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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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  1. Tristen

    New thyroid med with T3/T4 -- now I'm a potassium hog

    Sorry, worded that wrong. I wasn't metabolizing the T3 normally. So I would get a very high T3 and low T4.
  2. Tristen

    New thyroid med with T3/T4 -- now I'm a potassium hog

    Yea, I thought it was alarming too...but yet to discover the cause. Apparently the reaction is more with the synthetic thyroid. No, no palpitations....just sharp pains in the chest.
  3. Tristen

    New thyroid med with T3/T4 -- now I'm a potassium hog

    The Armour works very well bringing my TSH down and balancing the free T4
  4. Tristen

    New thyroid med with T3/T4 -- now I'm a potassium hog

    Apologies for being a bit off topic. Hopefully this won't hijack your thread. I hope you find the answers your seeking. I noticed that your using natural thyroid supplements and since you are a PwME, thought possibly you could relate. I've had to use the Armour thyroid because the...
  5. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Yes, something like infection is fueling the problem. I too have done lots of Lyme&Co work (babesia+ too). Was on some major antibiotic Tx for over a year. That was after a year of major AV treatment. It does pay to go after the infections. So maybe the opiates are blocking the effects...
  6. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @Dufresne The Shoemaker labs I've done very recently...all were normal. I've also done a bunch of autoimmune stuff I need to dig out. haven't done any of the cytokine tests recently......those would be most interesting. I'm curious to find out what Dr Peterson has to say about this.
  7. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Thanks for the info. Looked it up and it sounds most interesting...although it appears it won't be available much longer. Have you tried it? Do you know a reputable source? What I've found is so very expensive.
  8. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Hi Wayne, Yea, I'm not one bit exaggerating the relief I get. I didn't want to do the narcotic thing at all....but I don't want to do me/cfs 24/7 either. So, until there is an alternative that works as well, I'm going to do it. I have pain and am justified using the meds for that anyhow...
  9. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Some great thinkers here trying to answer why, but......Sorry, I can't answer that. It is a primary reason for this thread. It should be very significant for researchers as well. It would give light to a very core problem with this disease. Opioids effect all symptoms for me. I lost the OI...
  10. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Hey Wayne, yes I've read a bunch about the glutamate toxicity issue too, but no I've not tested that and so I wouldn't know for sure. Can it be done with a blood test? And would it even be accurate since it's in the brain? I told my GP about my response to opioids and she thought it may be...
  11. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Yes. I have been on opioid pain meds daily for about 6-8 months now. While on these meds, my symptoms have been dramatically reduced. I've done in depth labwork (including Shoemaker stuff) before and after taking these meds. The labwork before was off the charts high for inflammation. These...
  12. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    The Butrans is best I've found so far......but I'm still looking because I still want something completely non narcotic that will have similar affect. I keep playin with the idea of giving the LDN another try.
  13. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Hey Dufresne, been a while. I don't know for sure which Rx brand I had for the naltrexone because it was compounded. The 5mg strength my doc ordered had to be compounded. I've never had a good response to LDN. In fact horrible both times I tried it. Really strange that I do well on...
  14. Tristen

    Stimulants like provigil or nuvigil?

    @heapsreal ...... Yea, I think that's how Provigil is purported to work; It's supposed to cause mental alertness without the wiry feeling. I remember that it was commonly used by commercial pilots for that purpose. Probably most indicated for Narcolepsy. The stuff made me much too wirey...but...
  15. Tristen

    Stimulants like provigil or nuvigil?

    My experience with these CNS stimulant meds, including Provigil, is that I'm very sensitive to them and get really wired up, even at miniscule doses. I do feel much better on them the first few days, but continuing after that is dangerous for me because I've found that anything that pushes my...
  16. Tristen

    On Disability? Here's what a periodic "review" looks like.

    lol, kinda felt like I was repeating some of the same I said earlier in this same thread.....guess that means I'm in the right place.... :)
  17. Tristen

    Illness is not our true self/soul

    So true.....hang onto you, the real you. That's why hiking and running was always an important part of my every day......it was my #1 way of centering, of meditating, shaking off the world. Getting in touch with that part of me where the strength comes from. Many things can throw me off...
  18. Tristen

    On Disability? Here's what a periodic "review" looks like.

    SDSue.....From what I've seen, Ginger is correct that they routinely deny people first run. So hang in there. Disability is by far the best thing I've done to manage this disease. It's worth the struggle. As I'm sure is true for you....I actually have no idea what I would have done without...
  19. Tristen

    POLL OPEN! Terminology, Definitions, and Criteria

    I call it "Post Exertional Exacerbation of ME" because that's exactly what it feels like. "Amplified", is basically the same......but "exacerbation" seems a bit more clinical. I don't get into measuring levels of fatigue/exhaustion, because they are far from being prominent symptoms for...
  20. Tristen

    My Rituximab experience with RA and ME

    I think your right on there.....MTX takes several weeks to reach maximal effect. I would anticipate relief in that respect. Glad your tolerating the drugs well enough to continue...... Hoping to witness you making huge strides getting better. I feel you have a good shot at it.
  21. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    You may already know this, but some naturopaths are pretty good at successfully treating allergies. Some mainstream docs dealing with allergoes may be able help with this as well......but then you would need one OK with pot. May be worth a few phone calls. Be nice if you could resolve that...
  22. Tristen

    How many people have been ill with CFS/ME for over 20 years?

    I've never had a full remission in 20 years with ME. It has actually been a constant progressive disease. I've been at all levels between mild and severe, but nary a day off from all symptoms. Just grateful as hell to be where I'm at now away from that abyss of severe ME. And, I've hopefully...
  23. Tristen

    My Rituximab experience with RA and ME

    Best of thoughts for some positive results and thank you for sharing your journey. I've been on a personal adventure myself for a bit lately looking at a possible connection with my arthritic condition and ME. I look forward to hearing about your experience with the "overlap" between the two...
  24. Tristen

    Has anyone been completely cured of CFS?

    Agreed. Even if only partially healed, it may be life saving. I don't know how much longer I could have tolerated severe bed bound ME. If not for AV's giving some of my health back....well, not sure what would have happened. Just know I'm now able to tolerate and manage remaining symptoms...
  25. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    I think it would be interesting to note how those, other than just myself, with this positive response to opioids, respond to LDN. Seems to be 3 groups with LDN response....those with zero response, those with positive response, and those like myself who get much more ill on LDN.
  26. Tristen

    Brain damage/dysfunction and substances that give near remission

    I remain looking for the best option. Currently take max dose of Tramadol (300mg/day) which gives me a little relief, maybe 25% of what I would get with narcotics such as Hydrocodone......but a little is better than nothing, and I don't want to take narcotics. Soon I'm gonna try the Butrans...
  27. Tristen

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    This is awesome, thank you Simon. I remember years ago attempting to convince doctors that my symptoms felt so much like inflammation caused by a CNS infection. Of course they thought it was somatic. When I finally got into a good me/cfs doc, his list of my diagnosis had right up...
  28. Tristen

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @Dufresne ... I wanna hear how it goes for ya with the LDN. Got me going on that one again and I think it's important to follow closely those like you and myself who are responding to things the same. Obviously not everyone with me/cfs has our kind of response to opiates. So are you...