Phoenix Rising Articles

You can view the page at http://www.forums.aboutmecfs.org/content.php?78-The-XMRV-Files-The-Mystery-Continues

Phoenix Rising Team submitted a new blog post:

XMRV the Virus

Posted by Cort Johnson
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The Dr. Jekyll/Mr Hyde Virus - The more we learn about XMRV the more we can see how it could excite retrovirologists; it doesn't appear to be like anything they’ve come across. XMRV is clearly not HIV; HIV is a lentivirus (not a gamma-retrovirus); HIV replicates well in immune cells (thus wiping out the T-Helper cells) - XMRV does not. A much complex retrovirus HIV has nine genes it can use to wreak havoc in the body - XMRV has only three. HIV replicates and mutates enough to often evade detection from antibodies and cytotoxic T-cells. XMRV appears to be almost genetically uniform thus setting, at least in the blood, a clear target for the...

You can view the page at http://www.forums.aboutmecfs.org/content.php?77-Good-Times-Clarithomycin-Spring-Good-Friends-amp-Family

Phoenix Rising Team submitted a new blog post:

The XMRV Files: The Mystery Continues

The inability of anyone other than the WPI (and the NCI and Cleveland Clinic) to find XMRV is mysterious. In the face of three failed attempts to find any trace of XMRV in several hundred chronic fatigue syndrome patients questions are, of course, growing about the WPI's find.

Yes, questions have been raised about the efficacy of each of the three studies - all of them may have had their flaws and depending who you talk to, some of them have major flaws - yet it's alarming that no one has yet found even one CFS patient with an XMRV infection.
Support organizations respond

The inability of the two more XMRV studies- from a ‘friendly’ research group and an ‘unfriendly’ Dutch group - tto find any XMRV in a very large sample of...

Phoenix Rising Team submitted a new blog post:

Good Times, Clarithomycin, Spring, Good Friends & Family

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Written by flybro
By Flybro

I'm now on day 14 or 15, of feeling really well.

Back in January I started to take 50mg of clarithomycin twice a day. My partner crushes a 500mg tab and fills 10 small capsules with equal amounts, and increases the dose to my 'wellness/symptoms', the most it is increased by is 50mg in one day.

I was doing OK in January, then I had a busy week at the beginning of Feb, which left me quite rough for about ten days.

Just as I was starting to feel well again I got what I thought at first, was a bout of really bad IBS. Then after being quite nauseas I thought it was a tummy bug. Six days later after having eaten eggs on 5 separate occasions, I deduced with my stunningly sharp...

Phoenix Rising Team submitted a new blog post:

Being "Pushy" with Your Doctor

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Written by Kelvin Lord
Kelvin's Continuing Blog on his Ampligen and other Treatments

My blog today includes my top 5 Treatment Recommendations outside of Ampligen - things you may need to "push" your Doctor to give you.



Someone asked me recently: "But what can I do if I am not on Ampligen? My Doctor has no suggestions for me!" My response was longer than what I am about to share with you here, but the heart of my answer was "Push your Doctor to let you try things others are using."

Perhaps that seems like a Sisyphean pursuit to you with your physician, like pushing a boulder up a...

Article: A Visit to Dr. Peterson VI: Tests and the CFS/ME Bond by Corinne (conclusion

You can view the page at http://www.forums.aboutmecfs.org/content.php?55-A-Visit-to-Dr-Peterson-VI-Tests-and-the-CFS-ME-Bond-by-Corinne-28conclusion-29

You can view the page at http://www.forums.aboutmecfs.org/content.php?75-Living-Outside-the-Camp

Phoenix Rising Team submitted a new blog post:

Living Outside the Camp

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Written by Jody
It is a fearsome thing to find oneself living outside the camp. As the sickness of Chronic Fatigue Syndrome causes the circle of life to shrink, as the chronic element reduces our contacts with other people, we find ourselves moving (or being moved) further and further away from the campfire.

And as we lose more and more of our ability to take care of ourselves, the need for help from other people in our lives becomes more stark. The less we have of it, the more we are aware of how much we need it, and the more helpless we become ... and the more aware of our helplessness.

