ALS/ Lyme Has anyone gone to the Emory Center in Atlanta GA

My friend was bitten by a tick approx 4 years ago and had the bullseye rash. Was treated with steroids.

Approx. 2 1/2 years ago started to have weakness in his right hand and then muscle loss started in his hand. Approx 2 years ago he had started to have slurred speech. He was diagnosed in June of this year by Cleveland Clinic with ALS. He did pursue after research Lyme Disease. Tested positive through Igenex. We found a local LLMD that has been treating him just about 30 days with Amoxycillin. Here is list of improvements

:Symptoms that have ceased or improved dramatically


Approx 2 years ago - several months of body aches, muscle aches, etc. ( flu like symptoms) Was all he could do to get out of bed. BETTER NOW

Had sore throat- 90% BETTER NOW (only with certain foods)

Problems Swallowing- 90% BETTER NOW

Severe Leg Cramps, Cramps in neck, etc 90% BETTER NOW

Tongue Movement declined-HAS IMPROVED

Geographical Tongue HAS IMPROVED

Had problems breathing when laying down on back 98% BETTER NOW (can sleep on back now)

Felt like something crawling on neck 100% BETTER NOW

Muscle Twitching in legs 90% BETTER NOW

CURRENT SYMPTOMS *****************************

Fatigue, weaker CURRENT

Bells Palsy- CURRENT but has improved

Muscle Wasting in hand CURRENT BUT NEVER HAS GONE BEYOND HAND

approx 2 years ago Slurred speech started, CURRENT but has improved 75%

Neck Pain CURRENT - No more hanging head- at times neck is still painful


He will be starting an IV antibiotic (not sure which one) in a few weeks that was prescribed from his LLMD. He has an appointment next week at Emory Center in Atlanta GA with an ALS specialist. We are hoping that they get rid of the ALS diagnosis. They want to do the EMG test again (he had this done at CC)

He does not want to go through that pain again and we are concerned that it may cause a set back for him with the progress that he has made. We are convinced that the ALS was misdiagnosed. I am curious if anyone has dealt with the Emory Center and if they did, were the doctors receptive to Lyme Disease or are they yet another place that does not believe in it? We are hoping because of his improvements that they say it is not ALS. Even though we believe it, I am sure you all understand how that can effect you mentally having that diagnosis hang over your head.

His symptoms would come and go which I believe would not happen if ALS. Also, since this started 2 1/2 years ago I would think if ALS, that he would be much worse and yet he is getting better every day. He rides his exercise bike 30- 45 minutes five days a week, has no trouble walking, still has strength in legs etc. Again if ALS, I don't think we would see improvements with the supplements and antibiotics. ( supplements were started after diagnosis in June)

sorry for rambling but we are so hoping to get rid of the ALS diagnosis but would like to be prepared for what is facing him in Atlanta when he goes. Has anyone been treated there for Lyme? Or do they only pursue ALS?

Thank you in advance

Yeah, I second Girlie. There are no improvements with ALS. Search Dr Martz. He was also diagnosed with ALS, treated aggressively for lyme and got better.

The source of my lower motot neuron damage was in great part to bartonella and mycoplasma. Btw rocephin only paused it ...bvt has me back to life

Psilociraptor said...
I have not been to Emory personally but Marshall Lyon is one of the only infectious disease specialists around that will even test people for Lyme.

....don't forget about Dr. J.

Since your friend found an LLMD who is treating him for Lyme, including IV ABX...then why not just ditch the ALS center altogether? No need to go down that trail-just my opinion!!!

Thank you everyone for your posts. He had his visit today. I am starting a new post with the frustration that he has been dealing with.