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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. BadBadBear

    Mestinon + Famvir - whoa!

    Well, I have come full circle back to this post. :) My update is as follows: - my thyroid labs have normalized and I'm off of all thyroid meds. Started them in 2013 for low T3 syndrome, finished my very slow taper off about 6 weeks ago and my labs are really good. I am making a LOT of T3...
  2. BadBadBear

    Have you noticed symptoms of Connective Tissue degradation since onset of disease?

    Don't we know that in CFS the body tries to run on amino acids? Thought I read that, if so seems healing would be hampered. As well, in my case I always had low protein (albumin). Maybe we are catabolizing collagen and protein for basic energy and have none for repair. I am in the mild...
  3. BadBadBear

    Burning eyes excessive tears

    I had similar issues when I was in gap acidosis. I think even my tears were acidic. Eventually I started taking bicarb to alleviate the acidity. Might be worth a try if it doesn't respond to mcad treatment.
  4. BadBadBear

    Epstein-Barr virus myeloradiculitis and encephalomyeloradiculitis

    Wow, that sounds like so many of us. Scary!
  5. BadBadBear

    Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

    I have some plain BCAA and its so horrid, I took it a couple times and can't imagine taking it straight. I tried. Maybe just my body saying I don't need it, hopefully it would taste better to you!
  6. BadBadBear

    LDN Naltrexone side effects

    Does LDN interact with MAO enzymes? I can't find anything definitive, but I'm heavily brain fogged in today.
  7. BadBadBear

    Glycine - advice please?

    For me, glycinate form kept me awake. Its atypical but for some people its excitatory (related to cells dumping chloride inappropriately). So if you have an odd reaction to glycinate form, you'll know you are not going nuts. I ended up doing ok with malate form. i think this basic thing of...
  8. BadBadBear

    Turmeric/Curcumin for ME/CFS?

    My experience was that it worked awesomely for my muscle pain but threw me into deep depression. Its an MAO inhibitor so it can have some unexpected side effects, especially if you already have MAO issues.
  9. BadBadBear

    Low dose Naltrexone

    Wow, that's a much longer term than my doc suggested for trial (2-3 months). I'm going to think about backing my dose down to 0.5 mg and just letting that stew for a while. I don't think I've gotten any of the endorphin rebound effect from it yet, maybe the key for me will be waiting until...
  10. BadBadBear

    Low dose Naltrexone

    I'm at about 5 weeks into LDN. I started with a lower dose at 0.5 mg and have slowly moved to 1.5 mg. So far, the only thing I notice is how much more tired I am in the morning, and my daytime fatigue is increased. Also seems to be making me feel emotionally flat. I am really not sure at...
  11. BadBadBear

    Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

    excellent reading, thanks for posting this link!
  12. BadBadBear

    Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

    @Hip Looking up is definitely problematic for me. Increases my orthostatic issues. I would hazard a guess that if your head doesn't align well over your shoulders, looking up increases compression. I started Egoscue and was told one of my main posture issues is my shoulders curl forward...
  13. BadBadBear

    Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

    @Wayne thanks for the Egoscue info. There is actually practitioner in my very rural area. I'm going to check it out as I thought a postural physical therapy might be helpful.
  14. BadBadBear

    Autonomic Nervous System Functioning Related to Nocturnal Sleep in Patients With Chronic Fatigue Syn

    My phone does it. Also got a watch that will store it overnight (whatever the newer Polar is). I have not found it useful at all so I didn't pursue it any further.
  15. BadBadBear

    How many of your have improved on a keto diet?

