Hi Rosemary et. al.,
Rosemary, you and Tincup constantly impress me with your wealth of knowledge. Facts are extremely important when trying to figure out how to go about treating an illness and you two consistently dole out the facts.
I had an EM rash back in the middle to late Summer of 1990. At that time, I did the 10 days of abx. to "cure" the lyme and never thought any more of it. About 8 months later, I became very ill with fatigue, muscle pain, sore joints, bleeding gums, etc. The Dr. put me on abx again as precaution, but I continued to stay ill. After a couple of months of being ill, he finally did an EB titre which came back extremely high. According to the Duck, it was "off the charts". His response was to send me to a CFS specialist.
So, I started Tx with the specialist and he ran EB titres regularly. All of them came back high, but would go "out of range" on the high end when I was really ill. Eventually he also ran titres for several virii, including herpes and a couple of others. Now, the thing to remember about titres is that they only measure the immune response to these particular virii and are usually a pretty good indicator of recent exposure or infection if the titres are high. But...here's the catch...they don't show for sure that you've got the virri in your system. The only way to be positive that an organism exists is to actually find it inside you.
Since this guy was doing research in CFS, and wanted to be sure, his research group paid for the tests to try and locate any of those virii...the EB or Herpes...in my system. Funny thing is, they couldn't be found. The conclusion was that something else had triggered my immune system to respond this way. And, oh yeah, I also started testing positive for the Hashimoto's antibodies at this same time.
Now, when I look back on it and cosider all of the research I've read in the past couple of weeks, I'm convinced that I had this immune reaction as a result of the borrelia infection.
BTW, my titres for Herpes I & II, EBV, & Hashimoto's all kept coming back positive for seven years. Following that, they were negative again...until recently. My current PCP ran an EBV titre two weeks ago, when I presented him with my questions about it possibly being Lyme (He ran quite a few tests actually) and the EBV titre came back positive again, as did the Hashimoto's. He didn't test for Herpes.
I also talked to him about doing blood work to test for Lyme and he said it was pointless. He knew of the high failure rate, and considered it a given that I have Lyme just based on the past history of the EM rash. Smart fella' there, but he's still unwilling to try and treat it as he doesn't feel qualified. Thank God he doesn't think he's a god.
Anyway Rosemary, I just wanted to share with you my experience and say thanks for being so accurate with your info. about the EBV titre. I haven't spoken to a Dr. about CFS in quite some time, but you're right, my CFS Dr. concluded it to be useless in diagnosing CFS before I quit seeing him. Too bad he wasn't very aware of Lyme. Also, I have seen quite a few people remark that EBV is something other than the virus that causes mono. Again, thanks for pointing out that it is.
Paul