• 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 (FM), 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. Q

    Talking with CFSAC - Views from the other side of the table

    Am so very pleased to see Mary Ann Fletcher, Ph.D. on this board. She has so much to offer. Hope PR will highlight her unique and significant viewpoint! Thank you for your service Mary Ann Fletcher Ph.D. Best, Questus
  2. Q

    Significant Improvement Story -- Focus on Thiamine Deficiency

    Was rereading a bookmarked article on this, and it sums up the B-1 thiamine and sulfur connection this way, and the sulfur content in some amino acids. Pasting: Sulfur is found, naturally, throughout the whole body as evidenced and verified by Vitamin B-1 (Thiamine) and Vitamin H (Biotin), One...
  3. Q

    Mayo Clinic Minnesota and POTS

    Pasting: There is an overlap between chronic fatigue syndrome and POTS. Patients with POTS who have chronic fatigue syndrome have higher laboratory markers of sympathetic activation than patients without chronic fatigue.43, 45
  4. Q

    Mayo Clinic Minnesota and POTS

    Here is the link to the paper. It's excellent. I have extreme hyperadrenergic POTS, (NE over 1400) and MCAS. You can see in this paper that Mayo divides hyperadrenergic POTS patients into two group. Those with an NE of 600 to 999, and those with an NE over 1000. They note it's the hyper...
  5. Q

    Mayo Clinic Minnesota and POTS

    Valentjn, Mayo has published a new paper on POTS and they acknowledge CFS as a factor in the disease. They've come a long way, and they definitely recognize the connection of CFS to POTS, and site 'high viral load' as one of the reasons for the connection. I've been treated by Mayo for...
  6. Q

    Significant Improvement Story -- Focus on Thiamine Deficiency

    Be aware of taking high B1 doses if you hava a SULFA ALLERGY. Thiamin, or B1 contains sulfa, (link below). I have an extreme allergic reaction to sulfa, and started B1 at 100mg a day without a problem. When I increased to 300mg a day, I got the kind of extreme deep muscle pain and headache...
  7. Q

    CDC Study Must Include CPET, NK Cell and Viral Testing, Advocates Insist

    Sorry if I missed the link, but is there a way to sign the petition online? Thanks for sharing this Mark. Best, Questus
  8. Q

    Night sweats

    Night sweats can be a symptom of CFIDS, but they're a very common symptom with hyperadrenergic POTS. If you have POTS, ask your doctor to order catecholamine testing to determine if your norepinephrine levels are elevated. If they are you have hyperadrenergic POTS, and will experience extreme...
  9. Q

    how does one test for low blood volume?

    This is the machine used to test for blood volume. There are not that many in the country. Here's a link to Daxor, THE company that makes the machine that accurately measures blood volume. In this link you'll find the list of hospitals in the cities that have this machine. When I say it's...
  10. Q

    Interesting thread/video found on a Mayo Blog

    If you haven't watched this, it's well worth the 50 minutes of time to see. Mentions dysautonomia and obviously lots of neuro issues. I found this on a Mayo Clinic blog, so they clearly stand beside it. I saw Dr. Cheney for 15 years, and during that time he prescribed B12 shots. Now I...
  11. Q

    Interesting thread/video found on a Mayo Blog

    Found this video on a Mayo blog regarding major neurologic damage. Amazing!
  12. Q

    How to lower norepinephrine

    I would suggest having your catecholamines tested. It's the only accurate way of determining your actual level of norepinephrine. Best, Questus
  13. Q

    Oprah and Deepak 21 day meditation challenge

    Golden, Am not sure if this will work but am posting the link to last Sat.'s meditation in the hopes that you can access it. If so perhaps others will join in and share the other days meditations for people who can't access it...
  14. Q

    Oprah and Deepak 21 day meditation challenge

    I signed up for this sometime ago, and today is the first day. It's not too late to sign up. Each mediation is about 17 minutes long and done by Deepak Chopra. Today's is called 'The Journey to Perfect Health'...
  15. Q

