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

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    Disability Benefits Not Enough

    Disability benefits are not enough for most people, in the U.S. and U.K. One possible solution is to elect to house ourselves in groups, which would substantially cut down on costs, help with comraderie and socialization, and we might be able to hire people to come in to help us - or on good...
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    Increasing Famvir Dose

    I took the genertic famvir from Dr. Kogelnick. I was sick beyond what I can imagine---- yet he did not check me for any toxicity (WBCs, LFTs, and kidney function), and in fact told m to take more. The drug is madeby a company in Indiai --- Aurobindo. I called the FDA and they told met to fill...
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    Comment by 'chloe' in 'Today's Doctor Visit'

    Have you considered getting tested by the Fatigue Clinic in northern California? Sorry, I'm too tired to dig up the info at the moment, but they were very helpful to me. If you are interested (or anyone else), send me a private email, and I will send back to you the telephone number, location...
    • chloe
    • Blog entry comment
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    Early Antigen EBV

    Are there principles of viral therapy? Alex, thanks for the message. So you and others have found Valtrex can be effective over long period of time. Interesting. I was in the office of Dr. Kogelnik, and he told me that's essentially useless and you have to go to Valcyte. Well, Valcyte tore me...
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    Pain control and sleep

    Reading the comments in the forums I realize my regimen is a bit different, and more focused on making myself comfortable. I had a very psychologically abusive doctor years back who refused to treat my pain. She would glare at me if I said that Advil didn't work. Then, a new doctor was...
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    Valcyte and Insomnia

    Yes, I experienced this problem. Even before Valcyte I have had SEVERE insomnia. This is my regimen (and keep in mind, you should not automaticlally incoporate it, but make sure it is compatiable with your own regime, particularly watching out for the potential risk of serotonin syndrome). So...
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    IMUNOVIR? vs CYCLOFERON?

    I am a newbie here and found this all very confusing. I have been unable to tolerate both Valcyte (I experienced a manic episode after a several weeks), and Famvir 500 mg three times daily increased my pain levels to UNBEARABLE, even though I am on Fentanyl patches (an opiate) 125 migrograms...
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    13th week of Valcyte

    why do you respond to only higher dosage of Valcyte or Valtrex? Im responding to this old post of yours, but likely you've thought of this ---- your profile says you're a guy, so I assume your weight might be a bit more. Many medications are dosed by mg/kg. So if you weigh more in kilograms...
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    CFS& AIDS clinic at Oregon Health Sciences University???

    Dear WillowJ, Thanks for your description of what's at Oregon. You just saved me a trip! One thing I don't seem to suffer from is fibromyalgia. I now tend to think that I need a mega virology work-up, with PCRs of herpesviruses 1-6. But my knowledge base is growing.I tend to think highly of...
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    Top Tiered CFS Physicians

    Deckoff-Jones has just started. Does not have years of experience like the others. Background is as an ER doc. Bonus is she's interested; limitations - she believes in aspects of treatment before they have been scientifically proven. So what if you're a patient who does not respond to one of her...
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    Lyme Disease + HHV6 + EBV

    Why no antibiotics? If your doctor and you are sure you have neuroLyme, then antibiotics would be obvious tx. I had relapse into neurolyme with workplace harassment. Developed sx of dystonia in feet, blepharospsm in eyes. Antibiotics turned all that around and it hasn't returned. But it does not...
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    Has Anyone Seen Dr. Kogelnik?

    Saw him in the office 3 times because I live close. Definitely would not come from across the country. I am a health care professional, and he attempted to push me into studies I was not interested in after risks discussed. One of drugs carried risks of death with weird virus causing movement...
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    The Open Medicine Institute, ME/CFS Research?

