I thank everyone for your supportive comments.
I’ve been reading and learning about Lyme for a few months now. I was terrified to learn about it at first, and seriously spent days hysterically crying, as I was so scared when I suspected Lyme. I want to make it clear that I do not wish this upon anyone. The drugs to treat MAV are so much easier, and believe it or not MUCH more straight forward. One just trials drug after drug. Lyme is so complicated, but I wouldn’t be writing this if I didn’t strongly believe that Lyme could be the culprit (in some people) of the constellation of symptoms that we define asMAV. Not saying the culprit for everyone. We are all different. At the beginning of trying to understand Lyme, I believed that if a MAV (preventive migraine) drug worked, then one definitely does not have Lyme. In my opinion, I no longer believe that. I do think some could have Lyme and a migraine drug is acting like a bandage for SOME, not everyone. And, furthermore, it doesn’t mean MAV doesn’t exist for a person with Lyme, but Lyme would be causing MAV symptoms. MAV is really just a name that was given to a constellation of certain symptoms. Don’t get me wrong, I would have given the world to have some relief through migraine drugs. I was hesitant at first to write about Lyme as I didn’t want to scare anyone, as I was so fearful. but, If i could even help one person, I knew I had to share. I would always want someone to do that for me. sorry I’m rambling. so hard to type and look at computer.
I have begun with an oral antibiotic. However, in time I will most likely have to add several more antibiotics or change to others to address coinfections, etc. IT is all so complicated and I feel grateful to have been seen by a doctor who has been ILADS trained for over 30 years. I am scared, though. I hope I have the strength to endure these treatments and likely getting worse before better as the antibiotics kill the bacteria. I might also end up switching to IV infusions. It will be a long, long, battle ahead. I also have to take supplements, etc., to prevent side effects from long-term ABX use.
Dolfnlvr - I am new to Lyme. you clearly know so much. But, I have already come across people that have been on amoxicillin for years with no progress, and they did end up getting better after amox failed. I know those that were on it for even 2 years with no progress, and got well when they ended up addressing coinfections. I think the proportion of people with coinfections who have lyme is in the majority if I am not mistaken (This is written in Dr. Burrascano’s protocol which I am attaching). I was also told that it is important to eventually take a cyst buster (e.g., Flagyl) along with an antibiotic such as Amoxicillin, as Amox is not a cyst buster, and it is crucial to kill the cysts that encase some of the bacteria. With your science background it’s likely you understand this WAY better than me, so excuse me if I’m not explaning this so well. But, I just wanted to share this. Dr. Burrascano also talks about the importance of addressing coinfections in his protocol. Here is his protocol. I believe it’s on page 22. lymenet.org/BurrGuide200810.pdf