Four years ago I went through the Lyme vs. MS diagnosis and now I'm going through it again.

Back in '01 I discovered a red ring on my arm. I thought it may be Lyme but I wasn't sure and never had it checked with my doctor.

Several weeks later the left side of my face went numb. I had the Lyme test (ELISA) which came back negative. I had an MRI which showed a couple of spots which the report said could possibly be due to MS or Lyme.

I had several tests for MS including the visual and sensory evoked tests (these came back normal). I had a lumbar puncture and it show some elevated protein but it was not specific. At that time the neuro wasn't convinced I had MS so he ordered another MRI in 6 months. The second MRI was pretty much the same as the first but he decided to be on the safe side that I should be treated for MS.

I did not feel comfortable with this so I has a western blot done through IGENEX and it came back positive (CDC positive). I went to an LLMD and took antibiotics for a few months. I have felt fine up until now.

3 weeks ago I woke up and had double vision, dizziness and nausea. I went to my doctor who sent me to my opthamologist. He said I had a palsy of my 3rd optic nerve and ordered an MRI.

I had the MRI and went to a neurologist 2 days later. He said the old spots are gone but now I have new and larger spots (although none in the optic area).

I mentioned to him that I had tested positive for Lyme with my first symptom back in '01 and he said that Lyme could affect one eye but not both eyes like this. He decided right there that I have MS and wants me to come back in August and start taking one of the MS drugs.

I asked again about the Lyme and he was starting to question whether I ever had Lyme. He said "maybe you did have Lyme and maybe you didn't but now you have MS". He is considering my first symptom with the facial numbness as an MS symptom now and said the double vision is my second event so I think he feels he can really justify this diagnosis.

I can't believe I'm going through this again! I have felt fine since the first symptom. The only issue I have had was a case of episcleritis in my left eye. This came and went several times for over a year. I used eye drops with a mild steroid to treat it. Could this be Lyme related?

I guess I'm asking for any help and support. I have an appt. with the same LLMD but I don't know how he would be able to differentiate between Lyme and MS at this point.

Are there any specific ways to tell the difference between the two? I haven't dealt with this much in the past few years so I don't know if much has changed with the diagnostic process.

Thank you for any advice. I'm at the point of just giving up and accepting the MS diagnosis since I know it may be tough to deal with anyone that really understands Lyme and how it could look like MS. Maybe I really do have MS, I don't know. I'm really concerned about taking the drugs plus they want me to take steroids when I first start the drugs. I just don't want to get sicker.

My vision is improving alot (since no spots showed up in the optic area on the MRI the neuro said he considered this a "mild event"). Maybe for him, but I was pretty traumatized.

Anyway, thanks for reading. I live in MA. It sounds like there are LL doctors in CT that may be more familiar with this type of situation? If so, I'd appreciate the feedback.

I have not been tested for MS but can tell you my Lyme test and coinfections test were all positive through IgeneX.

It sounds like this doctor is not that familiar with Lyme and coinfections despite the fact you are in a highly recognized endemic area...

Try to get to Dr. P in CT - He has actually documented a lot of his work with so called MS patients that when treated for Lyme recover...pointing to the fact that it was Lyme all the time.

I wouldn't worry one more bit about the MS idea until I saw Dr. P.

Take care...

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"If I can stop one/Heart from breaking/I shall not live in vain/If I can ease one Life the Aching/Or cool one Pain/Or help one fainting Robin/Unto his Nest again/I Shall not live in Vain." Emily Dickinson

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Originally posted by Linny:
I mentioned to him that I had tested positive for Lyme with my first symptom back in '01 and he said that Lyme could affect one eye but not both eyes like this.

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That's inaccurate. Lyme can cause bilateral symptoms.

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Are there any specific ways to tell the difference between the two?

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No. There is no symptom of MS that Lyme cannot cause, not even demyelination. Odds are good that someday MS will be proven to be caused by borrelia infection, or at least by spirochetes.

Until we have better Lyme tests the theory that MS may equal Lyme cannot be proven beyond a reasonable doubt, which is why LLMDs are reluctant to talk about the connection publicly. However, if you have tested positive for Lyme in the past, you are much safer assuming that your problem is a continuing Lyme infection. The offices of LLMDs are filled with patients who were diagnosed with MS, and many of those patients *do* improve with long-term antibiotic treatment. Steroids are about the worst thing someone with Lyme can do.

I mentioned to him that I had tested positive for Lyme with my first symptom back in '01 and he said that Lyme could affect one eye but not both eyes like this

I can't follow the logic there.

If your appt with your LLMD is not very soon(tomorrow) maybe your GP would order Lyme tests and prescribe abx while waiting on test results and your LLMD appt.

see http://www.healthextenders.com

I think he has moved his office from the location listed in the web site but the web site is still active and you should be able to find him through a phone call or two.

Dr A K saw my husband who has Parkinsonian tremors/myoclonus and he explained much more to us from copies of the MRI films than was in the actual reports. My husband does have Lyme disease.

Dr A K prescribed two months of IV Rocephin.

He is one of a few doctors who prescribe IVIGg but my husband didn't fit the profile of patients he felt would benefit from this treatment.

Previously this doctor has been difficult to reach for phone questions, but he may have a larger staff in his new office.

Hope you can get some answers.

nancy

I'd vote for Lyme also. Your Lyme treatment, for one, didn't sound awfully aggressive. "A few months" of ABX may not have fixed you up.

About your lesions: Were they typical lesions of MS? I have them, and mine were more typical for Lyme. (They can tell a lot by where they are.)

You didn't have oligoclonal banding in your lumbar puncture; even though Lyme & MS can both have it, the absence of it is promising that you don't have MS.

Your normal evoked potentials are promising that you don't have MS.

Remember, ABX will not hurt or deter MS treatment, whereas ms treatment WILL hurt Lyme disease.

I would head back to my LLMD and get some good Igenex testing and see where my 'keets are at. Chances are they're back. Hit 'em with some heavy duty IV meds and I hope that will turn things around for you.

Keep us posted...

Michelle M

PS The double vision thing is really common in Lyme.. You would not believe some of the things I see!!!

Please get off.

I'm sure any of the doctors recommended will be a vast improvement.

There is no test than can distinguish between the 2. Probably because they are both probably caused by bacteria.

I will be seeing my LLMD and also a neuro-opthamologist who is supposed to be one of the best in the country. I'll be curious to see what he says abou Lyme and how it affects the eyes.

Since it sounds like Lyme can include both eyes and cause double vision why couldn't this be from Lyme again? The neuro started asking me questions regarding whether I worked around chemicals so he was not just considering MS until he noticed that both eyes were affected.

Since it is difficult to distinguish between spots on the MRI from MS or Lyme why couldn't this be from Lyme?

I'm not thrilled about taking the MS drugs. The neuro said they really only help about 30% of people with MS and this study was done on people with more severe MS and not the milder forms so there is not alot of information to go on.

I said to him that it sounds like taking these drugs is just a big gamble and he agreed. I know it's the best that is available right now but until I totally rule out the possibility of Lyme I will check everything out.

If you take steroids and you have Lyme, you will be in VERY big trouble.

If you take abx for Lyme, it will not make "MS" [ IF you have it] any worse.

Which would you choose?

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oops!
Lymetutu