Paula Carnes

Where is Dr. Mikovits? Here is the answer.

pjeanneus — Thu, 15 Dec 2011 05:57:40 +0000

This news is not a novel. It is actual news from a woman who wrote a novel about chronic fatigue syndrome. And it is good news for all of us.

http://www.cfsnovel.com/blog/?p=409

XMRV, Oxygen, CCSVI and the Kitchen Sink

pjeanneus — Fri, 09 Dec 2011 01:34:14 +0000

I haven’t posted in awhile, mainly because I don’t have big news yet. However, I remain hopeful – just call me “PollyAnna”. Well, maybe PaulaAnna.
I did get tested for XMRV at the Whittemore Peterson lab. My blood test was negative. Dr. Mikovits even looked at my blood sample and found nothing. She suspects I have a different variant of the retrovirus. That may be, but, at this point, it is anyone’s quess. Given that the VIP lab was found to be contaminated with the mouse retrovirus, I was actually pleased that I tested negative there. That’s better than a false positive, right? Okay, it’s all a confusing mess.
I hear that research on a retroviral cause to chronic fatigue syndrome is ongoing. I can only hope and pray that Dr. Mikovits’ work will continue, that the Whittemore Peterson Institute will drop charges against her and allow her access to her research. The WPI may own the research, but in a perfect world they would want her to continue studying this infection. Dr. Paul Cheney’s comments on this are encouraging. http://j.mp/szQUhQ
Meanwhile, like all patients, I continue looking for treatment. One of these has been CCSVI. CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis. http://www.ccsvi.org
I was tested using a doppler scan of neck veins which revealed obstruction of the veins and reflux of blood back into the brain. It turns out Lyme patients have CCSVI just like MS patients. So I traveled to Seattle, Washington to have the venous angioplasty treatment. My experience was amazing. The doctor and staff were excellent. When I woke from the mild anesthesia I was surprised to note that my constant headache of six years was gone. I had a return of the headache about three weeks later, but it is not constant. I never wake up with a headache. Also, my mental focus in better. But I still have classic chronic fatigue syndrome symptoms of extreme fatigue, swollen glands and spacial disorientation. In most patients the veins restenose over time.
Why do CFS and Lyme patients have this stenosis? I have two theories. It may be related to dips in blood pressure when standing which cause the veins to collapse. It takes a certain amount of constant blood pressure to maintain stable veins. A second quess is that red blood cells which clump together or are malformed (found in CFS) will not flow normally through capillaries. This would mean that blood flow out of the brain into the veins would be reduced allowing the veins to stenose.
My other treatment at this time is an oxygen concentrator. Since I have normal tissue oxygen levels I had to buy a used one, no problem. So far I use it one hour a day, set at 5, which is as high as my machine goes. It seems to help a lot with improved sleep and mental focus. We have been away a couple of weeks since I got the machine, and I could tell I was worse without it. It’s nice to be back home watching some stupid afternoon TV show while breathing oxygen. The only drawback is that it makes the show seem even more stupid since my brain is working better.
One final thought for now – Is chronic fatigue syndrome really Lyme? I used to be the poster child for Lyme at the CFS conferences. I clearly was an example of undiagnosed Lyme or borrelia infection, bull’s eye rash and positive lab tests, not diagnosed for years after the tick bite and then labeled as having chronic fatigue syndrome, not Lyme, until I finally got positive lab results This, along with the initial rash, convinced me I belonged in the Lyme camp. But does everyone with CFS actually have Lyme? A new study has led me to suspect that the two have a different cause. Dr. Brian Fallon, a Lyme specialist, and Dr. Benjamin Natelson, a CFS specialist worked on a study of spinal fluid proteins comparing both diseases. Turns out both diseases have about 2,700 distinctly different proteins. They are not the same disease. But there was one exception. One of the patients who tested negative for borrelia and had a CFS diagnosis patient turned out to exactly fit the proteins found in the Lyme patients’ spinal fluid. What do I conclude from this? Some CFS is undiagnosed Lyme, but not all. I am a chronic Lyme patient and may need to rethink antibiotics. Do I have CFS? Who knows.

