HIV gives low CD4 count. XMRV gives low CD57 count? Possibly important for treatment

Impish. That's great news. Looking forward to hear what you can dig up.

Now that you said that, I did a quick pubmed search, and I found a couple of studies on this. Problems with CD57 was associted with CFS. Like I suspected.

www.ncbi.nlm.nih.gov/pubmed/1337560
" (...) the mean number of NK cells was lower (p < 0.005) in the patient group, when CD57 was used as the NK cell marker."
p < 0.005 means that it's pretty probalbe that it's so...

www.ncbi.nlm.nih.gov/pubmed/1849315
"Natural killer cells as defined by CD16, CD56 and CD57 antigens were significantly reduced in CFS."

I guess that CFS patients get treated [for XMRV], these CD57 levels will rise, just like CD4 levels do when an HIV infection is treated.

The Lyme Connection

This tie into Lyme concerns me. About 8 years ago somehow I came in contact with a nest of deer ticks. I woke up one morning and found little dots on my lower torso. I quickly realized those dots were deer ticks. Went to my local clinic and had 130 embedded deer ticks removed. Creepy. But for the next 2 years I remained asymptomatic. Suddenly I developed a bulls eye, but nothing else, and when the bullseye disappeared, I did not deem it necessary to pay the doctor a visit. Six months later, symptoms would manifest: peripheral neuropathey, some dizziness. Then suddenly a huge bullseye. I got very sick. I was diagnosed with Lyme, treated for 30 days, and I got better. But that was the beginning. As each month passed, then each year, my symptoms mulitiplied and worsened. I assumed chronic Lyme, but was told no. Finally I was diagnosed with CFS in 2005.

Sorry, diagnosed in 2008.

Gregory,

I became ill 5 1/2 years ago and was diagnosed with CFS. I was just diagnosed with Lyme. I am aware of many people with CFS diagnoses who were later diagnosed with Lyme and got better.

There are doctors who don't believe in chronic Lyme. I think you should see someone who does asap! This website is a good starting point: http://www.ilads.org/

Best of luck,

Lesley

Lesley, thank you for the advice, and for the link as well. If I read you correctly, the difference between we two is that you were not treated for Lyme until just recently. I was fed antibiotics specific to Lyme back in 2005. In 2008 as I declined, I went to my GP and said this Lyme crap has to stop; what could he do for me. He said, and I paraphrase, "You don't have Lyme. I've checked and your levels are now normal." Then he referred me to a Rheumatologist who subsequently made the CFS call in 2008. I don't know. Maybe it's a case of some people like the NY Giants, some the NO Saints, but regardless, it's all about football.

Wow, if I had 130 deer ticks pulled off of me I would see a LLMD and be tested for lyme and all co-infections as soon as possible!!

Greggory, your story of being treated for a month with antibiotics for Lyme and when you continued to have symptoms being told that it's not due to Lyme is unfortunately *extremely* common. You most likely have chronic Lyme and you need to see a Lyme literate MD to get a proper diagnosis and treatment.

Unfortunately it is very common for Lyme NOT to be treated with 2-4 weeks of antibiotics (some docs only treat with 2 weeks of Doxycycline). Basically, the reason behind this improper treatment of Lyme is all due to politics and insurance companies not wanting to pay for full Lyme treatment (which given that it truly is an epidemic with thousands and thousands of people not correctly diagnosed, it would be very expensive for them). Nearly all doctors follow the guidelines they are given which currently deny that chronic Lyme exists, even if they do believe chronic Lyme exists. They are worried about being brought in front of a medical board if they don't follow the guidelines. Some doctors who treat patients for Lyme have lost their licenses even though they have not only not hurt a single patient but have helped thousands of patients recover their health. The Connecticut Attorney General is in the process of getting the organization that writes these guidelines to correct them, but that will likely take many years (as I said, it's all very political).

I would highly recommend you look at that ilads link you were given and find a Lyme literate doctor to help you. You are right, it's all an illness whether it's Lyme and/or CFS, but a Lyme literate doctor will be able to get you well a *whole* lot better than most any other doctors.

About those 130 embedded deer ticks you had... CREEPY indeed!!! Makes my skin crawl to even think about it!!!

