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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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  1. Silence

    Oxaloacetate

    Is this something he sells or can it be bought online?
  2. Silence

    Body Don‘t absorbs any food anymore/ digestion shuts down

    Have you been tested for gastroparesis? With a gastric emptying study? Have you tried avmotukity drug to help constipation and food move faster .
  3. Silence

    Chronically Elevated Lactate Is this "normal" for CFS?

    Diagnosed conditions: CFS/ME 2014, MCAS, Ehlers-danlos syndrome, Low cd4 , low igg subclass 3, iodine deficiency - multinodular goiter, chronc diarrhea, Myopathy, Heart murmur Hello all. I've been feeling very poorly as of a few months ago. My heart rate seems very elevated and jumpy, My...
  4. Silence

    Nystatin timing - before or after food?

    Would you mind sharing your experience with the misdiagnosis? I am suspected of having Yeast overgrowth in my gut too. Symptoms and Testing for me which makes me believe candida is a problem for me--- Chronic daily diarrhea/malabsorption for years, Low CD4, low nk cell function elevated...
  5. Silence

    candida lab test

    Sorry I never saw a notification for this post or I may have missed it. I was in the same boat as you- LDN worked wonders for me in the beginning after a couple of years of use. I was only using .125 mg dose.-oral then moved to transdermal. Eventually I started noticing that my yeast issues...
  6. Silence

    Gallbladder sludge with pain- any suggestions. May need surgery.

    very stiff calfs that felt bloated. Then muscle pain and atrophy with difficult using limbs with loss of power. At first it was distal appearance, but now its affecting proximal muscles too. You can read a little bit more detailed description on how it started on this thread I created in 2016...
  7. Silence

    Gallbladder sludge with pain- any suggestions. May need surgery.

    Thank you all for your suggestions. I will keep them in mind and give some of them a go in a orderly fashion to keep track on what does what, especially the taurine, I've been low in taurine on my nutreval for a while now. But I have taken taurine in the past and it made my mind race and caused...
  8. Silence

    Gallbladder sludge with pain- any suggestions. May need surgery.

    I am in my 30s and have not had a muscle tissue biopsy yet. Going to get an MRI soon to look where to get it and check for muscle inflammation or fatty infiltration.
  9. Silence

    Gallbladder sludge with pain- any suggestions. May need surgery.

    So I have had gallbladder sludge for around 4 years now, and have had insidious symptoms like nausea and some right sided rib pain that I attributed to my CFS and ehlers danlos syndrome. But now I am getting more sever gallbladder pain, especially after eating beef or other fattty foods which...
  10. Silence

    candida lab test

    I got tested for candida in my stool and blood and I had +2 for stool and elevated IGG and IGA which correlated with oral thrush i had ongoing . But I also have lowish CD4 count which could explain this. Even after treating the candida (it went away) I still show elevations in IGA and IGG and in...
  11. Silence

    Highly elevated CK (Creatine-kinase) anyone else?

    Along with muscle wasting and muscle pain, my CK was also elevated in the Thousands. This was a few years ago. EMG is abnormal and shows muscle damage, Now they tell me I have some sort of myopathy and probably muscular dystrophy. In the beginning I assumed it was just part of my...
  12. Silence

    MRI and heavy metals

    Hmm maybe ask your doctor if you can do it without dye. They were able to visualize my arteries w/o contrast , but I was told that the dye would make it clearer or light up or something like that.
  13. Silence

    MRI and heavy metals

    Are they going to use Gadolinium based contrast agents? I would forgo it unless really necessary. I received my MRI 8 years ago and am still excreting GAD at high levels in my urine. There is growing research and focus on the growing concerns of GAD used in MRIs. Certain people develop disabling...
  14. Silence

    Dr Fran Kendall?

    Hey Rossy, I did see that mayoclinic has the gdf15 listed on their website as a way for testing Mitochondrial disease/myopathy , but I couldn't find the FGF21 test . Did she say mayoclinic offered this one too. Or perhaps was it somewhere else?
  15. Silence

    LDN and massive Diarrhea

    Before taking LDN, I already had diarrhea, but it just got worse while taking it. And I took it for 2-3 years.
  16. Silence

    Mitochondrial myopathy

    Hey RYO,I was wondering if you were able to get any answers to your problems. I am going through a similar thing right now and it seems like there is some type of muscle dystrophy going on with me, at least thats what the head of the EMG department tells me. He even mentioned Pompe's disease. I...
  17. Silence

