Lyme treatment for ALS 
Author Message
 Lyme treatment for ALS

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 {*filter*}Flagyl
500 mg tid and {*filter*}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 {*filter*}ly 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 {*filter*}flagyl and doxycycline, so I
laid off the doxy and started with only the flagyl. Within four days
of just {*filter*}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



Fri, 19 Dec 2003 17:24:28 GMT
 Lyme treatment for ALS
You must be so thrilled!  I hope you continue to improve and your remaining
symptoms will disappear as well.

Peace and health,

Sharon

Quote:
>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 {*filter*}Flagyl
>500 mg tid and {*filter*}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 {*filter*}ly 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 {*filter*}flagyl and doxycycline, so I
>laid off the doxy and started with only the flagyl. Within four days
>of just {*filter*}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




Fri, 19 Dec 2003 23:06:09 GMT
 Lyme treatment for ALS
I am so glad for you!!!


Fri, 19 Dec 2003 23:33:04 GMT
 Lyme treatment for ALS
Dave,

Glad to hear it.  Keep going and I am sure it will get even better.

Take care,

Willow


Quote:
> 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 {*filter*}Flagyl
> 500 mg tid and {*filter*}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 {*filter*}ly 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 {*filter*}flagyl and doxycycline, so I
> laid off the doxy and started with only the flagyl. Within four days
> of just {*filter*}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




Sat, 20 Dec 2003 02:42:58 GMT
 
 [ 4 post ] 

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