Xmrv not very pleasant news

[Gerwyn]

Hematopoietic stem cells and retroviral infection
Prabal Banerjee1,2, Lindsey Crawford1, Elizabeth Samuelson1, Gerold Feuer1,2*
Abstract
Retroviral induced malignancies serve as ideal models to help us better understand the molecular mechanisms
associated with the initiation and progression of leukemogenesis. Numerous retroviruses including AEV, FLV, MMuLV
and HTLV-1 have the ability to infect hematopoietic stem and progenitor cells, resulting in the deregulation
of normal hematopoiesis and the development of leukemia/lymphoma

XMRV IS A MuLV class virus .ALL other known Mulv class viruses induce malignancies

 

[Adam]

Nice one Gerwyn. BTW is this a recent study/research paper?

 

[JT1024]

Dr. Peterson's clinic was seeing an increase in lymphoma that was attributed to the CFS outbreak there.... Found more info...see below:

Of all the problems associated with ME/CFS one would have hoped that the ‘Big C’ wouldn’t be one of them. But the evidence presented at the conference suggests that at least with this particular cohort of patient it’s a very real problem.

Dr. Peterson got Dr. Mikovits, a cancer researcher, interested when he mentioned at a conference in Spain that he had nine patients with Non-Hodgkins Lymphoma (NHL). NHL strikes about 2 out of every 10,000 people in the US (0.02%) but a full 5% of Dr. Peterson’s Nevada cohort had developed it. Even more striking was the type of specific of type of lymphoma he was finding.

Mantle Cell Lymphoma is a form of non-Hodgkins Lymphoma (NHL) that is almost vanishingly rare. If my back of the envelope statistics are correct MCL strikes about 1 out of every 100,000 people …but thirty percent of Dr. Peterson’s ME/CFS cancer patients had it. That’s the kind of finding that will turn a cancer researchers head and it got Dr. Mikovits, a viral cancer researcher associated with the HHV-6 Foundation’s attention. She told me she knew right away that ‘that’s a virus’. She was soon off for the summer to Reno to look more closely at this cohort.

Dr. Gagen, a biostatician was engaged to take closer look at this cohort. Was it real? Her presentation was fascinating. She began to work her way down her slides of the region. Yes there was a large cluster of cancer cases in the general area. But where exactly was it? She ticked down several slides narrowing the focus – and then there it was - one brightly highlighted section almost pulsing out at you – Incline Village. It was an eerie moment. Even she said she was surprised to see that location pop out so vividly.

(Most people in Dr. Peterson’s cohort do not have cancer but enough of them do have these rare cancers to make the group stand out. Dr. Peterson pointed out two patients in an early North Carolina cohort with this type of cancer but what about other physician’s patients? If they’re there we haven’t heard of them. At a recent seminar Dr. Peterson recommended that physicians with long-term patients screen them for cancer.)

The cancer subset was real. Now the search was on to find its cause. Dr. Mikovits, our connection to the National Cancer Institute, felt it had to be a virus. But which one? The WPI set out to find out. But first a little about the lead researcher at the WPI.

More info here: http://aboutmecfs.org/Conf/IACFSME09WPI.aspx

 

[Knackered]

My brother had lymphoma when he was 18, I wonder whether it's related. Other than that everyone else is healthy, no one's had cancer and no one has M.E.

 

[slayadragon]

This brings up a question that's continued to interest me.

Dr. Judy told Erik Johnson (one of the cohort) that the reactivated EBV is associated with the lymphomas.

One in three of the original Incline Village cohort has developed lymphoma, he says.

Do we have a clear idea of how the various herpes family viruses tie into this, now that XMRV is hypothesized to be the cause of CFS?

Are they just considered opportunistic? Or are they contributing to the phenomenon in some deeper way?

There have been a scattering of people who report long-term full wellness (or close to full wellness) after a course of Valcyte, so it feels to me that it must be more than just downstream for at least a segment of people.

