I was keeping this a secret until I had more information.... but I did post a little about
this on another LD site a day or two ago.
When my husband went to a fraternity reunion at Vanderbilt a few months ago, he ran into an old friend who is now a doctor. He owns Dialysis centers and Hospitals (big $$$). He doesn't see patients, but does a lot of research and can make referrals to the "best" doctors in the world, etc. Anyway, he requested all of my records... I spent an entire day gleaning all my paperwork down to a stack of 123 pages. My husband put everything on a disc and sent it to him. I emailed "my story" along with a few links (like to Under Our Skin, AG Blumenthals investigation, the IDSA response, etc.) I have updated him twice, once when I was receiving 10 weeks of IV Rocephin and just yesterday with an update of my current oral abx's and other prescriptions - and a link to a pretty technical medial study on Lyme disease - that I just got from another site.
Anyway, he emails my husband with a response indicating that my case is "elusive" and seems to fit the definition of Chonic Fatigue Syndrome more than Lyme disease. I immediately told my husband that I disagree.... but in fairness, I researched "CFS" a little bit.. Lyme does share a lot of the same symptoms of CFS... but I didn't have all of the CFS symptoms and I have almost EVERY LD symptom, plus I have an Igenex LD test that is CDC positive. And, the sites I visited about CFS even said you had to rule out other infections INCLUDING Lyme disease!
So, my husband emails him back and says something like "I really appreciate you looking into this.... I really respect your work.... but, what about my wife's LD positive Igenex test? Lyme disease is the only thing she has ever tested positive for." (I have other tests where I am EIA positive but WB negative, EIA positive and IGM positive, but IGG negative, and then the Igenex test which was CDC positive, I have since tested IGM positive on a few more tests - so I don't really call the Igenex test my ONLY positive test).
The drs' reply "
It’s hard to say why the single result was positive. It’s certainly possible that it was a spurious result. As I said, the diagnosis has been elusive.
."...... and now I'm like What the F%&K ???.
So now, this dr. is going to send my records to some other dr. in Europe for review. My husband told me to just "let it go" and see what the other dr. has to say. I guess I'm going to let him send my records along. I mean he is doing us a favor by looking into this.... but jeeze, it feels like I'm back at square one - educating the doctor about LD so that they don't slap the wrong label on me - haha.
I'll let you all know if anything comes of all this.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing. Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w
"How much more can I take?", song - http://www.youtube.com/watch?v=5gHiR1xeOSs
Post Edited (JELAINEP) : 12/3/2008 8:17:29 AM (GMT-7)