Apr 122007
 

I have visited with the first of the Lyme doctors. Overall it went well, and I liked him (and he came off as extremely flexible with treatment). He could feel that I have an inflamed liver and spleen. He also listened to my heart and I have a Mitral Valve prolapse (apparently there is a click after a beat that can be heard). He also looked at my eyes and noted that they looked a little inflamed, and the optic nerve looked a little fuzzy at one of the edges. No surprise since I have been having a problem with my distance vision. He also noted that I am having a reaction when pulling up on my toes that my foot quivers, but I can’t remember what he called that neurological reaction.

His treatment is to start with a month of Ceftin, and then proceed with IV Rosephin(?) if I’m not better. After looking up Ceftin and Rosephin they are both Cephalosporins. I am sure they can be effective against the spirochete, but I have concerns that they would mostly throw more of the Lyme into a cell-wall-deficient (CWD), L-Form, bacteria state (more on CWD form later). This would then be much harder to treat, and there are concerns that the CWD form of Lyme causes the most disability. Unfortunately, I did the antibiotic research after getting home so I was unable to ask this in the office. The other concern is that he is not necessarily a Lyme specialist, though he does treat a lot of Lyme. In fact he was incorrectly diagnosed with Multiple Sclerosis at one point, but, like me, has Lyme. A positive was that he immediately recognized the Bartonella rash, and suspects that I probably have other co-infections that would have to be treated. A negative was that I was left with the impression that he treats to get you symptom free (which is not necessarily Lyme free), and will treat again if/when symptoms occur.

Mar 302007
 

As much as I would prefer not to go to PA (as MDMHVONPA suggests) I now have two doctors appointments up there. It is certainly easier to find a Lyme doctor in tick country. Plus, going up there again will give the ticks an opportunity to get the other 4 members of the family. 😉 I have also found a local doctor, and maybe one in LA. All that is left is to wait for the appointments, and maybe think of a couple of more questions.

On a side note I got another email about Ambrotose. It even started “I saw that you welcomed some emails about the topic, so i thought I’d take you up on it.” I don’t know where she got that impression since I’ve gone to the effort of disabling comments on most of the Ambrotose posts. I am at least glad that the sales-pitch was re-engineered to address Lyme: “However, scientifically there is a ton of evidence that points to cellular issues as being the starting block of most diseases. From Cancer to Lyme, and nearly everything in between what happens is a breakdown in cellular communication.” They must really train them well that they have an expert knowledge in Lyme, Multiple Sclerosis, etc. I guess I will have to get some additional specifics about how it helps restore “cellular communication” to cure Lyme. Personally, I am waiting for the Mannatech Fountain of Youth Juice®.

 

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.