    Makes me worse, my electrolytes are already dicey and I get ill quickly on keto. Just cannot do it.
  16. BadBadBear

    Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

    @sb4 That is scary! I have access to one, and yes, went too far over the first time. Fortunately had someone to help me back up. I could see how that would be terrible if it happened alone! Maybe a board with one end just propped up enough would be safer to test it out with. But I am afraid...
  17. BadBadBear

    Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

    Wouldn't an inversion table create short amounts of decompression in the cervical spine? I was thinking of trying one, not going fully upside down but just enough to feel a decompression effect. My neck is really sore today anyway, I used a foam roller on my neck and back some days ago and now...
  18. BadBadBear

    Jarred younger herbal supplements for neuroinflammation

    Curcumin works really well for my muscle pain, however, after being on it for a while I have a sore throat and mouth sore (never a good sign for me) and it seems to wreck havoc on my hormones. My doc says I am, of course, the only person she knows who has these side effects with it. I am...
  19. BadBadBear

    Increased risk of chronic fatigue syndrome following psoriasis: a nationwide population-based cohort study. Tsai et al 2019

    I also have psoriasis like patches on my feet that developed after ME/CFS. Have not had them biopsied or diagnosed formally.
  20. BadBadBear

    Myo inositol triphosphate

    PMing you
  21. BadBadBear

    Myo inositol triphosphate

    I am really interested in trying it for a few reasons. I have read several reviews of it that people feel a sense of 'well being' on it. Also the effects of it seem to last for about a week at a time versus a few hours (for the lifespan of the RBC). The downside to me being the effects last a...
  22. BadBadBear

    Myo inositol triphosphate

    ITPP at racehorsemeds @Hip has this supplement made it onto your radar?
  23. BadBadBear

    Myo inositol triphosphate

    I read about it on a horse racing meds site (looking for glucosamine for my horse) and went HMMMM, that looks very interesting since I react extremely positively to inositol!
  24. BadBadBear

    Myo inositol triphosphate

    Has anyone tried myo inositol triphosphate? Here's what Wikipedia says about Myo-inositol trispyrophosphate
  25. BadBadBear

    Low thyroid (t3) a result of CFS? And, does supplementation help?

    @starlily88 Stellar that your Hopkins doc is a good one! Yay! Yes, if they will test your RT3 then it will make the next step decisive as to whether adding additional T4 is worth trying or only causing more problems. And its wonderful that you have a baseline previous measurement to compare...
  26. BadBadBear

    Low thyroid (t3) a result of CFS? And, does supplementation help?

    Sure, keep in touch! One of my earlier 'doctors' had been 'educated' by Mayo clinic and had been recently to their thyroid symposium, and she lectured me definitively that no one needs T3 and that any other test beyond TSH is useless. She also gave me a handout on gratitude and thought that...
  27. BadBadBear

    Low thyroid (t3) a result of CFS? And, does supplementation help?

    @starlily88 Ok, so... I have an Integrative MD I work with, she was willing to treat based on symptoms. My only DX was low T3 syndrome, I don't have any known thyroid issues or disease. 1st year she treated me, I started on super duper low dose T3 and very slowly titrated up to what I needed...
  28. BadBadBear

    Low thyroid (t3) a result of CFS? And, does supplementation help?

    @starlily88 - So if I was you, I'd either ask my endo for labs or order them yourself if you live where you can, and see what your RT3 is doing before you add any other meds. If RT3 is going up on T4 meds, then T4 meds will just not help you. If your RT3 is same or going down, then T4 meds...
  29. BadBadBear

    Low thyroid (t3) a result of CFS? And, does supplementation help?

    hi @starlily88 , Yes, I was on Cytomel or generic T3 aka liothyronine for about 3 years. I have eventually been able to transition over to levo. But for those first three years, I could not convert T4 into T3. All T4 did was raise my reverse T3 levels and make me more tired. Are they...
  30. BadBadBear

    Cucurmin and Herxheimer?

    Old thread, but I'm also having a herx type reaction from curcumin. Curcumin works amazingly well for my DOMS pain, better than Celebrex. Has anyone stayed on Curcumin and gotten through the herx? Does it eventually end? Wondering if its a die off from something other than EBV as I've been...