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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. Prefect

    Craniocervical Instability (CCI) question

    @Dr.Lynne I have a lot of balance, dizziness type problems and spend a lot of time trying to keep my head still which creates a lot of neck tension. Doctors have told me I have low amplitude high frequency head tremor. No decreased range of motion, no frequent migraines. 52 yrs old, been told I...
  2. Prefect

    Craniocervical Instability (CCI) question

    I recently had a cervical spine CT done and was wondering if there's any smoking gun in the findings that would warrant getting examined for possibility of CCI? The CT was done for an unrelated issue. "The alignment of the cervical spine is maintained. Multilevel degenerative disc disease is...
  3. Prefect

    Brain Blood Flow Reductions

    @wabi-sabi thanks for the links. They seem to concentrate on blood flow response to upright posture. My SPECT scan was done with me lying down. With respect to the carotid and vertebral artery blood flow, this was the technical description of the test: Flow images, 2 seconds per frame, for...
  4. Prefect

    Brain Blood Flow Reductions

    Is there any information on which part of the brain has reduced blood flow in CFS? I had a SPECT scan done and the only reduction in my case appears to be in the left frontal lobe (a slight asymmetric decreased activity in the left frontal lobe). My MRI does not show any structural changes...
  5. Prefect

    Mycotoxin-Is this a worthwhile pursuit?

    @out2lunch why did you stop? Did you not get a good response?
  6. Prefect

    Mycotoxin-Is this a worthwhile pursuit?

    Did you take any anti fungals or just cholestyramine?
  7. Prefect

    Mycotoxin-Is this a worthwhile pursuit?

    @Booble this guy's a Toronto internal medicine specialist gone integrative. So he charges privately even though doctors are covered in Canada because his work is out of the box. He's been on the news here in Canada for his treatment of Lyme patients with Disulfiram.
  8. Prefect

    Mycotoxin-Is this a worthwhile pursuit?

    @vision blue so a bit of background. 25 years ago fell ill, liver enzymes shot through the roof, tested negative for all hep viruses. Around the same time I had some dental work done. I stayed sick with the same neuro symptoms I specified on this thread for about a year. Got diagnosed CFS by an...
  9. Prefect

    Mycotoxin-Is this a worthwhile pursuit?

    @vision blue what is the OAT test? No my maxillary sinus is not tender. I have no sinus symptoms, no pain, no pressure, nothing. That's why I was shocked by this CT scan. I have nasal stuffiness (no discharge) when I lie down, I wear breathright strips to sleep.
  10. Prefect

    Mycotoxin-Is this a worthwhile pursuit?

    @Hip thanks for this link, I just tried it. I scored 94%, and it said I do not suffer from a health condition that affects my visual system. This shocks me, because a lot of my symptoms revolve around my eyes. My vision is jumpy, I spend a lot of time trying to hold my eyes in abnormal...
  11. Prefect

    Mycotoxin-Is this a worthwhile pursuit?

    Been sick for 5 years with non-specific neuro symptoms. No body fatigue or PEM. All my symptoms are in my brain. A doctor recently wants me to take the Mycotox Urine test. He wants me to take Fluconazole and Cholestyramine for a few days before my test to ensure any "mold trapped in my cells...
  12. Prefect

    Anyone feel better after a large meal?

    @robson have you tried Tryptophan? I haven't but I understand large meals raise insulin levels which causes more Tryptophan to enter the brain. It would be interesting to see if Tryptophan would create the same effect you're describing.
  13. Prefect

    Anyone feel better after a large meal?

    @Artorias is there a way for diabetics to measure their blood insulin level? I ask because there may be a connection between insulin and how we feel after a meal that's not necessarily related to blood sugar.
  14. Prefect

    Anyone feel better after a large meal?

    @Davsey27 I don't eat one meal a day. My appetite increases as the day goes so my portion gets bigger by dinner time.
  15. Prefect

    Anyone feel better after a large meal?