Best wishes to you, Sunny

Thank you aiden and sunny. Sunny, your insights are very appreciated. As for the ticks, yeah, kinda unnerving. I was going to contact Guiness but my wife reminded me there is a fine line between fame and infamy.

Interesting

So after a quick meta-analysis of the literature, it is widely known that the ratio of CD4 / CD8 cells in CFS patients is off. Interestingly this mis-balance in immune response directly would explain most of the CFS symptoms.

Also I found this, which was just published...


Mikal J. Pittet, Daniel E. Speiser, Danila Valmori,


CD56 Surface Expression
T Cells Closely Correlates with
+
Function in Human Circulating CD8
Cutting Edge: Cytolytic Effector

Which seems to suggest not having CD56 phenotype CD8+ T cells is especially bad...

If you look at everything from a meta standpoint over the last 20 years it really starts to fall into place. Studies that found treatments that actually worked such as messing with the Th1 Th2 balance (Klimas), Immunoglobulin Therapy (various) would have been in effect attacking XMRV. Again, Apligen (poor spelling) was known to work before XMRV was found and it kicks up NK cell function.

If you assume that XMRV is messing with the immune function all of the various other possible causes that were found with CFS start to make sense. The various other viruses that were throught to be potential causes of CFS were found because XMRV was destroying the hosts immune system and letting them show up. It is not unlike HIV in that all of the diseases that killed people who found it were found first. I wonder if Epstein Barr, etc. are going to be like that.

The human brain has a tendancy to see patterns where there isn't anything but this is starting to make sense. I would feel more comfortible if we had a real replication study that found it...

thus far no one has tried to do a replication study.XMRV is a gammaretrovirus not a lentivirus their effects on the immune system are completely differentThat "misbalance"(the CD4/CD8 ratio abnormalities in early aids infection would not even come close to explaining the symptoms in ME,cfs. or have anything to do with a th1 to a th2 shift.It is a measure of T cell death .A gammaretrovirus does not induce cellular death. Sometimes it is better to look at things from a scientific standpoint.

In ME the cause is the overall reduction of NK cells.That happens as a result of a THI to a TH2 shift.That is a clinical featute of a gamma retrovirus infection. i understand that as a layman these mistakes are easy to make but I,m sure that you wouldn,t want to produce the bad science propagated by members of the BS forum.I,m confident that your standards are much higher than that otherwise you would not be on this forum in the first place

130. Wow. I can't recall a bit, ever. And I have lyme, and have improved much with lyme treatment.

This is the norm. The Borrelia goes into cysts. Here's a pic:



When they do this the go into what we could call a hibernation. They turn their metabolism down to practically zero, and you wont notice that they are there. But the big problem with these cysts are that they are so much hard to treat - compared to the normal spiral form.

I am sorry, but this is probably what I described in a earlier post, by almost all docs; early lyme is treated exactly the same as late lyme. If it's years since the infection, then you have late lyme. And it's not easy to get rid of it.

It would take a miracle to get a chronic lyme dx if you go to a random doctor. And it would take another miracle to get a treatment which also targets to cyst form of the Borrelia.

The standard tests aren't validated for late lyme, so it's no surprise that people often test negative, or are told that they have signs of a "old infection" (which is now gone), despite that it's very much alive and causing havoc.

I'd really like to see how all of these would respond to treatment; CD16, CD56 and CD57.
If they are abnormally low in people who are ill with CFS, and rise when they are given antiretroviral treatment, then I guess we'd be on to something.

Interesting discussion, everyone. Greggory, Lesley, all...It's likely that there will be considerable overlap between chronic Lyme and XAND.

These quotes are from Dr. Mikovits' April Q & A in the IACFSME newsletter:

I believe Dr. Mikovits said in her January ProHealth talk that people infected with both XMRV and Bb will probably have to be treated for both.

Of course, Lyme on its own can cause terrible problems!

Ummm.... I am not sure what you are saying makes any sense at all? You seem to be correcting something I didn't say? I didn't say anything about cell death! You are right no one has published the results from a replications study yet. Hopefully that will happen soon.

