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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. melihtas

    Prusty talks about his upcoming research on a podcast

    There is one IgM enriched immunoglobulin available called Pentaglobin. https://www.transmedpharma.com/our_products/pentaglobin/ When I searched PR for Pentaglobin, only 2 messages came up. Two ME patients tried Pentaglobin and both of them responded extremely well. One of them said, it gave...
  2. melihtas

    Pentoxifylline: shows amazing results but it's a potent immunesupresive agent: your opinion?

    I took it for three months, no effect.
  3. melihtas

    A Metabolic Trap for ME/CFS?

    According to the metabolic trap theory, excess tryptophan is converted to serotonin and when serotonin level gets high, the body adjusts itself to high serotonin environment reducing serotonin receptor numbers to reduce sensitivity to serotonin. Serotonin receptor abnormality is at the centre...
  4. melihtas

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    COPAXONE 40 MG/ML 12 Syringes = 1951 TL = 319 USD = 278 EUR The generic brand is GLIA from a Turkish company. They have only 20ML.
  5. melihtas

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    COPAXONE 20 MG/ML 28 Syringes = 1727 TL = 282 USD = 246 EUR Generic 20 MG/ML 28 Syringes = 1048 TL = 171 USD = 149 EUR You cannot buy it online and nobody can ship it to you from Turkey. Customs doesn't allow any drugs in or out via post. The only way to get it out of Turkey is to bring...
  6. melihtas

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    If you don't have enough protein in your diet, your body will start wasting muscle and since your muscle contains a lot of tryptophan you won't achieve a low tryptophan diet. You will lose muscle for nothing. To prevent muscle wasting you need to add beef gelatine (sweets are not enough) or...
  7. melihtas

    Article about new potential treatment by Victoria Bohne, in Norwegian

    They say you can use a fruit containing sugar or you can add sugar to the drink, it doesn't make difference. They don't use spinach anywhere with 5-active other than in the table I posted. It is only called "5-active". I posted that table to make the connection and make it obvious that the...
  8. melihtas

    Article about new potential treatment by Victoria Bohne, in Norwegian

    When cooked soluble oxalate levels are reduced greatly.
  9. melihtas

    Article about new potential treatment by Victoria Bohne, in Norwegian

    I am not trying to promote this oxalate theory. It doesn't even make sense to me. I copied and pasted information from the patent paper because the ingredients were asked. The drink is not called "5-spinach", it is "5-active". Also, banana and strawberry contain more soluble oxalate but they...
  10. melihtas

    Article about new potential treatment by Victoria Bohne, in Norwegian

    Not-so-secret ingredient of 5-active drinkable product is spinach. They added 24,59 gr sugar (mostly fructose). In addition to the drink, they supplemented 1200 mg alpha-lipoic acid + 12 mg thiamine + 27 mg niacin + 2.5 mg riboflavin daily.
  11. melihtas

    Analysis of data from 500k people in UK Biobank shows inherited component to ME/CFS (Ponting blog)

    My bolding; Dauer state??? Coincidence???
  12. melihtas

    Mono Virus Discovery - Implications for ME/CFS?

    The link is working for me but I uploaded the file to google drive for you. https://drive.google.com/file/d/1vbsAQ-X3H4fKXiOfivlxwkM9yhY0g7Hw/view?usp=sharing .
  13. melihtas

    Mono Virus Discovery - Implications for ME/CFS?

