January 2011

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Written by Kelvin Lord

I overdid it this past weekend, and paid for it on Sunday. Nothing about this disease is predictable, except the unpredictability of it I guess, but I was feeling so good after Treatment #18 I actually got suckered into thinking I was “normal” last week. Big mistake. Talk about a roller coaster ride!
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When I was young I lived in Southern California and loved going to the theme parks in and around Los Angeles. My favorites were the roller coasters and one day, a new bigger, badder, more bodacious one opened up at Magic Mountain that I just had to try.… Read More

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Written by Kelvin Lord

I admit it. I now have a pot-belly. And it bothered me.
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After being underweight for the past 2+ years, struggling with a lack of appetite and the associated difficulties in maintaining weight, since being on Ampligen for 2 1/2 months, hunger has returned! But with it came a whole new set of problems for me.

The most obvious one is that my body looks weird to me now. Yes, I still have the skinniest legs in North America, and some years back, thanks to the gluten sensitivity and the “gluteal wasting” aspects of this disease, I lost my butt completely.… Read More

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Written by Kelvin Lord

willsmith.gifI never heard the phrase “allergic cascade” until 10 days ago, when I woke up with a nose so swollen with mucous that I literally could not blow it out. Seeing my distorted face in the bathroom mirror, all I could think of was that classic scene in the movie “Hitch” where Will Smith’s head reacts to his shellfish allergy by exploding to twice its normal size, and he starts guzzling antihistamines.

Allergy season, huh? They warned me about this little side-benefit of living here on the East Coast of the USA, but like every other “little” physical challenge we face, this seemingly “minor” irritant became a huge problem for me, because of the immune system issues it portended.… Read More

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Written by Kelvin Lord

Treatment #4

coorslightlogosilver.jpgToday’s Ampligen infusion marked the fourth and last treatment at the 200ml “adjustment” or acclimation dosage. I’m now into a quaisi-routine, arriving at the clinic around 9:30AM every Monday and Thursday morning, and the procedure goes amazingly fast. In less than 3 minutes Gwen has me hooked up to the drip bag with “miracle drug” coursing through my pipes, followed by a bag of saline solution. The entire process takes about an hour total. Starting with next Monday’s I.V., I’ll be ramping up to the full 400ml dose, which they’ll infuse a little bit more slowly.… Read More

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Written by Kelvin Lord

i.v.+drip+close.jpgTreatment #5

Today’s infusion took longer than any prior, because they doubled my dose. As promised, my Ampligen quantity was upped from 200ml to 400ml, which veterans tell me is the “full dose.” So as not to stress or shock the body with the increased chemical or the quantity of fluid going into my arm, Gwen reduced the drip rate to about 70 minutes in total. That was followed up with a bag of saline, so I was sitting in that chair for about an hour and a half.

This morning there were three of us all getting the “juice” along with two or three nurses.… Read More

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Written by Kelvin Lord

“I am thankful for laughter, except when milk comes out of my nose.”
Woody Allen
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It was Christmas time and the jazz band on the corner was playing the requisite boring Jingle Bells music. I just completed my 17th treatment yesterday, and things are going well. So much so as I passed the corner, I was reminded of how bad I felt when I arrived here three months ago. I had just come to the USA in the heart of winter without a coat, to start my Ampligen treatment, and I felt sicker than the proverbial dog.… Read More

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Written by Kelvin Lord

clean+tie+baghead.jpgWe’ve all heard the question in one form or another.

It usually comes at a time when you look better than usual, or feel worse than usual. But either way, it makes you feel the same as usual.

“What exactly is wrong with you?” they ask, innocently…not knowing that their “casual” remark has ignited every synapse in your brain and tensed every muscle in your body into an emergency-level “fight/flight” response.

