Let's have a discussion on our experiences with being treated for lyme disease.
Have you found a doctor in your area who is knowledgeable in lyme disease.?
Here is our story:
My husband almost 65 yrs. old, who up until almost 2 years ago, was a very strong and ambitious guy, not to mention workaholic.
He noticed shortness of breath upon exertion and was misdiagnosed for 16 months with asthma, even though he told several doctors that he couldn't lay down at all, and consequently got no sleep.
Finally in Oct. of 2010 a new pulmonologist finally listened to him when he told him he thought it was the outside of his lung, not the inside, so after some tests, sent him to a neurologist, who then diagnosed him with ALS.
They also found he has a bilateral paralyzed diaphragm and is on a BiPap machine with 2% concentrated oxygen, which he only needs when he goes to sleep as his oxygen drops in the 70's, but otherwise is 98 to 99% as he was never a smoker.
We of course did not want to accept this diagnosis and learned that lyme can mimic ms, parkinsons and als, so we tested at IgeneX positive with 4 positive bands and 1 indeterminate, but that wasn't good enough, I wanted to make sure before I put him through anymore then he was already going through, so I insisted they do the Epitope test which is better then 98% that he indeed has lyme.
He also tested positive for Ehrichlia Chaffeenis.
Well there was NOT one doctor in our area, which is Madison, Wisconsin, with our famous University of Wisconsin Hospital & Clinics and the Dean System, still we could not find one doctor who was literate in lyme.
They make you feel like your crazy and grabbing at straws.
He should just take the als diagnosis and deal with it.
Well of course, I would not just deal with it, so we found a lyme doctor 2 hours north of us and started some antibiotics. He just had such a hard time taking pills, making him sick, so he went on IV Ceftriaxone, which I researched and they are having a clinical trial for als and it is also a treatment for lyme, but his first infusion, he developed hives, so we had to stop and start Azithromyicin, along with Doxy, 100mg. twice per day.
I forgot to mention we had to drive 4 1/2 hours north to get the picc line put in by a radiologist who had lyme disease.
He is struggling so much with his breathing while taking the antibiotics, but he still isn't having trouble with his limbs or talking or swallowing.
He is left handed and noticed 4 or 5 years ago, weakness in his left hand and it looks alittle like it is atrophied.
He has also lost 45 to 50 lbs, so is 128 lbs and is 5'61/2" so we are trying to help him eat and build up his muscle loss.
He is a very fussy eater so things have to taste good to him otherwise he will not take it.
He also drinks diet coke, which I have tried to get him off from, with not much luck, he doesn't drink as much as he used to, but can't seem to give it up.
So, I would love to hear from both of you, as to what you each would recommend, as you can imagine,
"Time is of the essence".
Thank you so much for your time in advance, I am very anxious to hear from you.
Dixie
p,s, If anyone has any stories or information on paralyzed diaphragm & lyme, please feel free to email me at: dixieleeo@tds.net
or if you have any information or advice.
