• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    Where to purchase GcMAF

    kakrpa, thanks for the info. I used it to acquire and prepare the yogurt. Have you prepared and began taking yours yet? Thx Crappy
  2. C

    Tetrahydrobiopterin (BH4) deficiency in CFS and the connection to folate metabolism

    Hi Triffid, Your comments about necessary hormone levels didn't seem to gain much traction here, but I certainly hear you. I must say I have had the same theory for some time now. I get best results when adequate hormones are maintained, they are pivotal to success of any regiment...
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    a few questions about BH4

    Mimi, How is that possible? Schircks Laboratories has made a big deal out of the fact that Merck has corrupted their ability to make the substance (BH4) legally? Schircks Laboratories sold out of BH4 last year and stated no more would be made for fear of Patent Attorneys dropping from the skies???
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    Has anyone tried allergy immunotherapy (allergy shots) for CFS?

    Hi Scotty, I cannot urge caution strong enough in this area. My CFS symptoms appeared the winter after having a fall treatment of Modern Medicine Allergy Serum Shots. What I am saying is, the treatment may have caused my CFS. Before the shots, all I had were nasal allergies; one month...
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    How do we treat severe insomnia for cfs/me

    Hi Heaps, as you know, I appreciate discussions of sleep related issues. I sometimes went hungry as a child and I thought that was the worst thing a person could endure. I guess a higher power wanted me to know there are worse things, and Viola! Intractable Insomnia. I guess we now have some...
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    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    HEY! I resemble that remark! :Retro smile:
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    Complete anhedonia (loss of feelings) as a ME symptom. Anyone else who has it?

    Wow, a lot more responses than I would have predicted; especially so fast. I have it too. I have come across some theories that it is caused by the affected areas of the brain. I noticed emotions going away about 6 years into the illness. Felt really strange when it was new, now 12 years in...
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    Flu-like ache CAN'T BEAR IT!

    98% chance you are suffering from Chronic Neurotoxins. You can try and treat the symptoms as most do; or get them out of your body. This requires a prescription for Cholestyramine powder, or Wechol tablets; this is the best way to treat because it takes a lot of stress off the body. In my...
  9. C

    Lost My Fight

    Sorry for your predicament. I think this illness tests every strength and weakness a person has. You have a the company of an Army of people that understand where you are. Hope you have at least a few understanding people near you, you can depend on. Happy Holidays
  10. C

    MAF 314, looking for someone to share

    Thank you all!! I just wanted to express my gratitude for all the Pioneers and Guinea Pigs who freely share here. This illness was so much harder when I was alone. I hate being sick; but I am proud to be in a class of people who persevere in the face of horrific conditions too often...
  11. C

    extremely depressed...just feel like dying

    Far too many of us know your pain. I know for my condition I have found Cholestyramine incredibly helpful for pain. It is not a pain reliever of any kind; it is a Bile Acid binding Resin. The theory is Neurotoxins secreted by incompatible organism in your body excrete Neurotoxins as waste...
  12. C

    Ortho Molecular (Gut Repair Kit) Potential Game Changer!!!

    mellster I had never heard of Holtraceuticals, so I went to their site to look at Gut Feeling Max. The label of Gut Feeling Max and InflammaCORE read identical. It looks to be exactly the same product; interesting.
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    Ortho Molecular (Gut Repair Kit) Potential Game Changer!!!

    This is another encouraging aspect of this product. Almost all Probiotics I have used in the past state, " guaranteed potency at time of manufacture", I have found many of the probiotics I have purchased were actually DEAD. (I think this is a dirty little secret of many manufacturers) The Ortho...
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    Ortho Molecular (Gut Repair Kit) Potential Game Changer!!!

