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

    To become a member, simply click the Register button at the top right.

Search results

  1. Rossy191276

    Inner sense of bodily tremor

    Yes it has been a primary symptom for me but i only get them in my upper legs, core, and chest. I get the internal tremors every morning when i wake up and when my body is stressed i can get visual tremors that almost look like seizures. I think it is a combination of adrenal surges and low...
  2. Rossy191276

    How Might Ativan, Clonazapem Increase Strength?

    @Belbyr what effects does Ativan give you... to me the interesting thing is that most seem to report a stregthening effect and that is the case for me with clonazapem
  3. Rossy191276

    How Might Ativan, Clonazapem Increase Strength?

    Further to this thread someone on the other thread just wrote that they had found Ativan was somehow increasing ATP i think via the nano needle testing they did...
  4. Rossy191276

    How Might Ativan, Clonazapem Increase Strength?

    Cheers @Malea I didn't know about GABA being a mast cell stabiliser. There seems to be quite a lot of possible causes of increased strength. Someone of the other forum said that they thought they heard Ron Davis say it might have an effect on ATP production as well. Cheers for the warning...
  5. Rossy191276

    How Might Ativan, Clonazapem Increase Strength?

    Hi @Shoshana thanks for your reply. Yes I do take BCAA's and not sure if they are helping or not. Besides a period of a couple of months when I ha a terrible time with digestion that i think was caused by antibiotics I eat really well and healthily but I remain super skinny and can't put on...
  6. Rossy191276

    How Might Ativan, Clonazapem Increase Strength?

    I read where for Whitney Dafoe ativan increases his strength for a short period. I am also interested in this as clonazapem does the same for me. I am completely bed bound and have had periods of months at a time when I am too weak to talk at all. I can currently talk in short sentences but only...
  7. Rossy191276

    High ferritin low iron

    Thanks for all that @Learner1. I checked out those documents. It seems ferritin needs to be very high before it starts doing damage to organs... No I have never had a UIBC score. I checked out the Page 2 graph and the thing is that I always have normal serum iron and haemoglobin. But also...
  8. Rossy191276

    High ferritin low iron

    Great that you were able to pick up on the genetic process in your case! I have had several iron panels done and they are usually: Normal Serum Iron, High Transferrin (in the 320-450 range), Very Low Transferrin, Low TIBC, High Transferrin Saturation, Normal Hemoglobin. Sorry yes I am a C282Y...
  9. Rossy191276

    High ferritin low iron

    Hi @Learner1. Iron panel findings have been something that I looked at from the start of my illness and I just checked out the attached document again. My history since illness onset is: Generally- mildly elevated serum ferritin (300-450 range), consistently high transferrin saturation...
  10. Rossy191276

    Metabolon Testing

    I haven’t yet but have started looking at Metabolon as an option.
  11. Rossy191276

    High ferritin low iron

    My doctor who is a long time ME doctor contends that high ferritin is a key marker for subset of ME sufferers indicating inflammation. I think he is right for me rather than ferritin being related to high iron because when I am worsenit goes well above normal but the longer I don’t have a crash...
  12. Rossy191276

    Low Muscle Glycogen Levels in Muscle Biopsy

    I watched Dr Systrom's video and also found it fascinating. Yes it seems his theory of ANS dysfunction, vascular abnormalities, and muscle problems could also contribute to muscle physiology. I had what I believe are similar findings to what he talked about in a lack of pre-load power reported...
  13. Rossy191276

    Low Muscle Glycogen Levels in Muscle Biopsy

    Thank you for your details response @Sherlock. Its amazing to think that we can get more helpful contributions from the members of our group than doctors supposed to be helping. I have included the biopsy report and welcome anyone's thoughts. In answer to your questions I did do quite an...
  14. Rossy191276

    Low Muscle Glycogen Levels in Muscle Biopsy

    So far I have tried protein powder each day and also bcaa's as well as trying to eat more protein but haven't noticed any difference.
  15. Rossy191276

    Low Muscle Glycogen Levels in Muscle Biopsy

    Hi @alex3619 thanks for your contribution. I did research the glycogen storage diseases some time ago and my memory is that they actually result in high muscle glycogen rather than low such as in my case. I agree the advice in diet is just a guessing game. For the most part I am able to eat a...
  16. Rossy191276

    Low Muscle Glycogen Levels in Muscle Biopsy

    @Sherlock my CK is quite low and research has found that disuse causes type 1and II atrophy together but not selective type II atrophy Selective type II atrophy often caused by inflammatory process or nutrition deficits
  17. Rossy191276

    Dr Fran Kendall?

