Just spoke with my ND this a.m. Of course the Wester Blot for Lyme came back negative, but it did show Epstein-Barr virus. Which she said, "just means that I do have a virus and my immune system is low".
Again, feel like this phrasing is dismissive, but admittedly I'm a little sensitive right now. Calling Dr. C today, but any thoughts would be appreciated.
Posted by Dekrator48 (Member # 18239) on :
Was your WB from Igenex?
Do you have your individual band results?
Posted by tiredmama (Member # 27504) on :
No, it was through Quest. I don't have the papers yet, just spoke with the drs. office over the phone. Thinking I'll at least order the Igenex labs and go from there. Just scared it's more serious, like lymph node cancer or some crazy s***!
Wondering if anyone cares enough to do the tests they need to do to find out what the hell is wrong with me! So far, I've been holding my ND and MD's hand to figure this out. Sorry, pretty ****ed off at the moment!
Posted by Lymetoo (Member # 743) on :
That's why we all need a Lyme specialist. No other doctors "get it."
Did ANY bands show up positive?
LYME IS SERIOUS! Don't worry about other stuff until you are evaluated by an LLMD and get that test from Igenex.
Posted by kimmie (Member # 25547) on :
Quest is the worst lab for WB testing. the results are not read by a person, but rather a machine from what I am told. Igenex is the best.
Posted by sixgoofykids (Member # 11141) on :
You need to get a copy of the test because you need to know which bands were positive. His interpretation is that it is negative, but he may be requiring FIVE bands to be IgG positive, yet that narrow interpretation is only required by the CDC for TRACKING purposes, not DIAGNOSTIC purposes, which even the CDC says!
Plus, Quest is not the best lab.
Posted by tiredmama (Member # 27504) on :
Thanks,all. Made the appt. with Dr. C. Can't get me in until November, but they assured me I'd be put on the waiting list. I begged and pleaded and expressed the severity of my symptoms (which I'm sure EVERYONE feels the same way), but hopefully I could get bumped up in case of a cancellation.
Have appt. with ND on Friday and I'll be able to get a copy of the test. I have no idea what it showed at this point.
And so starts another journey, though this time I'm more armed and prepared with information...thanks to ALL OF YOU!!!Will keep you posted.
Posted by timaca (Member # 6911) on :
You could have a chronic viral infection with EBV (and other viruses). So, do some reading.
Best, Timaca
Posted by Marrit (Member # 25454) on :
I think you sound like a classic case of Chronic Immune Dysfunction Syndrome (CFIDS or CFS) or Myalgic Encephalomyelitis (ME) as it's known in Europe. It's almost impossible to tell the difference between CFIDS and chronic Lyme as they share so many of the same features. However, post-exercise crash is most severe in CFIDS. In fact, if your symptoms are exacerbated by exercise -- any exercise -- you are probably dealing with CFIDS. High EBV titers are the usual finding with CFIDS. High HHV-6 and CMV and others are also.
Antibiotics might help a little if you have an underlying bacterial infection; however, anti-virals are what help people with CFIDS.
Heard of XMRV? That's the latest virus implicated in CFIDS. There's a lot of info online. Here's one link I found today:
I believe we all have several viral and bacterial infections plus unknown pathogens.....? I was first diagnosed with chronic fatigue then MS. Finally, a doctor ran a lyme test and I was positive...wound up have a number of infections both viral and bacteria and I even a bout with worms. God knows what any of us is dealing with ???? The XMRV is just another viral infection ...I was even tested for HIV and AIDS....so who knows anything? Dutch
Posted by Lymetoo (Member # 743) on :
Marrit..post-exercise crash happens with Lyme patients too.
What is the treatment for CFS these days? Any cures coming along.. or just treating the symptoms?
Posted by lymednva (Member # 9098) on :
I agree with Tutu here! I have had a lot of post exertional malaise, both when my dx was CFS and after it was Lyme.
Posted by Lymetoo (Member # 743) on :
And how are you doing now that you are receiving treatment, Lymednva? Getting well? Posted by Marrit (Member # 25454) on :
Lymetoo, go to the link above. There is a number at the bottom of the announcement 1-866-373-4990 and enter pass code 5711. You will hear a recording of a telebriefing from the NIH, delivered this afternoon with reporters' questions.
XMRV is only one of many murine-leukemia-related viruses they have discovered. There is a lot of variation, but they are all in the same family. This is the reason for the discrepancy of the tests, where some labs couldn't find XMRV.
XMRV lives only in human cells (xenotropic), but the other MLV's can live in both mouse and human cells (polytropic).
Anti-retrovirals are already being discussed, but it's going to take awhile for them to sort this all out. First they have to get a diagnostic test because the tests they're using now are for research only, time-consuming and expensive and difficult. Then they have to make the connection between CFIDS and the MLV's. Then, finally, do studies to see if the virus responds to the anti-retrovirals.
One reporter asked if finding many variations (they mutate within a person) of the MLV adds more weight to it causing a single disease (such as CFIDS), and I believe Dr Lo's answer was "Yes."
Posted by tiredmama (Member # 27504) on :
So, Dutchie...do you find that Lyme treatments have helped (or have you started them)? And am I right in thinking that it's just a "rest and get over it" with the virals?!? That's so hopeless.
While I think it's likely I have CFS (VERY FATIGUED!!) and positive on the EBV...what then? Treat the lyme (if that's the case) and wait it out on the other? The severity of this comes and goes..Does CFS? Also, any treatments for EBV I don't know about? God know no medical professional would inform me if there were!
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