LymeNet Flash: HELP!! I'm a newbie!

This is topic HELP!! I'm a newbie! in forum General Support at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/3/10384

Posted by aka400x (Member # 5841) on :

I have had MS for 16 years. Or what I thought was MS. I'm so apprehensive about all this. I've done 16 years worth of research on MS and now I feel like I'm starting from square one. I saw an LLMD who gave me a blood test which showed positive antibodies for lyme. The prospect of getting better is exciting, but I'm reluctant to hang my hat on anything. I've done that so many times before--only to be disappointed. Currently, I am wheelchair bound.

I'm starting on abx treatment (Amoxicillin) and I'm wondering if I can take pro-biotics at the same time as the abx.

Posted by Lenny777 (Member # 5452) on :

If you do a search on this board with the subject MS and Lyme there is some interesting stuff you should read up on. http://flash.lymenet.org/scripts/search.cgi?action=intro&default=1
I know a lot of the people here were wrongly diagnosed with MS. So I wouldn't tell my MS doctor to go jump in a lake but I would definitely keep my mind open...especially with the positive lyme test. There is the possibility you have both, but also just lyme. My best friends mom has had MS for almost 30 years and she's been bitten by ticks before. I'm trying to get them to give her a lyme test but they don't see the use.

You need to take the probiotics at least 2 hours away from your Amoxicillin. The further the better. The abx will kill the pro-abx.

Posted by firsttwin (Member # 5529) on :

aka400x

Hello there. I am also confused as to if I have MS or not. I had gone to a LLMD and he tested me and I tested 9 out of ten either positive or equivocal that the CDC requires you to have in order to acknowledge it as a Lyme case. The sad thing is that I only tested 3 out of the 10 positive and I needed to have at least 5 positive.

As I had a friend tell me "You can be a little pregnant".

It is ridiculous, positive is positive. I am taking meds for the Lyme.

What are your symptoms?

The MS doctor that I am seeing wants to say that I have MS because she is a MS specialist. The symptoms that I have could be MS or Lyme. I am so confused myself. One thing is for sure, I do have Lyme. I am afraid not to take the medicine for it. I was wondering the same thing that you are.

Good luck finding out what you need to know.

Take care.

Maria

Posted by Lishs mom (Member # 2344) on :

Hi there aka400x-
Best wishes...my good friend also had MS for years, before they knew he had lyme. He is/was wheelchair bound, and went through the Chico HBO, abx therapy and holistic care. He is able to be out of his wheelchair and walks short periods of time, but is improving.
He has had some major issues with leg muscle rigidity due to the many years in the wheel chair, and the spastic leg syndrome got worse before it got better. He took levaquin injections(? I think this is what he said) in the spine to calm that down I guess. (He was in the hospital during this treatment).
Hes doing much better now...happy and glad hes doing this. It is slow, and has been somewhat discouraging at times for him, but "better than a slow death in a wheelchair anyday" he told me.

Best wishes to a speedy recovery
Theresa

Posted by Lishs mom (Member # 2344) on :

quote:
Originally posted by firsttwin:
aka400x
Hello there. I am also confused as to if I have MS or not. I had gone to a LLMD and he tested me and I tested 9 out of ten either positive or equivocal that the CDC requires you to have in order to acknowledge it as a Lyme case. The sad thing is that I only tested 3 out of the 10 positive and I needed to have at least 5 positive.

Maria

Maria and others, in a document put out by the CDC, the testing of bands is for the purpose of identifying specific strain of illness. As any surveillance test, they must make sure not to include other things, so they can miss cases, but not include other causes.
The test for lyme is a CDC SURVEILLANCE test. It may be used as a laboratory back up test for clinical evaluation of lyme disease, in which case, lyme specific bands indicate infection or exposure.
The Oregon lyme disease network has put out a page http://www.junipermeadow.com/lyme/services.htm and if you go to near the bottom, there is a letter from the CDC on lyme disease regarding testing.
Please dont confuse a negative surveillance test for a negative lyme disease test. If you have any of bands 23-25, 31,34 (and never took the vaccine), 66 on the IGM, then you definately have lyme. (assuming that you are clinically ill as well, but if you took the test I assume its because you were ill).

Posted by Lovey (Member # 6) on :

Hi, quinine is good for leg cramps. If you are NOT diabetic, try drinking Tonic Water with Quinine instead of just plain water. Tonic water contains sugar, (unless you buy the diet kind but it tastes awful!) so watch your bloodsugar levels.

Dr. Ted likes to add a touch of gin in his tonic water! ha. Shoot! I get drunk just on the sugar in the tonic water!

Lovey

Posted by on :