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Posted 3/3/2015 1:31 PM (GMT -5)
Hello,

I have a few questions about Lyme disease that i'm hoping someone might be able to shed some light on.

Back in August 2014 i had my first event ( Numbness in my right arm and complete loss of strength and fine motor control, which I gained back.) To make a long story short I went for a few MRIs. They found 2 white matter lesions in my brain. I took the ELISA test which came back as false positive and then tested negative on the Western blot. This past December I had a lumbar puncture and my CSF fluid tested positive for certain Oligoclonal bands (at which point my Neurologist made a Diagnosis of Multiple Sclerosis), however the lab over looked testing for Lyme even though my Doctor had ordered it. Having the lab simply overlook testing for something is a troubling enough. My neurologist says not to worry because he's pretty confident with his diagnosis. My thoughts are, this isn't somebodies coffee you're screwing up should in fact he be wrong. I will be starting treatment for MS in about 2 weeks and am quite concerned that we may be treating the wrong thing with out the process of eliminating everything else 100%. I explained my concerns to my GP and Neurologist. At the time of my lumber puncture at least my Neuro was proactive enough to make notes for the lab to save 2oz of my CSF fluid should we require any further testing in the future (fingers crossed they actually followed his orders and saved some.) Am i blowing this out of proportion? Is there any other tests that should be done? The last couple of months i have been focusing my research on MS, so please forgive my ignorance about Lyme . From what I have read, certain strains of the bacteria that causes Lyme doesn't always show up when they screen the blood.

Any suggestion would be greatly appreciated.

Thanks in advance.
Posted 3/3/2015 1:37 PM (GMT -5)
Hi Chris,

Don't let them tell you you had a "false positive"! Those are basically impossible with Lyme.

I don't think you're blowing this out of proportion, and you're right, the Lyme tests are pretty inaccurate. Check out our New to Lyme thread for more information. We recommend getting a Western Blot done via Igenex lab. http://igenex.com/Website/#
Posted 3/3/2015 2:19 PM (GMT -5)
Hi Chris - You might want to see a LLMD (Lyme Literate MD) to clinically diagnose whether or not you have Lyme disease. I wouldn't jump on the MS diagnosis yet...as there is not cure...

As far as Igenex testing - the 'best bang for your buck' is the Western Blot - IgM and IgG - it costs approx. $200. But, there are a lot of false negatives.

Good Luck!
Posted 3/3/2015 2:49 PM (GMT -5)
As someone who was looking at an MS diagnosis, but ended up with Lyme, I think you're right to be questioning this. My MS specialist poo-poo'd the idea that I might have Lyme, because I'd been tested 3 times before seeing her, and all were negative (including the Lyme test done on my CSF from my lumbar puncture). It wasn't until I got tested at Igenix that I tested positive. But since you've had a positive test, I would think getting tested through Igenix and seeing a LLMD would be your next step.

A quick Google query seems to suggest that it's possible to have positive O-bands in other diseases besides MS and one of those diseases is Lyme.

No one has the investment in our health that we do and we need to be our own best advocates. I'm glad I ultimately didn't listen to my MS Specialist (a Stanford one at that), because I would still be in limbo land.

Plus, the drugs for MS are SCARY! Some of them have side effects that can kill you, or make you go blind. If you might not have MS, I think it's important to find out, not only because of the side effects of the drugs, but because many of the MS drugs are immunosuppressants, which is not what you want when you're treating Lyme.

Good luck in finding your answers!
Posted 3/3/2015 4:33 PM (GMT -5)
have you been bitten by a tick before, or have been a tick infested area? Those MRI of the brain showing white spots is a possible indication of MS, Are you seeing an MS specialist, they usually can tell if you have ms or not. the symptoms of ms last for more than a day, but you will gain them back, have you looked at MS part of this site?
Posted 3/3/2015 5:06 PM (GMT -5)
Chris, do u have a copy of your tests results from western blot. If so, post the results here. If not, get on the phone and get a copy then post the results here. There can still be significant bands that show up that will mean u have lyme eventho the test result could be negative. This is what happened to me.

The current Lyme testing is not supposed to be used for diagnostic purposes (DID U EVER HEAR ANYTHING SO STUPID!) this is confirmed by the CDC itself.

And I absolutely don't think u are overthinking this !

BTW I also have lesions on my brains, had spinal tap and two neuros couldn't figure out what it was.
Posted 3/3/2015 7:32 PM (GMT -5)
Hi Guys,

Thanks for the replies.

I went to an MS clinic that specializes in MS and seen a Infectious Disease specialist that both concluded MS. HOWEVER, The MS clinic only looked at my MRI and in fact it was the Infectious Disease Doctor that originally pointed out that my CSF fluid wasn't checked for Lyme but felt confident that i didn't have it. This is where i make my frustrated face. I reside in Canada and from what i've been reading our testing for Lyme is behind the USA for testing methods. Springsjean, I'm going to see my GP on Thursday, I'll see if he has copies of the ELISA test.

In the mean time, is anyone familiar with any Lyme Disease specialists in Canada, more specifically Ontario?

thx
Posted 3/3/2015 7:52 PM (GMT -5)
Zasz,

I think i am fairly knowledgeable about MS..well a whole lot more than i was 8 months ago. Through this knowledge I've decided to start treatment with Copaxone in a few weeks time. My issue, and what worries me, is that MS is diagnosed by ruling out every other possibility. Sure my ELISA came back as a false positive, but why? Why not look down that avenue? Then someone dropped the ball on testing my CSF fluid for all the required tests that were supposed to be done. Then i have an infectious disease specialist who doesn't even administer any of his own. That replies with i DONT THINK you have Lyme, we don't live in area that is prone to Lyme Disease When i asked him some questions about complications from MS and treatments such as Auto Immune Suppressants and the JC virus, he just looked at me sideways and said i do too much reading. So these are the people, who i'm sure are very knowledgeable and practically experts in their field, but they are people and people make mistakes. This is the reason why i'm looking outside the box.
Posted 3/3/2015 8:02 PM (GMT -5)
Chris its your western blot u want a copy of. The western blot will have a series of bands will be marked.
Posted 3/3/2015 8:34 PM (GMT -5)
Hi Chris - I'm from BC, Canada. I had the Canadian lyme test done...two tiered - first one was the IFA and it was negative, so they wouldn't do the Western Blot.

There aren't any LLMD's in Canada. But, there are LLND's. I see a LLND in Richmond, BC, and he is licensed to prescribe antibiotics.

If you choose to fly to BC and see him, after the initial consult, he will do half hour phone or skype appointments for the next several months.

I believe there are LLND's in Ontario..but not licensed to prescribe abx. If you're interested in going the herbal route, that might be another option for you.
Posted 3/4/2015 12:49 PM (GMT -5)
Chris - my 'MS' was Cpn infection and Lyme. The two seem to be frequent co-infections. If you have not read this already, it might be worth you taking a look: www.davidwheldon.co.uk/ms-treatment.html

Post Edited (Celeste15) : 3/4/2015 10:53:30 AM (GMT-7)

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