• 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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    My doc wants to pick your collective brains regarding antivirals

    In addition to Cpn changing states to avoid treatment, bacteria and virus will hide in a biofilm matrix within intestines, upper respiratory passages. During anti- biotic or viral treatment, biofilm also needs to be broken down with enzymes and metal chelators, followed with fiber to bind and...
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    Chlamydia Pneumoniae, antibiotics and chronic fatigue

    I recently came across an old file I had of Vanderbuilt University's patent regarding CPn treatment and thought this is a good place to post the link. I had both Cpn and EBV that caused my CFS, and was treated successfully. athough this patent is from 2004, it's still a good explanation of the...
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    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    Thank you Manuel- Very interesting article. I had CFS and was also diagnosed with both EBV and CPn but am recovered. Before I found the right Doctor and while researching my symptoms I saw some symtoms shared with MS. Then found a study stating MS patients don't get gout. Uric acid causes...
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    non-viral CFS?

    I'm doing great Hip. Still taking some supplements, mostly for joint damage, but also still taking some antioxidants. The mold article was interesting since I still have minor stuffiness in sinus and ear canals. I have a neti pot but need to use regularly. although mold started my illness...
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    non-viral CFS?

    Circling back to the mold, I follow some of Hip's leads and see fungus will live in biofilm for decades after exposure. One of the last treatments I did was biofilm removal. Here's a link detailing mold's ability to hide in sinus mucus and treatment options...
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    Looking for East Bay (Bay Area) Fibro/CFS doc

    Dr. Powell is in Sacramento, close to the Bay Area. http://www.fmtlc.com/index.html
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    nk function increased 5 months after immunovir use stopped

    Another effect of immunovir/inosine is regrowing nerves: http://www.ninds.nih.gov/news_and_events/news_articles/news_article_stroke_inosine.htm Inosine has been used to help stroke victims recover, but this effect could also be helping CFS patients. Viral infections and the autoimmune attacks...
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    Recommendation for ME/CFS specialist in San Francisco Bay Area

    Hi Annette- Dr. Michael Powell runs the Fibromyalgia Treatment Clinic in Sacramento, and he helped me fully recover. The drive is about 1 1/2hrs but you can taper off on visits when treatment starts.
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    Ca doctors prescribing antivirals and immune modulators, among other things

    Hi Ocean- I had 6 silver/mercury amalgam fillings replaced. If you test high for mercury and have mercury fillings, then you should get them removed. Make sure they use a dental dam and breathing mask to reduce exposure. You can also take Chlorella and cilantro after.
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    Ca doctors prescribing antivirals and immune modulators, among other things

    Hi Ocean- If your sensitive you need to start very slowly. Some vitamins and supplements, antibiotics free up heavy metals mercury and lead, so you need to test for these and take metal chelators first if needed. Then start with vitamins, antioxidants, methylation and glutathione promotors to...
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    Ca doctors prescribing antivirals and immune modulators, among other things

    Hi Ocean- I'm not visiting this site much (recovered) but saw the invite and joined this group. To answer your question, I saw Dr. Michael Powell in Sacramento. I'm in San Rafael and it would take me 1 1/2 hrs to drive up. First visits were every other month, then every 3 months. He will...
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    doug

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    Medical History 1997 - 2010

    Medical History for Doug 1997-2010 Summary: From 1997-2007 had an unknown illness. I had a diagnosis in 6/2007 and started treatment for CFS, CPN and EBV. I stopped treatment in 9/2010 when 100% well. I started this letter in 2005, added to in 2/06 and 5/07. This was prepared for...
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    What caused your CFS? POLL

    Two massive mold exposures caused it. Was diagnosed with EBV and CPn about 7 years later.
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    Stanford Fibromyalgia research study

    I saw this on Craigslist today: Do you suffer from Fibromyalgia or widespread, unexplained pain? If so, you could be eligible to participate in a new research study investigating how an investigational new treatment may help relieve Fibromyalgia symptoms. The Systems Neuroscience and...
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    Help deciding whether to take imunovir

    I took Inosine with DMAE (similar to Immunovir) and it really helped. Taking L-Arginine at the same time could also have increased the anti-viral effect. Doses I took were milder than what Dr. Cheney recommends. Here's a link to a past topic where I discussed this...
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    Gut Inflammation In CFS

    I found this article abstract on IBS that makes the point gut acid imbalance can cause bacterial overgrowth and IBS. Also bacteria can cause a gut acid imbalance in a negative feedback way. Treatment is a form of Niacin. http://www.townsendletter.com/FebMar_2003/inositol0203.htm
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    Neurological link and Music

    I haven't tried the binaural sounds yet. There are expensive porograms (Monroe Institute) but you can also buy individual CD's with overlying music. Free binaural sounds only are available (http://www.bwgen.com/download.htm) I've downloaded this, but need to send it to my other computer with...
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    Neurological link and Music

    Mark, You said "music is all about the soothing pleasure of neural activation of familiar learned pathways". I had very moving and emotional experiences when converting a stack of old vinyl into MP3's. Mostly 60-70's music from my youth that activated a flood of memories and feelings, but...
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    Anyone Tried NADH for Energy?

    I took NADH along with CoQ and Sam-E and felt very wired, almost too energetic. I recently came across this article that links NADH depletion to Cytopathic hypoxia (deficient cellular respiration), lowering ATP and energy production. A low NADH state was caused by proinflammatory cytokines...
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    Night Sweats and Hashimoto's

    "They make you deficient in vitamins and minerals and in the end they make you much, much worse." If antacids make you deficient in minerals, maybe the leg cramps are caused by a magnesium deficiency? I was taking EDTA to chelate heavy metals, and ended up with severe leg cramps. Magnesium is...
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    Bikram Yoga

    I started Bikram Yoga 1 1/2 years ago when I started to get better and had enough energy to exercise. I thought it would be stretching in a heated room (my Dr. encouraged me to take saunas) but found it very taxing. It's a 90 minute active form of meditation and concentration to reconnect your...
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    What treatments have CURED people?

    Hi heapsreal- I started out with 500 mg Inosine/351 mg DMAE am and later repeated Inosine in pm before meals. For stretches took 1000 mg Inosine & 351 DMAE am and pm. I would order 1-2 bottles of Inosine, take for 2-3 months, then take a break when I nran out and waited for another order to...
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    What treatments have CURED people?

    Imunovir or Inoprinosine is a combination of inosine and DiMethylAminoIsoPropanol (DMAIP). I took Inosine in combination with DMAE (DiMethylAminoEthanol) with good effects, averaging at most $0.70 USD/day or about $21.00/month. (Source Naturals and Ultimate Nutrition Inosine 1000 - 2000...
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    We need a LIST OF TREATMENT OPTIONS to send to Judy Mikovits

    Promote Protein kinase R or PKR (Eukaryotic translation initiation factor 2-alpha kinase 2) with Heparin. PKR is a protein protecting against viral infections. I developed a DVT after foot surgery, and felt really well after rest and 6 months of Heparin, but relapsed after. I also had a huge...
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    Article: Proteins on the Brain': A Breakthrough for ME/CFS?

    Thanks for posting this interesting story. I'm a layman not constrained by medical knowledge, so can make wild guesses about the cause of amyloid plaque. Possibly XMRV impairs immunity, causes secondary bacterial or viral infections which lead to antobody and cytokine overload, impair renal...