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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. GlassHouse

    Has anyone been diagnosed with Primary Polydipsia (compulsive water drinking)?

    I drink 2 L/ day, I haven’t measured it precisely. I also drink 32 oz of regular water with Cromolyn, and 8 oz of decaf, but I’ll need to pee within 10-15 min of drinking it. The only way I can hold onto fluid is if it’s salts and sugars. I will pass out sitting down unless I chug the first 32...
  2. GlassHouse

    What do You think is your most disabling symptom?

    Hypersomnolence/ ability to stay conscious. I’ve slept 12-23 hrs a day for 10 years and am barely conscious during my “waking” hours. I’ve failed every stimulant medication. Time goes by so fast because I’m always asleep. I have severe global hypoperfusion and delta brain waves with my eyes...
  3. GlassHouse

    Has anyone been diagnosed with Primary Polydipsia (compulsive water drinking)?

    Dr. Alan Pocinki has been researching this in his dysautonomia patients. Our conversation was like this: Me: “I thought my tethered cord was getting worse because I have to pee at least every half hour. I got a urine hat to measure it because I was worried about retention but I’m peeing at...
  4. GlassHouse

    Can POTS cause heart palpitations (at night) ?

    Yes POTS absolutely does continue at night. Dr. Alan Pocinki has studied this. He treats me for this with beta blockers and I measure my heart rate using a WHOOP device (and I’ve also had 6 sleep studies).
  5. GlassHouse

    Poll: Do you have low vasopressin (ADH)? (Desmopressin / Blood volume / Symptom Reduction)

    I have no vasopressin and desmopressin is a lifesaver! It’s been my most helpful medication as I used to cry in the car because my bladder filled completely within 20 min of drinking any water. I urinate 3-4 liters a day instead of 6-7.
  6. GlassHouse

    What is the optimal dose/autoimmune dose of IVIG?

    I had gradual onset starting in Jan 2012 after encephalitis (now presumed HHV7 as I have spinal fluid and tissue samples from multiple years that are positive for HHV7 DNA). I got worse on an exponential scale over the last 9 years, so worse faster every few months. I’ve been housebound since...
  7. GlassHouse

    What is the optimal dose/autoimmune dose of IVIG?

    I do think it has been helping with blood pooling in my legs. They feel less heavy/ achy. I’m planning to do another lean test to compare to my previous results. During my last lean test my hands and feet turned purple and swollen and the rest of my body was a mix of red and white blotches, and...
  8. GlassHouse

    What is the optimal dose/autoimmune dose of IVIG?

    I get 35 grams per week. I’m 5’8” 145 lbs. I get the subcutaneous version (Cuvitru). It’s made a noticeable difference in my POTS but took around 5 months to notice the benefit (my standing heart rate is now around 90-100 instead of 150-200). I realized that something had changed when I wasn’t...
  9. GlassHouse

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I’ve been diagnosed with CCI and AAI by Dr Bolognese and Dr Henderson. I just finished talking with Henderson this morning. Most of my measurements are normal (CXA is borderline), but the translational BAI is 6mm (skull sliding over spine, CCI) I also have 12.8 mm translational motion of C1 on...
  10. GlassHouse

    POLL: Do You Have a Sacral Dimple on Your Lower Back? (Can be Medically Significant, and May be Linked to ME/CFS)

    I have a sacral dimple. Strangely it is the first place to get a hive when my MCAS became severe and I had fully body hives for months. I always thought it was an odd connection. I have really horrible low back pain, which I assumed was due to SI hypermobility, and nerve pain going into the...
  11. GlassHouse

    Research paper San Diego University HHV6 and Myalgic Encephalitis

    I wonder about this since I have clear documentation of active HHV7 infection but I get dangerously sick for months from all colds/ flus. Last year my husband had a cold for 3 days and was barely sick but I was bedridden for 4 months and developed a high fever. My whole life I’ve gotten very...
  12. GlassHouse

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

    This is interesting and I’d like to know more. I had active HHV7 in my spinal fluid and tissue from my stomach/ SI/ colon. I did IV Vistide for 5 months. I had to stop because, once Covid19 hit the US, the twice weekly safety labs became too much of a risk. I also felt way way worse on the...
  13. GlassHouse

    Anxiety over coronavirus

    I’m also quite worried about Covid19. I’m in the Sacramento area in CA and our local government has decided to waive the 14-day quarantine! They aren’t bothering with contact tracing or quarantines. Our local paper actually said that they aren’t bothering with containment just trying to mitigate...
  14. GlassHouse

    Crowd funding for Bhupesh Prusty

    I agree with you. I’ve been tested for hhv7 in the blood many times and it’s always negative, but I am positive in the spinal fluid and in tissue samples from my stomach, small intestine, and colon. I’d be interested to know more about his research. I’m on my 4th month of IV Vistide for the...
  15. GlassHouse

