Partners in Lyme: What Now?

Joel was able to see our LLMD yesterday. For the most part it was a positive appointment. Dr. V feels that Joel is having neurological reactions to the abx Tindemax. Time will tell, but he has been taken off the med. If neuro symptoms do not improve she will do an MRI. She did see some improvements in some of his neuro testing which she was very happy about. Once again she was firm in saying she believed Joel would RECOVER in the next year and the CFS would be gone too. Some other neuro symptoms he is having are worse ~ his restless legs, his balance, and jerking movements. Joel is extremely weak, and along with that the past 10 days his voice gets weak and soft. That is new. Dr. V also discovered that the pain Joel was feeling in the liver area is from a rib ~ the floating rib~ that is out of place and irritating the liver. That was good news since a chiropractor can fix that. He has had a massive amount of die off of bacteria and muscle testing shows around 75% of Joel's Lyme is dead and 65% of the Bartonella. It took me two years to have these results, so we are thinking he has had too much die off which has put his body in duress. Our NAET practitioner tested with the same results~ a alot of dead bugs!

This is where we must balance out the "first do no harm" and the "first regain health." I am strongly feeling he needs to take a break from the meds as much as he can without giving the Lyme room to multiply. Maybe if he takes a maintenance dose of one med and gives himself a good week off of others, we will be able to tell more what is going on. I believe more and more that we know our bodies better than anyone and when our bodies are talking loudly, we need to listen.

We are still waiting on disability, and Dr. V was clear that when Joel improves, she cannot say he is too disabled to work anymore so she wondered if he would then work part time and try to eliminate the commuting job. Easier said than done. There is a small part of me that believes she has NO CLUE how weak and sick Joel really is? That scares me. Therefore I am going to continue to research all the chronic Lyme material and see what I can come up with. I don't like what my gut is telling me about all this. Don't like it at all.

For now we are being hopeful and planning on Joel improving off of the Tindemax. Twenty-five years of history with doctors has me mostly trusting ours..mostly. We are taking one day at a time, and making "What now?" observations. I know that it takes determination, a village of people, and a library of information to heal Lyme. We are determined, we have help from doctors, practitioners, and other Lymies, and we are gathering as much info as possible.