    Do you smell a rat? I went there as a patient, wanting all of this to be true. I thought it was a clinic --- where you go, and he's the doctor, and you're the patient But he failed to even articulate that, and I walked out, paid the fee, but left uttery confused as to what the place was about...
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    Please SIGN PETITION AGAINST the NOMINATION OF SUZANNE VERNON for the CFSAC

    Below is summary of extramural [outside walls of NIH] expenditures on Chronic Fatigue Syndrome research by NIH. http://report.nih.gov/rcdc/categories/ProjectSearch.aspx?FY=2010&ARRA=N&DCat=Chronic Fatigue Syndrome (extramurual awards for research on CFS) Notable awards are Judy Mikowitz...
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    Please SIGN PETITION AGAINST the NOMINATION OF SUZANNE VERNON for the CFSAC

    Nancy C. Lee, Director of Office of Women's Health. Her contact info for anyone who requires it. As of March 15, 2011, U.S. extramurual budget for disease that affects > 1 million people is $6 million. Have you seen the chart? -Chloe http://report.nih.gov/rcdc/categories/ Last name Lee...
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    FRANCIS S. COLLINS, MD PHD, NIH CONTACT INFO - inluding email address!!!!

    FRIENDS, The email address for Dr. Francis S. Collins, Director of NIH, is Francis.Collins@nih.hhs.gov --- for those too tired to write, send the composition through a printer, find a stamp, a mailbox ---- it's as easy as sending an email. I am always of the point of view that we...
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    Use of PCR tests???

    I noticed the physician I went to see did not use PCR tests to try to discern what viruses I might be infected with. Yes, sure, you can do a viral titers, but I believe that should be done in conjunction with a viral PCR test. So, have any of you experienced your doctors ordering PCR tests in...
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    starting cycloferron

    Thanks for the info heapsreal: What dosage of Famvir are you taking? Do you find you get the "die-off" reaction? or whatever you want to call it? Has anyone found a pharmaceutical company that has characterized these "die-off" rections neurochemically? For example, if you search...
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    Extreme Measures: Can one sue their family of origin?

    It sounds like this disease may have been their excuse to engage in psychological abuse, but there is nothing you can to about. No, I cannot think of any example of being able to sue family for support unless you are a minor, or if there is some written prior agreement. None of those exist. You...
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    CFS& AIDS clinic at Oregon Health Sciences University???

    I telephoned their clinic, which is apparently run out of their Internal Medicine Clinic. This seems somewhat peculiar because other places I have known about ---most AIDS clinics are run out of their infectious Disease Clinics. I don't know where I saw information about this clinic, but it...
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    CFS& AIDS clinic at Oregon Health Sciences University???

    I read there is a clinic for us at the CFS & AIDS Clinic at the Oregon Health Sciences University in Portland ---- the major health university for Oregonians. Does anyone know anything about this clinic? Who staffs it? What their approach is? Thanks in advance.
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    Need an SSD lawyer asap!

    For a Social Seurity disability attorney, I used Terry LaPorte, in San Jose, California. Telephone (408) 293-8810. Website www.terrylaporte.com Great guy. I was too exhausted from doing my private disability insurance appeal than to do the sosocial security appeal. I believe he had do these...
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    Rich: High MPV

    I try to remember to take a baby aspirin every day to prophylax against stroke because of the severity of my migraine. My data may not be up to date, but it used to be said that a baby aspirin would prophylax against stroke in females (but not males), and would prophylax against myocardial...
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    Trying 5-HTP

    oh well, I guess I should give up and try to go to sleep.
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    Trying 5-HTP

    Sorry for the typeos --- I meant to write -"durg interactions" caused by the laundry list of sleep meds . . . I like to type on my computer without my glasses.
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    Trying 5-HTP

    Has anyone tried medical marijuana for sleep? There are now 16 states that have legalized medical marijuana. I have not tried it, and have some professional issues hanging over my head as to why I can't try it -- but in California, it is very easy to get a medical marijuna card. One of the...
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    Trying 5-HTP

    Unfortunately there is no test for serotonin levels in the brain --- what you want to be concerned about is "serotonin syndrome," which can be life threatening. Do a Google search on "serotonin syndrome" and you will find more information than you want. It is caused by an excess of serotonin at...