Whether those people who have gotten fully better had the ME/CFS of the Canadian criteria, I don't know. And I've not heard if they have XMRV.

To my understanding, those "recovereds" tended to have been sick for a lesser period of time. But that seems to me more related to the idea that they hadn't had the toxin/pathogen accumulations that patients who'd been sick longer did rather than to a different core causal mechanism for the disease.

I'm pretty sure Dr. Judy said in one interview that HHV6a and XMRV weren't directly related in their mechanisms. But that doesn't mean that they're not working together in some way to make people sick (e.g. with the EBV appearing necessary for the lymphomas).

Thoughts?

Thanks, Lisa

 

[jackie]

Gerwyn... Thanks for this! It HAS been on my mind (although I try not to get "fixated" on the possibilities, since I'm getting older and anything can happen!)...but, there are quite a few "cancers" in my family (BC, Lung, Stomach, Melanoma, and Head/Neck Cancers - in fact my Father DIED of Cancer of the Parotid Gland! (one of the not-so-common types)...in addition to Alzheimers.

I'm lucky that my docs (I.D. especially) do a CBC quite often (so wbc/rbc, liver enzymes, even cd4&cd8, etc.) are monitored. In fact, with my previous LOW cd4 count and then a surge (nearly 1500!)...I "secretly" suspect that IRIS may be taking place in those of us using high AV's! (my un-scientific theory). Then again - rising Tcell counts (if TOO high) are not a good sign either! And then there is C-reactive Protein (mine have been rising steadily, every 3-4 months for the past year and are now at over 7...from a start of 1.4) What does that say about what might be happening to "us"?

But how (in your opinion) is one to monitor THEMSELVES for the possible development of Lymphomas/Leukemia? We certainly can't rely on how we FEEL (if you are moderate to severe me/cfs)...and unless you rapidly begin to drop weight, for example...how do we stay on top of this and what can we watch for?

Soon after XMRV news broke, one of my docs said he had read about the higher incidence of Thyroid Cancers (in me/cfs)...so he ordered a thyroid ultrasound - which showed multiple hypo-echoic cysts/lesions! But because they are just under 1cm (the size needed to have a needle biopsy) no action was taken.

Now I'm developing large (some VERY large - the size of my fist!) what my docs refer to as "Lipomas" in several areas of my body...and yet, are they? They aren't normal - they shouldn't be there...but nobody wants to deal with them! (They say the only solution is to have them surgically excised...but there wouldn't be much of me LEFT! AND some are right along my spine...and they say excision could be risky.) I keep pointing the new ones out to my docs...and they keep burying their heads in their laptops!

Like everything else with managed health care, (contrary to what they advertise!)...the Ins. co's would prefer to "treat" you (while still fighting any treatment!)...AFTER you are dx'd with something...rather than focus on preventative care!imo

I can't imagine anyone taking my concerns of these real possibilites to heart...to be taken seriously with ANY worry or complaint is our continuing problem...sigh!) jackie:worried:

(saw Lisa's post...I have CHRONIC VZV and a new development of HSV1, chronic enteroviruses) AND CMV! and my doc called the other day and said if he tested my dna right now...he was sure he'd find VZV! so...yikes!

 

[ixchelkali]

I remember that it was the unusual number of mantle cell lymphomas that first attracted Dr Mikovits' attention. But other than that, I haven't heard of any evidence of hematopoietic problems associated with ME/CFS. With all the blood work done over the years, you'd think someone would have noticed odd blood cells if they were common. If XMRV is causing leukemia or lymphoma in ME/CFS patients, it must do it very slowly.

It seems to me that the retroviruses that are oncogenic each have their own cancer that they are likely to produce. At least some of them seem to be opportunistic, the result of other oncogenic virus infections taking hold because of the impaired immune system, like Kaposi's sarcoma in AIDS. So it might be that the mantle cell lymphomas only occur in XMRV infected people if they are also infected with another specific (but as yet unidentified) pathogen. That could explain why they were more common in the Incline Village cohort, if those people shared a common infection in addition to XMRV.