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287

What Causes Chronic Fatigue Syndrome?

pjeanneus — Wed, 04 May 2011 17:46:27 +0000

What causes Chronic Fatigue Syndrome? Many patients tuned in to the National Institute of Health State of the Knowledge Conference on April 7-8, 2011. What did we learn?

John Coffin, Ph.D., has all but concluded that the retrovirus XMRV is not the cause of CFS. He believes he knows exactly where XMRV came from, a recombinant of two mouse retroviruses. Both of these retroviruses contaminated the Cleveland Clinic lab where they found XMRV in prostate cancer tissue. Then this retrovirus combo contaminated the Whittemore Peterson Lab were Dr. Judy Mikovits found XMRV in 95% of CFS patients and 3-4% of seemingly healthy people tested. A similar retrovirus contaminated the NIH lab used by Drs. Alter and Lo. How did these labs get so dirty? They used contaminated products or they had mice running around at night while humans were sleeping. Dr. Coffin even shared a picture of a mouse sitting on a block of cheese.

Coffin’s conclusion? XMRV is an endogenous retrovirus, a retrovirus that has integrated into human cells. XMRV has been around a long time and is found in lots of humans with no effect on their health. Strangely, Dr. Coffin didn’t find it in any of the samples he studied.

All of this makes perfect sense, right? WRONG. It makes no sense at all. Dr. Coffin is speculating to rationalize why he didn’t find XMRV, while others did. Either the labs finding XMRV are contaminated or the retrovirus other labs found in human cells is harmless. Neither theory fits reality.

There is no evidence that either Mikovits’ or Lo’s labs were contaminated. In fact they both stated they tested repeatedly to be sure there was no contamination. There is, in fact, a total negation of that theory since patients have produced antibodies in their blood to XMRV. This cannot possibly be explained by lab contamination of a blood sample. It also cannot be explained by assuming that XMRV is endogenous – a harmless retrovirus hanging out in human blood and tissues. We don’t produce antibodies against something harmless. Furthermore, it cannot explain the extreme difference in the numbers of CFS patients versus the healthy people also carrying XMRV – a difference ranging from 97% to 4%. This extreme difference strongly supports the notion that XMRV makes you sick. Coffin’s second theory, that XMRV is a harmless endogenous retrovirus, does not explain why Coffin’s lab found none.

Why can’t Coffin find XMRV? Cort Johnson interviewed Dr. Brent Satterfield who owns Cooperative Diagnostics where they are developing rapid testing for various infections. Satterfield charged patients a lot of money to detect XMRV. Turns out Satterfield didn’t find one patient infected with XMRV. Not one. He, in fact, charged patients to allow him to look for XMRV when he had NEVER FOUND XMRV IN ANYONE. He made fun of Mikovits for needing a post doc working for her to look up how to run PCRs in some lab books, like she wasn’t smart enough to know how. Mikowits stated, Nested PCR of cultured samples provided the best results for XMRV detection, it amplifies single molecules within a large sample… You really have to optimize the magnesium and base everything on the annealing temperatures.

Here is a link to Cort’s inteview with Satterfield. http://phoenixrising.me/?p=5132

Here is a link to Dr. Mikowits’ comments on PCR testing. http://www.cfidsresearch.com/xmrv

I have to wonder, if you increased magnesium and heated things up a bit would you miraculously produce a new retrovirus? The fellow running the lab in South Carolina invoked God and compassion. Can someone please invoke the use of the human brain to see the obvious? XMRV is real but quite a few labs have no idea how to find it.

I was going to write a detailed overview of the science discussed at the state of the knowledge conference, but I decided, since this is my writing blog, that a better use of my time would be to work on getting my new novel published. My novel is more true to life than some of the science presented at the NIH State of the Knowledge Conference.

