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Lyme Disease
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Posted 10/28/2009 9:25 PM (GMT 0)
Hey,

Have any of you been told you have MS but found out later it was Lyme disease? I started with just a tingling and loss of sensation on my right side. My Nero did a MRI, LP,and envokement test, the MRI was the only test that was not normal. She cant give a definite diagnosis of MS but said it was very likely. I started reading about Lyme Disease and i think that is more likely, I have been exposed to many deer ticks. When i asked her about it she said the standard lyme test was done and it was negitive.

Posted 10/28/2009 10:50 PM (GMT 0)
Hi 1hunter,

If you have been exposed to ticks then it is very likely that you have Lyme Disease. Just because your test came back negative does not mean that you don't have Lyme. You need to find a Lyme Literate Medical Doctor(LLMD) and have them look at your results. They will evaluate which bands are positive and what your symptoms and history are. If you want, you can post your results here and we can help you decipher everything.

Here is some information that may help you:

Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker at:
[email protected] 

If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease. 

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The
ILADS site is a great place to read to get you started on your Lyme journey. 
www.ilads.org/

For great info and links, please read the topic at the top of the first page of this forum tittled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.
Posted 10/29/2009 2:48 AM (GMT 0)
I was diagnosed with MS, I had a very typical case. I had lesions on my brain and O bands in my spinal fluid. But I also tested positive for Lyme. After a year and half of fighting and traveling 3000 miles to se an LLMD I did get better with IV antibiotics 3 years ago.

I did just recently relapse after stopping oral antibiotics. Back to square one.

Posted 10/29/2009 7:43 PM (GMT 0)
The symptoms are SO similiar. I have been tested numerous times for MS and so far no definite diagnosis. Lyme tests are also considered "normal."  I think there are many people that most likely have both conditions and have yet to find a knowledgable doctor.  D

Posted 10/29/2009 9:09 PM (GMT 0)
hi, i was diagnosed with MS after 10 years of symptoms. Had borderline but negative western blot lyme tests here and there, now positive with Igenex. I have 4 brain lesions. My llmd said I still have MS, since I have the lesions, but maybe in my case I know what caused it(and hopefully what can treat it). I know that lyme can cause brain lesions and some refer to it as neuro-lyme instead of MS. Just reporting what my doc said.

Take care, Diana
Posted 10/29/2009 9:41 PM (GMT 0)
Thanks for the info. It seems that this link between MS and Lyme is fairly new. My Nero wont even order the Western Blot test, she said her elisa test catches 99% of Lyme cases?? I have heard very good things about Igenex, they do require a Dr's. order. I'm working on getting hooked up with a LLMD
Posted 10/29/2009 10:54 PM (GMT 0)
1hunter,

The ELISA test is less accurate than the WB. There is NO WAY that she is catching Lyme 99% of the time with an Elisa. The Western Blot is better but still not that accurate.
Posted 10/30/2009 4:24 AM (GMT 0)
1hunter, just an fyi, I agree w/ cajunGrl on this, and there is plenty of info out there regarding the inaccuracy of ALL lyme tests. AND, the Elisa is probably one of the LEAST accurate tests out there.

As far as Lyme vs MS, there is a lot of controversy. Many people w/ a diagnosis of MS actually have lyme. Also, it is as yet unknown, but because MS is often preceded (cause unknown) by a virus and/or infection, it is very possible that Lyme can actually cause or 'trigger' MS.

There are far too many unknowns for a Dr to rule out one or the other. It is way past time for our Drs to get with the program.
Posted 10/31/2009 3:35 PM (GMT 0)
That's my story- told it was MS, but I went to an LLMD and found out it was Lyme. I started with loss of sensativity on my left side. From my shoulder to my toes. I have four lesions on my brain and one on my spine. I also had the O-bands. From a neurologist's perspective, I had MS. Really, MS is a label for a disease for which the cause is unknown and there is no cure. That could be anything!

My LLMD says that I do not have MS. Good luck to you. Do your own research and educate yourself. You have to be responsible for you own health and can't always trust the opinion of a neuro.
Posted 11/8/2009 5:13 PM (GMT 0)
Thank you all for the information... I'm working on finding a good LLMD in my area!
Posted 11/8/2009 9:56 PM (GMT 0)
1 hunter,

I'd be interested, too, in finding out if a person can go to IgenX to order their own Western Blot test. My chiroprator refers people to me whom he thinks have Lyme so that we can share information. One of them recently told me she just went to IgenX and told them she wanted the test - no doctor's order at all. When the tests were completed, IgenX gave her the results. When I went to IgenX with my doctor's orders, I was told by the lab that I could only get the results from my doctor, not from the lab. Has anyone else been able to order their own test? I was planning to call IgenX to find out about this. My kids want to be tested and their funds are very limited, so it would be helpful to them if they could circumvent the initial doctor's appointment (especially since their hmo's don't include any LLMDs so there's no guarantee a regular doctor would even order the test).

Rose
Posted 11/8/2009 11:56 PM (GMT 0)
Hi Rose,

I emailed Igenex a few weeks ago and they told me that they require a Dr. to collect the blood and send it in? The nero i saw does not believe in all of this "lyme stuff" she did the elisa test and wont order any further testing. I could probably go through my family Dr. he would probably do it for me.  Let me know if you find out anything from Igenex.

Posted 11/9/2009 1:25 AM (GMT 0)
1hunter,

I'll let you know. I went to IgenX to get my blood drawn for the first test so I know they do blood draws. For a subsequent test, my LLMD did the blood draw and sent it to IgenX. What I really want to verify is whether they will do a Western Blot without a doctor's order.

It's a challenge when you run into a doctor who thinks Lyme and the Tooth Fairy are related. I had a negative (surprise) elisa test 5 years ago, ordered by a rheumatologist who then assured me that there was no way I could have Lyme. Boy have I learned a lot since then!

Good luck with your family doctor. That's how I finally got my Western Blot ordered.

Rose
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