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dvjcool

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somewhere
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Hi guys.
I am from India and this is regarding diagnosis of my father. He is now 63 years old.
It all started about 1 year back when he started complaining about trouble in grasping small objects/ starting car with keys and holding spoons.

EMG/NCS confirmed there is a motor nerve problem in both hands and legs. We found that his grip had become extremely weak and was unable to raise arms straigth up.

He had no symptoms in legs and was regularly going for long walks. After a series of tests and MRI scans/ the docs kinda confirmed he was having MND.

However, he tested positive for IMG, IGG test (Lyme test) . We did not go for western blot test as the doc was not aware about it. He advised 45 days of 200 mg doxycycline everyday.
We observed some improvement in a months time and stopped antibiotic after 45 days. He soon started getting the weakness back (after stopping doxcy) and started getting confused and lost (something like dementia).

Suddenly 1 day he developed respiratory failure and was admitted in ICU on ventilator. It was because of weak diaphragm.We continued his antibiotics and after 2 months of ventilator support he started breathing on his own although he still uses very little oxygen support though nasal cannula while sleeping. His cough reflex has completely recovered. It has been 3 months and we are seeing some recovery (gradual but consistent). We got him admitted in the best hospital in India : AIIMS, New Delhi about 15 days back for carrying out further tests (to confirm diagnosis). However, all test results were negative and docs are saying its most probably MND .

As per the docs, presentation of Lyme disease is very different and this is not even close to what lyme disease is like. IGG and IGM (lyme test) conducted recently have given negative results (could be because of antibiotics). . Also, the PET Scan is negative although it shows atrophy in cerebrum (which can happen in both lyme and some form of MND). .

I am really confused and frustrated as we are unable to find a clear diagnosis. Please advise if there is we should just wait and continue with doxycycline for a few more moths or should we move him to some Lyme expert in US/Europe??

we do not want to miss the chance of giving him a possible treatment even if there is slightest chance.
It will be of great if any one can recommend some doc/hospital who can help us in this case.

thnx
DJ
 
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If you are coming to Europe or the U.S. for treatment, I would say get yourself into an ALS specialist and get a second opinion. I am not sure what the possibilites for that are in India, I am not at all familiar with health care there.
 
This thread has 3 mentions of major centers in India, that you might want to consider, as well as the possibility of remote consultation with MGH in Boston (Cleveland Clinic does this also, and others, I'm sure). A second opinion would be my next step.

Best,
Laurie
 
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