Dr. John Coffin said, “…leave XMRV behind.” Dr. John Chia wants us to consider enterovirus in the gut as causal, because he found 85% of CFS patients have enterovirus in the gut. Some are still knocking on the door of Epstein Barr virus or chronic mono, yet Erik Johnson will tell you plainly he was in the original cohort of CFS patients at Lake Tahoe and has never had mono, ever. My personal pet infection used to be mycoplasmas. Other researchers suggest patients have various infections. A lot seem to have Lyme disease. So why not leave XMRV behind? Never mind that Mikovits has found 97% of patients testing positive. If those other 3% are negative XMRV must not cause CFS, right?

But here’s the problem: we don’t have a good test yet, and there are other strains – PMRV anyone? That’s P for polytropic, probably what Alter and Lo found. This is getting complicated. Let’s leave XMRV behind, PMRV too. My head hurts.

Katie, bar the door! Do not let XMRV escape. You researchers don’t get off so easy. Think about the theory – XMRV suppresses the immune system and feeds off of stress steroids such as cortisol. You get mono, or you get an enterovirus or Lyme. You miss some sleep. You are stressed. What you don’t realize is that there is a monster in the closet, in your immune cells, and it ain’t mono or an enterovirus in your gut. It’s a retrovirus that won’t let your immune system control these common infections. You can treat the secondary infections and maybe, just maybe, recover for a few years. But the next stressor or infection is bound to happen. It’s just a matter of time and stress before you relapse.

We have to spend the money, do the research on XMRV. Now is not the time to simply move on and let XMRV walk out the research door.

Lo and Alter at the NIH “Is There a Virus?”

pjeanneus — Thu, 10 Mar 2011 00:52:06 +0000

Mycoplasma has played a role in my chronic fatigue syndrome. I tested positive for mycoplasma fermentans (incognitus strain) about six months into my illness. So when I heard that Dr. Shyh-Ching Lo MD, PhD, the discoverer of mycoplasma incognitus, would present information on the new retrovirus, XMRV, I tuned in.

Dr. Harvey Alter, MD spoke first. He is the researcher at the National Institute of Health who codiscovered hepatitis B. When I heard that he and Dr. Lo had worked together finding a retrovirus closely related to XMRV I was excited. The lecture is 122 minutes and is located at this link:

http://videocast.nih.gov/summary.asp?Live=10012

Here is what impressed me from Dr. Alter’s talk.
Chronic Fatigue Syndrome is a very mystifying disease. If you ask a student a question he doesn’t know, the student will say,”I don’t know.” If you ask the professor such a question he will say, “The answer is not known.” Alter demonstrated professional humility.
There is ongoing debate as to whether CFS is medical or psychological.
We do not know if XMRV is causal.
Feline leukemia virus and HIV are both retroviruses. They both start with infection, they both have outbreaks in communities. XMRV is closer to the feline leukemia virus and is a simple virus in the gamma retrovirus family. It is exogenous or coming from the outside, not encoded in the human genome.
Rnase-L function is not functioning correctly in both CFS and cancer.
CFS patients often have active herpes viruses and suppressed immune function. The onset of CFS with accute infection suggests immune deficiency.
Mikovits et al found 67% of CFS patients were infected with XMRV. They also found antibodies to XMRV in patients. They could grow XMRV in tissue cultures, and they infected 3 chimpanzees with XMRV. Two of the chimps had an accute viral infection, while one was infected but showed no symptoms.
Dr. Lo in 2010 analyzed blood samples from Dr. Komaroff and discovered 86% were infected with a closely related polytrophic murine leukemia virus. Controls tested positive at about 6%. This seemed to support Mikovits’ findings. [This may be the P variant many of us have who are not infected with XMRV. Only more research and testing will tell.]
Dr. Mikovits reported at the NIH conference on XMRV that she found 48% of CFS patients were positive, contrary to the British studies of these same samples as being all negative.
Five articles were then published suggesting all of these findings were due to contamination. At this point Dr. Alter left us on the altar waiting to see if this discovery would be sacrificed to contamination theories.

