Lyme Disease and XMRV

[Sing]

Human XMRV not identical to the mouse RV

Below is one of a few messages on this forum, inc other threads, which imply that XMRV is the same as a retrovirus that mice can carry. My understanding from the WPI research is that XMRV is RELATED to that retrovirus, probably descended from it evolutionarily, but NOT IDENTICAL to it. They made this very clear, for one reason, because of the question that their tissue samples might have been contaminated by rodent dust/material, that it isn't the same RV.

There is also some discussion of XMRV/Lyme/Autism on StemCell_for_Autism2, a Yahoo list. Some parents have already made a deal with a lab to test their children, free. I wonder which lab. At their urging, I am copying their message:
==================

Fwd with permission & this message may be forwarded furtherly:

Hi
I reached out to a president of a lab that is testing for the newly found XMRV virus which is being found ninety eight percent of the time in CFS. They have had small samplings in autistic children, also testing positive. I contacted him to see if I couldn't get him to realize, that maybe this virus is passed down to baby. I have CFS and two with autism. A typical MS is also involved in this virus. If you have these two situations, CFS and Autism in your children, please contact me?

So, he offered to study the results of anyone with CFS who has a child with autism. All would be free. I would love if you can reach out to your lists, and facebook accounts, and let them know that they can test for this virus for free, for a study we are putting together. He was quite interested in the fact that this could be vectored in lyme ticks.

The virus is a mouse leukemia virus, which acts as an immune depresser much like HIV, but non fatal persistent and slow. Many who have lyme often have fatiguing illnesses. He will expose the mouse to lyme infected ticks and see if those ticks carry the virus after biting the mouse who is infected with the virus. Then, he will test those with CFS and Autism...it would be especially intriguing if you also have diagnosees of lyme disease in both? If not, that's ok, just the CFS and Autism will do. I need around fifty families with this case history.

I would need people in this study who have a diagnosis of CFS by their doctors, and of course children on the spectrum. I have contacted CFS groups, Autism groups, Lyme groups...if you have any pertinent people I can talk with, can you please contact me?

Kathy Blanco
kblanco1@...


PLEASE PASS IT ON!!!!

 

[Aftermath]

Wastebasket Diagnosis

Although I wish that Myco were more civil with the way he put it, I fully agree with him that "chronic fatigue syndrome" is indeed a wastebasket diagnosis.

Not because the illness does not exist--all of us here most certainly know that it does--but because science has been clueless to any possible mechanism our causation.

Instead of trying hard to elucidate a mechanism, medicine--led by the CDC--did indeed create a wastebasket diagnosis and threw us in it.

For years, I have been speculating in various online forums that it's very unlikely that all of us suffer from the same illness. I figured that as each cause behind a subset were uncovered, that those people would be removed from the CFS definition.

When it looked like Dr. Montoya was on to something with HHV-6, I thought for sure that those people would no longer be considered as having CFS, but HHV-6 related encephelopathy. I then envisioned other causes being identified and more and more people removed from the CFS wastebasket until only those with what would later be called "Reeves Disease" remained.

He is without question correct that some people diagnosed with CFS actually have chronic Lyme Disease, although I think that the percentage is far lower than a lot of Lyme proponents make it out to be. Moreover, the links to mycoplasma (let's remember that Dr. Nicolson swore that it caused GWS as well, and a big study cast a lot of doubt on that) and CPN (Dr. Stratton's work) are on far less solid ground with regard to publication that XMRV. Still, I'm not discounting them altogether.

Here's to hoping that a heck of a lot of us get removed from the CFS wastebasket and relabeled as having XAND.

 

[myco]

All is was stating was what Aftermath so eloquently wrote above.

You forget that I was one who was given that wastebasket diagnosis. Like everyone here, I wanted answers. The CDC and their minions named it, not the patients. It's a terribly insulting, belittling label.

I found my answer, I know many of you have not and I am sorry for that. I hope XMRV is the answer for some of you. I still believe that those CFS patients who have not been tested for Lyme and co. should be, that's all was I trying to convey here.

I was also positive for Mycoplasma Pneumoniae, which is what lead me to antibiotics, and I know from experience it is an incredibly difficult bug to erradicate. I have done much research in the area for other reasons.

Be well.

 

[Sing]

Thanks Levi

Quoting from Levi above:

"...dropped out from the CFS scene/circuit because nothing was happening of interest to me, and I did not resonate with the various vocal factions representing the disease. I found my own alternative treatments, stabilized, but never got well. And the drift towards CFS/psychosocial issues like "child abuse" was maddening. Only family members and close friends ever found out about my diagnosis, and we almost never talk about it. Maybe "purgatory" instead of wastebasket? The term does not insult me, it fits my experience.

XMRV is the only thing to pique my interest in over 25 years. It has my full attention at the moment."

