has anyone heard of this? My BIL is now convinced that my DH has Lyme and not Alz and says he has the bloodwork to prove it. Wants him to start on a very agressive course of antibiotic treatment to combat the little boogers that he says his bloodwork shows. He's in a clinical trial for Bap right now and may be asked to drop out in order to do this. Has anyone else heard of this connection or done any research?
This is a pretty big decision I'm being asked to make and I'm already completely overwhelmed with all the other decisions I have to make now for our family and our business. I just want to crawl under the covers with this new potential development.....but on the other hand, what if this is something real?
There has been some discussion about Lyme Disease on these boards. Emily and Stuntgirl mentioned it toward the bottom of this thread - http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=291
Brookhvn1--What is this bloodwork? Has it been verified by an infectious disease specialist? I second Weejun's question. Bloodwork which DEFINITIVELY identifies Lyme disease is rare, but if this is the case, it needs to be considered. My BIL is also always looking for alternative answers, and (prior to getting our AD Dx,) had my husband on: testosterone, heavy metal testing, acupuncture, and has also been "sure" it's caused by toxic mold. (lots of this poking/prodding occurred when Jeff spent several weeks with him a few years ago.)
My husband Jeff did undergo treatment for potential Lyme, prior to being sent to a new neurologist who dx'd AD. 3 months of antibiotics made no difference, and this essentially ruled it out.
Lately, because Lyme is the BIL's new angle, I've done a little research to reassure him that we've already barked up that tree. My current understanding is that, for one thing, the pattern of dysfunction visible on PET and SPECT scans are not the same for Lyme and AD, usually. If your husband is in a clinical trial (as mine is) it seems likely that they've screened him rather carefully, because when you're testing on AD patients you need to make sure you're subjects do, in fact, have AD. Talking to the clinical trial person before you to anything else would be one important step.
I spoke with the clinical nurse on the study and she's not thrilled with agressive antibiotics but says I should send in the blood test results for them to look and decide whether they'll allow him to do it and remain in the trial. So I'm working on that and the Lyme DR. wants to see his pet scan report from 2007. So while everyone is shuffling papers around I have to try not to get all nuts about this.
This is an interesting topic. I was convenienced several years back that DH had Lyme. He had a tick in his neck about 10 years ago about the time all of this started happening. two different doctors ran the blood work and it came back negative. Although I have no evidence, I feel that there diffently could be a connection. Please keep us all posted.
As a couple of the others have said, how would your BIL have blood work proving this if you don't.
Gosh I hope not. I had a terrible case of Lyme this past summer, wound up hospitalized for 4 days and on IV antibiotic for 2 weeks after that. I was also suffering from Babiosis (also tick borne) I had never heard of anyone mentioning any connection, but I do know people who had latent lyme (non symptomatic) for years and have now been dxd with heart disease brought on by Lyme. It's a horrible disease.
Right. But to elaborate on what I was saying, the pattern of brain dysfunction as measured by PET/SPECT type things, tends to be a diffuse spread, as opposed to the specific areas which early AD targets.
Emily-thanks for mentioning that. I did speak to our Neurologist yesterday (who we both love) and she said that once this new internist sees the PET report that might be a game changer. I don't know if that makes me happy or not. A large part of me, too, wants it to be Lyme and completely reversible but I don't think so. I faxed the PET rpt to this "lyme literate" dr. this AM and we'll see if he responds.
I asked at my support group last night and none of the 20 spouse/family members had heard of it, nor did the Profs from the ALZ assoc. There was one family there who's mom had a clearly defined case of ALZ and was in treatment when she then came down with Lyme (after several negative tests). They treated the lyme and she was one of the lucky ones who responded right away but she still has ALZ.
I have no quarrel with the idea that he could have a case of lyme, although he never showed any symptoms at all. But to think all of his symptoms/cognitive deficits are due to Lyme, I think, is a bit of a stretch.
None of his family, so far, can come up with one person for me to talk to that has presented like my DH, been treated for Lyme and has gotten better. But I'll continue to keep an open mind and keep asking the questions. I'll bring as much information back as I can.