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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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  1. P

    Response to Prednisone?

    I've been taking vitamin D for a few years now, I did test low around a decade ago. Don't know if I ever had cortisol tested, thryroid panel was normal years ago. I don't have back problems during the day, I work as a truck mechanic so I am on my feet all day at work. But lying down in any...
  2. P

    Response to Prednisone?

    I've used saw palmetto in the past but not the others. It started with a bunch of minor problems back 20 years, I realized much later I had muscle pain symptoms as a teenager. First major symptoms were muscle pain from working out along with idiopathic anemia, low testosterone, high trigs. Then...
  3. P

    Testosterone supplement?

    From what I've learned after a year on TRT, clomid should only be used to see if it can kick start natural testosterone production and then stop taking it after symptom relief is reached. If testosterone drops back to subpar then TRT should be looked at. Clomid and arimidex have risks for long...
  4. P

    Getting rid of PPIs (acid blockers)

    Its the Gaviscon Extra Strength liquid form, I keep a bottle of it in the fridge for any nighttime reflux. Those are rare now, the bottle has lasted so long that its expiration date is next month so I will buy a new one soon :D
  5. P

    Getting rid of PPIs (acid blockers)

    I see this is an older thread but I had the same experience of wanting to stop PPI's after a decade or more of being on them. Has anyone tried Gaviscon? It acts as a barrier against reflux but tastes like crap so I only use it for the really bad reflux. I used it and Tums to soften the reflux...
  6. P

    How did you get diagnosed with neuropathy?

    I have told my past doctors of nerve jolts at night where an itch turns into bam! Went on carbamazepine then currently oxcarbazepine the past few years, its helped. Pain symptoms became more spine centric so previous neuro ordered MRI of upper and lower spine earlier this year. It found...
  7. P

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

    Might even be scoliosis of some sort, maybe have a doctor look at it if you have back problems.
  8. P

    Burning in spine

    I second seeing a doctor. I've had burning spine/neck/back at night and mornings for a loong time. Finally got a MRI done of the spine done earlier this year and I have cervical scoliosis (neck) and arthritis/spondylosis of the spine along with suspected radiculopathy.
  9. P

    Did I just slam the door on a PEM episode?!

    This is a thread from way back :D If high dose coq10 helps, try vitamin B2 and l-carnitine into the mix if you haven't done that before. Its the basic mitochondrial cocktail and its probably kept me going the past few years. I've also started taking a water soluble coq10, licensed by Tishcon...
  10. P

    Just got my flu shot!

    I always try for October for the flu shot. I've been told that its good for 6 months protection, I remember getting sick in June during warm weather and the doctor said it was the flu.
  11. P

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

    I brought my borescope from work and was able to do a view of the hiney regions, I have a sacral dimple like the middle picture. I have a mild rightward rotatory scoliosis at the neck and spondylosis along the whole spine.
  12. P

    California fires

    Don't know if there are any current power line projects but the SDGE Sunrise Powerlink thru the east county was sketchy from the beginning. There is stuff being done underground along the 15 right now but I don't know if power lines are involved. In SDGE's favor they did step up tree trimming...
  13. P

    California fires

    Went thru the Cedar and Witch fires down in San Diego county, both times they came within a few miles but they were able to stop it. Those were both fueled by the Santa Ana winds that happen in September and October and dry out the underbrush and trees. We had a lot of rain the past winter, not...
  14. P

    Building a supplement regime for early onset cfs

    Your welcome! I keep a bottle of the 99% dmso and put a few undiluted drops mixed in with the skin lotion in a condiment glass bowl along with 3 or 4 advil gelcap contents. Then cover it with some aluminum foil and keep in the fridge usually if I'm not applying it every day. I agree, the only...
  15. P

    Building a supplement regime for early onset cfs

    Back in 1995 I had a bad allergic reaction to septra, hives, itching the whole bit. As it was the only antibiotic that was working on a drug resistant infection, they brought in a specialist doctor that controlled the dosage to where I could continue on septra treatment. So when the literature...
  16. P

    Building a supplement regime for early onset cfs

    For me thiamine is something I have to be careful of due to its sulfur content. MSM and DMSO the same, within a day or two tiredness, sleepiness and postnasal drip. Which is strange, have had temporary improvement on thiamine before.
  17. P

    Building a supplement regime for early onset cfs

    I think we've discussed collagen before? I mentioned collagen over amino acids as I've seen improvements with the former. I like the Great Lakes brand, tried a couple other brands but with Great Lakes I see improvements. Whether its gelatin collegen or collegen only I don't know, I do remember...
  18. P

