Is this MS, Lyme, something else...can't get any answers.

[Klinktc79]

About 5 years ago, there were a couple of months during which I would feel intermittently lightheaded . It was annoying but only happened a few times, so I didn't worry. I then went for about 2 years until the same lightheadedness came back, this time along with frequent urination (no urgency, just felt like I needed to go alot more than normal), mild headaches, and fatigue. This time, it occurred much more often over the two-month period I was having symptoms. In Fall of '04, the aforementioned symptoms returned, with the addition of visual floaters, and an increase in the intensity of the fatigue. Once again, this lasted for 2-3 months. Finally, in the last few months, all of the symptoms have returned once again (with the exception of headaches), with one more addition: very light intermittent tingly / numbness in parts of my left foot. I also have trouble concentrating sometimes.

I have have been to my GP many times, a neurologist whose opinion it was that I had no neurological deficit, and a sleep specialist. I also have been to an ophthalmologist about the floaters, who said she couldn't see the floaters through the slit lamp. I have had every blood test known to man, a normal head MRI in Oct. '04 , and a normal sleep study. Their latest thing was a Lyme test, from which I have yet to hear results. I am from KY, so Lymeseems. Does this sound neurological? Perhaps MS? Does it sound consistent with Lyme? The sometimes cognitive symptoms scare me, as I am a lawyer, and I kind of need to be able to think. Any suggestions as to what I should do next?

Thanks

[johnflox]

Have you taken in the past years antibiotics like avelox, cipro, levaquin, floxin, tequin or similars?
All your symptoms match exactly to a delayed toxicity to those drugs, but many other disorders cause similar symptoms.

[LindaS]

Have youb all had your B12 level checked?  Make sure Dr. has done it and that is within normal range.

[Klinktc79]

One more thing...can cubital tunnel syndrome be caused by disorders such as MS?

Thanks

TK

[KrisKraft]

I know many people with Lyme with those symptoms.

You can see a comprehensive list of symptoms in peer-reviewed journal articles under "Symptoms and Characteristics (peer-reviewed literature)" on my website:
http://www.openeyepictures.com/underourskin/uos_resources.html

Which Lyme test did you take? If you just took the ELISA or IFA, you should know that that these tests miss about half of the positive cases.

Why is this? First, the FDA approved tests are based on one strain of the Lyme bacteria, even though hundreds of different strains have been documented. Second, this screening test is only 60% sensitive, when a reliable screening test should be 90% sensitive or above.

In my opinion, IGenex, which specializes in tick-borne diseases, is the only reliable Lyme lab, because they test for multiple Lyme strains, not just the B31 Shelter Island strain, and they report on the most specific Lyme markers, the 31kDa and 34kDA bands. IGenex has recently passed Cal., NY, and CDC quality testing with flying colors. You can download the IGenex testing forms from my website; give these to your MD if you want to use this lab. MDL isn't bad a bad lab either.
http://www.openeyepictures.com/underourskin/uos_resources.html

Fewer than half the people with Lyme ever see a tick bite or a rash. The longer you have Lyme, the harder it is to get rid of.

I would strongly urge you to run to a Lyme-experienced physician, which you can find by typing in your location to "Flash Discussions", then "Find a Physician" here:
http://www.lymenet.org/

And you can also enter your symptoms under the "Medical Questions" section, and you can see what other people with similar symptoms think.


KrisKraft
http://www.lymediseasefilm.com/

[KrisKraft]

I forgot to mention that most Lyme patients find MRIs to be worthless in diagnosis. SPECT scans are more useful because they show perfusion deficits, which are basically white matter areas of your brain not receiving good circulation because of the inflammatory processes going on when Lyme's munching way at your brain.

If you have a positive Lyme test, there's a great research trial going on with SPECT scans at Columbia, run by an excellent neuroLyme researcher, Dr. Brian Fallon.
http://www.columbia-lyme.org/flatp/resstud.html

There is very good neuroLyme symptom info on his site, too.

KrisKraft

[KrisKraft]

It's really good that your doc ordered both tests. The Western Blot is much more sensitive than the ELISA. But getting a proper interpretation is key, so you might want read and bring this document to your next appointment:
http://www.personalconsult.com/articles/drjonesapproach.html

Dr. Jones has treated over 7,000 Lyme patients, so he knows what he's doing. The important thing is to insist that you get ALL the individual positive and negative band readings from the Western Blot. Don't let them tell you simply Positive or Negative.

This is because all bands are not created equal. If you have one or two of the important bands, you probably have Lyme. The CDC and the IDSA will tell you that you have to have 2 bands for the IGM and 5 bands on the IGG, but that's Bull-Puckie. This is CDC Surveillance criteria, for measuring the spread of irrefutably positive cases across the country, not for diagnosis of real patients who might have corraborating symptoms. Lyme is a **clinical diagnosis**.

What's more, the Rheumatologist Steere came up with that 2 and 5 band criteria based on a German strain (Dressler standard) of Lyme bacteria, not an American strain. And to add insult to injury, it was a high passage strain (duped in the petri dish too many times) and he calculated the probability of having Lyme based on empirical data (calculations) rather than real patient data collected experimentally. The science behind this Dressler/CDC criteria was rushed IMHO, in order to help the Lyme vaccine clinical trials. And unfortunately, they still haven't fixed it. For example, there is ample data out that the 41kDA is a very important marker for Lyme in the middle and late stages, yet certain ID docs will say it's not important because it cross reactions with gingivitis. Well, if they opened a patient's mouth and looked at his/her gums, they could probably rule that out.

Ah, but I digress. I hope you get to the right diagnosis!

KrisKraft