He told me, IF I have ALS I can expect a 2-3 yr life expectancy, and he wanted me to go see his Pulmonary Dept - that day. I asked if he would please do MORE lyme tests, please. His response was. "you don't have lyme"!

Come to find out, when I was begging him for MORE Lyme tests, I actually got out of his Nurse that he NEVER TESTED ME FOR LYME AT ALL! His reply, when questioned, why not, was, "we don't do that here". Oh, OK, GW doesn't test for Lyme - what a tragedy! He did, however, send me back out for an Aids test, in an effort to "rule everything out".

He gave me a script for Rilutek, & after 15 days of that crap, i knew exactly why he wanted to hook me up with his Pulmonary Dept. right away! I almost called 911 on 2 occasions, over a 10 day duration of taking that sh**, where i couldn't breath, and barely swallow liquids or food, without choking and nearly aspirating!

2 weeks later, i found an LLMD and tested high positives for Lyme and 2 coinfections - even met the "almighty" CDC criteria for being positive & active infection! I was immediately taken off Rilutek & started abx treatment, and haven't seen pulmonary yet,
and I don't plan on it!

I actually had about 75% of my symptoms go away in the first 6 months of treatment. I was doing great.

I believe that my coinfection has come back recently, given some of my symptoms that have returned. In the beginning I was treated with Mepron for only 5 months, which may not have been long enough. Thankfully, my lyme literate neurologist just put me back on Mepron.

I'm seeing a new LLMD in August & I hope with the right treatment, i will continue to improve.

I will be changing my screen name after this post. I believe I've gotten my point across with the similarities between ALS and Lyme symptoms, i always new Lyme was my demon, not ALS (a disease with no known cause).

Maybe some of you will figure out my new name! Hell, axelrose wasn't that hard to figure out, and i'll be the one picking on chuck.

This is ALSLYME signing off, for good, under this name.

A.L.S stands for ALL LYME SYMPTOMS!

In addition to changing your name, Maybe your anniversary date could also be a date you got the new diagnosis with a not so grim prognosis.
I'd want to put all of that behind me also.

I noticed you were put back on Mepron. Are you also on Zith so Babs doesn't build up a resistance to the Mepron?

I have a name for you.. Cabanna boy??
Actually, I should be the one making you the fruity drink huh?

Well, How are you feeling right now?
It sounds like you have a pretty good neurologist, good for you.

but remember my earlier post, If your neuro gets outta line
just let me know! I be sure to find something to cram somewhere

Patients -- probably..
Doctors -- rarely!

Good luck with your new LLMD and we'll look forward to your new Board name!

I contracted Lyme in February of 1988 - thirteen years ago. I was not diagnosed
with lyme until August 1999, after being sick for 11 years (and having a
stillborn child - lyme of course.) Before I was finally diagnosed with lyme I
exhibited all the classic ALS symptoms, and had lost an uncle to ALS. Thus -
the doctors thought they had an ALS diagnosis nailed down tight. Only through
my stubborness and refusal to accept the ALS dx did I research the internet and
find an llmd. My first visit, even without labs, the doc - God bless him - said
I had the worst case of lyme he had ever seen at that time. Subsequent lab
tests ELISA and Western Blot both positive.

The symptoms which are now COMPLETELY GONE are:
no more severe muscle cramps
no more fasciculations
no more numbness in face/tongue/forehead
I can swallow without difficulty now
no more slurring of speech
no more limping and severe weakness in legs
no more ringing of ears
no more confusion/memory loss/lyme fog/depression
no more debilitating fatigue
I can now pick up pennies off the floor - fine motor skills are back in hands
I can lift my eyebrows now
I don't choke on liquids
Bright light doesn't hurt my eyes anymore
Reynaud's syndrome is better
No more intense heel/bottom of foot pain
No more TMJ or tooth pain
No more running into walls, doors because of poor balance or legs "giving out
from under me"
I can drive without getting lost
No more hallucinations
I can count to 10
I can raise my arms to shampoo my hair
No more pain in joints or numbness in limbs

Of course, there's more symptoms...but you all know what they are. These were
just the ones that plagued me most. Everyone, of course, responds differently
to medication and recovers at different rates. But, I have no doubt that all of
you will get better over time. Probably the thing that helped me most is the
Bicillin shots. Behaviorally, plenty of REST and the determination that I would
not identify myself as a "sick" person kept my attitude positive and my spirits
up even when my body argued the opposite. I have lyme, lyme doesn't have me
kind of thinking.

