• 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. Butydoc

    Can POTS cause heart palpitations (at night) ?

    I agree that beta blockers have some dry backs but if the abnormal rhythm is PAF, then the risk of stroke probable out way the side effects of a a beta blocker. Again, I would try and get a recording of these events to properly diagnose and treat.
  2. Butydoc

    Can POTS cause heart palpitations (at night) ?

    Hi Bansaw, It’s sounds like to me you are having a dysautonomic response at night with the full badder causing a tachycardia. When you get up your pots probably causes your blood pressure to drop which triggers PAF( proximal atrial fibrillation). If you could afford an I watch then you could...
  3. Butydoc

    Abilify- Stanford Clinic Patients

    I texted Janet Dafoe today and asked her if Whitney is still having benefits form Ability. Her response was “Definitely!”.
  4. Butydoc

    Abilify- Stanford Clinic Patients

    A tuberculin syringe that has 0.1 cc increments can easily be used for small increments. I started with 0.1cc and increased to 0.2cc without difficulty.
  5. Butydoc

    Thermoregulation and body temperature

    . Yes I shiver when cold, very uncomfortable. It was a strange symptom I had prior to coming down with overt ME/CFS. Two of my children with ME/CFS also have temperature regulation issues as does my granddaughter who has autism.
  6. Butydoc

    Abilify- Stanford Clinic Patients

    Hi Badpack, I took rituximab without obvious benefit. I have bradycardia with episodes of tachycardia. There appears to be a problem with my autonomic nervous system. Sometimes parasympathic dominance and other time sympathetic hence the use of inderal for tachycardia and Valium for...
  7. Butydoc

    Abilify- Stanford Clinic Patients

    Aripiprazole also comes as a solution, 1mg/ml. I do use a tuberculin syringe. It terms of being a placebo, it’s possible. I do have significant arrhythmia, atrial, that require me to take inderal and Valium every 2-3 days. So far I haven’t had any arrhythmia since starting aripiprazole. I...
  8. Butydoc

    Abilify- Stanford Clinic Patients

    My improvement appears t be global except sleep issues. I’m certainly not in remission but substantially improved. I was able to make a market run and plan to walk today. That hasn’t been possible for the past several months. I use to wake up feeling awful which would persist until I went...
  9. Butydoc

    Abilify- Stanford Clinic Patients

    I was progressively doing worse over the past several months. I would get PEM every few days. My threshold for PEM was lower and lower until I found myself confined to a bed 90% of the time. I’m extremely sensitive to medications and was reluctant to start at the dose many have suggested...
  10. Butydoc

    Abilify- Stanford Clinic Patients

    Abilify also comes in a solution of 1mg per ml. I use a tuberculin syringe which allows me to use 0.1mg increments. I started at 0.1mg and up it to .2mg over two weeks. I plan to stay on this dose since I have had a good clinical response from moderately severe to mild. I was bed rest 90...
  11. Butydoc

    Evidence of widespread metabolite abnormalities in me/cfs-whole-brain magnetic resonance spectrosco

    Jered Younger has a very good video on youtube concerning his recent research.
  12. Butydoc

    Heart Rate Monitor Watch with Audible Alarm

    The apple 4 watch has a notification that you set for too low or too high a HR.
  13. Butydoc

    Skin biopsy without anesthesia

    I have personally performed many skin biopsies using normal saline as a local anesthetic. If performed properly, there is usually minimal pain.
  14. Butydoc

    Some questions about Hyperbaric Oxygen and IV Light therapy

    In genreal, in a mono chamber, the pressure is usually 2atm.
  15. Butydoc

    New Forum -- Millions Missing Campaign

    Hi Tiredbill, Like you, my wife was there with two of my children with ME/CFS. She also spoke at the open mic. She told me the event was very moving. Hopefully this momentum towards spreading the word will continue to have a impact.
  16. Butydoc

    One month of CBD Oil and immune shift?

    Very interesting article. The problem I have is that almost all of the references are in mice. I couldn't find a good clinical article that really answered my question. Even though a lot of research has been done, almost none has been done in a clinical setting. As we have seen with...
  17. Butydoc

    One month of CBD Oil and immune shift?

    I suspect you are correct, but I sure would like to see a research article that confirms your suspicions. Unfortunately there is very little on this subject. Hopefully now that it is legal in many states more researcher will get involved. I know that Israel has been engaged in active research...
  18. Butydoc

    One month of CBD Oil and immune shift?

    Can you reference an article that demonstrates the superiority of CBD overTHC medically? I guess what I'm looking for is a study which show the clinical difference between these two compounds. The article you referenced makes some observations but no clinical comparisons. Is it possible that...
  19. Butydoc

    One month of CBD Oil and immune shift?

    Are you aware of any study that compares THC to CBD in terms of effectiveness? It seems that CBD oil has been used for medical purposes but not really compared to THC.
  20. Butydoc

    What kind of job does everyone have?

    I use to be a Plastic Surgeon but now unable to work Ive become a part time grandfather. I would be a full time grandfather if my health permitted. I had to change how I perceived my self worth and adapt to my new reality. As time goes on, this becomes easier but never easy. Good luck with...
  21. Butydoc

    A Very Exciting Expert ME/CFS Summit

    The focus of the meeting wan't about ongoing research so this wasn't discussed, but I did see a lecture by Dr Ron Davis form the the department of biology at the University of Utah just before the meeting started. It was exciting to see such a laser focused scientist explain some of his ongoing...
  22. Butydoc

    A Very Exciting Expert ME/CFS Summit

    Dr. Peterson was looking at his data that he presented to the group. All of the participants were fully engaged and enthusiastic. Very unique meeting.
  23. Butydoc

    A Very Exciting Expert ME/CFS Summit

    bump
  24. Butydoc

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    I haven't read the entire thread so hopefully this isn't redundant. Suramin is sold in Tanzania, Uganda and Kenya under the name "Bayer205". It is classified as a class I drug in the USA. That is the same class that heroin is placed. The only way I can figure out how to obtain the Bayer made...
  25. Butydoc

    "Deactivating Epstein-Barr virus" through supplements??

    Maybe it has little to do with on going chronic viral infection. Valcyte is also considered a microglial inhibitor.
  26. Butydoc

    "Deactivating Epstein-Barr virus" through supplements??

    i Hip, Where is there a good article that demonstrates Montoya's results that antivirals are effective? Are there any published results showing that measuring viral titers are helpful in making decisions concerning the use of antivirals. Is there a good article that shows that responders to...
  27. Butydoc

    After 3 years with cfs able to exercise and feel energised - what next?

    I would be extremely careful with your exercise. I felt like I was mostly recovered and started my martial arts work outs figuring I was in remission, that lead to a crash and subsequently I never recovered. If you are still symptomatic, I suspect you are at substantial risk of recurrence of...
  28. Butydoc

    Is it safe to have a baby?

    Hi Dechi, I developed ME/CFS at age 51, my son 31, my daughter 33 and my brother 21years old. Butydoc
  29. Butydoc

    Is it safe to have a baby?

    Hi Ronan, I do believe that some subgroup of ME/CFS are genetically linked. My mother and brother have ME/CFS as do I and two of three of my children. My daughter's disease started out with a horrible pregnancy which required two hospitalizations for nausea and vomiting. I do believe there...
  30. Butydoc

    Does the type of triggering insult affect symptom type, severity, and prognosis?

    I developed the disease at 51, my mother at 60, my brother at 21, my daughter at 33, and my son eat 32. My youngest daughter who is 25 is showing soft signs of the disease. I doubt age plays a role.