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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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  1. O

    ME/CFS and HIGH blood pressure

    Tania... good luck! It seems we all have to travel to obtain diagnoses and good care. :( I have never had skin problems except for one episode of head to toe hives. 20-30 % of us don't! As far as the POTS and BP issues you mention, I will just refer you back to the article in Nature. I had a...
  2. O

    ME/CFS and HIGH blood pressure

    Tania... It is not easily found in the blood. One reason is that many are deficient in Tryptase, the Mast Cell mediator most often tested in the blood. "RESULTS: In support of our hypothesis, we find that alpha-tryptase deficiency affects 80/274 (29%) of individuals surveyed. The genotype of...
  3. O

    ME/CFS and HIGH blood pressure

    I think I have posted this before, but will again. It is important and treatable. "Orthostatic hypertension has also been associated with a number of conditions involving some form of autonomic dysfunction. In a recent study of patients with POTS in the context of disordered mast-cell...
  4. O

    Types of POTS

    Myra... I looked up a POTS researcher/clinician for a diagnosis. It is not easy to find someone at times. If you have a teaching hospital near, then you could call and ask if anyone does the testing for autonomic disfunction. If not, then you just have to travel. Tania...I am fortunate, or...
  5. O

    Types of POTS

    Lancelot... you may be correct about the Immune stuff. Here are the symptoms of a Mast cell problem: Abdominal pain / Anaphylaxis Blood pressure changes & shock / Bone pain (mild to severe/debilitating) Chest pain / Cognitive...
  6. O

    Types of POTS

    Kerrilyn.... I had read through that site before, and had a couple of problems with the information there. One problem is that I do NOT have Fibro. I have very little pain, and it is not consistent. The other is that my POTS is not linked to trauma, but is genetic. It runs in my family. The...
  7. O

    Types of POTS

    Hyperadrenergic POTS is one type, but there is a very good paper on the different types at this link: http://knol.google.com/k/postural-tachycardia-syndrome# Many Drs don't do the appropriate tests to determine the type. Such a shame! As far as high BP, here is a bit of information...
  8. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    Thanks Lancelot. I think it might be wise to read the PDF of this paper. While it is not as strong as I would like for it to be, it does mention the possibility of NPY being elevated due to viral infection.
  9. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    Me too. I was... and still am... looking at the science of this. Sometimes we have to wade through the muck to find a pearl or two. Klimas.... I don't know enough about her personally to give her a thumbs up or down. I have some catching up to do. Heroes... they are like the rest of of...
  10. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    Willow...look at this link for the history of this field: http://www.nfnlp.com/psychoneuroimmunology_quinlan.htm An excerpt:
  11. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    Angela...." just 'hoping' ". I don't know how that can be concluded by what I write, or don't write, on this thread. Nope, not my intention at all.
  12. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    ???? I am not a proponent for Klimas or the type of research that was presented.
  13. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    Well, you beat me to the connection. Mast cells release gobs of Histamine, which dilates blood vessels. I believe the working hypothesis in this group of POTS patients is that the Histamine triggers the release of Norepinephrine to combat the Histamine, which triggers the release of...
  14. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    Good question, but I have no idea. Now will go looking. I do know my Tryptase (a marker for mast cell burden) is elevated.
  15. O

    New Klimas Paper- NPY, Stress, HPA Axis and CFS

    NPY has been noted in POTS as well. http://hyper.ahajournals.org/cgi/content/full/hypertensionaha;45/3/385 I just hope they keep looking until they can definitely separate physical stress from psychological once and for all.
  16. O

    Sleep apnea should not be exclusion criteria for ME/CFS

    I have obstructive sleep apnea, well treated. I also have mitral valve prolapse, another condition mentioned. I am also positive by serology. I think it will take awhile to sort everything. If other existing conditions are treated, how could they be used to exclude someone? Testing will help...
  17. O

    Testing: VIPDX XMRV Culture/PCR Negative - Serology Positive?

    You are welcome. Yes, I think they knew that the Culture would not catch everyone. If you read the forums, you will know that this little bugger is hard to find. I believe several who had tested early were also contacted. I do not have a diagnosis of ME or CFS, but have Dysautonomia/OI instead...
  18. O

    Testing: VIPDX XMRV Culture/PCR Negative - Serology Positive?

    Elizabeth ;;;; I tested early, in April, at my request. VIP-DX contacted me later about retesting via serology, It took about 12 weeks for the serology results. In all, about 8 months. A long time! But it is worth the wait. Hold on!
  19. O

    Testing: VIPDX XMRV Culture/PCR Negative - Serology Positive?

    Elizabeth... try not to worry too much. I was negative by culture but positive by serology. My symptoms were pretty mild until I had to have a surgical procedure. I know the waiting is horrible, but hold on!
  20. O

    From the 1st annual XMRV conference

    George Ha! Your posts echo my thoughts, George. At first I was pleased that the group found something... almost anything would do, as long as there was something. But I started wondering why they didn't find XMRV!!?? With that question, my thoughts wandered around until The Genome War popped...
  21. O

    WTH is going on, crazy itching and twitching

    The 'after exercising' thing sounds like a Mast Cell problem as exercise can be a trigger. Have a look at this link: http://www.tmsforacure.org/oldsite/patientinfo.shtml Feel better!
  22. O

    Postural orthostatic tachycardia syndrome -P.O.T.S.

    You are right.... folks don't always have low BP. I don't know why so many of us have low D3, but we do. I'm glad they found that. I'm going to leave another link to a research paper. This is a long paper, but they discuss the high BP and Mast Cell involvement. Might be good to take to the Dr...
  23. O

    Postural orthostatic tachycardia syndrome -P.O.T.S.

    Hi Sally... another POTS person. I love my flowers too! If you are going to see your Dr, you might want to take this information: http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html I had the crisis. One thing that has helped lots is having my D3 checked (low) and supplementing...
  24. O

    Plea from Dr Bell to donate to the WPI

    Vanderbilt sent samples to be looked at, probably from ppl who had CFS as well as Dysautonomia. If they get +s, I would bet they start testing
  25. O

    Do you have crimson crescents?

    Just wanted to add that I had no idea the CCs were there until I saw this thread and checked. My throat is not red elsewhere except for a couple of spots on the Uvula. My throat is not sore and does not appear to be inflamed in any way.
  26. O

    Do you have crimson crescents?

    I have the crescents, very visible on both side. Tested negative by culture, and am waiting for other testing to become available.
  27. O

    Meeting with a sleep specialist doctor - any suggestions?

    I am with Dr Klimas... if there are sleep problems, one should have a study. You can gain some invaluable information from the study. First, check your Dr's credentials. Make sure (s)he is Board certified here: http://www.absm.org/Diplomates/listing.htm . This truly is important as anyone can...
  28. O

    Dr Klimas Recent Lecture ME Awareness Day (+ve XMRV paper coming)

    Interesting bit about Cortisol. So the first line of defense against stress does not work as it should, just as the NK cells do not function in the Immune system as they should. A bit like trying to fight a war when the first line of defense is bombers, and they are all out of commission!
  29. O

    Orthostatic HypERtension?

    This is a very good article explaining way hypertension may occur. I have snipped out a bit re Mast Cells. http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html
  30. O

    Is standing tiring but not dizzy when you stand up? Get tested for treatable OI!

    Fern.... one of the issues with salt is that those of us who have the hyperadrenergic type often have high BP. I understand that is not a problem for you and it wasn't for me either. Nurses who were not familiar with me often though their cuffs weren't working correctly. But there is more to...