Of course, I don't know what I'm talking about, so all this is just supposing and conjecture.

 

[Robyn]

My brother died from leukemia years ago. I wonder if my family may all have the virus. My mother had a rarer form of breast cancer too. My father has parkinson's and my other brother came down with graves disease. Noone in my whole family history has any of these conditions.

 

[JT1024]

More from the website I linked to above.... I think Cort actually wrote this!

Dr. Mikovits brought more than connections - she also brought technology. The pathogen microarray she used comes straight from the National Cancer Institute. Its the most definitive pathogen microarray in the world. (Microarrays search for bits of RNA and DNA unique to a pathogen. If they find these unique sequences theyre confident that the actual pathogen is present.) This one looked for evidence of all known mammalian viruses.

When you see 8-10 cases of mantle cell lymphoma in Northern Nevada and California - thats a pathogen. So we said first off were going to do a viral microarray to look for it. That chip (viral microarray) holds multiple (aspects) of every known mammalian viruses. So theres not one (aspect) of of EBV were looking at theres 60 or 70 so you can look at multiple parts of the virus. Dr. Mikovits

What popped out in them? Our old favorite the herpes viruses. What popped out in the healthy controls? Their old favorite common cold viruses (rhinoviruses/adenoviruses). Which herpes viruses? HHV5, 7, cytomegalovirus, HHV-6. Cytomegalovirus was the most active virus found. Human endogenous retroviruses a subject of the Symposium on Viruses in CFS - were also found. So were enteroviruses. Dr. Mikovits said the levels of viral expression they found were incredible.

The average chronic fatigue syndrome patient on the day they were tested had between 30-50 viruses; the average control had 3 or 4 Dr. Daniel Peterson, 2008 Swedish Conference

Not only that but they found that these patients had a distinctive viral signature; in fact its distinctive enough that the WPI believes its a diagnostic for them i.e. its a biomarker for this group. Its essentially a series of tests that can (and is) being put on a chip that physicians can easily run to determine if the fatigued patient before them fits this profile. What is it identifying? Its identifying the viral subset in ME/CFS. If the WPI is successful at doing this theyll cut a significant group of patients free from the chronic fatigue syndrome label.

 

[Gerwyn]

More from the website I linked to above.... I think Cort actually wrote this!

Dr. Mikovits brought more than connections - she also brought technology. The pathogen microarray she used comes straight from the National Cancer Institute. It’s the most definitive pathogen microarray in the world. (Microarray’s search for bits of RNA and DNA unique to a pathogen. If they find these unique sequences they’re confident that the actual pathogen is present.) This one looked for evidence of all known mammalian viruses.

“When you see 8-10 cases of mantle cell lymphoma in Northern Nevada and California - that’s a pathogen. So we said first off we’re going to do a viral microarray to look for it. That chip (viral microarray) holds multiple (aspects) of every known mammalian viruses. So there’s not one (aspect) of of EBV we’re looking at there’s 60 or 70 – so you can look at multiple parts of the virus.” Dr. Mikovits

What popped out in them? Our old ‘favorite’ the herpes viruses. What popped out in the healthy controls? Their old favorite – common cold viruses (rhinoviruses/adenoviruses). Which herpes viruses? HHV5, 7, cytomegalovirus, HHV-6. Cytomegalovirus was the most active virus found. Human endogenous retroviruses – a subject of the Symposium on Viruses in CFS - were also found. So were enteroviruses. Dr. Mikovits said the levels of viral expression they found were ‘incredible’.