I see a great spirit of helpfullness and positive thinking in these emails
which makes me want to respond. In various lyme chats and online discussion I
have sometimes encountered "poor me" kinds of attitudes. NOT IN THIS NEWSLETTER
- Renee and Sean you're awesome! I haven't really participated in any support
groups or discussions such as this in a while. Since I've gotten better, I
don't like to be reminded of my lyme nightmare (even though I am still taking
Bicillin shots twice weekly.) But you people are so sharp and caring I felt I
needed to tell you a good news story.
Bicillin shots have almost cured me. Been taking them a year now...99% of my
symptoms are gone. Lyme can be defeated! I started seeing improvement
(dramatic) in a couple of months after I started with the Bicillin shots. My
doctor was amazed. It's wierd, you sometimes don't notice that you're getting
better because THERE ARE SO MANY, MANY THINGS that are hurting or not working
right. Then, it will just come to you "Oh, I didn't slur my S's today" or "My
left hand doesn't feel as stiff and numb as it did." or "The sun didn't hurt my
eyes today." Sometimes it takes awhile to notice because to you the changes
seem small, but they all add up. The biggies for Mike - like getting out of bed
unassisted - take longer because there are more muscles/nerves/joints/etc.
involved in doing them. Each muscle/nerve/joint has to heal (and there are
many, many of them) before the motion gets easier. That's a lot of healing.
That's why you'll see the small changes first - such as ears stop ringing. Not
as much is involved. My response is that Mike is probably improving
dramatically, but it may not be in the areas that worry him most.

Regarding the Bicillin shots. Yes, you will find hard lumps at the injection
site. There's no way to avoid it. They will eventually get smaller - but not go
away. You see, it's scar tissue under there. Every time you get a shot, it
damages the tissue. These shots are powerful. You will experience times where
it's very difficult to insert the needle because you'll run into a lump of scar
tissue built up from continuous injections. It really hurts when this happens.
Yes, sometimes I have bicillin leaking back out of the injection site. It
doesn't worry me. It's usually because I got active too fast before my body
absorbed the Bicillin. Just slap a bandaid on their and wait a couple of
minutes before attempting to move.

I sympathize with dilemma re: childcare when you can't get out of bed. My doc
told me to put my 2 1/2 year old into daycare last May. This month - we took
him out because I am well!

I always wanted to kid you about your name:

Al Slyme!!! Like that??!

I'm so thankful that you got the proper diagnosis and not a death sentence.

That rilutek sounds dangerous indeed!! To think that it CAUSES the breathing problems that so many ALS patients have!

[I do realize that ALS patients can have major breathing problems without the rilutek.]

See ya Al!!

I contracted Lyme in February of 1988 - thirteen years ago. I was not diagnosed
with lyme until August 1999, after being sick for 11 years (and having a
stillborn child - lyme of course.) Before I was finally diagnosed with lyme I
exhibited all the classic ALS symptoms, and had lost an uncle to ALS. Thus -
the doctors thought they had an ALS diagnosis nailed down tight. Only through
my stubborness and refusal to accept the ALS dx did I research the internet and
find an llmd. My first visit, even without labs, the doc - God bless him - said
I had the worst case of lyme he had ever seen at that time. Subsequent lab
tests ELISA and Western Blot both positive.

The symptoms which are now COMPLETELY GONE are:
no more severe muscle cramps
no more fasciculations
no more numbness in face/tongue/forehead
I can swallow without difficulty now
no more slurring of speech
no more limping and severe weakness in legs
no more ringing of ears
no more confusion/memory loss/lyme fog/depression
no more debilitating fatigue
I can now pick up pennies off the floor - fine motor skills are back in hands
I can lift my eyebrows now
I don't choke on liquids
Bright light doesn't hurt my eyes anymore
Reynaud's syndrome is better
No more intense heel/bottom of foot pain
No more TMJ or tooth pain
No more running into walls, doors because of poor balance or legs "giving out
from under me"
I can drive without getting lost
No more hallucinations
I can count to 10
I can raise my arms to shampoo my hair
No more pain in joints or numbness in limbs

Of course, there's more symptoms...but you all know what they are. These were
just the ones that plagued me most. Everyone, of course, responds differently
to medication and recovers at different rates. But, I have no doubt that all of
you will get better over time. Probably the thing that helped me most is the
Bicillin shots. Behaviorally, plenty of REST and the determination that I would
not identify myself as a "sick" person kept my attitude positive and my spirits
up even when my body argued the opposite. I have lyme, lyme doesn't have me
kind of thinking.

