Disclaimer: If you or a loved one has Lyme, be warned, the research seems quite depressing. Don’t read this if you are overly emotional, experiencing Lyme brain, Lyme rage or confusion. Do not read if you are currently engaged in any conflict with your insurance company, doctor or family members over the reality and/or treatment of Chronic Lyme. Is there anybody left? 🙂
Gary and I were at our Lyme doctor’s last week. Gary is still just as sick as he has been for the last year (s). I seem to have hit a plateau, no better or worse, minus the typical Lyme flares, in the past several months. Since I was first (Gary and I like to take turns who gets to sit up on the Exam table first at each appointment hehe), I showed my LLMD (“Lyme Literate Medical Doctor”, since after my disclaimer it is likely that there are only non-Lymies reading this!) my Symptom Chart, expressed my frustration at not getting any better, and wondered if it was time for me to come off all of my antibiotics and see what happens after that. Who knows, maybe this is just the way I am going to feel every day?
After checking over my chart, my latest blood work and then after proclaiming my Lymph Nodes “massive,” my LLMD tells me that coming off abx is not an option. She seemed to debate with herself for a moment, then decided to tell us about a conference she attended in May. It was the 2010 Lyme Disease Symposium at the University of New Haven. The topics were “The Challenges of Lyme Disease: Emerging Research and Pediatric Care.” Anything with the words “challenges and “Lyme Disease” in it starts out sounding depressing and overwhelming. As she discussed the conference and the research, it became even more so.
Since I will never be able to interpret all of the research and facts given to us at our appointment, here is a link to a summary of the conference, posted on the NeuroEndocrineImmune (NEI) Center website.
Basically, the research is showing that the Lyme bacteria are much more complex than it was first thought, even by LLMD’s. Due to its ability to adapt to the host and to create a protective biofilm, many of the recognized abx that are used to treat Lyme may actually create even more bacteria in a cyst form. Penicillin and Doxy both increased the number of the round(cyst) form of the Borellia bacteria. However, when used in combination with Flagyl or Tinidazole, Doxy shows a more effective treatment and reduction of both forms of the bacteria.
So this sounds pretty promising that there is a combination of medications that might actually HELP!
Eh- don’t get so excited unless you have a really, really good prescription plan or are wealthy enough that $500/month for a Rx doesn’t hurt your financials. Sadly, Gary and I don’t fall into either category. Neither Medicare nor Healthnet covered Tinidazole. If we could pay out-of-pocket, it would be $450-$500 a month for each of us. That was a big bummer.
So after all of that, Gary is staying on his combination of Biaxin, Minocycline and Flagyl, which he hates because of the very nasty side effects. I am sticking with Minocycline and Doxy. We’ll have to see when and if our insurance companies cover Tinidazole, and go from there.
To end on a positive note, I am very happy that there is such excellent and informative research being done. If not for the people who are leading this field, we Lymies would be much worse off.