Recovery from ALS/Lyme: Dave Marr

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
CaliforniaLyme
Posts: 519
Joined: Sun 30 Sep 2007 15:49
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Recovery from ALS/Lyme: Dave Marr

Postby CaliforniaLyme » Wed 31 Oct 2007 16:51

I was dx'd definite ALS 3/00 and tested positive for Lyme on ELISA and
Western Blot 2/01. On 4/18/01 I began an aggressive therapy for Lyme.
I started a six week course of IV Rocephin followed with oral Flagyl
500 mg tid and oral doxycycline 100 mg bid. My ALS symptoms started to
deminish at day four of IV Rocephin with spasticity, cramping and
virtigo disappearing. Within another three days clonus in ankles and
jaw became almost non-existant as well as speech problems and
swallowing difficulties. Prior to IV Rocephin the spasticity and
cramping kept me on my butt. My diaphragm would cramp violently if I
sneezed. I also fell a lot prior to IV and managed face plants most of
the time. I have not fallen once since abx. I alos changed the oil and
filter in my two cars and hand washed them.

During the six weeks of IV Rocephin my ALS symptoms were mostly gone.
I was left with the muscle wasting that had occurred since onset.
There has been no new wasting as far as I can tell. Being a smart-ass,
I felt there was no need to combine oral flagyl and doxycycline, so I
laid off the doxy and started with only the flagyl. Within four days
of just oral flagyl my symptoms all returned, spasticity, cramping and
clonus. I started doxy and within 24 hours those symptoms started to
disappear.


It is now three months since the start of abx. I have no spasticity,
cramping or clonus. My reflexes fall within normal range, they had
become quite hyper. My FVC went from 68% prior to abx to 88% now. I
have minor foot-drop in the left ankle and the right has none. Prior
to abx I had AFO's for both feet as dorsaflexion was gone. My leg
strength is increasing as I am now able to walk two miles/day and
continue to shave time from the miles. I could not walk one mile prior
to abx.


Basically, what I am left with is a pure lower motoneuron syndrome
that has left me with atrophy. My left hand, arm, both shoulders, my
neck and left leg have significant loss of muscle. My right leg has
rebounded the best as it was not too affected. My right hand and arm
are affected but they are also rebounding nicely.


Take care

Dave Marr

NellyP
Posts: 43
Joined: Mon 29 Oct 2007 18:22

Re: Recovery from ALS/Lyme: Dave Marr

Postby NellyP » Thu 1 Nov 2007 15:42

Sarah,

Thanks for posting this.

Can you tell us what has happened to Dave Marr since he wrote this?

Nelly

CaliforniaLyme
Posts: 519
Joined: Sun 30 Sep 2007 15:49
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Re: Recovery from ALS/Lyme: Dave Marr

Postby CaliforniaLyme » Thu 1 Nov 2007 16:01

YES- somewhat*)!!! After THAT post he got better until he was completely normal but still on maintenance orals- and he was hanging out online a lot trying to spread the word in ALS groups- and do you know what happened? They either ignored him on ALS groups- or told him that he never had real ALS and was a faker and wrote him HATE mail. He was very distressed about the resistance considering that he had a "real" ALS diagnosis- with muscle testing (not ART muscle testing) the electrode kind!!! He was firm ALS diagnosis.
Anyway, he decided to give up on preaching re his experience online after he got real hate mail from ALS people who accused him of torturing dying people with lies!! I think they may have thought that because he was the QUICKEST recovery Ihave ever seen with ALS/Lyme- may have seemed truly incredible to them, but he was real. I couldn't believe he got treated like that- people get really tied to their diagnoses. Anyway, last time I talked to him was a long time ago but he was normal again and on maintenance abx and was saying goodbye, adieu, auf weidersein farewell*)!!! He was kind of a broody guy but really a sweetie!!! I know if he got worse again, he would come back. I am always glad I haven't seen him pop up again!!! But he may one day!!! Last time I knew of him he was running miles every day, not just walking- and he was planning on some kind of motorcycle trip somewhere if I remember right- he had a motorcycle- he was a really nice guy-
Best wishes,
Sarah

NellyP
Posts: 43
Joined: Mon 29 Oct 2007 18:22

Re: Recovery from ALS/Lyme: Dave Marr

Postby NellyP » Thu 1 Nov 2007 16:32

Thanks a lot, Sarah, for telling us here the story of Dave Marr, it is SO important for us to have stories like this one all in the one place, so that we can just pull it out when we want to communicate with someone.

I remember reading his name before and I remembered reading some success stories from people with ALS diagnoses, but I would not have been able to put the two together (except for what Dr Harvey and Dr Martz published).

Right now, in fact, I have a request from someone whose mother has an ALS diagnosis following a 2003 tick-bite then Lyme diagnosis. I was looking for stuff to give her. And all I could think of was MAB's stuff. But I know he pulled it all out and closed his website. I still have the stuff he thought back then, and I tend to think he was NOT wrong, just that the thing needed a bit of tweaking. What Dave reports illustrates just that, in fact.

Great to be on this forum, I have a feeling it's going to be way, WAY better than what Lymenet flash has become

Nelly (in France)
PS It's funny having all you guys "over here". I feel like now you're all on MY turf :))))

CaliforniaLyme
Posts: 519
Joined: Sun 30 Sep 2007 15:49
Contact:

Re: Recovery from ALS/Lyme: Dave Marr

Postby CaliforniaLyme » Thu 1 Nov 2007 19:36

We ARE on your turf, Nelly*)!*)!!
(And you're not a negative Nelly at all*)!!!!!!!!!!!


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