Hi everyone. I asked my doctor if she could do some more exploratory tests on my immune system, as I have very classic M.E./CFIDS and know that the immune dysfunction part of it is hindering my ability to get well and tolerate treatments for the Lyme disease.
She ultimately agreed, and now I'm having tests done on things like my Natural Killer Cells and CD4/CD8 ratios, which are supposed to be the most frequently reported abnormalities with M.E./CFIDS.
I was also reading in the Burrascano guidelines that Lyme can cause similar abnormalities with NKC, within the CD-57 category? Has anyone here had that test, and did it come back abnormal?
She is also doing things like a lymphocyte mitigen screen, and some other tests I know little about.
I'm not having a good night and don't really know what I'm asking... But I read in the B. guidelines as well that Lyme can affect the T and B cells somehow, too... I'm just hoping to find some answers and "proof" so more doctors will listen to me.
With both M.E. and Lyme being systemic, infection-based diseases, I would expect some similarities between the abnormalities that commonly show up. If anyone has any input on these similarties and differences, I'd like to hear them, especially if they relate to what I could expect to see on my lab results...or of course, if you've have these tests yourself.
Sorry if this was a bit of a ramble
little olive
[ 09-11-2010, 03:41 PM: Message edited by: little_olive ]
Posted by lou (Member # 81) on :
It will be interesting to see your results. Please post them.
Another possibility is that you have that new virus. Apparently some lyme patients are testing positive for it too. I am wondering if these are the ones with severe fatigue, since not all of us have that.
Posted by little_olive (Member # 28063) on :
Bump...
lou: I would be happy to share my results, especially if it can help anyone else with their journey.
If XMRV/HGRV ends up being the cause of M.E., and I have the most classic presentation of M.E. I think you can get, then there's an extremely high chance of me having that retrovirus. Therefore I'm glad to be getting my CD4/CD8 counts looked at, if it can possibly be a hint to things as it is with HIV. I will be having the XMRV/HGRV test as soon as it becomes covered by insurance.
Personally I think severe fatigue is more or less a co-infection problem than a Lyme disease problem; even having M.E./CFIDS fatigue is not a prominent symptom as much as muscle weakness.
Posted by m0joey (Member # 13494) on :
The NK cells will probably be way more telling than the CD4/CD8 ratios. This is a completely different type of retrovirus than HIV, so you're not looking for HIV patterns. Low NK cell count and cytotoxicity is classic ME/CFS though.
Posted by R62 (Member # 18531) on :
what lab are you using for nk cells?
thanks..
Posted by seibertneurolyme (Member # 6416) on :
The problem is even if you have abnormal tests what will the doc do with that information? Will it change your treatment plan in any way?
Some of these tests can cost hundreds or even thousands of dollars. Hubby had some of this testing done when he was undiagnosed back in 2001 - 2003. CD4/CD8 ratio was off -- but at that time he didn't have any positive tests even for common viruses and his WBC was normal so even the alternative medicine docs didn't know what to do.
We didn't get any useful info from the tests -- sure wish I had some of that money back now to pay for IV antibiotics.
Bea Seibert
Posted by kday (Member # 22234) on :
quote:Originally posted by seibertneurolyme: The problem is even if you have abnormal tests what will the doc do with that information? Will it change your treatment plan in any way?
Some of these tests can cost hundreds or even thousands of dollars. Hubby had some of this testing done when he was undiagnosed back in 2001 - 2003. CD4/CD8 ratio was off -- but at that time he didn't have any positive tests even for common viruses and his WBC was normal so even the alternative medicine docs didn't know what to do.
We didn't get any useful info from the tests -- sure wish I had some of that money back now to pay for IV antibiotics.
Bea Seibert
Well, I am having CFIDS/ME testing done with 100% coverage on ALL tests and labs with a doctor with 25 years of experience with the disease. Yes, that's basically when CFIDS/ME started.
I think the doctor has been using a Chinese anti-malarial called Artesunate (a semi-synthetic derivative of artemisinin) for inhibiting the retrovirus (even before XMRV was discovered). It's about 4x more powerful than artemisinins I believe.
I'm not sure if he is using Artesunate, but that's what Cheney is using (at least until clinical trials complete). He seems to follow a lot of what Cheney does. Though I have heard negative things about Artesunate and long term use.
I'm also getting useful tests back that are nearly incontrovertible evidence of disability.
I want to be better, but it would be nice to have some of my own money until I am able to work.
So am I wasting money? No. I am getting a useful evaluation 100% covered. In fact, this may help me financially. And yes, it seems like it very well may change my treatment plan.