Dr. Fred Gill, MD was introduced as a doctor who specialized in treating CFS. Gill worked closely with Dr. Straus who was Dr. Gill’s mentor. Gill added little to nothing in regard to any relationship to a possible new retrovirus. He did say that until we had some link to a virus it was difficult to diagnose CFS. He claimed that connections with a diagnosis of neurally mediated hypotension did not hold up. Many patients did not have this. As to treatment he stated that only graded exercise and cognitive behavioral therapy were any help at all. He said that “adaptive pacing therapy” was not helpful. Patients needed strenuous exercise on a continual basis. This was the only thing he ever saw which helped his patients. [I tried to rationalize why this seemed to help his patients and many fibromyalgia patients. The only idea I could come up with was that exercise boosted the immune system and may help reduce viral load, if viral load is part of the disease.] He was asked if Provigil was used to treat CFS. His reply was, “Not to my knowledge.” [I had trouble taking his knowledge seriously since several CFS doctors have used Provigil for their patients. http://aboutmecfs.org/Trt/TrtProvigil.aspx]

When Dr. Gill concluded, the MC had a bit of trouble with his microphone and was asked, “Do you need some cognitive therapy?” As a CFS patient of fifteen years I was disgusted.

Dr. Lo stepped up to discuss XMRV. He spoke with a tone of compassion and gravity never once making light of this serious, life-shattering illness. His first comments harkened back to the mid 90s when he looked for mycoplasmas in blood samples from CFS patients and AIDS patients. He did not find a causal relationship. But in 2010 he got the CFS blood samples he had frozen in storage and studied them for XMRV. He also studied samples sent by Dr. Komaroff from patients during 2003-2006. Dr. Lo found 86-87% of these samples were positive for a polytropic murine leukemia virus, not quite the same thing as xenotropic murine retrovirus. Still patients seem to be infected with one or the other retrovirus at a much higher rate than healthy controls.

Lo suggested that we must always be concerned to rule out contamination by mouse DNA. He tested for mouse DNA genome using a sensitive assay and found no mouse DNA. “We have to develop a very sensitive assay…we chose to study mitochondial DNA…” Lo said. What he found studying mouse and human virus was “very different.” Lo was very certain their samples were not contaminated with mouse DNA.

Why are various studies not finding this retrovirus? Dr. Lo gave several posibilities and pointed out that a German study found it in respiratory secretions. Lo suggested that the patient groups may be different and preparation of samples may affect whether the virus is found. His top pick was that the PCR protocols used were different even though the scientists claimed they used the same protocols. For instance, there were variations in the number of cycles, the level of magnesium used, and the temperature of samples. Obviously there is a very low grade infection in the blood. Lo said that it was far to early to determine if it is causing disease.

The NIH sent the CDC four samples. Two of these four had been positive at the NIH lab. The CDC found all four negative. The CDC sent samples to the NIH. The NIH found only one of them positive. The Whittemore Peterson Institute have found antibodies and have cultured the virus. The Heart Lung Institute in conjunction with NIAID are working to reproduce results. Lo went into great detail explaining what might be wrong or right with various studies. Check out the link for more details.

Does this retrovirus cause disease? In an animal model the 3 chimps got infected but were not fatigued.
The later part of this conference while the audience asked questions there was a huge polar bear in the room. It was lying on its back up on the screen, chronically fatigued. I was reminded of prior conferences over the years in which CFS patients became so tired they laid on the floor along the walls or out in the hallways.

One patient who had managed to get into the conference asked about Ampligen and was told there were no studies to show it worked or didn’t work. She kept insisting there were studies, but her comments were ignored. Somewhere in my mind I seemed to recall quite a few studies of Amligen. I even found one in my files. http://www.pharmalive.com/News/index.cfm?articleid=185818&categoryid=40

When someone started discussing the use of Florinef I figured I must have gone in the wrong room. This conference was no longer about XMRV. It had evolved to tired polar bears and bad jokes. Drs Lo and Alter emitted the one ray of light in a dark hole.

