAD for 20 capsules. :0(
  2. M

    Pain gone with AMBROXOL

    Thanks, Lisa. :0) I will see if they will ship to Canada. Thanks for that other name!
  3. M

    Pain gone with AMBROXOL

    Language was a solid block in my googling. So, so grateful to you! <3
  4. M

    Pain gone with AMBROXOL

    There shouldn't be any legal restrictions beyond what there would be for aspirin. It's not a controlled substance anywhere. Again: thank you!
  5. M

    Pain gone with AMBROXOL

    Lisa! What an amazing resource and researcher you are! I am astonished! And so grateful to you! And what a good idea re hooking up compounding pharmacies! You have been such an amazing help! I can't stop using !!! Thank you so much!
  6. M

    Pain gone with AMBROXOL

    Lisa, Yes, yes! Do you know of a pharmacy that will compound this? Please, please unzip :0)
  7. M

    Pain gone with AMBROXOL

    Thanks so much! :0)
  8. M

    Pain gone with AMBROXOL

    I thought it wasn't available in the US? Is it? That would be so much easier!
  9. M

    Pain gone with AMBROXOL

    Lisa 108, Big, big thanks to you for that fantastic search! I will follow that link and see where it leads me. You have helped so much :0) Has anyone discussed having a cream compounded? Recent studies indicate excellent effect from topical use but there is no commercial cream. For...
  10. M

    Pain gone with AMBROXOL

    Thank you much, Moof! That is a great help!
  11. M

    Pain gone with AMBROXOL

    Can someone tell me where to get Ambroxol? I'm in Canada, and it seems to be impossible to get this side of the pond although not a restricted substance. I have found a Canadian supplier but they only supply to research scientists, not even to compounding pharmacies. I would be most...
  12. M

    Niacin Expert needed please!

    Just wanted to post an update re my Niacin adventures. I got some good old fashioned nicotinic acid tablets and started at half a tablet to get a sense of the flush. I didn't mind the warmth, at all, but was not wild about the itching. I read online that if you take a regular aspirin 30...
  13. M

    Niacin Expert needed please!

    That wouldn't work for me. I'm happy for you if it works for you. I'm not doing ketogenic anything, either. I'm very happy for anyone who survived glioblastoma!
  14. M

    Niacin Expert needed please!

    Pamojja, You certainly had some back luck despite a good diet. We don't have nearly as much control over these things as we like to think, do we. I hope things go much better for you now. :0)
  15. M

    Niacin Expert needed please!

    Hi Learner and Pamojja, Yea, there are things to be mindful of on a vegan diet, for sure. And ME complicates everything... and we're guessing so much of the time. I was B12 deficient but overdid the supplements and raised my levels to crazy heights. ;0) Letting that settle down now. I use a...
  16. M

    Niacin Expert needed please!

    Hi Learner1, Yea, my googling resulted in the same conflicting results. I've decided that I don't need to understand whether or not Inositol Hexanicotinate works so long as the niacin I use does. I have not considered "manipulating the ratios of micronutrients" because that phrase makes me...
  17. M

    Niacin Expert needed please!

    Oh, one more thing. I seemed to feel a pretty powerful sense of well-being when the flush stopped but I don't know if that was because I was happy the itch was subsiding; I was reacting in some way to the niacin; or I had totally convinced myself that the flush was a wonderful thing and all was...
  18. M

    Niacin Expert needed please!

    Thanks to all of you and your excellent advice, things are going well :0) Tumbleweed, What you say about the thyroid is very interesting. Only THS was tested. Thanks very much for the helpful link, too! I will look into this further when I have adequate steam. No need to not have niacin...
  19. M

    Niacin Expert needed please!

    Hi everyone and BIG thanks to you! Looks like I got the wrong kind. It says right on the front label: Healthy cholesterol Levels. And the manufacturer sent me the response quoted below in answer to my questions: "Is this product IP6? Can you point to any research comparing Inositol to...
  20. M

    Niacin Expert needed please!

    I am a long term ME patient who has elevated cholesterol - something I seem to remember reading, decades ago, was not uncommon in ME - and I am trying niacin rather than cholesterol lowering drugs. The Niacin I purchased is Inositol Hexanicotinate which, I discovered only after opening, may...
  21. M

    Sick but never sick

    Just want to add my experience to this discussion. My illness started in 1979 and I have had 1 maybe-flu and 0 colds in the 37 years since. I would love to know why that is and I'm sure it's a major clue as to what's going on with us.
  22. M

    severe osteoporosis

    Not going to move post. Please do see my post at the top of this page I did. :0)
  23. M

    severe osteoporosis

    Hi Maryb, The effects of Forteo begin to wear off as soon as it is stopped unless there was an underlying cause of the bone loss has also been addressed. Most people finish Forteo and go on one of the other bone drugs, usually a bisphosphonate, thereafter. Xrayspex, I would think long and...
  24. M

    severe osteoporosis

    Hi GD, Are you taking forteo for hypoparathyroid, osteoporosis, or something else? Do you think it has a positive effect for you because of your parathyroid condition, or something else, or ME. If it's helping the ME, maybe I should reconsider. Of course, if I reconsidered, they'd be sure to...
  25. M

    severe osteoporosis

    No worries, Groggy Doggy. I am not having a brilliant brain day either so who knows which of us was more confused. I'm sorry you didn't have any luck. I don't know anything about Natpara. Are you hypoparathyroid, GD? Or is it also used for osteoporosis. I see it carries the maybe risk of...
  26. M

    severe osteoporosis

    Yes, I have a ton of friends like that, too, but I try to focus on the ones who are falling apart and there are more of those every day ;0)
  27. M

    severe osteoporosis

    Very few insurance schemes will pay for Forteo and certainly not my gov. disability insurance. The price for Forteo is nearly $2000 per month. As I wrote, my endo and others in the bone clinic are doing all they can to get compassionate use for me and I have been talking to Forteo for several...
  28. M

    severe osteoporosis

    Hi Countrygirl :0) I can only manage to keep up with one virtual location and have been using Facebook. I have found is that my non-ME friends are gathering up all the same crotchets of age and are catching up with me! Ok, most aren't actually catching up but some are! Poor them :0( But, I...
  29. M

    severe osteoporosis

    PS Aside from all the breaking - 7 or 8 bones, all told - no pain.
  30. M

    severe osteoporosis

    ETA: Sorry this is so long! It seems to be confusing people whom I have left thinking I had posted a question. And, because I wrote such a looooong post, I just can't go back and try to figure out where I misled. So, I hope to share this info so that others may not have to reinvent this...