• 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.

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Search results

  1. L

    Baicalin

    Uno, are you still getting benefit from baicalin?
  2. L

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    I have Mycoplasma Pneumonaie and I was prescribed three months of antibiotics. I will go through those before I start my antivirals and LDN. I doubt though that 3 months dosage will do much good.
  3. L

    Live stream Jan 18th Dr Montoya: An Unfolding Story of Scientific Discoveries and Future Targe

    thank you!
  4. L

    Live stream Jan 18th Dr Montoya: An Unfolding Story of Scientific Discoveries and Future Targe

    the recording of dr. montoya got cut right when he was about to talk about rituximab. what else did he say? did he mention tofacitinib as a treatment option?
  5. L

    Live stream Jan 18th Dr Montoya: An Unfolding Story of Scientific Discoveries and Future Targe

    Thanks so much. Listening to it now.
  6. L

    Minding my pqq's ;)

    I love puns too, much to my husband's dismay. I haven't tried PQQ yet. I have spent hundreds and hundreds of dollars on supplements and either I don't feel anything or I am too exhausted to take them. I recently had a tilt table test. I have orthostatic hypotension but not POTS. I had one...
  7. L

    Minding my pqq's ;)

    Kes, I love your pun! Did you try PQQ?
  8. L

    Pulsating Head

    The pulsating was my first symptom of CFS nearly 5 years ago. That along with a feeling of wooziness (not dizziness). I have so many bizarre, indescribable sensations in my head nearly all the time - it feels like a post-concussion, or as if my head is going to explode from pressure, or there's...
  9. L

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    With respect, I think you need to find a new doctor. For one thing, you should be tested for viruses. If you don't have them, you shouldn't be on antivirals, for God's sake! What makes me really mad is that you had TWO TICK BITES around the time you got sick and your doctors at the time weren't...
  10. L

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    Hi Binkie, Since I stopped taking Acyclovir I learned a couple things - first, you're supposed to start on a small dose and increase slowly. I started with 800 mg. So, there's that. Also, if you felt bad it might actually be a good sign that you are responding to treatment. It's not a herx...
  11. L

    Update on Ampligen Availability in the US

    Oops, sorry about that. They should update their website!
  12. L

    Update on Ampligen Availability in the US

    Apparently, Dr. Lapp provides Ampligen treatment in Pennsylvania. http://drlapp.com/research/ The therapy is OBSCENELY EXPENSIVE. And anyone who is not in PA would have to move there to get the 2x/week treatment. Infuriating. Also, I would be concerned about the increased risk of breast cancer...
  13. L

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    Hi Gary, I have a question for you - when you started antivirals, did you feel worse before you started feeling better? I started taking Acyclovir for high VSV-1 a couple weeks ago, and feel horrific. I felt bad before but either I'm having the mother of all flare-ups or I'm reacting to the...
  14. L

    FDA approves new type of sleep drug, Belsomra

    I have SEVERE insomnia. So, for the last year and a half I've been taking a cocktail of three sleep meds, so as not to develop a tolerance to any one of them. I take Ambien two nights a week, Trazodone three nights a week, and Belsomra two nights a week. The Belsomra is hit-and-miss. I must take...
  15. L

    Anyone tried Myelophil?

    Sighing is one of the first problems I noticed when I started becoming ill with CFS. I think it's not mentioned much because it is the very least of our problems.
  16. L

    Mycoplasma pneumonia treatment. Is Chronic or acute different protocol

    Thanks for responding! And glad to hear the antibiotics are making a difference for you. I actually haven't started them yet, as I'm finishing a brutal course of antifungals. My head-flu feeling is the best way I can describe my CFS symptoms. I feel as if it's the worst flu of my life (more...
  17. L

    Mycoplasma pneumonia treatment. Is Chronic or acute different protocol

    It's good to know you got some improvement. Thanks
  18. L

    Mycoplasma pneumonia treatment. Is Chronic or acute different protocol

    My IGG level is 5 according to Quest Diagnostics. I am very ill and getting worse. I went to the Stanford CFS clinic and the Dr. Hall prescribed three months of antibiotics. I also have high Herpes 1. So, after the antibiotics, I'm going to take antivirals. MY QUESTION is: Has anyone ever felt...
  19. L

    What Types of Fatigue Do I Experience Poll

    absolutely!! the "fatigue" is agony.
  20. L

    What Types of Fatigue Do I Experience Poll

    for me it is the feeling of a horrible head flu that never goes away. that, along with CRUSHING fatigue and a very distinct leaden feeling. just walking to the kitchen is an ordeal, or sitting up. man, i just don't know how to simply get through the day. one moment at a time i guess.
  21. L

    THE DIET for ME/CFS?

    Cort, Here we are in 2016. I have severe CFS (yet not the most severe). I think I'm ready to try a diet of some sort, and am trying to figure out which is the best. My friend INSISTS I do a low FODMAP diet, but I'm resistant. I have virtually no gastro, yet many serious neurological symptoms...
  22. L

    Potassium Arsenite 0.05% Cures CFS in Falcons, so what about humans?

    BUMP... I experiencing a severe flair up of CFS. Have been bed-bound for two weeks with horrible flu-like symptoms and the feeling as if I've been hit over the head with a frying pan. I feel as if I'm dying. At the onset of this particular flair up was a herpes I break-out AND impetigo. It...
  23. L

    Vagus Nerve Stimulation (t-VNS) using TENS (non-invasive)

    Did you decide to try out the TENS unit? I'm seriously thinking of doing so myself. Severe CFS. What have I got to lose?
  24. L

    FDA approves new type of sleep drug, Belsomra

    I'm not addicted to any one of these drugs because I haven't developed a tolerance to any one of them. I used to be dependent on Ambien - it was so, so hard to get off of. Three months after I withdrew I reintroduced Ambien two nights a week. BUT - I completely agree with you that this...
  25. L

    FDA approves new type of sleep drug, Belsomra

    Hear. Hear. I attribute my horrible withdrawal as one of the main reasons I now have CFS - the GABA/Glutamate imbalance is still present. If anyone wants to consider withdrawing from benzos, please PLEASE first consult the Ashton Manual. It saved my life.
  26. L

    FDA approves new type of sleep drug, Belsomra

    Klonopin is indeed a benzodiazepine. It also can help with seizures. Many many people use Klonopin for sleep. It is very addictive for some. And a subset of those people who have built a tolerance will have a hell of a time withdrawing. I've been there.
  27. L

    FDA approves new type of sleep drug, Belsomra

    No, Flexiril isn't a benzo. I think it's chemically related to tricyclic antidepressants but I don't think it causes weight gain. It's a muscle relaxant. I guess it helps with sleep for some but I can't imagine how. Ambien doesn't work for you even at only two days a week? All of these drugs...
  28. L

    What to do when Klonopin/Doxepin stops working?

    that's excellent that you are able to stay on klonopin! you're a lucky one. and i am certainly in the small percentage who had horrific withdrawal symptoms. and thanks for mentioning Tizanidine. i'm going to look into that for sure.
  29. L

    What to do when Klonopin/Doxepin stops working?

    did i never respond to you? do you still have insomnia?
  30. L

    Realistically there is no cure?

    Congratulations! How did you get better?