    Ortho Molecular (Gut Repair Kit) Potential Game Changer??? I don't know how much money I have dropped on $$$ProBiotics$$$. Anyone who has used VSL#3 or Mutaflor has spent enough on ProBiotics to make a car payment. It's not just the cost of Clinical grade ProBiotics; but, the price of all the...
  15. C

    Gout

    I didn't see anything about in this thread, so I thought I would just put it out there. Out here in no mans land I have met several people with Gout, and they all swear by Black Cherry Juice. I hear some brands are better than others, and someone said Concentrate is better. I see it widely...
  16. C

    17 years of a ME/CFS dx, and it is Lyme, Bartonella and Babesia not ME/CFS

    I am just wondering what the latest; best protocol is for treating Lyme? I have had it for years, and go to an LLMD. I have not had much luck getting rid of it, and have kind of resolved to living with it. I would sure like to kill it if it's possible though.
  17. C

    Pills Effective in Preventing AIDS in 2 New Studies

    As active as everyone here is in seeking a solution to all this I thought I would see if anyone here is familiar with these drugs? http://www.nytimes.com/2011/07/14/health/research/14aids.html Treatment of HIV seems to be progressing, while we remain "unwanted step children". Is it just...
  18. C

    Asea

    Froufox, Are you still using it? with what kind of results?
  19. C

    Source for hydroxycobalamin B12

    Here is a reasonably priced, good quality B-12 if you don't like the injections. I was doing 30mg injection every other day, expensive, so I tried the Black Bear oral every day and my serum B-12 actually went up. Oh, and I have been taking Jarrow 1mg sublingual daily too.
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    insomnia, reposting a good link from august59

    Thanks Heaps, The HIV part talking about insomnia making for, "low quality of life". I get that. I've pretty much resolved myself to being lethargic with bloodshot eyes, I appreciate your tenacity. The average Dr, knows their ignorant about this, but since it isn't hurting them, their ignorance...
  21. C

    Dr. Deckoff-Jones on CROI

    Thanks SpecialK82, Not exactly what I wanted to hear. I had to pause and tears well up. We've been busily creating and replicating possibly the most virulent virus yet, and we don't know how to kill any of them, even hhv6 in human tissue. This is beginning to look like the biggest man made...
  22. C

    "Natural Selection will destroy us" interesting article

    It's not over yet. Arabs or Chinese may be able to just walk onto the continent because the people will be arguing over scraps of meat, and water to drink. :Sign Oops: All that cash Wall Street Con Men have stuffed in their mattresses won't be worth didly when the currency collapses. Seems...
  23. C

    "Natural Selection will destroy us" interesting article

    Sounds like you made the leap from Idealist to Cynic like me and Mr Carlin. http://www.youtube.com/watch?v=mLEtb9N9oMA&feature=related http://www.youtube.com/watch?v=FLSWD6OLEs0&feature=related http://www.youtube.com/watch?v=tDcqlmF0OR4&feature=related
  24. C

    Dr. Larry Sharp (CFIDS doctor)?

    So true. Standard of care is non existent.
  25. C

    Dr. Larry Sharp (CFIDS doctor)?

    Interesting leela, I guess that helps explain doctors doubting us so much; how would they know without a test.:Retro confused:
  26. C

    "Under our skin" movie for ME/CFS?

    I spend way more time than I should in here, and I didn't know about either of these. So thanks for starting the topic, and thanks for the info.:thumbs up:
  27. C

    What Happened in the early eighties?

    I had never considered that. Underground, black market treatment for ME, People trying to self medicate with black market drugs or alcohol for the condition? No one really has any idea how large the segment of the population that is suffering from this condition. For every one person...
  28. C

    Patients Educating Physicians

    I think this is relevant Dr. information too. http://www.wpinstitute.org/news/docs/WPI_PaceTrials_030111.pdf
  29. C

    Detox: Pectin, Alginate and Clay

    Pardon the absence of a medical license, but I still like to "practice". The Dr. is out. I would guess one of two things. 1. Some thing in the mixture is making it into the blood stream, like simple carbs. or something else. 2. You have a lesion in your digestive tract and the mixture is...
  30. C

    Gerd treatments: A survey of efficacy and side effects/contraindications

    stevenski I have been wanting to engage in this topic because I have the same problem and much experience. But I haven't gotten thoughts together to converse yet. I would strongly urge caution on arbitrarily adding acid. Gastroenterology is another fast changing field that the average...