I see a great spirit of helpfullness and positive thinking in these emails
which makes me want to respond. In various lyme chats and online discussion I
have sometimes encountered "poor me" kinds of attitudes. NOT IN THIS NEWSLETTER
- Renee and Sean you're awesome! I haven't really participated in any support
groups or discussions such as this in a while. Since I've gotten better, I
don't like to be reminded of my lyme nightmare (even though I am still taking
Bicillin shots twice weekly.) But you people are so sharp and caring I felt I
needed to tell you a good news story.
Bicillin shots have almost cured me. Been taking them a year now...99% of my
symptoms are gone. Lyme can be defeated! I started seeing improvement
(dramatic) in a couple of months after I started with the Bicillin shots. My
doctor was amazed. It's wierd, you sometimes don't notice that you're getting
better because THERE ARE SO MANY, MANY THINGS that are hurting or not working
right. Then, it will just come to you "Oh, I didn't slur my S's today" or "My
left hand doesn't feel as stiff and numb as it did." or "The sun didn't hurt my
eyes today." Sometimes it takes awhile to notice because to you the changes
seem small, but they all add up. The biggies for Mike - like getting out of bed
unassisted - take longer because there are more muscles/nerves/joints/etc.
involved in doing them. Each muscle/nerve/joint has to heal (and there are
many, many of them) before the motion gets easier. That's a lot of healing.
That's why you'll see the small changes first - such as ears stop ringing. Not
as much is involved. My response is that Mike is probably improving
dramatically, but it may not be in the areas that worry him most.

Regarding the Bicillin shots. Yes, you will find hard lumps at the injection
site. There's no way to avoid it. They will eventually get smaller - but not go
away. You see, it's scar tissue under there. Every time you get a shot, it
damages the tissue. These shots are powerful. You will experience times where
it's very difficult to insert the needle because you'll run into a lump of scar
tissue built up from continuous injections. It really hurts when this happens.
Yes, sometimes I have bicillin leaking back out of the injection site. It
doesn't worry me. It's usually because I got active too fast before my body
absorbed the Bicillin. Just slap a bandaid on their and wait a couple of
minutes before attempting to move.

I sympathize with dilemma re: childcare when you can't get out of bed. My doc
told me to put my 2 1/2 year old into daycare last May. This month - we took
him out because I am well!

Newsgroups: sci.med.diseases.lyme
From: [email protected] (halgaard) - Find messages by this author
Date: 2 Jul 2001 02:24:28 -0700
Local: Mon,Jul 2 2001 5:24 am
Subject: Lyme treatment for ALS
Reply to Author | Forward | Print | Individual Message | Show original | Report Abuse

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-*** ,
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 [email protected]

When Kari expressed her pos reaction to bicillin i guess her doc listened to her, unlike my doc.

I had begged him, for 9 months, to please increase my bicillin to more frequent than 1x mo., considering my dramatic pos reaction when i did get it. But he never obliged me - even at the request of my lyme-literate neurologist!

After reading that thread, it makes me despise him even more, and wonder what his reasons or motives could possibly be, by not giving me the abx that showed improvement.

I read all the time that everyone is different and if you find a drug that works, you should go with it! He would never listen to any of my feedback, pos or neg. At my visits he would talk more about himself than me. Looking back, i dont think he ever even asked anything about my symptoms or reactions to meds, unless i told him. I think he treated me more like a case study than an individual.

If you sense a little anger here, you are right! Why a doc would not go with a drug that had such a pos reaction, i'll never know. His answer to all my concerns was always, "you have to work out harder", what a joke!

Well, i got that off my chest, thanks, i needed to vent! I want to thank you for that thread. I have read alot about bicillin and know alot of people have pos reactions to it. The past is spilt milk, and wasted time and money, but we all live and learn.

I hope my new LLMD will see what abx work for me and go with it. and thanks again for posting that thread, it gives me much needed hope.

It is a beautiful thing to have a new lease on life, huh?

By the way I love a good barbeque, too. Can my family come? We will be the ones spraying the repellent on ourselves every five minutes! We love horses, too.

I like my hotdogs well done, by the way.

Seriously, I am glad you are on your way to wellness. Your ability to articulate yourself shined through today.