How should I answer that? Because the disease we battle has not received the “press” or publicity of other better known infirmities, and is not as intuitively obvious as having one leg missing, the answer we give is not all that easy to come up with, and often provokes some strange responses.… Read More

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How Not to Become Invisible

January 20, 2011

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Written by Kelvin Lord

the_invisible_man_by_stevedore.jpgIt was worse than just being ignored. The problem was this arrogant nurse was trying to make me feel invisible - As if I didn’t exist – And that I just couldn’t permit.

It happened at the clinic. This nurse was a freelance RN hired exclusively by another patient to do her infusions at my Doctor’s office, and from day one this RN made it clear that she was above the rest of the staff and patients, using silence as the weapon of choice. Regardless of whether my greeting to her was “Good morning!” or a simple “How are you, today?”, for four full weeks she did not respond or say a word, until yesterday.… Read More

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Written by Kelvin Lord

Treatment # 8
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Today is my first month’s anniversary with Ampligen, and my body celebrated by manifesting all the signs that it was working – feeling like I had the flu. I say that only half in jest, because my Doctor confirmed last night that, after seeing patients on this drug for the past 20 years, it is a validation – if you don’t show flu-like symptoms in the early stages, something is amiss. “Congratulations!” he beamed. “That’s good news. The drug is working.” So with my eyes fuzzy, my head hurting, my bones aching and my stomach a little quesy, I forced a smile and said, “All right!Read More

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Written by Kelvin Lord

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Treatment #9

“Depression is melancholy minus its charms.” Susan Sontag

This past weekend was rough. After having 8 treatments of Ampligen over the past 4 weeks go so smoothly, I wasn’t prepared for the surprise dark cloud that rolled over my horizon beginning Friday evening. Some would call it depression, and I’m OK with that. But upon further research, I think the more appropriate term is “anhedonia.” Let me explain.

Starting late this past Friday afternoon, I began to sense an overall mental malaise come over me – a generalized anesthetizing lack of emotional feelings.… Read More

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Written by Kelvin Lord

4795-backflip-drawing.jpgI did it! The year on Ampligen is over, and I’m about to burst at the seams. Would you join me now in celebrating my victory?

If you watched the NFL playoffs this past weekend you saw the New York Jets doing on the field what I have felt like doing all week – literally doing backflips for joy. I mean, these players were so happy, they were getting airborne like circus acrobats! Why? Because they defeated a so called “invincible” enemy – the N.E. Patriots. (To see a clip of the Jets flying and flipping go here.… Read More

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Posted by Cort Johnson

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4801-XMRVSantaRosaWhatDoWeKnow.jpgPART 2: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore

Thanks again to Lannie for allowing us to post her very thorough report on Dr. Mikovits lecture. Check out her blog and the original post here.

  • [URL="http://http://forums.aboutmecfs.org/content.php?321-Dr.-Mikovits-Annette-Whittemore-Santa-Rosa-XMRV-Talk-Jan-17th"]For Part 1 CLICK HERE[/URL]

And now back to the story of XMRV. What do we know about XMRV?

What we know about XMRV is that it integrates into human tissue, demonstrating that it is a human infection. We can confirm it is NOT an endogenous virus to humans. It is in fact a new human retrovirus.… Read More

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Posted by Cort Johnson

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Thanks to Lannie for allowing us to publish her overview (complete with slide!) of the Jan 17th from talk by Dr. Mikovits and Annette Whittemore. (headings added) Find the original here

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PART 1: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore

Today I attended “Chronic Fatigue Syndrome, the XMRV Retrovirus, and the Human MLV-related Viruses: The latest on testing, treatments and research into XMRV and its relationship to chronic inflammatory neuroimmune disease, including Chronic Fatigue Syndrome, Multiple Sclerosis, Fibromyalgia, Chronic Lyme Disease and Cancer” organized and hosted by Gordon Medical Associates in Santa Rosa, CA.… Read More

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Posted by Cort Johnson

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The CFIDS Association highlighted these two stories on Laura Hillenbrandt in the CFIDSLink and they seemed particularly poignant to me since they focus on her former quite athletic life and her life as it is at present and how this formerly very athletic person deals with such a devastating case of ME/CFS. It was eye-opening to see what an athlete she was and what a sports nut she remains :) . Over a month after it was released Unbroken is the #1 Non-fiction Bestseller.