Terror inducing. Rage inducing. Grief inducing...

You can view the page at http://www.forums.aboutmecfs.org/content.php?72-Website-problems-due-to-a-recent-upgrade

Phoenix Rising Team submitted a new blog post:

Some Bugs in the Forum Following A Recent 'Upgrade'

Posted by Cort Johnson
A recent security issue has forced us to upgrade to a new version of Vbulletin. This brings along lot's of problems at the moment:

• being logged out constantly
  
• home page messed up
  
• trouble with PM's
  

Cort is currently communicating with VBulletin to solve these problems. This can take days, but we don't want to close down the forum for this reason. We advice you to ignore the bugs for the moment :innocent1:

You can report problems in the comments section here.

Frank
Continue reading the Original Blog Post

You can view the page at http://forums.aboutmecfs.org/content.php?71-Lightning-Strikes-a-CFS-Patient

Phoenix Rising Team submitted a new blog post:

Lightning Strikes A CFS Patient

Posted by Cort Johnson
The Recovery/Recovering Stories : ME/CFS is

heterogeneous disorder with many different subsets. None of the treatments in the Recovery/Recovering stories will fit all or even most patients.

In May of last year I received an e-mail from Berit Frivold a chronic fatigue syndrome (ME/CFS) patient who’d been ill for 13 years. Like many people she’d tried just about everything she could get her hands on and nothing had worked. She noted that

Article: Feels Like Victory! (the Ampligen Diaries by Kelvin Lord)

You can view the page at http://forums.aboutmecfs.org/content.php?70-Feels-Like-Victory-21-Ampligen-CFS

Phoenix Rising Team submitted a new blog post:

Feels Like Victory! (the Ampligen Chronicles Trt #12 )

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Written by Kelvin Lord

Treatment #12 : by Kelvin Lord

I hope this doesn't gross you out, but yesterday I ran to the toilet 9 times and had nothing to show for it. Yes, another surprise, yet not altogether bad result of my Ampligen treatment. But one I actually was happy about. Let me explain.

I guess I'm now considered a veteran - because my twelfth Ampligen infusion went off like clockwork. Gwen found a nice vein the first try, adjusted the rate to take 40 minutes, and because by coincidence we were the only ones in the room that day, we chatted about her son, and life in...

Article: Even a 1% Change Makes a Difference

You can view the page at http://forums.aboutmecfs.org/content.php?69-Even-a-1-Change-Makes-a-Difference

Phoenix Rising Team submitted a new blog post:

Even a 1% Change Makes a Difference (Ampligen Chronicles Trt #11)

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Written by Kelvin Lord
Treatment #11 by Kelvin Lord

I made three very small changes in my protocol today, and although I really can't determine scientifically their effect, experientially I can say that while all three were very minor, percentage-wise, collectively they added up to a big difference in how I felt. As usual, to me it is the little things that seem to add up, either positively or negatively - to how I feel overall. It didn't used to be that way, but as a person with a mysterious virus roaming around his body, and an immune system working it's little ass...

Phoenix Rising Team submitted a new blog post:

Hammering CFS: A Vistide Success

Posted by Cort Johnson
A Recovering/Recovering Story - The wide range of recovering stories demonstrate how varied the ME/CFS population is; each story will only apply to a subset of people with ME/CFS

(Vistide is a very strong drug that Dr. Peterson has been using in select patients for several years now. HVS has been telling about his experiences with the drug on the Phoenix Rising Forums and agreed to lay out his experiences in a more organized fashion)

Why did you decide to see Dr. Peterson?

I had a sudden illness after a severe cold/flu in March '08. Initially I had a diagnosis of mono with titers off the charts. In retrospect mere mono would've been a blessing. Unfortunately, the mono diagnosis delayed my seeking real treatment.

My spouse...

You can view the page at http://forums.aboutmecfs.org/content.php?66-Hammering-CFS-A-Vistide-Success

You can view the page at http://forums.aboutmecfs.org/content.php?67-Hammering-CFS-A-Vistide-Success