Apr 122007
 

It has been a while since I have updated the list of symptoms that I have been battling with so here are the recent problems:

  • Blurry Vision (more near sighted, and worse in the morning). This has actually plagued me since the last round of Solu-Medrol. I am assuming that the Solu-Medrol immune suppression is what impacted my eyes. Alternatively, it is possible that an elevated 1,25-D (special Vitamin D) is causing the problem; I’ll have to write on that later.
  • Foot Pain (the second of the big two). Fortunately this recently went away. For a while it was just my right foot (peaked at level 6/10 pain), and more of a tendon pain. It briefly went to both feet being pain in the soles (peaked at level 1-2/10 pain), but only lasted a couple of days.
  • Tremor. Has been doing better, but noticed it was a little worse when typing this.
  • Etc. There have been a number of smaller things come and go too.
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.