ALS diagnosis/ Beleive it is Lyme

My friend was bit by a tick approx. 4 years ago and at that time was treated with steroids. Approx 2 1/2 years ago he started to have muscle wasting in his hand and approx. 2 years ago his speech become slurred. He was diagnosed by Cleveland Clinic with ALS in June. We then went to a local LLMD. Local labs came back negative for Lyme. Only showed high EBV. Tested through Igenex and this is his final results

Immunoblot IgM

23* positive
41* Ind

Immunoblot IgG

31* Positive
41* positive

CD 57

Lymphocytes Low 1.90
Absolute Count Low 34

We were thrilled to see that IgG positive with Igenex and IgM can be considered a positive because of the IND band. Also felt with his symptoms that chronic lyme was a possibility and the CD57 helped confirm this.

Since June here are symptoms and 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. Hand is getting stronger now.
(within the last few days noticed that there is some muscle wasting in calf muscle in one leg. Very slight)

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 has been treating for a little over 30 days with a local LLMD with Amoxycillin and some improvements like the strength in his hand, hanging head and speech improving have all been since antibiotics. Since we just noticed the muscle wasting in calf he was a little alarmed since that happened while on antibiotics. He will be receiving IV antibiotics soon. Not 100% comfortable with current LLMD but since we can get the antibiotics covered under insurance that is where we have to go.

He saw a second opinion today (ALS Specialists) regarding the ALS diagnosis. Because he had symptoms that were improving we were hoping to have that diagnosis thrown out the window or at least if we could have received a "lets evaluate you again in 6 months" response. Instead he was given the ALS diagnosis again and told that he could talk to the Infectious disease doctor in the same clinic (Atlanta GA). We already had made the mistake of seeing an infectious disease doctor last month somewhere else and were told that he did not have Lyme even though we had the Igenex results.

I have read about Dr Martz and have watched Under your Skin and Under your Skin 2. Why can we not find anyone willing to get rid of ALS diagnosis? Even with his improvements, they are saying ALS. In all the research that I have done I can not find anyone that improved with ALS or that symptoms come and go with ALS. But I have read that with Lyme.

Is anyone familiar with a LLMD that does not believe in the ALS diagnosis and is willing to treat the Lyme. His current LLMD, is giving antibiotics but will not say anything one way or the other with ALS. What bothers us with current LLMD is that he is treating him for Lyme but had said after the first 30 days of treatment that we had 3 choices: 1.) continue with Amoxicillin, 2.) IV treatment or 3.) stop treatment. Why would we stop treatment if we are seeing progress? Then we start thinking "does he not believe he has Lyme?"

I know muscle wasting and slurred speech are with Lyme as well. All of his symptoms are. It is so frustrating and honestly he has seen 5 doctors so far and only one that has believed in treating Lyme.

He did have bad EMG test results from Cleveland Clinic but since Neuro Lyme causes demyelination which can result in abnormal nerve conductive test and produce false readings we don't feel that seals the deal with ALS.

How does everyone stay positive when you are shot down over and over? My heart breaks because I feel if a doctor would say, its not ALS. Lets treat this Lyme, he would fight and win. But you can only be told that you are crazy for believing in Lyme so many times. I also worry that if he herxes while on IV antibiotics that might make him think he is getting worse with the ALS vs making things better with the Lyme. Sorry for rambling. I am just lost right now.

Thank you bluelyme! I will pass along the information. I see that you were bed bound and now keeping up with a 5 year old! that is the kind of news that I needed to see!! THANK YOU! I believe it is Lyme. His bands are Lyme specific. It is such a battle to get people to believe you. It is so terrible that you don't feel well but then you have to fight to convince people and doctors what is wrong with you.
Thank you for the information.

Thank you Girlie. I did email you. Would you say Dr J is the best LLMD for treating ALS patients? Are there others you would recommend as well or is he the best in these situations? As always thank you so much for your help

Dr K in Seattle has a lot of experience treating patients with ALS. He believes it is caused by Bartonella.

I am currently corresponding with a man who was diagnosed with ALS on a bvt fb page. He is seeing Dr K. He's being treated with bvt and heavy detox. His last lung test showed a 7% improvement.

Post Edited (Hoagie) : 9/19/2018 6:18:10 AM (GMT-6)