    How old were you when you got sick

    My reply got too long so I PM’d you so as to not derail this thread :)
  16. GlassHouse

    How old were you when you got sick

    I was 21 when I got encephalitis and then developed ME/CFS I had POTS/ dysautonomia since I was 12 and EDS type III since birth. And I was almost always sick with multiple viral and bacterial infections since I was born. No one ever thought it was strange I was constantly sick, was just told I...
  17. GlassHouse

    A message to you from Ron and Janet

    For those of us near the Bay how can we contribute blood and spinal fluid?
  18. GlassHouse

    A possible role for mitochondrial-derived peptides humanin and MOTS-c in patients with Q fever fatigue syndrome and CFS (Raijmakers et al 2019)

    You’re right! I’m mixing up my sheep illnesses. It’s been a while since my animal science days in college. I did not have Q fever, I had brucellosis. I also had tularemia. My animal exposure was very high since I did years of veterinary nurse work throughout high school and college, including...
  19. GlassHouse

    Sjogren's Syndrome- Dry eyes, mouth? get this one ruled out, or in!

    I test negative for Sjogrens antibodies and even did a lip biopsy which was negative, but I have severe progressive dry mouth and eyes. My eyes are degenerating at a fast rate (the ophthalmologist said I’m producing abnormal proteins in my tears and none of the right proteins. My tears are like...
  20. GlassHouse

    POLL: your cortisol levels

    In the earlier years of my illness my cortisol was off the charts high in the morning and then low-normal in the afternoon and evening. I also have hyper POTS that I’ve had since childhood. In recent years my cortisol is low in the morning and then immediately falls below the level of detection...
  21. GlassHouse

    ME caused by viral or auto immune encephalitis

    I’m a case of ME/CFS with chronic systemic HHV-7 infection, including HHV-7 encephalitis. I have delta brain waves while awake (slowest brain waves) on a QEEG and severe global hypoperfusion on SPECT due to the damage from chronic viral brain infection. My brain in the most affected but I’ve...
  22. GlassHouse

    Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

    I’m similar. My positives were pretty weak even though I have pretty severe POTS. I started blacking out from my POTS when I was a kid (11-12) and it’s only gotten progressively worse (I’m 29 now). My heart rate ranges from 37-210! My tilt table test was very positive and my heart rate was...
  23. GlassHouse

    Who else here is in their 20's?

    I relate so much to what you’ve said. I tell my husband that it’s a never ending cycle of grief because you’re constantly mourning new losses as you get sicker each year
  24. GlassHouse

    Who else here is in their 20's?

    I’m 29 and got really ill when I was 21. I’m in the atypical subset who gets worse over time and has pro-inflammatory cytokines increase each year rather than the immune exhaustion (although NK cells gave up, LU30 = 8 in 2014). I’m definitely getting worse at a much slower rate than when I was...
  25. GlassHouse

    Utility of testing cerebrospinal fluid for pathogens, etc?

    @Hip If I get another endoscopy/ colonoscopy I’ll see if they can send some tissue to Dr Chia for testing. Is he still using Oxymatrine to treat the enteroviruses?
  26. GlassHouse

    Utility of testing cerebrospinal fluid for pathogens, etc?

    The test was VirCapSeq-VERT. It allegedly can even detect viruses with up to 40% novel DNA. I have heard there is a metabolomics and proteomics component to Lipkin’s test but no one could tell me more at the time. I’m still waiting on results. The DeRisi test was similar except it included...
  27. GlassHouse

    Utility of testing cerebrospinal fluid for pathogens, etc?

    Hi @Dakota15 DeRisi was using Peterson’s bank of frozen spinal fluid for his research. I think a lot of researchers who want spinal fluid seek him out because he stores so much of it.
  28. GlassHouse

    Utility of testing cerebrospinal fluid for pathogens, etc?

    I was found to be positive for an active viral infection in my spinal fluid and that same virus was cultured from my stomach, small intestine, and colon years later. I’ve had active viral encephalitis and systemic infection with the same virus for almost 10 years. My progression into serious...
  29. GlassHouse

    Anyone had a muscle biopsy before?

    I’m so sorry, you’re absolutely right! I had a skin and not a muscle biopsy. My foggy brain confuses words so often. I was mixing up the skin punch biopsy for the SFN with the time years ago when I asked for a muscle biopsy for mitochondrial testing. I never got the muscle biopsy test I...
  30. GlassHouse

    Anyone had a muscle biopsy before?

    I’ve had two muscle biopsies on my leg done. They were positive for small fiber neuropathy. I haven’t been tested for mitochondrial issues.