A family member of mine may have ALS and has been very sick, they are testing for lyme but test results have not come back yet.

I wondered what the most affective treatment was used...IV, orals, etc. and how quickly the turn around was...She took sick really quickly...I'm really hopefull that it is lyme and not ALS, as the ALS treatment is not working.

Contact [email protected] ASAP! She had ALS from Lyme , ie she had Lyme not ALS and has made almost a full recovery. She does not mind that I give her email out. I dont know where you are from, but she is from New Jersey.

I have heard of discussions about this topic but can't give you a specific.

Do a search and see what comes up.

Please let us know how this turns out.

[email protected]

And Richters I got your email, thank you for sending the info. She is from NH. But may be worth the trip at this point.

I haven't had any word on the tests results as of yet. I'm just hoping they will be open to listening to me if all else continues to fail.
I'm not a Dr. but nothing else seems to be working at this point and she is going down hill real fast.

There was an article about a patient of Dr. Bach's, named Tom Coffey, in People Magazine (June 16th issues, with Demi Moore on the cover).

Tom Coffey was diagnosed with ALS and given 6 months to live. He was ver sick and even on a feeding tube.

A relative of Tom's wife's convinced them to see Dr. Bach. He treated Tom Coffey for lyme and he's now on his way to recovery. They have since had another baby and named him Gregory, after Dr. Bach.

(Hope this is a somewhat accurate account! )

Email me if you like.

What are your symptoms?

Have you had an MRI? What did it show?

You need to see a Lyme specialist! You are getting nowhere with these doctors!

Secondly, many of the symptoms of Lyme mimis symptoms of ALS, especially muscle twiching, weakness, muscle pain, etc.

Lyme DOES NOT cause ALS, contrary to what a (very) few people say.

I don't believe your family member would feel "sick" if she had ALS, but there would be quickly progressing problems with balance when walking (but not necessarily dizziness), and gripping things would be very difficult (she would be dropping things constantly.

She needs to make an appointment with a neurologist, who will perform nerve condition studies as well as a couple of other tests. If there are any irregularities indicated by these test, there are more tests to be conducted after that, if those are irregular also, then more test again, etc.

I can't stress enough the fact that almost all tests that show up as irregular do not end up being ALS. There are many other things that can cause these irregularities, including Lyme, Benign Fascillation Syndrome (BFS) - which is constant muscle twitching, and is completelty harmless, just annoying.

Also something as simple as a tiny pinched nerve can mislead the test. That was the case for me; I had a pinched nerve in my elbow (which I didn't even feel and doesn't bother me at all) that set off the machine.

It is natural to think the worst when you are stricken with a strange illness like this. ALS is everyone's nightmare. My Lyme tests kept coming up negative, and I couldn't think of anything else it was (MS was ruled out very quickly. It is fairly easy to diagnose through testing such as MRI's,lumbar punctures where Cerebral Spinal Fluid- CSF- is tested, and other nerve studies. Lupus is also diagnosed relatively easilt as well.)

I was absolutely convinced I had ALS. Ther worst part was that I had to wait 4 weeks for my appointment with the neurologist, because he is one of the best and in high demand. The the test showed an irregularity and I had to come back for another test 2 weeks later.

Needless to say, that was absolutely the scariest and most stressful 6 weeks of my life. But in the end, it turned out it wasn't ALS, and I finally found an LLMD who then gave me a clinical diagnosis of Lyme which was supported by a positive Bowen test. I began treatment with IV Rocephin and immediately began feeling better.
Now don't get me wrong, Lyme is hellish enough, but relative to havong ALA its like a at at Disneyworld.

I really, really doubt she has ALS. Ther are a million other things it could be, none of them as bad. Just get her to a neuro, and you'll be able to put her mind at ease.

Let us know what happened, and good luck!

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D.C. Chris

Unfortunately, I recall reading on another forum that swissmoeka's aunt passed away.

Best wishes to you,

Sue
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http://neuro-mancer.mgh.harvard.edu/ubb/Forum3/HTML/004436-3.html

The post is toward the bottom of page 3 in the above thread.

Some people with late stage Lyme, told they have ALS, can be pulled back. It is too late for others, even though they get the best treatment now available. Lyme kills people too.

It is the best way to rule out or confirm whether or not it is lyme disease.

Lyme is a clinical dx by a lyme specialist.

It was thought that I might have ALS, or MS and other conditions.

I saw over 35 doctors in my search for answers. Only two of the doctor's I saw were lyme literate.

This included one teaching medical center in San Franscisco and a world reknowned medical clinic in Santa Barbara.

There was a doc in Santa Barbara that as he said "believed in lyme disease even though many docs do not." I had all ready been dx by a lyme specialist when I saw him and been tested with Igenex lab.

The neuro and ID in SAnta Barbara didn't beleive my symtpoms were lyme related and did more testing.

They were not lyme literate which is the case most of the time sadly.

It seems that the patients are learning about it and then if the doctor's are open to learning getting the information to them.

I'm also having some sucess on Ketek.

My LLMD has told me that it may take 6 months to clear the mycoplasma from my system.

The fluoroquinolones seem to be the best though.

Thanks for the info.

Editing this becaue I found in my piles of papers the info that a lyme doc whose name I will not post is apparently using the combo of doxy and zith with a proton pump inhibitor as a treatment for mycoplasma. Don't know the dosage.