  • She will be interviewed on WTKS-AM 1290, Savannah, “Speaking of Writers” show with Steve Richards, 4:00 PM EST.
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Posted by Cort Johnson

Is 2011 going to be a big year? Yes it is! Some big issues are being decided.

XMRV – XMRV has taken a longer than anyone expected but expect some real answers this year with important studies finishing up.

* BWG – hopefully news in 6 months
* Lipkin – may take up to a year
* Lo/Alter – isolating virus, integration in human genome (?)
* Glaxo Smith Kline/CAA study – due sometime this year
* Joliceur – studying XMRV positive patients
* Dr. Mikovits XMRV immune signature paper to be published
* Miller – pilot study under way soon?… Read More

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Written by Cort

4727-CFSWorkshopApri_11.jpgMary requested this be posted. The Steering Committee is in charge of determining the subjects and reseachers presenting at the NIH State of the Knowledge Workshop in April.

Hi everyone. I think by now you know about the NIH workshop in April to prime the pump for research funding on ME/CFS by educating other agencies within NIH and scientists who might be helpful – but none of these folks know a thing about our disease except what they’ve been reading lately about the retrovirus. Now that we have their attention, we’d like to share information about other biological abnormalities, problems, dilemmas, etc.… Read More

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Posted by Cort Johnson

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4701-richConditTwiv.jpgThere was something for everybody (or not for everybody) on the Twiv podcast – yes they felt the dangers of contamination were real, no the Retrovirology papers did not prove anything, sequence variation could be confounding results, etc….

Dr. Rein has worked extensively on murine leukemia viruses and HIV. Dr. Rein noted that the gene sequences found by Dr. Lo and Alter were gene sequences commonly found in mouse DNA and in endogenous retroviruses. Dr R noted that they went to a lot of trouble to ensure that these are not gene sequences from mice.… Read More

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Posted by Cort Johnson

Looking for Happiness in an Unwell World

#1 Being and Thinking

What is ‘be- ing’? It’s very simple – almost too simple; it’s just what it appears to be – it’s just be-ing – it’s the place present just before thought… a place of stillness and peace that spiritual practitioners (and philosophers) assert is who we really are – a place of grace. When we are just be-ing in the moment things come naturally….things they flow more…..If you’re an athlete and you inhabit be-ing you’re a star…if you’re unhealthy and you inhabit being – you are at peace.… Read More

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4691-MikovitsReno.jpgDr. Mikovits noted that Dr. Sandra Ruscetti has worked on mouse viruses for almost 40 years. After work on HIV halted work on MLV’s and cancer she saved her reagents….. and these were the reagents the WPI used. Dr. Ruscetti came out of retirement to help out with the current research and she’s still there, and, in fact Ruscetti has committed to five more years of work. Dr. Mikovits noted that the mouse retrovirus program at the NCI was undergoing review as she spoke. It was an amazing stroke of luck that Dr.… Read More

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Posted by Cort Johnson

Australian CFS Science Symposium Overview by Rosamund Vallings

This is just a fantastic review by Dr. Vallings of a really exciting Conference Down Under. Lots of new research much of it directed at the immune system and the central nervous system. There are studies on the brain stem, autopsies, CNS inflammation, NPY, neurodegeneration….. Notice that the basal ganglia in the brain show up several times (this is not the first time)… Well done Australia! (Headings and photos added)

International Science Symposium on ME/CFS, 3-4 December 2010, Bond University, Queensland, Australia.

DAY ONE

Nancy Klimas and Homeostatic imbalance - The first paper was by Nancy Klimas (Miami,USA), and she presented a systems biology approach to ME/CFS.… Read More

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