    Propranolol ER and Tiredness

    Let me reply respectfully, I don't need or want to to be insulting. While beta blockers do act on catecholamines, I'm referring to a hyperadrenergic state, as in hyperadrenergic pots. (Beta blockers are used commonly for regular pots, NOT hyperadrenergic pots.) Less than 5% of pots...
  16. Q

    Propranolol ER and Tiredness

    Thank you, but I'm not taking beta blockers, so this information does not apply. Beta blockers are not used to block NE or to treat a hyperadrenergic state. An extreme amount of norepinephrine does not increase energy, in fact it's exhausting because it not only causes chronic...
  17. Q

    Propranolol ER and Tiredness

    Adreno, do you have a link to any data that supports the theory that blocking norepinephrine increases fatigue? Am blocking a lot of norepinephrine, (Mine is over 1400), and am using Methyldopa to quiet the sympathetic nervous system. I've not heard the theory that blocking NE increases...
  18. Q

    HPA axis reboot?

    Saw the new endocrinologist today and she ordered several tests. I may have mentioned that I have Hashimoto's thyroid disease, which is an auto-immune disorder. The body makes antibodies to destroy the thyroid, so I take a synthetic thyroid pill daily. When I was dx with Hashimotos, the...
  19. Q

    HPA axis reboot?

    Thank you for sharing your thoughts. Have lots of experience with endocrinologists, I was dx with Hashimotos, (an autoimmune thyroid disease) in my early twenties. When I was dx at Mayo the endocrinologist said having Hasimotos put me at greater risk for developing Addisons 'later'. Agree...
  20. Q

    HPA axis reboot?

    I agree that the ACTH stim test is part of the 'gold standard' for testing adrenals. Did the 24 hour urine test for methylhistamines and that's the 'gold standard' for testing for Mastocytosis. Squeaked by with a result of 788. 800 is positive for Mastocytosis. Those results and the...
  21. Q

    HPA axis reboot?

    Am going to be seeing an endocrinologist next week because I was referred to her by an oncologist/hemotologist at MD Anderson. He's suggesting I have further investigation because of my very high norepinephrine level of over 1400. I have hyperadrenergic POTs, and he's not discounting that...
  22. Q

    POTS, mast cells & Vanderbilt

    Ahimsa, Thank you for reminding me! Brain fog on my part for forgetting to post the link. I really liked this website called Quizlet. To the right of the words 'autonomic nervous system' at the top of the page there is a blue arrow to the right. Start clicking on it...
  23. Q

    POTS, mast cells & Vanderbilt

    I saw the doctor last week at MD Anderson regarding my work up for Mastocytosis, and he has referred to an endocrinologist at MD Anderson for further testing regarding my high norepinephrine levels. He's not satisfied that an NE level of over 1400 is 'only' relevant to having hyper adrenergic...
  24. Q

    Allergy / Mast cell treatments

    I had my last appointment with the Chairman of Oncology at M D Anderson on Thursday for my work up for Mastocytosis. (Please don't confuse Mastocytosis with MCAS) This workup was for Mastocytosis. My result to the 24 hour urine methylhistamine test was 188. A positive test for...
  25. Q

    POTS, mast cells & Vanderbilt

    That's interesting Valentijn, Yes, am trying to 'disable' the sympathetic excess with Methyldopa. Didn't mention it earlier, but not only was my NE over 1400, but my dopamine levels were very high too. It's taken me a while to try and make sense of all this, but it seems dopamine is...
  26. Q

    POTS, mast cells & Vanderbilt

    Not sure why my posts are not showing up on PR? Moderator? Anyway, here's a really interesting clinical trial Vandy has been doing on POTS, and CFS patients and Methyldopa. The study has been going on a long time, and will be finished later this year. Find it fascinating that Vandy has...
  27. Q

    POTS, mast cells & Vanderbilt

    Methyldopa has been (at the initiative) amazing, and I mean amazing, immediate (and I mean immediate) improvement for me. OMG, just started it, at 250 mg on Wed, and then 2 times 250 mg. max dosage dx to me on Thursday (500 mg per day), yesterday, and last night I slept and actually dreamt for...