I am moved by what you have written here about your experience. I really appreciate your self disclosure. My experience with CFS has been very similar--

Cecelia

 

[JanisB]

anyone have the full url for this?

Anyone have the full URL for this study? I have a child with autism and I have ME/CFS. Please PE me.
Janis

There is also some discussion of XMRV/Lyme/Autism on StemCell_for_Autism2, a Yahoo list. Some parents have already made a deal with a lab to test their children, free. I wonder which lab. At their urging, I am copying their message:
==================

Fwd with permission & this message may be forwarded furtherly:

Hi
I reached out to a president of a lab that is testing for the newly found XMRV virus which is being found ninety eight percent of the time in CFS. They have had small samplings in autistic children, also testing positive. I contacted him to see if I couldn't get him to realize, that maybe this virus is passed down to baby. I have CFS and two with autism. A typical MS is also involved in this virus. If you have these two situations, CFS and Autism in your children, please contact me?

If not, that's ok, just the CFS and Autism will do. I need around fifty families with this case history.

I would need people in this study who have a diagnosis of CFS by their doctors, and of course children on the spectrum. I have contacted CFS groups, Autism groups, Lyme groups...if you have any pertinent people I can talk with, can you please contact me?

Kathy Blanco
kblanco1@...


PLEASE PASS IT ON!!!!

 

[JanisB]

Is the more PC term. But aftermath's point is spot on. I ended up in a wasteland, if not a wastebasket.

XMRV is the only thing to pique my interest in over 25 years. It has my full attention at the moment.

One of the ideas that seemed to be circulating at the CSFAC is that we all share something (perhaps XMRV) that damages the immune system (low NK, high cytokines, high chemokines, overactive % of T cells) and makes us susceptible to lots of opportunistic infections. It was suggested that our varying symptoms could be due to differences in the infections we get, as is the case with AIDS, where some have one parasite, some another, some one kind of cancer, etc. The big question is whether XMRV starts the whole thing rolling or is just another one of the terrible chronic infections that weakened people acquire.

But eradicating the pathogens without supporting the health of the immune system and other systems often fails to get a person truly well, because you can't kill off 100% of the invaders, and what is toxic to pathogens is often toxic to healthy cells too. You can get 'well' from sinusitis with abx, for example, but later if you go through homeopathic treatments, you'll get symptoms of sinusitis again as the body clears them. I know it seems mystical, but it's been my experience and that of many others for over 150 years.

I'm glad some of you got well from abx alone.

 

[Sing]

To the Thread

I really appreciate all the intelligence and sincerity in these postings--on the whole forum--but especially when it gets tricky and there are overlapping or contradictory idea, such as with Lyme, ME/CFS and XAND, in this thread.

I do think we are sharing information, experiences and hypotheses, and that this is really valuable, and what we can best offer. The only caveat I have is that of hypotheses being interpreted as facts, like becoming rumors, and for those to affect personal medical decisions and treatment protocols, when these are still only hypotheses. I think we are usually trying to be careful and I want us to continue being so. This way we don't inadvertently end up offering "bum steers", but help each other instead. When there are cognitive deficits especially!

Thank you all,

Cecelia

 

[Robin]

The only caveat I have is that of hypotheses being interpreted as facts, like becoming rumors, and for those to affect personal medical decisions and treatment protocols, when these are still only hypotheses.
Cecelia

Beautifully said. Cecelia. There is no conventional effective treatment for CFS, so, we are left with anecdotes from other patients and physicians. Anecdotes are not science. As we have seen on this thread, antibiotics have both cured people and hurt people. Any treatment should be considered with caution.

 

[Samuel]

What is the 5 year window?

Antibiotics are safer than antivirals but there are still risks with long term use. I can think of two right now (chlostridium difficile, which my grandmother passed away from this spring, and associated increased risk of breast cancer) but I'm sure there are more. Insurance companies may balk about paying for the antiobiotics, so the cost is something to consider, as is the possibility of the antiobiotics not working/making the symptoms worse. As wonderful as your recovery is, there are people who don't get better on antibiotics. And, with any treatment that is of long duration there is the possibility that improvement is coincidental, especially within (Dr. Bell's famous) five year window.

Could you explain what this is, Robin? If I don't know, and I don't, perhaps others don't also.

Thanks.

 

[Robin]

Could you explain what this is, Robin? If I don't know, and I don't, perhaps others don't also.

Thanks.

Sure. It from Dr. Bell's book, the Doctor's Guide to Chronic Fatigue Syndrome. I'm not sure if he based on it research or just clinical observation, and I'm paraphrasing from memory since I don't have the book anymore, but he claims that recovery happens most often within 5 years of onset, and after that recovery is rare. That's been my observation as a long term patient, too. (Though I have known people who recovered after 5 years.)

