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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. J

    Article: The Stanford Initiative For Chronic Infectious Diseases (including ME/CFS)

    Hi Floydguy: You mistake my verbiage. My point was proper journalism and respect for Doctor Patient Rights; such as those stated in HIPPA. I commended Timaca for her and Corts Journalistic approach and told her so publically. I believe and trust she followed protocol and followed proper legal...
  2. J

    Article: The Stanford Initiative For Chronic Infectious Diseases (including ME/CFS)

    Hi Eric=- Cort has given an excellent overview of all the components of CFS/CFIDS/ME scattered throughout the website, so in answer to your question.....Yes...this issue has been discussed before on this forum. I disagree with you that you need XMRV to develop CFS......only because I believe...
  3. J

    Barrage of Information

    Have you been tested for the CFIDS viruses and co-infections? The co-infections alone can cause the symptoms you describe. Testing information along with Test codes, diagnostic codes and insurance billing codes are at VLG on VALCYTE BLOG. Any trusted MD can run these tests for you. Good Luck......
  4. J

    Comment by 'Julia Rachel' in 'Overwhelmed'

    I am so sorry for your sons condition and for your heartache. A mothers love surely plays an enormous role in going to any lengths to get their child treated. My son and I both have this disease. We went to over 99+ doctors in order to get diagnosed and treated and traveled thousands of miles. I...
  5. J

    Article: Dr. Mikovits on XMRV: The Sweden Talk

    Papers take time and the obvious protocol was to file the patent they did within the past 10 days.....listing important key players such as the DOD. The testing methodologies are just an astounding breakthrough.
  6. J

    Comment by 'Julia Rachel' in 'Transforming NIH: Mangan Sets up NIH Email Listserve for the ME/CFS Community'

    Dear Sensing Private:The NIH Trans-Working group is a governmental mandated entity that has been appointed to look at why the CFSAC oversight committee has not done their job. A working group is just that. It is not a "hearing"....it is a meeting designed to appease questions that originated and...
  7. J

    Orthostatic Intolerance

    waHT IS CAUSING oRTHOSTATIC iNTOLERANCE? The underlying factor is a virus....HHV-6A...when this is treated..the OI dissappears for good.
  8. J

    My recovery story

    SO WHAT i AM HEARING IS THAT THE OPPORTUNISTIC INFECTION "mICOPLASMA" TOOK OVER AND I AM WONDERING IF YOIU COULD SHARE HOW THIS WAS TREATED, bEST, jULIA!
  9. J

    Rotation diet - need input please

    tHE alt ROTATIONAL DIET IS OUR bIBLE AND HELPS WITH OUR SYMPTOMS...WE DO 4-6 MONTHS ON AND 2-4 MONTHS OFF......THIS IMPROVED OUR HEALTH BY 15%+! i CAN SCAN THE DIET AND SEND IT BY FLASH DRIVE IFYOU WANT IT...IT IS A pHYSFCIANSNCOPY.....
  10. J

    All the different test's, can we list them?

    I write a blog called VLG on VALCYTE blog. iF YOU SCROLL DIWN A FEW BLOGS....I give information as to what laboratory tests to have doneAT QUEST LABS ONLY, I LIST THE ACTUAL TEST CODE numbers and the insuranxe code Billing numbers.yOUR md CAN GIVE YOU A LAB SLIP TO TAKE TO QUEST LABS TO HAVE...
  11. J

    Article: The Stanford Initiative For Chronic Infectious Diseases (including ME/CFS)

    Hi Timaca! Great job with checking with June and Montoya's staff. Kudos to you for proper journalism. I am pleased protocol was followed and maybe a 10 day waiting period in the future may be warranted. So many of Montoya's patients admire and look forward to all of his correspondence. Once...
  12. J

    Article: The Stanford Initiative For Chronic Infectious Diseases (including ME/CFS)

    You are not understanding the situation. This is NOT a trial study. These are long term patients of Dr. Montoya who deserve the respect of receiving this news first hand from their trusted Physician.
  13. J

    Article: The Stanford Initiative For Chronic Infectious Diseases (including ME/CFS)

    Hi Cort: I would like to know how you came about this letter that you published from Stanford on Dr. Montoya's work in progress. Patients were mailed this letter, however it arrived days after your posting of this article on your website. Did you receive this information via a press release...
  14. J

    Comment by 'Julia Rachel' in 'Azithromycin & Mycoplasma'

    The strain most commonly tested for in CFS/ME/CFIDS is Micoplasma P......if you want the test code....it is in my blog (don't have it on this mobile device....) I was on Azithromycin for 18 months for Micoplasma. I started at over the highest limit able to be recoded, so we do not know how high...
  15. J

    Comment by 'Julia Rachel' in 'Hi From TX-Q.about CFS & Hep C'

    i've never heard of Hep C evolving to CFS. CFS takes A) A genetic Predisposition plus B) A virulent trigger to activate 65-70% of CFS cases involve Viral Reactivation with EBV, HHV-6A and possibly CMV. A plethora of co-infections can trigger the CFS...as well as Mold & Toxins...
  16. J

    I Remember Me/Stephen Paganetti

    Hi Laurel! Has anyone found out anything about Stephen as of yet?
  17. J

    Comment by 'Julia Rachel' in 'A Drug for ME/CFS? The Rituximab Story'

    Hi Cort.... This article reminds me of my plight with arthritis and the meds I've used such as Methotrexate and Enbrel for YEARS. I have the wild theory that some of of us with CFS are have over-reacting immune systems and some of us are having under reacting immune systems....I am just...
  18. J

    Comment by 'Julia Rachel' in 'Happy Holidays??? CFS and the season.'

