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Lyme Disease Message Board


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Re: Als and lyme
Oct 2, 2005
Hi ticker--

Thanks for your kind words. The past few months have been a real nightmare for Dad and our family. Here's the long version:

Dad started to exhibit symptoms in November 2004. Before that, he had fallen in 2003 and broken his neck, fracturing C-1 and rupturing several others. He had a laminectomy in November 2003 to ream out the spinal column due to stenosis of the spine, and to prevent further injury. He was an extremely active 73-year old at the time--skiing, swimming, long-distance biking, ballroom dancing--a real powerhouse!

Dad has not been on antibiotics continuously. The first doc was a rather controversial character in Pennsylvania about whom much has been written on this board! This doc did test for co-infections in February and he did come back with babesia, but was never tested for them again. However, this first doc refused to treat him after the first visit!

The second doc (a supposedly Lyme-literate doc who gave a presentation at the recent Lyme conference here in Virginia) prescribed IV Rocephin, but would only let him do 6 weeks. The doc was afraid he would be doing more harm than good by continuing the IV antibiotics.

About two months later, Dad went down to the famous clinic in NC and was put on the minocycline/flagyl. In between these two rounds of antibiotics, he did the cholestyramine treatment and rid his house of black mold (which was a real problem apparently). He got so horribly constipated and it was made worse by his weakening his lower abdominal and diaphragm muscles.

Most recently, he went up to Jupiter NJ to see a neurologist who supposedly has experience treating ALS patients who have tested positive for Lyme. This doc is on the board (or maybe he's just an advisor, can't remember) of a well-know Lyme disease association. The doc had a list of patients who fit the same profile as Dad for ALS and Lyme, 4 of which were nearly identical. Dad is trying to get permission to talk with each of them to see if their treatments are helping to abate or reverse the symptoms.

The worst symptoms Dad is experiencing are severe shortness of breath (FVC down to 54%), and very little use of arms and hands. He can no longer bathe, dress, feed himself, or other ADLs. His voice is diminishing, but he can still swallow, chew, and move his tongue normally. His legs are still functioning fine, but he is so weak from lack of energy and the breathing problems that he cannot walk unassisted any more and must be transferred in a wheelchair. He also uses the Bi-Pap breathing machine almost round the clock now. So there, now you're up to date.

Dad strongly believes he has ALS. Whether it is end-stage Lyme disease or not, we may never know. His wife wants to keep pursuing treatment for Lyme, but Dad is too tired to continue to be dragged off to far-flung places to find a Lyme literate doctor who will treat him aggressively. I don't know where I stand, I just see him suffering so much and want to do all I can to make him comfortable.

I'm also feeling a little guilty because, after his ALS diagnosis, I discovered all this ALS-Lyme stuff on the web and we all felt so desperate that we took the chance on getting him treatment. But now I'm afraid I've made a real rat's nest of it, given Dad and his wife false hopes, and maybe even shortened his life by suggesting they pursue the connection. I have yet to find one person on all the boards who has a Lyme and ALS diagnosis and is actually improving.

I'm just heartbroken. Thanks for listening.

Liz





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