In regards to the proposal that XMRV has some sort of affect on the immune system you say that gammaretrovirus's don't affect the immune system? Isn't, FeLV a gammaretrovirus and it causes immunosuppression? In fact in cats FeLV specifically represses C57 expressing immune cells which is what is being observed in CFS. (Here is the article is you wish to look at things from a scientific perspective "Retrovirus-mediated immunosuppression. I. FeLV-UV and specific FeLV proteins alter T lymphocyte behavior by inducing hyporesponsiveness to lymphokines") I may be mistaken but do you know what you are talking about because what you are saying seems entirely wrong?

Also the idea that the mis-balance in the th1/th2 ratio is causing many of the symptoms isn't mine. It is from the literature (Klimas, etc.). Here is a snip from Dr. Cheney.

"Researchers have demonstrated that most CFIDS patients end up stuck in Th2 mode. This has several consequences. When the Th2 system activates, it blocks the Th1 system. This suppresses the Th1 weapons, particularly NK function. Accordingly, there is also an increase in the Th2 weapons - the white cells and antibodies. Most notable is increased antibody production. Dr. Cheney said that if you measure antibodies to anything a CFIDS patient has ever been exposed to, they will very likely be elevated. (At this point he drew small arrows beside the "weapons": They pointed down on the left side to indicated suppression / lower levels; and they pointed up on the right side to indicate activation / higher levels.)"

Also I wasn't comparing how HIV attacks the immune system to how XMRV may or may not surpress the immune system. I was comparing how the progression in how the diseases were discovered. With HIV people were found to be all of a sudden dying of relatively rare diseases. The reason that they got these was that their immune systems had been trashed by HIV. If XMRV is the root cause of the Th1/Th2 misbalance it is surpressing the immune systems of people with CFS in such a way that Epstein Barr and the various other viruses can get etablished easier. This means the way the disease (CFS) and its possible root cause (XMRV) were discovered is similar to HIV. People first noticed that CFS suffers had high viral loads of things like Epstein Barr. After many many years of wasting time with thinking that the passenger viruses were actually the cause they perhaps have now found the true root cause which is a retro virus causing immune system disfunction. Is that more clear for you Gerwyn?

Great find Rebecca.

Lyme causes terrible symptoms, and are one of the very few illnesses which gives such a broad spectrum of symptoms. Besides Lyme, I know only of syndromes (meaning MS, FMS, CFS) which can cause both joint paint and visions problems, temperature dysregulation and memory problems, muscle pain and massive fatigue etc.

So when they test this group of CFS patients (of which 95% was positive for XMRV by serology) they find that a huge part of them test positive for lyme.

And, when we know that the sensitivity of lyme tests are really bad, but they still get 30-40% positive, that says something about how many which may be infected. It hasn't been much research done on possible ways the Borrelia bacteria can be transmitted. I bet that tick bites isn't the only way.

It would be really interesting to see how it would go when they look at it from the opposite angle (as she suggested in the question that they are doing right now):
How many of the chronic lyme patients test positive for XMRV...
I hope, and think, that the number of positives would be equally high as with the syndromes.

The XMRV virus could be the missing link in the lyme treatment: With treatment now, people get better, but a total recovery is rare, and relapses are common.
XMRV infection could also be some of the reason why the antibody tests for lyme so often fail (if the virus disrupts the immune system, it's harder to produce antibodies, and therefore they don't test positive when it's gone chronic)...

A small excerpt of the symptoms which can come from lyme are on page 9 and 10 here.

Good point, redo. I hope it'll be the missing link for many of us! :Retro smile:

Hi Redo,

it would be interesting to know how the immune system of a CFS patient evolves, i.e., if there's also a similar pattern to see as with HIV. Therefore, you have to know when you got infected, and measure your immune panel from that moment onwards.

I have some figures, because I know when I got infected, but it would be interesting to compare them with others too. I strongly believe a similar pattern is to see with CFS. You can differentiate 3 phases, I think:

1) acute infection
2) recovering of the immune system
3) chronic phase, immune system collapsing due to the damage caused in phase 1 and 2

Take care,
OS.

Hi all, for what it is worth, my CD57 tested at 9 (60-360)...

Can anyone beat me? ;-)

Regards,
Sergio

Sergio, that's low. Have you also got tested for CD56?
Or the NK cell function test Dr. Peterson recommends?
It's written a little about it in The thread called "antiretroviral trial".