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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. temple88

    Jarred Younger on CFS subgroups (video)

    I was in the first cohort of this study and cannot for the life of me remember the questions I had to answer every day. We had a tablet sent home with us and every morning and every night had to answer a series of questions about how we were feeling. I think there were questions about more than...
  2. temple88

    Low dose Naltrexone

    I am envious too. The one thing that fixes me is high dose clarithrymycin. The one thing that crashes me the worst is LDN. I know how you feel.
  3. temple88

    March for science Protests

    I attended the march in Birmingham, AL. My job is NIH funded so I was glad to be a part of it.
  4. temple88

    Unexpected antibiotic reaction

    Thanks. I added it there too with a caveat that it had likely already been posted. Incredibly interesting lines of thought!
  5. temple88

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I ran into an article discussing mTOR and macrolides earlier today. Not sure if it's been posted yet. Click to download the file if you want. https://www.researchgate.net/publication/269702488_Azithromycin_suppresses_CD4_T-cell_activation_by_direct_modulation_of_mTOR_activity
  6. temple88

    Unexpected antibiotic reaction

    Clarithromycin is the only thing that has ever completely resolved my symptoms although the effect only lasts about a week. I found an article on macrolides and mtor earlier...
  7. temple88

    I need your first month/season/year of illness for research please?

    November 2004. One week after my honeymoon in Northern California.
  8. temple88

    VIDEO: 2017 Resolutions - ME/CFS & FM Researcher Jarred Younger - UAB

    I just did another MRI for them Tuesday night. His entire team is really wonderful to work with.
  9. temple88

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Very true. If I knew the mechanism involved, I'd be well and on my way.
  10. temple88

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I find this interesting. High dose clarithromycin (also a macrolide-same class as azithro) is the only thing that has ever reversed my cfs. And I don't just mean it helped, it completely eliminated all symptoms and I was perfectly well. Effect lasted a week. This has happened twice in 12 years.
  11. temple88

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I find this interesting because I have CO2 values below normal ranges consistently and I don't hyperventilate.
  12. temple88

    Exploring the potential role of the Nurse Practitioner within a care path for patients with CFS

    I will graduate NP school in August. I appreciate you posting this!!
  13. temple88

    Alternatives which work like Rituxan

    At this point, anything is possible! I don't think that would explain the immune-related symptoms of feeling fluey, chills, swollen lymph nodes, etc though so I don't think I'm going to keep pursuing that path. Good luck at your appt and happy holidays !
  14. temple88

    Clostridium Butyricum - A Game Changer?

    Honestly, I tried it again to see if it had been a fluke but same results. I haven't taken it in well over a week at this point and I'm still having issues! Good grief.
  15. temple88

    Alternatives which work like Rituxan

    Mestinon stops the enzyme acetylcholinesterase from breaking down acetylcholine which isn't readily available in MG, hence the muscle weakness. Problem is, if you have too much acetylcholine on board then that also causes muscle weakness. What happened in my case is lack of acetylcholine isn't...
  16. temple88

    Alternatives which work like Rituxan

    I can't say it wouldn't help you, just offering my experience. The good thing is mestinon is very fast acting so you'll know very soon after trying it if it's going to make a difference for you.
  17. temple88

    Alternatives which work like Rituxan

    I tried mestinon over the summer as my doc suspected MG. My usual time to muscle fatigue/burning/turning to cement is about 20 seconds. On mestinon it was about 2 seconds. It definitely didn't help me and my lab work came back negative. Single fiber studies were also negative so as usual...
  18. temple88

    Clostridium Butyricum - A Game Changer?

    I just tried AOR probiotics as a way to ease in to the clostridium b but had I had terrible stomach cramps and would have to jet to the bathroom.
  19. temple88

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    FWIW, my onset was PEM but I was fine as long as I didn't exert myself...until I got pregnant. My entire pregnancy was a 'crash' and from the day I delivered I had brain fog, joint pain, daily fatigue, etc. That was 8 years ago. I was also one of the 2 CFS patients in Younger's MRI pilot that...
  20. temple88

    methane breath test in Alabama

    Hi @SwanRonson ! Sorry for the incredibly late bump but this post came up when I was searching for something else and I also live in Birmingham. The McMinn Clinic can do this for you. If they don't have the right kit for this testing, they can order it. They have done several oddball tests for...
  21. temple88

    Solve webinar today, Thurs May 19: Dr Jarred Younger, "CFS & ME: Can we find answers in the brain?"

    Yes, I think my body temp was 98.1 when I was scanned. It was also FREEZING cold in the scanner so it probably dropped in the hour I was in there!
  22. temple88

    Solve webinar today, Thurs May 19: Dr Jarred Younger, "CFS & ME: Can we find answers in the brain?"

    I was one of the two CFS patients who participated in the MRI pilot study. I always wanted testing done while experiencing an exacerbation or crash but the day of the scan I wasn't at one of my lowest points. I was surprised to see I had the correlating high brain temperature. This is very...
  23. temple88

    Low dose Naltrexone

    @WildAtHeart The MD brought it up as he takes it himself and I was given the full 4.5mg dose to start with but I was too chicken to start there! I initially started at 3mg, then went down to 1.5, then 0.5, then even 0.1 (diluting in liquid). I was crawling toward the end of it all and so, so...
  24. temple88

    Low dose Naltrexone

    For what it's worth, I felt a little better on LDN for one day, then experienced a huge exacerbation of symptoms. Full on crash. So I tried different doses, skipping days, taking it at different times, etc and each time I had the same experience. This exact same thing also happened when I tried...