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caldona

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Joined
Mar 6, 2011
Messages
402
Reason
PALS
Diagnosis
01/2007
Country
US
State
Ar
City
Mtn. Home
We home at 2:00 am this morning from Milwaukee and I am so tired. We went to see a Lyme Dr. and he confirmed that Raydon has Chronic Lyme Disease. We are all so happy that he doesn't have ALS, which is what the dr. at UAMS told us 6 month ago. Lyme Disease is a terrible disease, but it is treatable.
Thanks to my son and all the research he did on Lyme Disease, he found a Lyme Dr. and so we packed up and headed to Milwaukee to see him. We really like the doctor. We start treatments in about a week or two. The treatments will be done at home. Thanks to Matt and Stacy for taking us to Milwaukee...couldn't have done it without you. Thanks to all my friends and church family for your prayers. God is Good!

This is from one of my friends I had told her she should have her husband checked for Lymes. This is what she had to say.
 
May I ask who Raydon is? But you have ALS?

If so, fantastic news for Raydon! We love good news. And Caldona, if you have ALS, I will keep you in my prayers.
 
Yes I was diagnosed in 1- 2007 it took the doctor less than one hour to change my life. Raydon is my friend's husband I wrote about him before this was an update so people will know there could be something besides ALS. Do you have ALS.
 
The only thing to be aware of is that there are unscrupulous labs being investigated by the FDA for practices regarding results on Lyme Testing. While I'm sure Lyme Disease is a real problem for those with it--I'd be seeking a 3rd opinion before going to a so-called 'Lyme Literate' doctor who prescribes months of antibiotics that can be potentially harmful--and extremely expensive.

Hopefully his Lyme diagnosis was by an approved lab that is accepted by the FDA and other federal organizations that regulate diseases and their diagnosis. The NIH had an article on Lyme--so did the New York Times--warning people about false positive Lyme tests.

Please encourage your friend to be assured her husband has any and all symptoms treated while he pursues his Lyme treatment--such as bipap, etc should they be needed.
 
yeah, i went through the lyme route for a while too and spent thusands of $$ in antibiotics, long drives... with no results, unfortunately, i was tested by IGENEX and for some reason, i wonder who does NOT test positive with them... this lyme thing is a grat cash cow for the so called LLMDs... But I really hope he has lyme instead of ALS, just make sure it really is lyme!
 
yeah, i went through the lyme route for a while too and spent thusands of $$ in antibiotics, long drives... with no results, unfortunately, i was tested by IGENEX and for some reason, i wonder who does NOT test positive with them... this lyme thing is a grat cash cow for the so called LLMDs... But I really hope he has lyme instead of ALS, just make sure it really is lyme!

I was tested by Igenex and I tested negative. I am afraid Raydon does have ALS but the antibiotic won't hurt him if he does and just maybe he does have Lymes disease. They have good insurance.
 
Actually, long-term antibiotics frequently rx'd by "LLMDs" for Lyme can have significant side effects -- it isn't something I would try for longer than a month if there were not significant, durable and progressive improvement.
 
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