Mar 192007

As promised here are my impressions of the Lyme. The Lyme does explain some very weird problems that I have had, and the Multiple Sclerosis designation could not explain. I would have gotten infected with Lyme in late 2001 during a visit to New Jersey/Pennsylvania (almost 3 years before my diagnosis with Multiple Sclerosis). I do not remember a tick bite, and I certainly did not get the Erythema migrans (bulls-eye) rash. A few months later, early 2002, I began a couple month period of daily vomiting, extreme fatigue, and fever. I went to the doctor, and tests were run (I’m sure not for Lyme, not that it would have showed anything), but the diagnosis was that I have an infection, and it will just have to run it’s course. That period of illness was 2nd stage Lyme, and I perfectly fit the pattern. Eventually all symptoms went away, and we just assumed that the doctor was correct about the illness passing. Six months later I did have some problems with my feet with both pain in the soles as well as numbness. I blamed it on some new inserts that I was using for my flat feet (even though we were told it would not cause that problem). I then went dormant again for a about a year until “the beginning of Multiple Sclerosis.” Other unique symptoms that cannot be explained well by Multiple Sclerosis (excluding the Bartonella Rash) is that periodically I will have serious joint pain at the knees and ankles. Technically the Lyme does not rule out Multiple Sclerosis (though one could say it is just Multiple Sclerosis with a known cause since I have suffered the brain lesions). I personally suspect it is just the Lyme because the MS has already been very mild, and to have two neurodegenerative diseases that are this mild when combined has to be pretty unlikely.

I cannot say I am super excited about a diagnosis of Lyme. Eriksgirl is more optimistic that I can be cured, and be done with all of this. I was content with the Multiple Sclerosis, and the routine that I had gotten into; both with the treatments and understanding the disease. Now I am thrown into something that I do not understand all that well. Furthermore, I am having a difficult time finding a doctor that is skilled in treating Lyme, especially now that I have long entered chronic/3rd stage Lyme (and all those doses of Solu-medrol only made things worse). On the positive side I am doing really well (especially considering the MS treatments would have been making the Lyme much worse); so I am hopeful that if not cured than I can be almost cured. Treatment will probably involve high-dose IV antibiotics for probably ~4 months. After that I will probably be on lower-dose oral antibiotics for many more months. All that is left is that I need a doctor that knows Lyme (LLMD – Lyme Literate MD), preferably in Dallas, and can begin the treatment I need.

  5 Responses to “Lyme in Me”

  1. I remember the EM rash but am on the verge of a MS diagnosis.

    MS, Lyme, Lupus… no matter what the diagnosis they all suck.

    Wishing you luck on your new path new wellness!

  2. Julie,
    I agree all the diagnoses suck. On the other hand if you had the EM rash than you have Lyme (unless you were treated). Of course this does not mean that you don’t have Multiple Sclerosis, I personally would just be very suspicious of an MS diagnosis since you almost certainly have Lyme. You do not want to treat a Lyme infection with MS drugs since they will make it worse (suppress the immune system, etc.). Just my $.02

    Also, here is an article from Dr. Goldings on neurological Lyme (though it doesn’t perfectly fit my case, and it can be a little hard to read).

  3. wow,what a journey. i hope it all shakes out to something both understandable and treatable. them dang ticks are pesky critters!

  4. Hrmmm … tin gods. The synergistic symptoms of immune diseases can easily cause misdiagnoses from even the best doctors with noble intentions. Come to PA … we have more experience with this.

  5. I had a bartonella infection, gotten from my positive cats. For them its easy treatment, but for me it was horrible. And it took me a couple of month to finally find a doctor that was willing to just do a blood test and send it off. It is sooo difficult to get some of these people to be open to something other that requires other medication than tylenol or motrin.

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