• 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. chickpea

    Mitochondrial testing in the USA?

    I will respond soon, bad brain day just wanted to thank you for your responses!!
  2. chickpea

    Mitochondrial testing in the USA?

    @Learner1 Thanks so much for your help! Very interesting! I did the Genova Nutaval testing and nothing came up for me so my doc doesn't think I need testing. I am near the Mayo clinic in MN and see they have Mitochondrial testing there so I am tempted to ask for a referral. Man, why are all...
  3. chickpea

    Mitochondrial testing in the USA?

    Hi there, I currently reside in Minnesota, and I was wondering if anyone has any experience on getting Mitochondrial testing done? I have no idea where to start, but really want to see if I can get useful testing done to determine if this is a major issue for me and develop a treatment plan...
  4. chickpea

    Looking for other M.E. people in Ontario Canada

    Thank you both so much! I will look into that!
  5. chickpea

    Looking for other M.E. people in Ontario Canada

    Hi, Well after 5 years in the States my husband and I are moving back to our homeland of Canada. We are aiming to live in the Niagara/Burlington area for his new job. I am hoping to find fellow patients in the area. Please message me or post here if you do! Thanks, really trying to build my...
  6. chickpea

    Neuropsych testing is it worth getting?

    Thanks so much junkcrap50 that is so helpful! I too had the same issues shown on my SPECT. How were you able to get HBOT treatment? We have a facility here but apparently they only use it for wound recovery so I’m not eligible apparently.
  7. chickpea

    Neuropsych testing is it worth getting?

    Hi, I’ve had ME for 15 years, with obvious cognitive dysfunction. I am curious about neuropsych testing from the perspective of seeing if it would help me improve functioning if I could target the areas of my brain that weren’t working properly. I do not require the testing for disability etc...
  8. chickpea

    Unable to tolerate digestive enzymes, need advice! Major stomach issues.

    ME veteran, I have the usual leaky gut, suspected yeast overgrowth and IBS. I am on a pretty strict diet of no gluten, dairy, soy, sugar and Mainly fruits, vegetables, rice, oats, poultry and yogurt. My holistic doctor recommended I start taking digestive enzymes due to having a high fatty...
  9. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    I have looked into and it fits, but need to research more. It could explain my intolerance to drugs. I will discuss it with my doctor next month when I see her who is an integrative holistic medicine doctor so at least she will know of it – hopefully. Do you find once this is treated other...
  10. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    Could high levels of copper be an issue? I haven’t even started my program for detoxing that yet..... I just don’t know how I’m supposed to have any improvements if I can’t tolerate ANYTHING!
  11. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    Minimal sugar (just learned!) I am taking a break, but sticking with diet. This herx is just too strong, even at minimal dose.
  12. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    Imbalance. The out of range ones weren’t massive either. I still can’t quite believe what a reaction it’s caused.
  13. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    Oh, and I also did the GIeffects one and major thing was fecal fats high and some bacteria. I am on the low foodmap diet, but even stricter anti candida diet. I wonder if that is having a major affect? 3 weeks in.
  14. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    A series of tests run through Genova diagnostics, called NutrEval that looks at levels for yeast and fungal. I have been tested for celiac and know I don’t have that, although am currently GF.
  15. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    Thanks for the response! I tried diflican years ago and didn’t notice any symptom improvements. I seem unable to tolerate anything the last couple years..... How do you diagnose for MCA?
  16. chickpea

    Nystatin for mold/yeast - it is killing me, need advice!

    I’ve had ME for 14 years and my gut issues have gotten worse over the last few years. Some tests indicated that I may have mold/yeast issues going on in my gut. My doctor prescribe me liquid nice Nystatin because I have such a low tolerance to medications. Initially I started three weeks ago...
  17. chickpea

    Has anyone achieved remission or recovery from treatment by any doctor?

    Following
  18. chickpea

    Pyroluria Treatment Advice?

    Following as newly discovered this could be an issue for me.
  19. chickpea

    Heart issues - do you experience this?

    I am curious if anyone during their lifetime has been diagnosed by a doctor (ideally cardiologist) with: Paroxysmal supraventricular tachycardia (PSVT) Supraventricular tachycardia Wolff-Parkinson-White Syndrome (WPW) Or severe tachycardia
  20. chickpea

    Visual Midline Shift

    That is interesting. For the record, I've never experienced ear issues, either as a child or now. I think I have had this vision/balance/centering issue for awhile but really it's become full blown in the last few months. The Doc suspects it's related to the ME...I too wonder like Forbin...
  21. chickpea

    Visual Midline Shift

    Thank you so much for the response. I will keep my experience posted on this link. Hopefully I will find more answers as time goes on. Thanks for the link too, very helpful!
  22. chickpea

    Visual Midline Shift

  23. chickpea

    Visual Midline Shift

    I've had ME now for 14yrs and during the last few months developed new symptoms that relate to this. I am now trialing prism glasses and wonder if anyone has experience with this. My opthamolgist suspects, this Visual Midline Shift and my exophoria have potentially been going on for years and...
  24. chickpea

    LOW creatine kinase?

    @JaimeS - I wanted to see if you ever discovered any more about low CK level? Is there something we should be taking for this that may help with energy? I just got mine tested and it's low - 29 to be exact. I've had ME for 14 yrs, this was the first time it was tested.....
  25. chickpea

    SPECT scan results : it looks bad :-(

    @Dechi just read your post....my SPECT was from Dr Hyde to and had similar problems. I was actually relieved to have results that proved 'it wasn't all in my head' but was in my brain. Explained a lot of things for me..
  26. chickpea

    Florinef Question-Will Be Starting it-Need Guidance

    @taniaaust1 I've just read your post, and it's so useful as I'm about to start Florinef. Question, how much salt should I be taking before I start Florinef? Is extra on food enough, or do I need salt tablets? Thank you to anyone in advance that can answer this!
  27. chickpea

    Severe ME/CFS Homebound Study

    I had called them, as I live in MN. She had said, that we can do everything from home but that I would need to be seen for at least one visit. I'd call and ask.
  28. chickpea

    Severe ME/CFS Homebound Study

    Dr Klimas clinic is doing a study on those severely affected and are homebound. Must be able to travel to Florida for at least one visit. Precious G. Leaks-Gutierrez, MBA Clinical Research Project Coordinator Nova Southeastern University Institute for Neuro Immune Medicine 8501 SW 124TH Ave...
  29. chickpea

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    @Dechi I totally agree. That's great you got the scan, it will help for Disability route too. I'm now in the States, but try in keep in touch with Dr Hyde every time I go home. He really is in the know and I pray he will find something before he retires....or passes away, I feel like he will be...
  30. chickpea

    Is it worth the trip/cost to Dr Montoya Stanford Clinic???

    @Alvin2 Dr Bested was back in 2005-2007 when she had an office in Toronto, On. From what I can telll, she closed that office, moved to Vancouver to try and set up a ME office there and for whatever reason that is closed and I no longer know where she is or what she is doing sadly. Dr Hyde is...