For what it's worth, the CFIDS Association says this:

What's the prognosis for persons with CFS?
Debate still surrounds the prognosis of CFS. Based on limited research data available, it appears that the majority of patients with CFS improve within five years of becoming ill. Based on statistical data from the Centers for Disease Control and Prevention, if symptoms last for five years, it is unlikely that the illness will improve significantly in subsequent years.

Majority of patients improve in five years? They don't cite anything or mention full recovery either, so, this is an unsatisfactory and vague answer imo.

Here's an analysis of prognosis studies in the UK, which are littered with references to psychiatric comorbitiy and patient attitude, so take it for what it's worth. They report lot of patients improve but few fully recover.

I just don't think this issue has really been studied well.

I brought up the five year window to point out it would be difficult to determine if taking antibiotics for several years influenced recovery, or was coincidental to it, as the expert thinking in CFS is that recovery can spontaneously occur in first five years of illness.

Finally, I thought I would share this gem from the Journal of Traditional Chinese Medicine. Apparently intelligent turtle massage, whatever that is, can improve immune function in CFS! That has nothing to do with prognosis, it just made me laugh.

 

[Samuel]

Thanks, Robin.

 

[Samuel]

Differential diagnosis how?

Hi all,

I have been sick for decades, and now bedbound except
bathroom, but I have never been differentially
diagnosed[1].

As a young child, I came home with dog ticks on me all the
time, in (what I know now was) a seriously Lyme-infested
state, and had lots of health problems (photophobia, bad
conjunctivitis, colds and flus that lasted a long time,
delayed sleep phase, nosebleeds, fatigue, often malaise and
nausea, occasional IBS, difficulty being vertical,
difficulty with exercise, allergies leading to me
self-administering allergy shots at that age), but no clear
memory of rashes or deer ticks.

As an adult, I lived in a place with a strong pesticide
smell, and got a lot worse then. I then lived in a place
with serious levels of mold, and got a lot worse then
also.[2] It seems that I was (briefly) present for an
outbreak or two, strangely enough, but as an adult.[3]

Doctors were useless, so I bought medical textbooks[4]
about a decade ago. I saw "CFS", but it seemed nonspecific,
psychiatry-leaning in a vague and patronizing way, and
didn't mention many of my important signs and symptoms
(e.g. reversed phase sleep (at the time), IBS, prostatitis,
sinusitis, staph salivary gland abscess still infected,
weird hormones, RSI, my childhood symptoms, Canadian 2003).
Exhaustion, sure, you could call that fatigue, but they
listed many other diseases with fatigue. CFS therefore did
not seem at the time to fit. More symptoms since then.

I was off the net for more than a decade, was not aware of
support groups, and did not become politically aware until a
year or two ago (already bedbound). From childhood to my
40s I was unaware that there were other people on the planet
dealing with something similar. Probably a common story.

This is the key question for me:

How do I get an appointment, on the phone or (with
difficulty) in person, with somebody who understands how to
differentially diagnose? And who? Geographically and for
knowledge, Peterson would be perfect, and I want this, but I
dread the prospect of even trying to get in touch with him,
as there are 17 million people wanting to.


Thanks.


Samuel


[1] Diagnosed by non-differentially-oriented doctors
with CFS, Lyme (by a self-described LL RN via physical exam
that included vibration testing), and many other things, but
they did not consider my other diseases or diagnoses.

[2] Been on oral Lamisil for a decade. Worried about
liver. Been on Nystatin tablets for years. They only
barely, and sometimes not, keep me from bad, months-long
coughs. Hypersensitive to mold. Why can't I shake it?

[3] I think I was in the vicinity around the time of the
Chapel Hill and Incline Village outbreaks (though only for a
day at Tahoe and short visits for dinner to Chapel Hill),
but nothing happened at those times that seems potentially
significant except after Tahoe significant worsening of IBS
and reoccurrence of conjunctivitis (which had been less bad
for a few years).

[4] Harrison's, Lange's, etc.

 

[Samuel]

A few more possibly diagnostic factors

I forgot to mention other factors. I fit Canadian 2003 very
well. Fog, concentration, short term memory, etc. Slurring
of speech when bad. Cannot see out of R eye well.
Fasciculations. Restless legs. Pins and needles. Constant
upper back pain often 6 level, sometimes worse, sometimes 3
level. Hyperalgesia. Surgery that was supposed to require
only half a Vicodin caused 15 hours straight of 9.99 level
pain that morphine barely made a dent in. Allodynia, which
varies but is quite often. Fibro (diagnosed twice) often
bad.

Here is a possible diagnostic. As a teenager, had a strange
thing: for 2 weeks, I had to sleep 23 hours per day. No
other symptoms whatsoever except that near that time I had
red streaks on legs and swollen groin lymph. Did anybody
else experience something like this?

Also, I don't know if it is relevant, but when I was a child, Malathion was sprayed a fair amount on an avocado tree in my bedroom.