    I’ve just put my test in to Gene dx and will expect reults in about 7 weeks... I might also do the mito swab test
  18. Rossy191276

    Dr Fran Kendall?

    I presume she will then recommend for you to have the gene testing done @Learner1
  19. Rossy191276

    Dr Fran Kendall?

    Thanks for the update and glad you found appointment worthwhile... So did she suggest further testing or specific treatment youbshould try?
  20. Rossy191276

    #OMFScienceWednesdays-Robert Phair, PhD + ‘Metabolic Trap’

    Hi @Murph where did you hear that they were planning on doing biopsies if needed. I am a severely ill patient and I believe my biopsy is still frozen at hospital- I would gladly try to get it sent to them if it helped...
  21. Rossy191276

    Dr Fran Kendall?

    @Learner1 I was able to go back and find your very informative Mitoswab thread. I'll be very interested to hear what the Dr Kendell thinks about the validity of that testing. One thing I don't understand is why both results that are above and below normal are signs of problems. I figured that...
  22. Rossy191276

    Dr Fran Kendall?

    @Learner yes that makes sense... I think her big price tag relates to the huge amount of results she often has to review before first appointment. As you say I think her specialty lies in primary mito and the reason I went to her is to try to rule out that for myself. I'm really not sure what...
  23. Rossy191276

    Dr Fran Kendall?

    Hi @Learner1 its up to you whether you go through with the appointment but if you do I'd love to hear about your experience with her... I guess the thing with her is she comes from the perspective of primary mito disease and I went to her with the idea that I likely have ME (whatever that is)...
  24. Rossy191276

    Respiratory Chain Enzyme Function Analysis in ME...

    Does anybody know if researchers have done any respiratory chain enzyme function analysis studies in ME? The mitochondrial disease doctor I saw said that it is a way to diagnose genetic mito but I would think that respiratory chain enzyme dysfunction could be a secondary result to potential ME...
  25. Rossy191276

    Dr Fran Kendall?

    The tests she recommended were FGF21 and gdf15 blood tests and whole exome + Mtdna gene testing
  26. Rossy191276

    Low Muscle Glycogen Levels in Muscle Biopsy

    Thanks for your reply @robinhood12345 the interesting thing is except for when I am in a crash my carb intake is good. I guess the low muscle glycogen matches some of the hypotheses that at least in a subset of patients there is impaired metabolism of carbs..
  27. Rossy191276

    Clonazapen Helping Breathing Weakness/Talking Strength?

    I am quite sure that I am not hyperventilating. My best guess is that it is somehow interacting with ANS since it is discussed quite commonly on dysautonomia forums
  28. Rossy191276

    Clonazapen Helping Breathing Weakness/Talking Strength?

    Thanks for that @Gingergrrl. I didn’t know that clonazapem was also used for mast cells... and also for mentioning other meds I hadn’t heard of them.
  29. Rossy191276

    Clonazapen Helping Breathing Weakness/Talking Strength?

    Hi @Neunistiva.... I was on .5mg at bedtime for approximately a year and sometimes I would take up to 1mg if I was having more severe symptoms. After I read on some different sites the different experiences people were having with it and also about issues of dependence tolerance I decided I...
  30. Rossy191276

    Clonazapen Helping Breathing Weakness/Talking Strength?

    Interesting @Gingergrrl... I didn't know you had tried clonazapem. Of the 3 you mention I have only taken midodrine which I had a really bad reaction to. I wish I could get access to IVIG to give it a go...