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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. E

    Dr. starting me low and slowly increase on doxy. OK?

    I made the mistake of assuming it was viral. I don't even want to say how long I let it go until now, but it has partly to do with my well-founded fear of pharmaceuticals. It seems to be a so-called atypical bacterial infection, not uncommon. Doxy seems to be the abx of choice for this type of...
  2. E

    Dr. starting me low and slowly increase on doxy. OK?

    My doctor, who knows my extreme sensitivity to meds, wants me to start doxycycline (for bronchitis) at a very dose and work up gradually to the usual dose. I generally avoid pharmaceuticals and am very apprehensive. I am also dangerously underweight and can't take chances with anything, fwiw...
  3. E

    Low dose Naltrexone

    My advice: never let any doctor push you into anything. The compounded pill has to have a filler that dissolves easily in water for this to work. I measured 50 mL and marked it on a plastic amber medicine bottle from a pharmacy (ask pharmacist if you don't have), very carefully put in the 1...
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    Low dose Naltrexone

    If you're not stable on a consistent low dose, I'd recommend stopping altogether until you stabilize and then restarting at .1 mg for at least a week. As sensitive as you are, you need to go very slowly. Some of us don't do well with LDN. I worked up to 1 mg and seemed to benefit for a few...
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    how did you get out of "bedridden level" ??(even if you are still sick)

    My concern is not to drink too much, but I get the impression that with the right dose, you don't have to worry about overhydrating?
  6. E

    how did you get out of "bedridden level" ??(even if you are still sick)

    How much do you drink now, compared to before?
  7. E

    how did you get out of "bedridden level" ??(even if you are still sick)

    Jeff, My doctor prescribed desmo for me to try at a tiny dose, but I'm reluctant to try even that, largely because I'm extremely sensitive to meds. Also, I don't have any huge problems as far as enormous amounts of drinking and urinating, so I'm wondering if it would really make a difference...
  8. E

    free amino acids to augment protein -- pitfalls?

    Hydrolysed proteins tend to have the effect of lowering blood pressure. It has something to do with the direct absorption of the di- and tri-peptides; you can google this. I didn't believe it could be too strong an effect, but after trying one-third the recommended serving, I noticed within 15...
  9. E

    Could AHCC make me feel worse?

    I respond badly to immune modulators. You don't know all the effects they're having on which cytokines, etc. The idea that it's helping and you just have to push through has gotten me in trouble in the past. If you can't adjust to a small amount in a reasonable period, I wouldn't recommend...
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    free amino acids to augment protein -- pitfalls?

    That's one that made me more fatigued, on an empty stomach(tiny amount).
  11. E

    free amino acids to augment protein -- pitfalls?

    Tryptophan, for example, on its own makes me anxious, if I remember correctly.
  12. E

    free amino acids to augment protein -- pitfalls?

    My digestive problems recently took a bad turn and I feel the need to find some way to add in some kind of elemental diet, not as my sole source for nutrition, but in addition to food, which I am unable to eat enough of. It's challenging since I react badly to a lot of things. One possibility...
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    Combination of Supplements Allows Me to Work and Exercise - But causes extreme Gastritis

    Mya, Have you tried deglycyrrhizinated licorice? It works well for me to reduce stomach pain and nausea. Take it on an empty stomach, a while before taking anything else.
  14. E

    Are there supplements or non medication techniques to raise BP?

    Just a thought: before I started using a water filter (many years ago), I couldn't bear to drink lots of water. It turns out when you filter it, water tastes good and drinking it is an entirely different experience. Not to mention, it's much better for you.
  15. E

    Has anyone experience mental issues with taking florinef?

    I've been taking Florinef on and off for maybe three years, in combination with hydrocortisone. I have never taken more than one quarter of a .1 mg pill, most often a crumb has been sufficient. I know I need to take a break if I start feeling anxious and depressed. I don't know how sensitive you...
  16. E

    Low dose Naltrexone

    Oh, I definitely have lots of viral activity. Didn't know what you meant. But I have heard a couple of reports of people whose depression didn't disappear for quite a while after stopping, and that's what is worrying me the most.
  17. E

    Low dose Naltrexone

    The usual: general extreme fatigue, weakness, fibromyalgia, POTS, post exertional malaise and, various cardiac symptoms, etc.
  18. E

    Low dose Naltrexone

    I've been sick for over 36 years, steadily becoming progressively worse. I fall into the very sensitive category and, as 99% of the treatments I've tried have made me worse – often permanently – I am now very wary of trying anything new at all. But having heard enough positive about LDN, I...
  19. E

    Pulsing HGH dosage?

    I have bad muscle wasting. It helped slow that down and help with tissue repair.
  20. E

    Pulsing HGH dosage?

    Does anyone know of a protocol to avoid acclimation and dependency when using human growth hormone? I was on it for quite a while and its efficacy diminished over time. I stopped for about a year and am considering starting again. Thanks, Ellen
  21. E

    sudden thyroid storm untreated

    Melissa herb (lemon balm) has thyroid suppressive qualities and is used for hyperthyroidism. My experience in taking it would concur. It's not easy to find, though.
  22. E

    Canary in a Coalmine - Exclusive interview and film trailer help launch Kickstarter campaign!

    See for list of backers: http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine/backers . There are 69 as of this moment, just lots of people making small contributions.
  23. E

    Are there any general guidelines for pulsing immune modulators?

    A couple of times many years ago I experienced significant relief from OTC immune modulators, but in both cases the products stop working. That was before I ever heard about pulsing to avoid that sort of thing happening. Imunovir has a very specific and somewhat elaborate dosing schedule. I was...
  24. E

    Salvia Miltiorrhiza

    I take dan shen for heart problems, its primary use. It helps noticably with shortness of breath, palpitations, and chest pain. I haven't noticed any particular effects on mood or cognition. Happy to say I haven't had any negative effects, either. Ellen
  25. E

    A Tribute To Rich Van Konynenburg

    I was amazed and deeply touched by Rich's tireless dedication to our community. His life will continue to inspire me to try to emulate his kindness and generosity. Ellen
  26. E

    NEJM: New MS Drug BG-12 Proven Effective, Safe

    From the little I've read, this looks very promising. For instance, see the third post here, at this MS forum: http://www.msworld.org/forum/showthread.php?t=120632 . Ellen
  27. E

    Beta Glucan as surrogate for GcMAF /macrophage activator?, any experiences, opinions?

    I used beta glucans for a while a few years ago. I got a significant increase in energy for about a month and a half, and then I started feeling much worse, with a lot more pain and inflammation. At first I did not connect the worsening with the beta glucans, because I had been told that it...