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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. S

    plasma--eyedrops made out of your own blood question

    Hello All, I tend to lean toward Anciendaze only because I don't understand much of Alex's hypothesis (which doesn't meant it is in error, just don't understand it.) And, exactly, who can saw what comes out of our blood. Scary thought there. And your doc is light years ahead of anything...
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    Nexavir is the same drug as Kutapressin

    Hello, wanted to share my experience on Kutapressin. I took it for 16 years along with high dose injections of B-12. 5,000mcgs three times a week. What I stumbled upon was that the Kuta and the B-12 injections work better together. The B-12 has to be obtained at a compounding pharmacy. A few...
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    Are you a twin?

    I am a identical twin I responded to Dr. E's request for twins. Have not heard back. Also, I told him about the CFS Twin Study I was in back in the 1995 era done by the Univ of Washington. He may be looking over their data. I don't know really. Just that he has not responded.
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    Artesunate - Cheney dosage and benefits

    My have times changed. No longer take hepasunate or NT Factor. Decided to get back on the Targeted Transfer Factors. And now I am trying LDN. I think the hepasunate changed my colon in a way that is not normal (constipation) and I may never be normal again. I am now taking magnesium 1250 a...
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    William Switzer - CDC looking for XMRV and MLV in lab workers!

    And I still have my positive lab to the "CFS Novel Retrovirus" in 1991. Sick since 1986. And a patient at the NIH under Fauci and seen by Straus. What gives????
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    Artesunate - Cheney dosage and benefits

    Ok, I will tell my tale. I tried a capsule of hepasunate and felt like a poisoned bug lying on its back...in my bed. YUK. My experience with Target Transfer Factors has taught me how to open a capsule and take a much smaller portion. But I didn't really get started on that. Please pardon the...
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    Comment by 'spacee' in 'A Drug for ME/CFS? The Rituximab Story'

    Oh Boy, another incredibly expensive drug that most of us can't afford. Really good news. Pardon my sarcasm, just found out I am positive and feeling no real help in sight.
    • spacee
    • Blog entry comment
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    Article: The Singh XMRV Patent The Next Cancer for XMRV? Prostate Cancer Results Validated/Progress

    Well, sheit. I have been careful to not kiss my kids on the mouth. Yet, my sons have married into families that lips kissing is done regularly. I don't like the looks of what this could lead to. I sent my text off last week. The results will tell a tale. Thanks guys for all the good input.
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    Article: The Stars Begin to Align at the NIH: A CFS Review Panel. For CFS!

    Why has there been no accountability from this PhD who hired his cronies to help him "research". This is shameful. But I suppose it has been business as usual for so many years. Wait til I tell my brother's who have medical degrees from the Univ. of Ala. They would roll on the floor...
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    Comment by 'spacee' in 'Cheney's Latest Newsletter'

    Everyone has their own opinion of Cheney. I have had a much better quality of life because of his putting Kutpressin in a CFIDS article in 1990. And him using the Transfer Factors that were sold at Prohealth 'as used in the Cheney Clinic'. Did I get anywhere near well? No. But I'm not...
    • spacee
    • Blog entry comment
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    Chronic Fatigue Syndrome edited by Stephen E. Straus (NIH) Retrovirus Chapter

    Hey Country Girl...we have talked and you have the info. My opinion of Straus falls into a couple of categories and I'm not sure which fits, maybe all. 1. Some extremely bright people are completely weird. :) 2. Maybe he wasn't as bright as he wanted to be. Dr. Cheney says that...
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    Cognitive-Behavioral Therapy: Has Anyone Here Benefited at All?

    I apologize, I do not know how to do 'links'. If you google nf-kp.org, you will find the collection of research articles on this important immune pathway. The research is for cancer but there are other diseases listed. To find CFS, click on Disease and scroll down to Chronic Disease States and...
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    Artesunate - Cheney dosage and benefits

    Your reaction to Art Seems to be what I experience too. Odd that Cheney's patients feel better when they take it and worse on days off (weekend). I am through the 5 days straight period and now taking it just twice a week. Monday and Thurs. Also, I cut my dose to 1/2 of capsules. Open...
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    Article: NIH Steps Up to the Plate - Picks Pathogen Ace to Lead Major XMRV/CFS Study

    Little Stevie Ray Straus is an alumni of Columbia and received their medal of honor as an alum on his deathbed. The little known CFS Twin Study at University of Washington was headed by Dedra Buchwald, M.D. handpicked by Straus. Check the first protest of the Science article on XMRV. It was...
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    famvir stronger then valtrex??

    Hey HR Called the lab. They said the titers were fine. And wanted to sell me other kinds of products they are just developing. Egg protein and fruits and veggie's stuff. Oh, well. Natch they are not going to say it is the TF's.
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    famvir stronger then valtrex??