    I find a lot of my head symptoms don't necessarily go away but improve dramatically some times immediately, but most times around 1/2-1 hour after eating a large greasy meal, especially if it contains massive amounts of meat and good carb content. It has nothing to do with blood sugar, because...
  16. Prefect

    Did your symptoms begin after Glucocorticoid treatment? (POLL)

    But I stopped using the nasal steroid a couple of months into my relapse and haven't used it since. My relapse has lated close to 5 years. I don't know.
  17. Prefect

    Did your symptoms begin after Glucocorticoid treatment? (POLL)

    A lot of my brain/mental symptoms relapsed after using a nasal steroid spray, which make absolutely no sense to me and is likely a coincidence, because of the minuscule amount of steroid that would enter my body from a nasal steroid. It's possible it may have had a direct path to my brain...
  18. Prefect

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

    @lenora thanks for your response. Did you have headaches?
  19. Prefect

    Pupil Hippus Anyone? (Pupils constricting/dilating)

    Yup I do. Some hippus is normal, but too much is indicative of many diseases. Also, really old medical textbooks state hippus as a symptom of Neurasthenia. Neurasthenia is what CFS/ME was called in the early 1900s.
  20. Prefect

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

    Can you have craniocervical instability without headache or neck ache? I'm suspecting this because: -I constantly feel like objects around me are swimming around, especially when I'm standing. I get some relief by crossing my arms while standing, which I guess is because it stabilizes my...
  21. Prefect

    How much better do you feel at night?

    @sb4 What you’re describing could be reactive hypoglycemia, which is an over shoot of insulin in Response to an increase in blood sugar from simple carbs and sugar. Just overshoot causes temporary hypoglycaemia and some people which can create all the symptoms you describe
  22. Prefect

    How much better do you feel at night?

    @sb4 Your idea on night time insulin resistance is interesting. Is there anywhere I can look this phenomenon up? Buy this argument blood sugar would be higher at night as the sugar is not being burnt Buy insulin for fuel?
  23. Prefect

    How much better do you feel at night?

    I feel better at night I feel better with a big greasy meal with lots of meat in it I feel better with alcohol
  24. Prefect

    Positive for Bartonella...and I have so many questions!

    There is a doctor in Canada treating Lyme patients with Disulfiram which is a drug against alcohol abuse but seems to be very effective against Lyme. I vaguely remember seeing somewhere that it’s also effective against Bartonella. I have also tested positive for Bartonella and don’t know what to...
  25. Prefect

    Speech problems

    Have you been taking a new med or supplement lately? e.g. Gabapentin can cause some of these problems.
  26. Prefect

    Why do we feel better at night?

    The melatonin angle intrigues me as well. I specifically feel better after dark, which is known to trigger melatonin secretion. I may feel less active, true, but a lot of my neurosensory and cognitive issues improve, I'm more relaxed, and able to concentrate more. As for cortisol, I've had my...
  27. Prefect

    Alcohol improves symptoms - anyone else?

    This effect is observed in a subset of CFS patients, including myself. Discussed previously here: https://forums.phoenixrising.me/threads/alcohol-helps-me.79256/ https://forums.phoenixrising.me/threads/oh-alcohol.55862/
  28. Prefect

    Long-Distance Interferon Signaling: Could It Explain ME/CFS?

    @Hip Is your nose Still stuffed up? I vaguely remember you mentioning on one thread that you managed to eliminate nasal stuffiness using NAG...?
  29. Prefect

    Impressive results from using GABA-B agonists. Why is this?

    Where do you get phenibut from? Unless you live in Russia it's not available readily in the west. And how is it different from Gabapentin or Lyrica? It's supposed to act on the same mechanisms but does it feel different?
  30. Prefect

    alcohol helps me?

    @sb4 but do you use a daytime augment to help your daytime symptoms? I know you take Remeron at night