XMRV in Monkeys by ALISONNIC

pjeanneus — Mon, 24 Jan 2011 02:59:11 +0000

I am reposting this from the CFIDS Forum at

http://cfidswatch.blogspot.com/2011/01/macaque-monkeys-and-xmrv.html

This disease has made monkeys out of some of the smartest humans.

THURSDAY, JANUARY 6, 2011

Macaque monkeys and XMRV
Possibly the most significant CFS-related research published last year was done by a group connected with Emory University, Abbot Labs, and the Cleveland Clinic.

Rhesus macaque monkeys were injected with XMRV, and then their blood and organs were tested to track the progression of the infection.

After a few weeks, XMRV was almost totally gone from the blood. But the infection had spread to many of the organs, including the lungs, spleen, liver, lymphatic system, bronchial passages, gut, and the sex organs.

When the monkeys were later injected with a bolus of foreign peptides (which mimics an acute infection, an immunization, or an acute mold exposure) there was a huge reactivation of infectious XMRV. Stress and certain hormones also appear to be significant reactivators.

This study is quite consistent with my observations of the behavior of my own illness over the past 16 years. It also sheds new light on several recent studies which failed to find XMRV in the blood of patients with XRMV.

I believe this study should provide new impetus and direction for future XMRV and CFS-related research. [Links to Cheney’s discussion of this study and more are at the CFIDS Forum site.

POSTED BY ALISONNIC

Lannie’s blog shows Mikovits’ slides

pjeanneus — Fri, 21 Jan 2011 05:52:53 +0000

Here is a link to Lannie’s blog. She has done a great job using the slides Dr. Mikovits presented and summarizing them.

http://lannieinthelymelight.blogspot.com/2011/01/part-1-11711-xmrv-presentation-by-dr.html

Testing Negative – Staying Positive

pjeanneus — Thu, 20 Jan 2011 04:58:49 +0000

I made the long trek from Las Vegas to Santa Rosa hoping to find answers to mysterious questions such as “What is the origin of XMRV?” or “Why would a retrovirus spread like an epidemic at Incline Village in a high school?” Do I have more answers now? I do know I made a wise choice to drive from Vegas. My trip was more fun than Dr. Mikovits’. She was stuck on a plane in Reno for several hours.On the way up I marveled at the mysterious fog covering California. On the way back I wondered at Santa Cruz seeming to be a ghost town with virtually every beachfront restaurant not open for breakfast. There’s a lot I don’t understand. I did get some clues as to why I test negative so far for XMRV. I got answers or “almost answers” to many questions about this creeping retrovirus, XMRV. Here I am listing my observations. I will post a link to Dr. Mikovits’ presentation as soon as it is available.

