JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Hey guys I met a woman at the place I take my son for OT and social skills and her father-in-law might have ALS. Though now they are saying that it's something else neurological (he can walk less and less). They are at a loss. He's been to the 'best' here in MD, including John Hopkins
They checked him for Lyme so many times, which have all been negative of course and he has not seen a LLMD. He's been ill about a yr and has gone downhill tremendously ~ can barely walk and is in a wheelchair most of the time. Every day this guy is getting worse
He's willing to do anything/go anywhere to find out what's going on. I educated her as much as I could in the 10 min we had and told her I'd be back this Friday with some LLMD's names/phone numbers and links. I'll be giving her the Under our Skin documentary also
I know of several LLMD's here in MD. I went to two and I would not recommend the two I saw here in MD. They had problems treating my case and I'm not near as bad off (nor had problems walking/misdiagnosis of ALS, etc) as this guy is. So, if he's willing to travel, why not give him the best of the best?
So was hoping to find a good LLMD that has dealt with ALS misdiagnosis for this guy. I just hope I can find a good LLMD for him before it's too late!!
Trying to keep this as close to MD for his family. I know there is a really good doc in NY, which I think is not that bad travel for him, but cannot remember his name.
Thanks!!
Posts: 1485 | From USA | Registered: Apr 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sent you a couple names.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
1st, ask to see the test results. They may have the answer in the test. Doctors still interrupt incorrectly CDC guidelines.
2nd, lyme isn't the only cause of ALS and no one knows the other causes.
3rd, treatment with abx can make matters worse if the reaction to the abx is to increase the symptoms of paralysis.
Wish them good luck and hopefully they can find a good LLMD.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
bump
Posts: 1485 | From USA | Registered: Apr 2004
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bettyg
Unregistered
posted
JILL, my files show nothing for ALS specialty...
check w/metallic blue/mike; his email is shown in 1st post at top of seeking dr. ok! he should e able to do a SEARCH ALS only...
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Sending you a PM with an idea
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Thanks all! Appreciate the feedback
Will contact metallic blue also. I am well aware that this could be something other than Lyme but I also know it could be Lyme/co-infections. I know they have tested him numerous times because they thought it was Lyme but each test came back negative. Would rather the dude go to a real LLMD to make sure.
Will be giving him info I printed off for him, Under Our Skin and a list of the names/recommendations I've gotten this Friday when I see his d-i-l again
Thanks again!!!
Posts: 1485 | From USA | Registered: Apr 2004
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