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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. U

    wrist problems

    Anyone experiencing wrist discomfort/pain? I noticed that my wrists are much more prone to discomfort in the past couple of years or so. I do use my wrists in repetitive positions, but not nearly as much as when I was healthy (and my wrists didn't feel uncomfortable then).
  2. U

    Might go to Dr. Klimas' office

    Angela, What treatments did you try when you were seeing Nancy Klimas? Thanks
  3. U

    Study on Australian Medical system. Doctor treatment

    Doctors in general are overworked and have a huge amount of information to retain. Some goods doctors do try to keep up to date on various illnesses - but that means taking out more time of their own lives. Love of learning and memory skills also play a big factor.
  4. U

    does anyone feel better when they dont eat?

    Adreno - I get this too And it seems to be much worse if I don't eat enough carbs. I've tested my blood sugar during those moments and they seem to be OK. I use to tolerate fasting fine - I would get somewhat irritable and hungry, but I wouldn't feel terrible cognitively. Now I get increased...
  5. U

    Might go to Dr. Klimas' office

    Hey Marg, Thanks for your detailed answer. What was the stool test you got? There's so many different ones, and I'm not sure which ones are accurate.
  6. U

    post exertional symptoms

    Hmm, basically a wired feeling. Brain is unable to calm down and fall alseep. Of course, I feel worse the next day if I haven't slept well the previous night.
  7. U

    post exertional symptoms

    Does anyone get insomnia/poor sleep as a post-exertional symptom?
  8. U

    Comment by 'uni' in 'Recovery Project'

    Do you know if she sees any patients with mild CFS? I was functioning at maybe 50-60%, and now I'm at around 70%. I'm still struggling with post exertional symptoms, poor sleep, and poor cognition/memory. I'm wondering if I should go and try to see her.
  9. U

    List of Yasko/nutrigenomics practitioners?

    aquarius, do you know how other people are doing with the Yasko approach to treating CFS? do you think its a good approach?
  10. U

    Comment by 'uni' in 'Recovery Project'

    Hi Inester, Did Dr. Rey talk about what kind of improvements their patients had? And what kind of treatments do they offer besides immunovir and equilibrant, and treatments for POTS?
  11. U

    New protocol combines methylation, mito, glutathione support, etc.

    It is great to read that this man is functioning at 85-90% again. Many doctors and practitioners will recommend these supplements, but it seems like the majority of people do not experience a significant improvement (I'm just basing this off of user input on forums, so I could definitely be...
  12. U

    anyone have low c3/c4 proteins?

    One of the test results that always comes up a little low is my complement c3 protein, and also c4 protein (once). I'm wondering if anyone else has this result?
  13. U

    Might go to Dr. Klimas' office

    Another question to add: Is it best to get lab tests before you visit her? Viral titers, immune panel, NK function, etc. Or she order those and then follow up with treatment when they come back?
  14. U

    Might go to Dr. Klimas' office

    I have a few questions for those that have seen Klimas or Rey: -what kind of improvements are they seeing with their patients? -it seems like klimas uses immunovir and equilibrant frequently, what other treatments do they offer? -do you need to fax in a referral from your primary care...
  15. U

    Copper excess--Hey Rich, will methylation help?

    Dreambirdie, I'll wait for Rich, but I wanted to give my input on this. How do you know you have excess copper? There are many websites out there claiming that copper toxicity is causing certain symptoms, but there is little to no evidence to back up their claims. Copper toxicity does occur...
  16. U

    anyone find something that significantly improves cognition/memory?

    Thanks for the recommendations. I've tried carnitine and it doesn't seem to make a difference. Caffeine helps with the 'not wanting to do anything' feeling, and slightly with cognition. Maybe I should give nicotine gum a try. The problem is I'm quite sensitive to caffeine, I have to have just...
  17. U

    anyone find something that significantly improves cognition/memory?