“The average chronic fatigue syndrome patient on the day they were tested had between 30-50 viruses; the average control had 3 or 4” Dr. Daniel Peterson, 2008 Swedish Conference

Not only that but they found that these patients had a distinctive viral signature; in fact it’s distinctive enough that the WPI believes it’s a diagnostic for them i.e. it’s a biomarker for this group. It’s essentially a series of tests that can (and is) being put on a chip that physicians can easily run to determine if the fatigued patient before them fits this profile. What is ‘it’ identifying? It’s identifying the viral subset in ME/CFS. If the WPI is successful at doing this they’ll cut a significant group of patients free from the chronic fatigue syndrome label.

This is VERY speculative but one of our elevated cytokines IL-6 over time can upregulate the production of acth in the anterior pituitary leading in turn to an overexpression of gluticosteroids.This can lead to a "cushings2 type syndrome making us ridiculously prone to opportunistic pathogens which can rage unchecked as in Cushing's syndrome

 

[jackie]

....some research (I'm SURE I read this SOMEWHERE!) has proposed that increased activity of Cytokines can contribute to SOME forms of Immune Reconstitution Inflammatory Syndrome. (I know - now I'm seeing IRIS everywhere!)

My horse (mare) had Cushing's Disease! (Hirsutism, chronic infections/absesses, muscle wasting, eventual blindness, etc....terrible disease, in animals AND humans!)....j

 

[jackie]

susan..is that the epo given during dialysis (for kidney failure/treatment of anemia?) im not familiar really (i will look up!) thanks, jackie

 

[Dr. Yes]

I remember that it was the unusual number of mantle cell lymphomas that first attracted Dr Mikovits' attention. But other than that, I haven't heard of any evidence of hematopoietic problems associated with ME/CFS. With all the blood work done over the years, you'd think someone would have noticed odd blood cells if they were common. If XMRV is causing leukemia or lymphoma in ME/CFS patients, it must do it very slowly.

Hematopoietic problems would include the inability to produce sufficient red blood cells, and subnormal circulating red blood cell (erythrocyte) volume has been a notable finding in some ME/CFS patients (one that still hasn't been appropriately followed up, by the way). I assume this is why EPO, which stimulates stem cells to produce more red blood cells, is prescribed by Dr. Peterson (see Lost's comment above).

'Odd' blood cells actually have been noticed in ME/CFS; one of the early findings by Peterson and Cheney in the Incline Village outbreak was the presence of atypical lymphocytes in patients' blood. Atypical lymphocytes can suggest, among other things, an infectious (usually viral) process or a malignancy, such as leukemia. It can take a well-trained eye looking at a blood smear slide to identify them, though.

I had atypical lymphocytes in my blood at the beginning of my illness and recurring off and on afterwards; they were unusual enough that a hematologist did a bone marrow biopsy (which he botched) and recommended that I have them checked out by a specialist in hairy cell leukemia at the Mayo Clinic (who said they were not HCL but rather were virocytes - cells with a unique morphology that show up in certain viral infections). The bone marrow biopsy did show evidence of a granuloma, which is basically a protective ball of immune cells that form to seal off a virus or other 'foreign' particle that is proving difficult to remove. In bone marrow, granulomas can be evidence of all kinds of things including malignancies and CMV or EBV infections - I've tested positive for both. (Unfortunately, I was too sick by that time to follow up on this finding, which would have required more biopsies..) :worried:

 

[jackie]

Well...add insult to injury Dr.Y...screwing up a bone marrow Biopsy!!??can't even imagine....(glad to see you posting a bit - please take it easy and go slow)

do you mean you were unable to follow up on the evidence of granulomas? at the state of health you're in...are any additional tests being run?