    LDN and massive Diarrhea

    At first I thought it was the excipients too ( even though mine was compounded and only contained microcrystaline cellulose), so I switched over to transdermal LDN it did the same thing-made my yeast issues worse- seborrheic dermatitis and candida + diarrhea (which I suspect could be from...
  18. Silence

    Seeking information on long-term outcomes with Dr. Kaufman

    Thanks. I have stiffness, achyness, burning, weakness, twitching, stiffness in my distal limbs/muscles and muscle atrophy. If I do more activity these symptoms get worse. My needle emg were abnormal along with ck and aldolase and my differential consists of a few rare diseases/muscle dystrophies...
  19. Silence

    Seeking information on long-term outcomes with Dr. Kaufman

    I was able to get an appointment with Dr. K and I liked his approach and openess. I mentioned how I found out about him through phoenix rising and he smirked and laughed. He said he has to keep his guard up with the people on phoenix rising because they come prepared..lol. I assured him that...
  20. Silence

    Feel a horrible sensation when watching TV, listening to music and even reading

    LDN also helped my kindling and neuroinflammation- my sleeps got much better, I could think clearer, get less headaches/migraines, get less brain burning, zapping, lactic acid feeling, seeing zig zags, light burst, lowerd ear ringing (tinnitus). and increased my energy levels modestly. I would...
  21. Silence

    Experiences with transdermal LDN

    No problem,glad to share my experience. I actually think that the LDN is causing digestive issues secondary to a yeast overgrowth in the small intestines. I don't believe that it's caused by fillers, (for some, perhaps) but the LDN itself is having some mysterious effect on the immune system or...
  22. Silence

    Experiences with transdermal LDN

    I've been using transdermal LDN for 2 years after using oral for about 1 year. The oral one also caused me digestive issues so i asked my doctor for a transdermal one. After using the transdermal one, I also noticed that my GI symptoms (chronic diarhhea possibly due to candida.) would be...
  23. Silence

    Flare in fungal symptoms

    Are you taking LDN? I think I remember a post where you said that you're trying it? For me, LDN exacerbated my fungal and yeast problems. That's why I can't take it anymore. Could be a possibility?
  24. Silence

    Seeking information on long-term outcomes with Dr. Kaufman

    Thanks. I am just becoming more and more disenchanted with so called specialist. I am skeptical if I'll be able to get any help, espcially after seeing Dr. chia , and KDM this year( along with others- Immunilogist, cardiologist, geneticist, neurologist, neuromuscular specialist, mitochondrial...
  25. Silence

    Seeking information on long-term outcomes with Dr. Kaufman

    I just called Dr. Kaufman at his new office and they told me he is not taking any new patients. They only gave me the option of seeing Dr. Cheda who is scheduling as early as late november. They require a 300 dollar deposit at the time of scheduling that will go towards the total cost of initial...
  26. Silence

    Seeking information on long-term outcomes with Dr. Kaufman

    I called Dr. Kauffman's office not to long ago because I was interested in seeing him also. They told me he's not accepting any new patients. The only person who was open was Dr. Cheda. Has this changed recently?
  27. Silence

    I'm losing my eyebrows!

    I have the same thing happening to me along with a bunch of other stuff along with chronic diarrhea/maldigestion, but I won't go into the other stuff. I was tested for a bunch of vitamins and minerals and the ones that were the most deficient were b1, b2, and vitamin D, coq10 all tested very...
  28. Silence

    What are your worst symptoms?

    1.Chronic diarrhea/malabsorption, food intolerancbes 2.Brain inflammation- brain zaps, confusion, migraines, ear-ringing/hissing/wooshing/hearing going out, feeling drugged/drunk, feeling like somebody is pushing me down, lactic acid burn in brain, pounding pressure in head. Anxiety/panic 3...
  29. Silence

    Is Folate inhibiting Thiamine (B-1) ?

    Can anyone comment on Andy cutlers views on TTFD here: (taken from onibasu wiki) link: http://onibasu.com/wiki/TTFD Cutler speculates the hepatoxic effect of TTFD comes from the tetrahydrofurfuryl when it separates and becomes a mercaptan (single thiol). Due to its toxicity there is no...
  30. Silence

    CRAZY ECZEMA

    I have seborrheic dermatitis. I am not sure, but I think its a type of eczema? It forms on the sides of my nose and between my eyebrows and upper lip and gawd it itches like crazy. If I itch it too much it gets red and inflamed and will form thick flaky white crust. Like you guys, it gets much...