    Building a supplement regime for early onset cfs

    The basic mito cocktail consists of B2 riboflavin, coq10 and l-carnitine, along with supplements tailored to the person. If your symptoms are sulfur related I would recommend trying molybdenum to see if it helps. Some supplements and B vitamins are sulfur based and because I am sulfur...
  19. P

    Anyone try green tea

    Green tea extract helps lipolysis, the breaking down of triglycerides into fatty acids used for energy by the body (simple explanation). This review shows GTE and caffeine helped athletic performance. https://pubmed.ncbi.nlm.nih.gov/27465721/ I have super high triglycerides and have been...
  20. P

    Started Rituximab at OMI/Center for Complex Diseases

    Yes they were, I wonder should I contact them to correct the other population data? Thanks again for this link, when I have a few free hours I want to go thru thru the website and the linked sites.
  21. P

    Started Rituximab at OMI/Center for Complex Diseases

    At the time in 2014, I thought it ME/CFS a possibility but I was looking more for interpretation of my 23andme results. PR was one of the few sites talking about that. wigglethemouse hit the nail on the head about Kaiser. Exactly! I had been pushing my doctors the last 15 years something was...
  22. P

    Started Rituximab at OMI/Center for Complex Diseases

    I don't have ME/CFS, its not a diagnosis in the US and especially for Kaiser Permanente HMO that I'm a member of. What I have is an unknown non-inflammatory myopathy in my right leg found by muscle biopsy in 2014, the year I joined this forum. The working diagnosis is necrotizing autoimmune...
  23. P

    Started Rituximab at OMI/Center for Complex Diseases

    Ok I didn't notice you had a link to descriptions of each level until now. Basically without writing a book it would veer from moderate to severe with maybe a day or two of very severe when it got very hot. Much of the time was having a various mixture of moderate and severe symptoms, a lot...
  24. P

    Started Rituximab at OMI/Center for Complex Diseases

    Not quite that bad except maybe the first couple times I had PEM in hot weather, had to stay inside the house to recuperate for a couple of days just sleeping and not moving. Put it this way, I barely had enough energy to put stuff away and go inside and I felt like I could collapse at any...
  25. P

    Started Rituximab at OMI/Center for Complex Diseases

    Some of the criteria is very subjective but let me try to quantify it, some of them overlap. 1. fatigue- very severe and its improved to severe/moderate. I've learned to know how much I can do before I hit the wall but sometimes I miss. 2. PEM- very severe during the start of hot weather...
  26. P

    Started Rituximab at OMI/Center for Complex Diseases

    Ritux has helped with lessening of symptoms overall, I can tell during the last month before each treatment that its worn off. It also seems to have slowed or stopped the muscle necrosis in my leg where the myopathy is, doing it every 6 months. On the Canadian criteria, I have met all the...
  27. P

    Started Rituximab at OMI/Center for Complex Diseases

    Been on rituximab for 2 years now and scheduled to do an infusion next month. Of course ME isn't a diagnosis in the US, when I joined PR in 2014 I had no diagnosis and no idea of how much the body can be screwed up lol And now they've found I have myopathy, neuropathy, scoliosis, spondylosis...
  28. P

    Mitochondrial and bioenergetic dysfunction in trauma-induced painful peripheral neuropathy

    [/USER] Who knew? lol Been on Losartan for a few years now, if its something that helps neuropathy I guess I will stay on it even if BP drops on the TRT I started this month. Have you tried the mito coctail or variants of such? B2, coq10 and L-carnatine as the core ingredients. Having done...
  29. P

    Help with CoQ10: How much ubiquinol should I take per day? Recommended brands? Getting ubiquinol through the NHS for free? (I am in the UK)

    Do you have access to Eufortyn made by Sharper Therapeutics as a prescription medicine? It is a water soluble coq10 marketed in Europe for high cholesterol and may or may not be prescription only, I see its listed on Amazon UK and Ebay. There are studies showing better absorption altho many are...
  30. P

    Attempting to identify members of my subgroup - Subcutaneous Fat Loss

    Acquired lypodystrophy, I see now it was mentioned upthread. I would suggest antibody tests for virus and autoimmune issues altho I couldn't tell you which ones they should be. I have super high triglycerides, the geneticist I saw said its from a lipodystophy. I don't have selective fat wasting...