    Full PDF of the patent application with images and charts (228 pages)...
  14. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    I don't have POTS. I do have a very bad orthostatic intolerance. Standing 30 minutes or sitting 1 hour in a day gives me PEM for a week. I spend almost all my day lying down. I also have body temperature regulation problems, night sweats and IBS with diarrhoea. These are also autonomic...
  15. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    Thanks for letting us know, however, I used 1000 mg injection twice, not 1 mg. As you can see in the photo, each container has 250 mg in it. I mixed 4 of them into the solution for each injection. That photo was taken after the first injection. Suramin from empty bottles was circulating in my...
  16. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    @dreampop, @necessary8 I have no idea why it didn't work. Maybe, CDR and metabolic changes are not the cause but the result of ME. Maybe, suramin might only work for a subgroup of ME patients like Rituximab does and I am not in that group. Even if it doesn't work for anybody, a clinical trial...
  17. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    Ron Davis was just explaining where the scary side effects of suramin on Wikipedia page come from. He said CDC didn't use Bayer's suramin for cancer trials and contracted out for the suramin to be made. That suramin had impurities that may have caused the side effects. Then, they sold the...
  18. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    I prepared the drug myself but someone started the IV for me. I do NOT recommend you to experiment with research chemicals. When you inject it into your bloodstream directly, any substance can be dangerous if you do a mistake. I did a very thorough research for a few months. I read every paper...
  19. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    I took the same dose as in the autism trial. They used 1gr (1000mg) suramin but they reduced the dose for smaller kids according to their body weight. The 50mg injection was a test dose to see if the kids show a bad reaction to the drug. They waited one hour after the test dose and gave the rest...
  20. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    Others used research version of suramin from other manufacturers. Bayer suramin is not available anywhere in the world. Only WHO has it but they give it to African Sleeping Sickness patients only. Ron Davis said impurities might be causing side effects, he didn't say anything about their...
  21. melihtas

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    I am one of the persons @adamjfpickering mentioned. I took 2 x 1g Suramin 3 weeks apart. The last one was a month ago. I haven't had any improvement. I didn't have any side effects either, other than a mild headache lasted a few days after the first injection. I am the only one who used...
  22. melihtas

    Mitochondrial DNA discovered to be emitted by cells as danger signal

    Can the limited improvement from Rituximab and then relapsing again be explained with this mechanism? Depleted B cells mean less extracellular mtDNA. When B cells come back, symptoms come back too. We already know Cyclophosphamide is more effective than RTX because it depletes both B cells and...
  23. melihtas

    Anonymous parent donated $300,000 to Naviaux Lab!

    Announced by who? This rumor has been around for some time. I don't think it is true.
  24. melihtas

    Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

    @Hip Gut motility is regulated by purinergic receptors. This paper mentions ATP and Suramin but it is too complicated for me. Purinergic mechanisms in the control of gastrointestinal motility
  25. melihtas

    Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

    I tried Tavegyl (Clemastine) this week. Although its side effects should be sleepiness and constipation, it made my sleep worse, I couldn't sleep all night and it caused diarrhea. It caused the exact opposite of the expected side effects. I stopped taking it after two days. I hope suramin will...
  26. melihtas

    killing T-regs causes more immune suppression than letting them live.

    I think this explains why ME patients got worse for a few months before getting better in Cyclophosphamide trial.
  27. melihtas

    Questions Answered by Dr. Naviaux

    We don't have compounding pharmacies here in Turkey. Also, I don't think they can synthesize molecules. I found some sources to buy Suramin but they are expensive and I have very tight budget. The cheapest suramin I have found so far is $354 for 500mg. I am trying to save enough money to buy 6...
  28. melihtas

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Hey @Hip, wouldn't it be better to take the usual dose without grapefruit juice to establish its effectiveness first, then try alternative administration methods and compare them?
  29. melihtas

    Questions Answered by Dr. Naviaux

    Didn't you read the Q&A. All the answers to your questions are there from the man himself who is going to conduct the trial. forums.phoenixrising.me/index.php?threads/questions-answered-by-dr-naviaux.54318/page-3#post-902897 .
  30. melihtas

    IBS plus diarrhoea: NICE approves a new drug treatment (UK)

    I have been taking loperamide for the past 20 years. My daily dosage varies between 2 to 10 tablets (4mg - 20mg). It only works if I take all the tablets at once in the morning. So, 2mg/6hour does not make any sense to me. I think 22mg weekly limit is just for there because effectiveness of...