• 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

    anyone with constant pulsations in head?

    Had the same thing...For me, It was elevated cerebral spinal fluid pressure. I was first told to go to an ophthalmologist to look for papilledema (swollen optic nerves-hence the light sensitivity), then had a lumbar puncture that confirmed my opening pressure was more than 3 times what is...
  2. L

    When is the Lipkin pathogen/gene expression study due out?

    I was told 'hopefully'next year.
  3. L

    Corinne at Dr. Peterson #7: Driving Miss (Wilted) Daisy…Chains Required! (March, 2012)

    Thank you for this great article Corinne and Cort! We have both had similar experiences and I feel like I've re-lived my visits! I do hope to run in to you sometime! :) Please take care of yourself and I wish you the best on your upcoming appointment.
  4. L

    weight Gain

    Same problem here...Had my leptin hormone checked and it is high. I think we crave carbs to produce energy, but our metabolism is completely out of wack. I think our bodies go into protective mode, storing fat for possible needed energy. I eat a pretty healthy diet, and still gain weight.
  5. L

    electrolyte drinks

    I've been trying to add electrolytes to my diet as well. I've been drinking Smart Water and Trader Joes also has a plain water with added electrolytes. I'm not a fan of sweet drinks, especially ones with artificial flavors, colors, etc...The recipe listed above sounds interesting. Might have to...
  6. L

    Article: Empty Sella Syndrome and CFS: A patient study

    I've had lumbar punctures performed by a couple of neurologists, but my best experience was by Dr. Peterson. He has mastered it, and has very helpful directions to help get you back on your feet post procedure.
  7. L

    Article: The Corinne - Dr. Peterson Chronicles: Followup #2 (Sept 2010)

    My IL-8 has been as high as 8000. Right now I hovering around 860.
  8. L

    Article: Empty Sella Syndrome and CFS: A patient study

    I'm a woman :):victory:
  9. L

    Article: Empty Sella Syndrome and CFS: A patient study

    I have a partially empty sella, and 2 or 3 MRI's to contribute if you want them. I never presented with lesions on my brain, but have had the high CSF pressure (480 at my worst) and my SPECT scan revealed low circulation in my temporal and frontal lobes. All connected?
  10. L

    Loud Heartbeat in Ear

    I've had this problem as well...It was at its worst when my CSF (cerebral spinal fluid) pressure was elevated. It is also known as hydrocephalus. The brain inflammation causes vessels to swell and push against structures related to our ear. I can only describe the sound as a heartbeat sound...
  11. L

    Anyone ever experience extreme kidney pain?

    An ASO Titer test is a simple blood test to look for Strep in you bloodstream. ASO means "Antistreptolysin O." It is scary to think that my nephrologist was days away from ordering a kidney biopsy! They started to think I had glomerulonephritis or lupus nephritis, but thankfully they found the...
  12. L

    Anyone ever experience extreme kidney pain?

    Hi Lannie, I had similar issues when this disease was severely attacking my body. At the time, I had severe upper right quadrant pain, and a burning ache in my kidney areas. When they would take a urine sample it showed there was blood in my urine (sorry about TMI :), although it was...
  13. L

    Headaches!

    I'm joining in on the headache club. I think it is a combo deal....First, I think a lot of it has to do with elevated cerebral spinal fluid. Many patients with ME/CFS have elevated pressures when they have a lumbar puncture. This pressure increases many symptoms such as light sensitivity, eye...
  14. L

    XMRV & T/B Cells. What do they mean to each other?

    Hi, I'm kind of confused on this subject. I've read that many who are XMRV positive also have activated T&B cells. Is this always the case? Mine are not, so I'm just trying to figure out the connection between the two. Can anyone share a link or info on this subject? THanks :)
  15. L

    Klimas vs Peterson - where would you go?

    I am a patient of Dr. Peterson's and I think he is an incredible physician and person! I'm sure Dr. Klimas is as well. Either way, you will be in good hands.
  16. L

    Enteroviruses and ME/CFS

    Timaca, I am also a patient of Dr. Chia and on Equilibrant. What dosing are you currently at? I'm currently up to 3 a day, but just had somewhat of a relapse. My Coxsackie B titers (1-5) are all 1:64 and I'm feeling pretty run down. I've had a hard time increasing the dose, but feel I need...
  17. L

    Stem Cells

    Does anybody know if stem cells from banked umbilical cord blood has been tested for treatment? Is this treatment even possible?
  18. L

    CROI 2010: CDC Finding A Different Strain of XMRV

    Yes, very interesting. Maybe it will help to make sense of the different degrees of illness that those who are XMRV positive have. Thanks for sharing.
  19. L

    A Visit to Dr. Peterson V: Tests and the CFS/ME Bond by Corinne (conclusion)

    TY Corrine and Cort for putting this all together. I could relate with everything you went through-even the lumbar puncture and walking with my head hanging between my legs :), but I could never put it in to words like you! Thanks for sharing the gift of your story, and please give us an...
  20. L

    The Hammer - Vistide and Dr. Peterson

    Hi, I'm also a paitent of Dr. P. I've had 2 VO2 Max tests... Both were low. The first was 17% and the second was 19%. It was explained to me (whether I fully understand it is the question) that it was a form of mitochondrial myopathy-or lack of metabolizing oxygen as we can all relate. I was...
  21. L

    lymphocytes

    I've also had the mysterious upper right quadrant pain on and off for years. Already had my gallbladder and appendix out. Still have the pain and liverenzymes go up and down. Pain is increased when I over exert myself or a flare is coming on. I now have an enlarged liver, so keeping an eye on...
  22. L

    Mother and son XMRV positive by culture- rest of family Negative! - Personal story

    Someone asked if my son had the low NK cell function... The answer is no. His NK cell function is in the mid 30's. So my child who is XMRV negative has the very low NK cells. Feeling a bit on edge to say the least. Yes, these tests were done by VIPdx.
  23. L

    Mother and son XMRV positive by culture- rest of family Negative! - Personal story

    Revision!! Change or results here... My son (1st born) does have XMRV by culture. So, my husband and daughter do not have it. He is not symptomatic. So sorry for the screw up! MY husband thought the doctor said one had it, but I had fibro brain and just got the hard copy results today. I'm sad...
  24. L

    Mother and son XMRV positive by culture- rest of family Negative! - Personal story

    It is interesting. I was not symptomatic when I had my children, but shortly after my second I had a 'nasty flu'. I then was functional, but extremely tired all the time, and it just kept going on from there. I was officially diagnosed after having a year long strep infection in my kidneys...
  25. L

    Mother and son XMRV positive by culture- rest of family Negative! - Personal story

    There is so much work that still needs to be done in the CFS community! It seems every time I turn a corner thinking I have an answer, I end up with more questions. I, unlike a lot of people, hoped that I did not have XMRV. Unfortuantely, I am positive by culture. What is really interesting is...
  26. L

    XMRV Positive(Latent)Negative(Active)

    I guess my question is: What does this mean? Help with the translation :) Thanks!