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Lyme Disease
Doctor choice if you’re given a terminal ALS diagnosis but have chronic Lyme
Dr. P in CT - 50.0% - 1 votes
Dr. C in NY - 0.0% - 0 votes
Dr. J in DC - 50.0% - 1 votes
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Posted 11/6/2018 11:10 PM (GMT 0)
If you were just given a terminal diagnosis of ALS ( by a Cleveland Clinic neurologist) and have chronic Lyme ( not responding to current treatment) + bad fungal infection (histoplasmosis- also not responding to treatment), and have a gut feeling it’s Lyme mimicking ALS....which expert doctor would you go see? Dr. P in CT, Dr. C in NY or Dr. J in DC? These specialists represent my best educated opinion. I’m looking for honest experiences & opinion based on outcome. Current infectious disease doctor has not served patient well due to ego so it’s time to go to the best. Thank you for responding. I’m desperate to help my dad.
Posted 11/6/2018 11:23 PM (GMT 0)
Hi! so I'm not sure who Dr C in NY is. In regards to the other two, Dr J seems to be more aggressive with therapy than Dr P. Both are good imo but in different ways. Dr J is ideal when it comes to babesia, and I think Dr P is especially great for bartonella (great in general too, he is extremely smart and flexible in his strategy/thinking).

That said, when it comes to an ALS dx which may be lyme/infection-driven, I'd personally want to see Dr P. The reason is he is more conservative with therapy initially, and for seriously symptomatic patients of ALS variety I think one should consider a very very conservative approach, at least initially. This is based on some of the anecdotal stories I've heard, some patients with advanced neuro-involvement caused by infections can have extremely severe herxheimer reactions.

Are you familiar with Dr Dave Martz? he was diagnosed with ALS but found out it was caused by lyme. Pamela Weintraub wrote about his story in her book "Cure Unknown." Reading that chapter might provide some insights? I certainly think it's a good idea to check for these infections and see how your father would respond to antimicrobial therapeutics. I wouldn't be surprised if down the line we find out that a (large?) subset of ALS cases are driven by polymicrobial infections (including tick-borne infections). Most MDs will laugh you out of the room when you bring up this hypothesis.

Post Edited (sebreg) : 11/6/2018 4:26:52 PM (GMT-7)

Posted 11/6/2018 11:43 PM (GMT 0)
The person with ALS - does he/she have swallowing issues?

I know Dr J has experience treatimg ALS patients - but I believe he says IV is needed.

I will post a link to a couple videos later - one is Dr Martz who had ALS diagnosis and the other is Dr J discussing Lyme treatment with a short “blurb” on ALS
Posted 11/7/2018 12:53 AM (GMT 0)

sebreg said...
Hi! so I'm not sure who Dr C in NY is. In regards to the other two, Dr J seems to be more aggressive with therapy than Dr P. Both are good imo but in different ways. Dr J is ideal when it comes to babesia, and I think Dr P is especially great for bartonella (great in general too, he is extremely smart and flexible in his strategy/thinking).

That said, when it comes to an ALS dx which may be lyme/infection-driven, I'd personally want to see Dr P. The reason is he is more conservative with therapy initially, and for seriously symptomatic patients of ALS variety I think one should consider a very very conservative approach, at least initially. This is based on some of the anecdotal stories I've heard, some patients with advanced neuro-involvement caused by infections can have extremely severe herxheimer reactions.

Are you familiar with Dr Dave Martz? he was diagnosed with ALS but found out it was caused by lyme. Pamela Weintraub wrote about his story in her book "Cure Unknown." Reading that chapter might provide some insights? I certainly think it's a good idea to check for these infections and see how your father would respond to antimicrobial therapeutics. I wouldn't be surprised if down the line we find out that a (large?) subset of ALS cases are driven by polymicrobial infections (including tick-borne infections). Most MDs will laugh you out of the room when you bring up this hypothesis.

Thank you for your response. Yes, I’m familiar with Martz. That’s part of what’s convinced me that my dad may not have ALS. Dr. C is Daniel Cameron. I’m posting his name now because he is very active in Lyme treatment and research. He has patients from as far as Australia. He doesn’t hide the fact that he is a Lyme doctor- just look at his website, FB page & Twitter. I was referred to him by a doctor in PA.
Posted 11/7/2018 12:57 AM (GMT 0)

Girlie said...
The person with ALS - does he/she have swallowing issues?

I know Dr J has experience treatimg ALS patients - but I believe he says IV is needed.

I will post a link to a couple videos later - one is Dr Martz who had ALS diagnosis and the other is Dr J discussing Lyme treatment with a short “blurb” on ALS

He has slurred speech along with coughing/chocking episodes. He has been on IV abx since late Spring-no improvement at all. He’s unfortunately in a rapid decline. Hence my decision to reach out on the forum again.
Posted 11/7/2018 1:06 AM (GMT 0)
Also wanted to mention that Dr SP in CT would be my second choice - He is knowledgeable and also seems kind and truly cares about his patients.

I don’t know who the other dr is

Edit - I do know of the other LLMD
Posted 11/7/2018 8:19 AM (GMT 0)
Here’s the speech Dr. Martz gave on his als/Lyme

https://m.youtube.com/watch?v=uy9fduldv6m

I’ve watched it 3 or 4 times.
It’s remarkable.
Posted 11/7/2018 2:36 PM (GMT 0)
Ah yes Dr C. He is a good source of information, in regards to treating patients I've heard he isn't quite as good. I would def prefer Dr J or Dr SP in that regard. Another one you might want to consider is Dr F in NY, lyme-literate neurologist. Feel free to email me if you'd like more info on her. I'd probably still want to go with Dr J or SP since they both have a lot of experience.
Posted 11/7/2018 3:31 PM (GMT 0)
I do not have experience with any of the doctors that you mentioned but I will follow this post. Someone who I love dearly was diagnosed by the wonderful (sarcasm) Cleveland Clinic in June of this year with ALS. Even though he said he had the bulls eye bite 4 years ago and they were supposed to test for Lyme, they never did. We then went through Igenex and he was positive through Igenex. He also has slurred speech. He has choking episodes and other symptoms. I can tell you that we are very fortunate because he is making improvements with 84 days so far of antibiotics. Muscle cramps are almost all gone, muscle twitching has declined and is almost all gone. At this time there is no further muscle wasting (only has in one hand). Still has slurred speech which gets a little worse when having herx but there have been moments when I can hear the original tone of his voice coming through and days when the speech is clearer. He had a little choking episode yesterday which was the first in quite awhile but his recovery time was so much quicker afterwards. His head was hanging and now he holds his head up with no issues. Still has neck pain but is still so much better than before. His strength inspires me everyday. We are making progress and I thank God every day for that. He went to see an "ALS Specialist" as a second opinion in Atlanta and was told he was crazy for treating lyme and that all doctors that do are quacks. Well, he is living proof that improvements can happen. do not give up. Your dad is blessed to have you as a support system to help him fight not only the illness but the medical system. I will keep you in my prayers
Posted 11/7/2018 3:31 PM (GMT 0)
Thanks for the link, Girlie. Just copied and sent to my parents and sister to get them on the same page as me.
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