The retrovirus(s) has a high level of sequence diversity or different strains. The NIH (Alter and Lo) found a P (polytropic) MRV strain. This means that if you are infected with the PMRV strain you will currently test negative at The Whittemore Peterson Institute (WPI). Mikovits is working to develop more accurate testing for both strains. She hopes to have a test for PMRV by June 1, 2011.
It takes up to 45 days to grow a culture from blood, if the retrovirus is in the blood at the time.
XMRV leaves the blood and hides out elsewhere in the body until you are stimulated with another infection. [This could explain that the early outbreaks at Incline Village, NV, Lyndonville, NY and Raleigh, NC were caused by a secondary contagious infection superimposed on an existing XMRV infection.] Replication of XMRV is stimulated by inflammation and hormones.
There do seem to be clusters of 20 to 400 patients in outbreaks in specific locales.
Possible infections that enable XMRV to multiply would include EBV, HHV6, borrelia, babesia, bartonella, other?
In families where there is XMRV infection 30% will develop severe mononucleosis (EBV) at puberty and never recover.
If you test negative for XMRV in blood it may be because XMRV is not actively replicating in the blood. Dr. Cheney has suggested getting a flu shot which may activate the XMRV. [I think this may have been a joke: not that it wouldn't work.]
In chimp studies the virus very quickly left the blood and went into reservoirs, lymph node, spleen, liver – maybe thyroid, sex organs, adrenal glands, salivary glands, brain.
Current studies are ongoing (Eva Sapi) to see if there is an animal vector (mouse, tick) that might carry XMRV. [See Dr. Timothy Luckett http://cfidsresearch.blogspot.com/2011/01/xmrv-could-likely-be-emerging-zoonotic.html]
Stress elevates cortisol levels which would in turn activate XMRV.
Patients who are the sickest and patients sick for the longest time tend to test positive with XMRV in the blood.
Some patients have a positive culture test but no antibodies. If they are treated and begin to get better antibodies for XMRV will show up.
Paul Cheney, MD at the Cheney Clinic in North Carolina is seeing 81% of his chronic fatigue syndrome patients testing positive for XMRV. Males and females are equally sick with CFS. Family members of CFS patients are testing positive for XMRV at a rate of 50%. Family members are commonly found to have these issues: autism, fibromyalgia, mononucleosis and cancer.
Given the high percentage of family members infected, transmission must be both casual and blood borne.
The immune system of an XMRV positive CFS patient is found to be low in NK cells, CD56, DC19+ B cells are replaced with DC20 B cells which are immature and poorly functioning.
Rituxan, a drug approved to treat rheumatoid arthritis, functions by killing these immature B cells and may work to kill XMRV by killing these infected B cells.
One Lyme specialist found that all 65 Lyme patients he had tested for XMRV came back positive. Gordon Medical found 50% of their CFS and fibromyalgia patients were positive.
If you have any of these labels you may find you are XMRV positive: Lyme, MS, Parkinsons, ALS, peripheral neuropathy, autonomic neuropathy, dementia or Gulf War Illness.
What can we do to treat? If you test positive you may want to get an AIDS specialist to prescribe a triple combination of antiretrovirals: AZT, raltegravir, tenofovir. Dr. Joseph Brewer is finding his patients with XMRV are showing 20% improvement on these anti retrovirals.
If you don’t want to take those yet, even though they are very safe under a doctor’s supervision, you can do some things a lot of us have already found helpful, namely boost the immune system and treat co-infections.
Antibiotics for Lyme disease infections may be help. Antivirals for HHV6 and EBV may help.
In Japan there was an epidemic of HTLV-1. Stopping breastfeeding stopped the epidemic.
Taking anti-inflammatory drugs will reduce the replication of XMRV. If you can reduce inflammation and lower cortisol you will reduce XMRV. [This could explain why some of the natural treatments have helped CFS patients including meditation and deep breathing.]
Potential treatments, for now, include reducing oxidative stress, increasing methylation and raising glutathione levels. [Now we see why nondenatured whey protein and B vitamins help.]
Valcyte, Valtrex and Ampligen may reduce viral co-infections.
If a patient has Lyme the treatment must include treatment for Lyme and XMRV.
Dr. DeMeirleir is experimenting with GcMAF to treat XMRV infected patients. This makes sense as GcMAF is an immune modulator used to treat AIDS and certain cancers. Google it. It can only be purchased in Europe at this time.
Stem cell therapy may be helpful in the future.
Simple things you can take now that might help include Deplin (a medical food prescription) and N–acetyl cysteine or NAC.
XMRV does seem to be related to certain cancers: chronic lymphocytic leukemia, mantle cell lymphoma an other non-hodgkins lymphomas.