(my hematocrit is normal i believe), cmv HIGH, hhv6+, ebv, yes, plus all the Herpes, enteroviruses etc (i'm a mess)....i thought I'd had a lot of tests..but i guess i have a long way to go. I dont think i have "adenopathies" (i KNEW WHY a minute ago...but i've already forgotten my reasoning)

But i sure have what "they" are calling "Lipomas"...i doubt if they could be aspirated (and not one doc has taken more than a brief, cursory peek at them! (one doc accidently knocked against one of the worst ones during an exam...and as i levitated off the table...he said "my! that must hurt!" - i thought about biting him real hard...but his hand was too far away from my teeth, and the effort was too great.)

my days of parading around in that long, backless, sequined evening gown are definitely over! (im all lumps and bumps now!)

susan...(re: you're last sentence "there is something else going on")...my doc keeps repeating that to me! (i think he means it to be hopeful/helpful...but about what, i don't know. "sigh" is right!)

j (tired, have a new collection of the delightful shingles...my tummy! yay! if they didn't keep increasing all the time - i'd NAME them, as it's obvious they are here to stay!):Retro wink:

 

[lostinthedesert]

We sure are a motley crew and none in the best shape for invasive tests or surgeries. I had more to say but blanked. This thread does have me worried about potential problems with epo and xmrv. What the heck, if i do another round it will start more than a month from now so i have time to decide. S

 

[bluebonnet]

Hematopoietic stem cells and retroviral infection
Prabal Banerjee1,2, Lindsey Crawford1, Elizabeth Samuelson1, Gerold Feuer1,2*
Abstract
Retroviral induced malignancies serve as ideal models to help us better understand the molecular mechanisms
associated with the initiation and progression of leukemogenesis. Numerous retroviruses including AEV, FLV, MMuLV
and HTLV-1 have the ability to infect hematopoietic stem and progenitor cells, resulting in the deregulation
of normal hematopoiesis and the development of leukemia/lymphoma

XMRV IS A MuLV class virus .ALL other known Mulv class viruses induce malignancies

Gerwyn,
Sorry to be ignorant, but does this mean that if you have stem cell therapy using cord blood, you might later have an increased risk of developing leukemia/lymphoma?

 

[jackie]

susan...motley crew, indeed (that's just how i feel tonight!)

I know its difficult since you're using just your phone right now...so if you'd like any help "researching" or looking any data up (in preparation for further treatment)...just let me know (you'll have to tell me specifically what you want...but I'll try to find it for you...i'm hanging around in bed most of the time now...and have my trusty laptop..so say the word!)

j (i'm starting to blank out too!)

 

[girlinthesnow]

Jackie,

My little dog, a border terrier, died in September of Cushings disease and with an enormous tumour on her spleen. The very experienced vet and excellent vet practice had never seen this before. She was seven years old when she started to show symptoms, young for Cushings, which is pretty much unknown in borders who are robust and usually live to be quite old, 15 or so.

 

[jackie]

Girlinthesnow...So sorry for the loss of your little dog (and companion!) 7 is quite young (and what a terrible way to lose her!) I hope you'll be able to open your heart to another little "girl" in the future!

(BTW..I love border terriers! little dogs with huge hearts/personalities! after a lifetime of aussie's, when the last one died, we "switched" to Poms...and are now in love!)

Our mare (who was incredibly OLD (39!..a quarter horse/arab - good genes but high-strung at times!) developed many tumors (especially absesses in her feet)...eventually got an infected eye, didn't respond well to the triple antibiotics and ended up with a "blown eyeball" - horrific! simply couldn't adjust to the blindness (arab hyper-personality...couldn't stand the limiting/confinement of blindness)...and though we tried and tried to help her - eventually had to put her down (Some animals adapt to blindness - some never do). And this was attributed to the progression of Cushing's.

sorry about "off-topic"...but sometimes you have to talk about these things as they come up!

jackie

 

[JT1024]

QUOTE=bluebonnet;81307]Gerwyn,
Sorry to be ignorant, but does this mean that if you have stem cell therapy using cord blood, you might later have an increased risk of developing leukemia/lymphoma? [/QUOTE]

Bluebonnet, my short answer is no....... Gerwyn....feel free to correct!

XMRV infection is what increases the risk since it effects hematopoesis. Hematopoesis occurs in adults as well. Hematopoietic stem cells are present in all of us.

Adult stem cell info here: http://stemcells.nih.gov/info/basics/basics4.asp