What do you think makes Epstein-Barr virus go chronic?
What do you think makes Lyme and co go chronic? Why is it so hard to get rid of in some people?
I don't know the answers to those questions, but I think it chronic Lyme could be tied to a retrovirus. Perhaps that's part of the reason chronic Lyme is controversial. Because it's only a "small" subset of patients with complaints of chronic illness.
Posted by little_olive (Member # 28063) on :
Hi m0joey, actually I wasn't particularly searching for HIV patterns, but wanted those tests based on that they already frequently show abnormalities with M.E. I'm not sure why that is, but if they're both retroviruses (possibly, that is), that could explain why they happen to be similar. I'm curious as to what will come up, regardless. How does cytotoxicity show up in a test?
R62: The bloodwork is being sent via Quest, off to California (or at least that's what the lab tech told me). I know I had to specifically go to a lab that dealt with Quest.
Bea: I'm sorry your labwork didn't prove useful. I'm more or less hoping this will prove to the doctors that I am not as "normal" as they think; whenever they ask me what type of immune dysfunction I have, I do not have anything on paper to show them! Then they don't believe me, and don't take me seriously. If something significant shows up in my results, maybe the next time I end up in the ER due to infection, they will understand why seemingly minor pathogens have such terrible consequences for me. Since getting Lyme and everything else, it's only gotten worse. I've been disabled for a very long time, and with that, at least I do have coverage for these tests, as long as they're warranted. And for me, they are.
kday: You know, someone just posted here on one of these posts about how it's actually the WEAKER strains of Lyme that end up causing problems because they don't invoke a strong enough immune response and thus aren't effectively killed off at the onset. That lets them wiggle around to the organs without even being detected, and "set up camp." I thought it made a lot of sense, and could be a major reason why some cannot get rid of it. It's long since been known that different strains of Lyme cause different types of disease, but that was a really good explanation of WHY. I doubt it's all tied to retroviruses.
Posted by R62 (Member # 18531) on :
thanks, little olive.. interesting about the weaker strains of lyme.
Posted by little_olive (Member # 28063) on :
Of course, R62.
Hi again everyone, I just got ahold of the complete list of tests she ordered for me so I thought I would share:
Immunoglobulins (E, A, M, G) Immunoglobun G Subclass Panel CBC & CMP Sed Rate Steptococcus Pneumonia IGG antibody Diptheria Antitoxoid Antibody Tetanus Antitoxoid Antibody Haemophilus Influenza Type B Antibody C4C Lymphocyte Mitigen Screen Lymphocyte Subset Panel
I barely know what most of these even ARE! Posted by jwall (Member # 22999) on :
Did you get results little_olive? I was just reading this post as I was searching for more info. on CFIDS/ME.
Anyhow, I saw your initial question about the CD-57 test and yes, mine came back abnormal. My result was 24 - very low. This was a piece of the puzzle when putting together my lyme diagnosis. I also tested IGM positive. I believe you want this test done through labcorp though, not Quest.
Posted by little_olive (Member # 28063) on :
Oh my, I'm sorry.
Yes, my IgG subclasses 2, 3, and 4 are deficient; my Complement C4 is borderline (low), my CD4 count is elevated, and my sed rate is.. 5?
I did not have the CD57 test, not knowing if it truly had relevance.
My lymphocytes were actually very activated, suggesting fighting something? I tend to think of viruses but I know lymphocytes/natural killer cells protect against other types of intruders as well. I'm not sure if their function was measured, but I do know that I have a relatively increased number of them,
I was rather relieved to see that, I just hope it means my body is trying, especially in comparison to two years ago when it was just sitting there, being attacked and not responding at all (I also wonder if this attack-mode has anything to do with my new herbs? Because they do help me a great deal.)
Unfortunately, even if it's useful for me, these things are minor to most physicians (not abnormal enough to warrant their attention) so I doubt I've completed my task of getting something significant that others can understand... sigghhh!
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I'm not sure why that is, but if they're both retroviruses (possibly, that is), that could explain why they happen to be similar. I'm curious as to what will come up, regardless. How does cytotoxicity show up in a test?![[shake]](graemlins/shake.gif)
If something significant shows up in my results, maybe the next time I end up in the ER due to infection, they will understand why seemingly minor pathogens have such terrible consequences for me. Since getting Lyme and everything else, it's only gotten worse. I've been disabled for a very long time, and with that, at least I do have coverage for these tests, as long as they're warranted. And for me, they are.![[Smile]](smile.gif)
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(I also wonder if this attack-mode has anything to do with my new herbs? Because they do help me a great deal.)