(I keep thinking of new things. Alpha intrusion into delta sleep. Both central and obstructive apneas, etc. I will stop adding stuff now as it's probably of little interest.)

 

[Advocate]

I will stop adding stuff now as it's probably of little interest.)

It is of interest, Samuel.

Where are you on the David Bell Disability Scale, which Cort has included in a Sticky on XMRV test results?

 

[Samuel]

10. Thanks for your interest, Advocate.

 

[klutzo]

Confused with a question and a comment

Hi all,
I have been reading this thread with interest. I am hoping some of you CFS experts can help me feel less confused.

I was diagnosed wrongly with MS first, then correctly with FMS, and then Lyme. I meet the newer criteria for CFS, though I did not meet the old criteria where symptoms and signs were divided in separate sections. (I have no sore throats or swollen lymph nodes). But, since the illness that took me out of the work force started with a flu that I never got over, I've felt for awhile that CFS was the Big Kahuna for me.

My Lyme dx was done with Bowen QRiBb, a test which shows the actual organisms in any of their various forms under a special fluorescent stain in the blood. I had the maximum possible amount of L-forms (cysts). This test's newer version is paid for by Medicare, so they seem to think it's valid.

I had no memory of a rash, but after 2 yrs. of working up to a high enough dose of Samento (proven herbal Lyme tx), I developed 3 of the EM rashes in a row, all in the most common spot where people are bitten by ticks. I was told this could happen during tx and it was strange to see. I cannot take the ABX due to allergy, so have not had any. I continue to get worse, and am much, much worse since stopping Samento.

My question:
I have classic FMS; no question about that dx. Can someone please tell me exactly how bad the post-exertional problem has to be and how long it has to last to qualify as the diagnosis defining PEM of CFS? I keep reading this is THE symptom you must have, but have never seen it defined with parameters that exclude anyone definitively. I have been on many forums, read a ton of things, including all of Osler's Web, and am still left wondering whether I or do I not have CFS.

My Comment:
Going only by people I actually know in my life, I have one good friend who has classic Lyme with facial twitching, only one swollen knee, etc., and lots of ABX has done nothing for her that I can see except empty her wallet.

On the other hand, the younger brother of another good friend with proven Lyme has regained the ability to work full time and is running in marathons! However, if he misses ABX for even 3 days, he can't go to work. It looks like he must stay on ABX for life.

What is the difference between these two? He was diagnosed almost immediately. She was diagnosed decades into her illness. I wonder if anyone has done a survey on that in Lyme. Maybe there is a 5 yr. window for Lyme as well as CFS.

I ran a FMS support group for 10 yrs. CFS people came to my group often and I could always pick them out. The symptoms they complained of were almost completely different. I also noticed what I at first thought were two stages of FMS, early and late. But as the years went on, the people with mild illness that I had called "early" did not get any sicker. The very ill people like me, kept getting progressively worse and worse, something that is not supposed to be a characteristic of pure FMS. Maybe those were the ones who had FMS secondary to Lyme. Just speculation.

Thanks for any answers to my question,
klutzo

 

[Sing]

Response to Samuel

Samuel, your story is of great interest! I am only wanting it to be in a couple of other places in this forum, where others can read it and respond, both personally and also with their suggestions and leads. Maybe you could copy it to these spots, or an Administrator help to advise you on this--?

I'm thinking that the development of a standard test for XMRV and a confirming follow up study, will be key for a lot of us to start to get some effective help.

Cecelia

 

[jenbooks]

Thoughts--written from a moderately toxic hotel room that has less febreze and air freshener than others and whose window opens three inches but is still making ms feel weird and edgy and prickly and angry and may affect my sleep tonight (finding healthy hotel rooms us a true crapshoot these days. The Hampton Inn on Greenvilld is terrific and they don't use stinky air fresheners but the Hampton Inn here in Fredericksburg is both moldy AND had stinky air freshener in three rooms). Anyway:

Samuel, do you have CIDP or any subclass deficiencies?

Klutzo I think it's strain variation (some Lyme strains are mild but four are virulent; coinfections especially babesia; genetics (HLA subtype leading to chronic inflammatory response). I know some folks who got well after many years of symptoms tho it required lots of abx.

 

[Samuel]

Samuel, your story is of great interest! I am only wanting it to be in a couple of other places in this forum, where others can read it and respond, both personally and also with their suggestions and leads. Maybe you could copy it to these spots, or an Administrator help to advise you on this--?

Thanks, Cecelia. I will be happy to have this copied to anywhere where it is appropriate on the forum. Don't know the etiquette or the technology for that.

I am very happy that there are people who are actually interested. It means a lot to me. Wow!

 

[Samuel]

Samuel, do you have CIDP or any subclass deficiencies?

I don't know what those are. If they are on a normal immune panel, then I can try to find my circa 1999 results.