First visit to LLMD

On Monday, 9/20, I had my first visit with LLMD Dr. M. The appointment lasted 2 1/2 hours. Dr. M took my history, gave me a physical exam, and reviewed my Lyme testing record and what I had already done in the way of treatment. She agreed with my GP's diagnosis and treatment of my Lyme and anaplasmosis, and told me that my failure to respond most likely means that I have one or more untreated coinfections. The two she thinks I have are Babesia and Bartonella. She wants to start the Bartonella first, then phase in the Babesia treatment after several weeks. Here is her plan until my next appointment on 10/25:

Minocycline
start first -- 2x daily with food (avoid calcium when taking pill -- reduces absorption)
***when you do this, discontinue doxycycline

one week later --
Azithromycin -- M-F only, once daily with food
Tinidazole -- weekends only, twice daily

She wants me to take Mepron for Babesia, but I have to check and see if it can be compounded without fructose (I have fructose malabsorption). It will be a few days till I can start the Minocycline since my compounding pharmacist had to special order it. I will post when I start it.

tests she ordered:
from LabCorp:

• Anti-DNAse B Strep Antibodies
• Lyme Ab, Total/IgM Responses
• Thyroid Peroxidase (TPO) Ab
• Antistreptolysin O Ab
• Lyme, Western Blot, Serum
• Celiac Disease Panel
• Antinuclear Antibodies
• B12 and Folate
• Rheumatoid Arthritis Factor
• Sed Rate, Westergren
• Vitamin D, 25-Hydroxy
• Anti-SSA
• Anti-SSB

from IgeneX:

• Babesia duncani IgG & IgM antibody
• Babesia FISH (fluorescent in-situ hybridization)

I still need to get these drawn -- their lab was running about an hour behind when I finished my appointment, so I decided to do the labs another day.

I liked Dr. M. It's the first time in a very long time that I have not felt like a minority patient. Dr. M told me several times that she had seen patients with my same health issues. There were no comments about how "complicated" a patient I am, which was so nice -- those always make me feel like the doctor would rather be doing anything else but taking care of me. She has a nice manner, too -- unhurried, straightforward, and with a sense of humor.

Two days later, I'm still coping with the fallout -- greatly increased pain and fatigue from the appointment, but also the hope she offered me that I might still be able to get better. That may sound strange -- I do want to get better, more than anything, but it has been so long, and I am so tired. Having this illness is like being trapped in amber -- it's hard to keep track of the passage of time, let alone envision a future in which things are different. So, I'm just focusing on existing for now. I think the hope will come naturally if I start responding to the treatment.