If you were diagnosed with ALS but cured by treating Lyme, would you be willing to share a brief story of your initial/main symptoms and your road to proper diagnosis and/or recovery? It would be much appreciated. In particular, I'm trying to find out why they hung on the ALS diagnosis. Negative EMG results? Clinical symptoms? Etc... As always, thanks for your support. Kenny
Posted by 1332Nancy (Member # 7689) on :
I know a Lyme doctor that is treating several ALS patients. I assume he is treating them for Lyme. I also know of one patient that was diagnosed with ALS and then later found to be positive for Lyme.
Posted by lymie tony z (Member # 5130) on :
I was diagnosed with als,ms,fm,neurapathy,post polio syndrome,,,etc...
Two emg (painful and unnecessary) negative results.. Mri neg results...etc and so on....
Muscle failure, pain, stiff neck,interupted speach, fatigue, pawlsey ....etc and so on....
finally got lyme diagnosis two or three years later and got better...to the point where my previous ducks told me I was fakeing every other symptom...nice........huh??
zman Posted by Kenny from PA (Member # 8007) on :
Thanks for the info. So here's the $64,000 question. Has anyone here been diagnosed with ALS and failed their EMGs but ended up having Lyme? Kenny
Posted by lymeloco (Member # 7192) on :
Not sure if this will help, but it was on the news last year!
The West Nile Virus has certainly grabbed its fair share of the headlines. One local health expert says Lyme Disease should be of greater concern to Texas residents.
A cell phone rings, and you answer it. That simple task becomes painfully difficult for Lyman Jones who's recovering from Lyme Disease.
``I would have to get the cell phone that's hard to flip,'' Jones said.
Jones was an instructor for the National Outdoor Leadership School when he first got sick three years ago. He was initially diagnosed with ALS or Lou Gerhig's Disease.
``For about 18 months, I thought I had ALS, and I thought I was going to have a slow, crippling decline, and I would have to say goodbye to everybody, but now it's like having a new lease on life,'' Jones said.
Five months ago, Jones met Family Nurse Practitioner Ginger Savely.
``He was an outdoorsy guy. He led expeditions and hikes through the wilderness. Certainly had a lot of exposure potential so certainly someone like that the red flag goes up on my mind,'' Lyme Disease expert Ginger Savely said.
Savely is considered one of the top Lyme Disease experts in the country. She says while the West Nile Virus gets most of media exposure, Lyme Disease should get the lion's share of the attention.
That's because the disease, which is caused by Borellia bacteria and transmitted through deer ticks and now possibly even mosquitoes and horseflies, is more likely to affect a lot more people than West Nile.
``It tricks you. It's called the new great imitator,'' Savely said.
Savely says often Lyme Disease patients are incorrectly diagnosed with everything from Lupus to MS to Parkinson's to ALS. All usually sporting a rash and complaining of a stiff neck, head and body aches.
``The symptoms are so flu-like which is confusing, but we don't normally see a lot of flu in the summer so you have to be suspicious if it's the spring or the summer and you're showing flu like symptoms,'' Savely said.
Five months ago, Jones could barely walk and talk. Even though he still faces perhaps two years of treatment, he's thankful.
``I would never think I would say hooray I have Lyme disease, but when you go from ALS to Lyme, it's really wonderful,'' Jones said.
Savely has been named the Texas Nurse Practitioner of the Year for her work with hundreds of Lyme Disease patients from all over the country.
Posted by Lyme Sis (Member # 6692) on :
Hi Kenny Know exactly where you are coming from. My brother spent a whole year with the "ALS" tag.
First symptoms - twitching, slow slurred speech, swallowing, choking difficulties..progressed to weakness, depression, vision problems, stiffness...horrible gait/balance (falling ALOT), weight loss...the list goes on and on and on.....
Had the EMG's that showed nerve damage, and the doc's wouldn't even consider a Lyme test...certain of ALS.
Took it upon himself with the prelim diagnosis of ALS to see a LLMD. Started ABX Dec. 04 after a + WB. Progress has been slow/minor improvements, but it isn't progressing either. E-mail me if you'd like more detail.
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