We can help ongoing research by contributing to

Whittemore Peterson Institute, Reno

Mail Stop 0552

1664 North Virginia Street

Reno, Nevada 89557

In conclusion I want to say that WPI is putting together an outstanding group of researchers and clinicians to study and TREAT patients. Key clinical leadership people will be the following doctors:

Dr. Jamie Deckoff-Jones, M.D. Director of Clinical Services

Clinical Advisors will be

Joseph Brewer, M.D. Infectious Disease

Jack Burks, M.D. Neurology

Marcus Conant, M.D. HIV

Robert Fredericks, M.D. Endocrinology

Michael Snyderman, M.D. Oncology

Getting Older, Getting Well

pjeanneus — Mon, 10 May 2010 20:34:16 +0000

My report on the Age Management Medicine Conference (Las Vegas, 2009) is online at this link.

The conference had some fascinating studies presented. I think most will enjoy my brief overview of presentations which covered getting well. My two favorite topics were two Ms: ”medical foods” and “men’s sexual health.”

Here is a matching quiz. You will find the answers in my article. Here’s to your health!

Questions:

How can you repair a myocardial infarction?
Men should do 300 a day to improve erectile function.
Rosacea may be caused by this.
Informed consent is important when treating this.
Unlike supplements, these are covered by insurance.
This increases stomach acid and may help weight loss.
Growth hormone will reduce this inflammatory marker.
A cream or patch of this is safer than a pill.
This removes alcohol craving in 85% of alcoholics.
Saliva is the most accurate way to check this level.

Answers:

Cortisol
Lyme disease
medical foods
Naltrexone
HRT
Kegels
CRP
stem cells
betaine
Demodex
mite

A new day for chronic fatigue patients

Sophie — Fri, 01 Jan 2010 19:14:40 +0000

It is the new year and maybe a new day for chronic fatigue syndrome patients. I finally got my blood draw for the XMRV test. I don’t know if Medicare will pay for it, but I figure the $650 is my contribution to humanity in the quest to find the cause of CFS.

My wonderful doctor had the blood drawn in her office. Then I rushed over the FedEx to get it sent priority. The blood samples have to get up to Reno in 24 hours, or they cannot be used for valid testing.

So now I wait. But today I am starting back on anything that might have any impact on a retrovirus. I will be taking nondenatured whey protein, artemisinin and coconut oil. I am back on vitamin C and D. I plan to get some olive leaf extract, L-lysine and drink a lot of green tea.

If I get a positive PCR or culture for XMRV I will worry about whether to take AZT or other antivirals later.

Here we go….who knows where we will end.

For those who want to get tested here is the contact information for VIP Lab:

VIPdx
5625 Fox Avenue, Suite 369, Reno, Nevada 89506
Phone: (775) 351 – 1890 / Fax: (775) 682 -8517 / Email: info@vipdx.co

Chronic Fatigue Syndrome – Lyme or Virus?

pjeanneus — Tue, 22 Dec 2009 23:42:34 +0000

I never thought I would see the day when I, a chronic fatigue syndrome patient, would be happy to be grouped back in with the CFS community. I was so pleased to get a Lyme diagnosis eight years after crashing with rapid onset, flu-like symptoms, brain fog, post exertional fatigue, aka CHRONIC FATIGUE SYNDROME.

Currently I am eagerly awaiting getting a PCR and culture test for XMRV and fervently hoping I test positive. Do I have borrelia? Yes. Do I have mycoplasma? Yes. Do I have c. pneumonia? Yes. Do I have babesia? Yes. Do I care with whom I am grouped? No, as long as they can find the basic cause and treat it. IF we find XMRV in Lyme patients that may begin to explain why some of us seem to never recover and always relapse while others with Lyme get well.

Here’s the thing. If XMRV acts like the other big retrovirus on the table, HIV, it will suppress your immune system so that you will not be able to recover from borrelia, babesia, bartonella etc.

A few months ago I was up at Reno for the IACFS conference. They wanted to sort out and move out the patients with a Lyme diagnosis. I have protested this for five years. I don’t think that is the solution. We have to have valid tests for the various infections including XMRV and find out what we really have. Then we can be grouped and accurately treated in some meaningful way.

I will post more when I get my lab results for XMRV.