    Hey HR, don't want to get off topic here but you asked once that I let you know how the hepasunate is going. Herxing so bad on some days. Reminds me of the herxing on the Marshall Protocol. Bascially, lymph node pain in the neck, nausea, malaise, brain fog. Feels like something is dying in me...
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    Chronic Fatigue Syndrome edited by Stephen E. Straus (NIH) Retrovirus Chapter

    It is very very weird. Just want to clarify because sometimes I am not clear :) Those were actually two books I was writing about. The one with the quote a 1994 book with a chapter on retroviruses. The other a 2008 'bible' that is used currently. I have not looked at the chapter (don't own...
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    Chronic Fatigue Syndrome edited by Stephen E. Straus (NIH) Retrovirus Chapter

    Dr. Straus is our very evil foe from the NIH. He died in 2007. He was removed from CFS in 1999, I think but his influence is still vast. For example, one year after his death the Harrison's Principles of Internal Medicine which is the doctor's "bible", the 4th chapter is on Chronic Fatigue...
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    Artesunate - Cheney dosage and benefits

    A stab at the disjunct, we are infected in various organs to a varying degree in each person. That is not a professional opinion...just a guess. I took one of the Hepaunate from Hepalin and for about 24-36 hours, it felt like a war was going on in my neck lymph glands. This is a possible...
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    Comment by 'spacee' in 'Dr. Peterson Update'

    So, is it Charlotte or Reno? :)
    • spacee
    • Blog entry comment
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    Research on valtrex and side effects?

    You know about the original herx back with penicillin and syphillis??? In case not, that was when the doc first noticed it. Back in the 1940's. So, your doc scoffs? Must be a newbie ;) It's named after the doc who discovered it. This is going to test the memory bank..Jacob Herximienter...
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    Comment by 'spacee' in '1991 lab test at Cheney Clinic. Opposing replies from Dr. Cheney and Dr. Lapp'

    Hey Friends. If I test negative for XMRV, then I am going to assume it was the live polio vaccine. And every time I have to see a new doc, I am taking a copy of that test with me. Cruzgirl, I don't think a study of parents with polio has ever been done. It would definitely be very...
    • spacee
    • Blog entry comment
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    Comment by 'spacee' in '1991 lab test at Cheney Clinic. Opposing replies from Dr. Cheney and Dr. Lapp'

    Did find where Dr. Martin states he found a monkey molecule in a CFS patient. Indicates a tainted polio vaccine. Several of us in our small town did get CFS when we were adults. Some recovered, some didn't. FYI
    • spacee
    • Blog entry comment
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    Comment by 'spacee' in '1991 lab test at Cheney Clinic. Opposing replies from Dr. Cheney and Dr. Lapp'

    I am on the list to be tested the end of this month or the first of next for the new test and the older one. Will post the results. I used targeted Transfer Factors of two kinds. One target EBV,HHV6 and CMV...the usual that are high in CFS. Then I added one for Mycos and lyme. The two...
    • spacee
    • Blog entry comment
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    Comment by 'spacee' in '1991 lab test at Cheney Clinic. Opposing replies from Dr. Cheney and Dr. Lapp'

    One kind friend posted an article from the internet that said the Defreitas was HTLV II "like". Not the real deal. THAT confuses me about Cheney's answer...maybe he has a lot on his mind (probably does). Sounded to me like he was saying it could be the same virus. I had not thought of two...
    • spacee
    • Blog entry comment
  26. S

    spacee

    • spacee
    • Blog
    • Blog entries: 1
  27. S

    1991 lab test at Cheney Clinic. Opposing replies from Dr. Cheney and Dr. Lapp

    Shuffling through my old lab stuff, I came across one from 1991. It states 4505 Chronic Fatigue Assoc. Retrovirus Assay POSITIVE Ok, so I email Dr. Cheney as to what this could be. No reply. Since Dr. Lapp was my doc (in partners with Cheney at the time), I decided to snail mail each a...
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    Artesunate - Cheney dosage and benefits

    Hi Lisa...I have tried the Arteminsin. I don't remember feeling inflammation but I did feel more yuky. Didn't like it.
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    Artesunate - Cheney dosage and benefits

    Thanks All I have purchased this and looking forward to trying it after being tested for XMRV late August or early Sept. I was doing pretty well on the targeted transfer factors from Chishom Bio Labs. But my ana went up to 1280, I think. They use rx antimalarials for lupus and sjogrens...
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    For the XMRV +; What are you upto?

    Hey....I'm a newbie here (from ProHealth) I'm going to get tested for XMRV end of August, first of Sept. A large part of the reason is that if this virus is in the DNA, then my kids need info on it, if they get sick. I don't think that I will be telling anyone in my small, rural town that...