    I was holding it all together until you mentioned the one eyed dog, then I LOST IT! And the Lyme? OMG.....I wish you lived closer....I would have you out to the ranch for a PEACEFUL Holiday where you could eat, sleep, wear PJ's and be Merry. I can TOTALLY relate to the stressors you...
  19. J

    Please Tell Me Your Valtrex + Valcyte Story

    Hi Alice: My son has been on Valcyte for 24 months for HHV-6 and EBV. I have been on Valcyte for 18 months for HHV-6,EBV and CMV. I have also been on antibiotics for 18 months for micoplasma. I may have 2-3 other co-infections which they are just now discovering in me due to new virus...
  20. J

    Cfids/cfs/me

    Hi There: I think CFS stands for Chronic Fatigue Syndrome and the diagnostic criteria are met by 6 definable symptoms. CFIDS stands for Chronic Fatigue Immune Deficiency Syndrome and meets the 6 symptomatic criteria for diagnosisof CFS but also has a viral component, known as viral reactivation...
  21. J

    Article: My ME/CFS Story: from the Amygdala Retraining On by Cort Johnson

    Hi Cort: For all of us that have made the self enlightenment journey, many of these systems give us tools which are utilized in some form or another. I was around Warner when he started EST back in the late 70's and Landmark in my opinion is a great improvement and offshoot. I've delved into...
  22. J

    Comment by 'Julia Rachel' in 'Just Diagnosed, Insulin Resistance!! now too.'

    Do you have ANY thyroid problems in your family? Thyroid Disease is genetic, can skip a generation but if you do, you may want to see an endocrinologist RIGHT AWAY. Certain Types of Thyroid Diseases can cause Diabetes and when Insulin is used, the body will actually reject it due to the thyroid...
  23. J

    Thyroid and Blood Pressure Questions

    I would get re-checked by an endocrinologist for thyroid disease if I were you. Better safe than sorry since you have the short 5th digit and have familial thyroid issues. If you have CFIDS, thyroid disruptions can make things MUCH worse. Also...the basic TSh and T-4 panels run will show normal...
  24. J

    Thyroid and Blood Pressure Questions

    The short fifth finger does not increase genetic risk. The gene is already inherent. This symptom It was a noticeable and recorded deformity in thousands of patients studied at Oxford and in the United States over the past 50+ years, noticed by Dr. Catz who published a paper on the finding. In...
  25. J

    Thyroid and Blood Pressure Questions

    Heart Palpitations are consistent with Hyperthyroidism in some cases. There are MANY forms of thyroid disease. One of the leading experts in understanding the role of T-3 absorption, Dr. Boris Catz of Beverly Hills, CA came up with a simple way of self diagnosing Hashimotos Thyroiditis, which...
  26. J

    UK Study - Pediatric CFS

    I'd like to see the Pediatric Viral Titer Report/findings. Who tested positive for EBV, HHV-6A, CMV and co-infection such as Micoplasma, Lymes, Babesia, Borrelia and Chlamydia P? Theses are all scientifically proven to be linked with CFS. I vote to get out of the dark ages and move forward...
  27. J

    Dr. Cheney comments on the XMRV workshop

    Incredibly Insightful and well worded for understanding. The cervix connection intrigues me greatly. So many women opt to leave their ovaries in as well as the cervix when doing a hysterectomy, CFIDS patients now may rethink this philosophy with future incoming information. My son has CFIDS...
  28. J

    Looking to Interview Recovered ME/CFS Patients

    This is a noble and worthwhile study. However, Until we know the subsets involved with CFS, I think the figures will be difficult to calculate, detect and decipher. Are we talking subset 1) with symptoms only: subset 2) EBV and possibly Lymes and/or subset 3) with Viral reactivation (HHV-6A, EBV...
  29. J

    New Alberta XMRV Study

    I am curious about the scientific journal article published by Dr. Jose Montoya showing a correlation between high EBV and High HHV-6a titers at 3X greater positivity or more being linked to the subset of CFS known as CFIDS?VICD. And, the positive results being reported via this study by using...
  30. J

    Removing Fallopian tubes could cut cancer deaths

    This is actually a life saving article as many female patients with CFS/CFIDS also have GYN problems including Endometriosis, Fibroids, Abdominal Masses and Ovarian Masses. 7 Days ago, I had robotic surgery to remove tumors from my abdomen, my uterus and to excise masses away from my organs and...