    Hi, I was wondering if anyone found something which significantly improves cognition/memory/brain fog? I've gotten improvements in my other symptoms ever since starting sertraline, an SSRI, but my cognition/memory/mood is still lacking. I find it very hard to read or learn anything new. I...
  18. U

    suggestions for alternative treatments?

    I'm sorry to hear that. It's all very confusing. Unfortunately there is not enough research on this condition. I agree its best to be cautious about starting any drug. I guess I meant safe in comparison to other CFS treatments like antivirals or large doses of antibiotics. But each drug has its...
  19. U

    suggestions for alternative treatments?

    Hi Kathy, For fatigue, insomnia, PEM I would suggest you try sertraline for a few months. Yes, it is an SSRI (antidepressant), and you don't even need to have depression to try it out. I found it quite helpful for fatigue and post exertional malaise. It is one of the more stimulating SSRIs so...
  20. U

    suggestions for alternative treatments?

    Hi Kathy, I think it would be a good idea to list out your symptoms. What symptoms are your struggling with the most? Common CFS symptoms: post-exertional malaise, cognitive dysfunction, pain, insomnia, dysautonomia/POTS, irritable bowel syndrome/dysbiosis, food sensitivities, muscle...
  21. U

    ADHD Prior to Developing CFS

    no ADD diagnosis but i definitely had attention problems which worsened as my other symptoms showed up in fact, if i take an ADD questionnaire right now, I score in the highest category - "highly likely to have ADD"
  22. U

    Has Anyone Cured Themselves of This?

    Hydrocortisone helped my orthostatic tolerance quite a bit, but I didn't stay on it due to possible adrenal suppression. SSRIs can also be helpful for dysautonomia/orthostatic intolerance. I think SNRIs are better than SSRIs in treating this.
  23. U

    does anyone feel better when they dont eat?

    Fasting also increases catecholamines. Even in normal people, they will feel better when they don't eat. Unfortunately, I think many people with CFS are unable to tolerate fasting, and also have food sensitivities which might make them feel worse after eating.
  24. U

    Any Thoughts about these blood tests?

    Agreed that your morning cortisol is too low! Definitely get tested on that. I can think you can qualify for secondary Adrenal insufficiency if Addison's is not the issue. That alone will cause a lot of your symptoms.
  25. U

    which physician to see

    Hi Kati, How much have you had to pay for appointments, labs, and treatment with Klimas? Does your insurance cover any of it? The first appointment is pretty expensive - $900.
  26. U

    which physician to see

    Sorry to post another one of these threads. I'm wondering which physician should I try to see given my situation. I am not formally diagnosed, but believe I have CFS - due to having symptoms for the last 2.5 years. My main symptoms are post-exertional malaise (significant fatigue and brain fog...
  27. U

    copper makes me feel worse, but i don't have Wilson's disease

    As the title says, copper supplementation makes me feel worse despite testing that shows I don't have Wilson's disease. My ceruloplasmin and serum copper levels are both on the low side repeatedly. Serum copper is within range, on the low side. Ceruloplasmin was below normal on two tests, and...
  28. U

    TCM Medicine Safety

    Dreambirdie, How well has Chinese medicine worked for you? I am interested in giving it a good try. I actually stumbled upon a book which explained chronic fatigue syndrome and the different TCM formulas you can use to treat it. It says treatment will likely take a few months. I would soo...
  29. U

    certain part of brain feels pressure/inflammed often

    Hi, Does anyone experience a pressure feeling in their brain, or a feeling of inflammation? I mean in a specific area. Whenever I am stressed, or if I eat gluten/dairy, or if I experience hypoglycemia, I get a pressure feeling in my upper/side right brain. It seems to always happens there...
  30. U

    treatment for dysautonomia

    Unfortunately I am not sure what is causing my dysautonomia. I feel like the cause of that is also the underlying cause for my chronic fatigue/exercise intolerance symptoms.