"Familial ALS" & Lyme Recovery: Kari Mayne

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
Post Reply
Posts: 519
Joined: Sun 30 Sep 2007 15:49

"Familial ALS" & Lyme Recovery: Kari Mayne

Post by CaliforniaLyme » Wed 31 Oct 2007 16:53

Kari Mayne

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!

Post Reply