I'm in my 7th week of treating with an LLMD in my state. I live in R.I. I'm seriously considering changing LLMDs. I know it's early in my treatment, maybe too early to see or feel any improvements? I still don't know.
I went undiagnosed and misdiagnosed for many years. AT least 12 or 13 that I know of, possibly more. I also don't know if I got infected again the last few years. It's definitely possible. Up until the past year my symptoms were mostly pain with some occasional brain fog and memory issues. I chalked it up to other variables and was told for years I had fibro and fibro fog.
Anyway, I feel like my case is pretty severe. VERY severe brain, heart palps (severe) , eye and ear issues, plus disgestion, shooting pains, etc.
I have been seeing one of the only actual LLMD in Rhode island who has been treating me but I'm starting to think that he won't be able to help. I'm just not sure he is the best option for my particular case. He spends very little time with all of this patients and doesn't listen much although I believe he does mean well. Perhaps someone else here knows who I am talking about and can share their experience with me?
I'm starting to look for other docs. There is the Lyme Care center of NE here that is supposed to be pretty good but my appt is not until June. Which is probably just as well because it will probably take me that long to save up the money I'll need for the appt. My current llmd actually accepts insurance so I've been lucky in that respect.
Does anyone know of any other good Lyme docs in maybe Mass or Ct? I mean, not just a list of them which I've seen before but I'd be interested in hearing from people who have actually treated with them and improved.
My cognitive functioning seems to get worse lately. Although on certain days like yesterday, they seem to clear up a little for somewhat brief periods. Could be too early or am I not taking the right meds? How do I know? I just feel like this llmd will not be able to help.
I have no help whatsoever to try to figure out what to do here or where to go. I can't even drive anymore and I can't support myself. But if I can get an appt with another doc somewhere else maybe it would be worth the wait? Or has anyone else here been to the Lyme center of NE? Maybe my best bet is to try to wait for that appt in June and keep treating in the meantime with my current doc and herbals? Or can someone recommend another doc in the surrounding states that may be able to help? Also, if any I'm currently taking Doxy, omnicef, japanese knotweed, teasel, cat's claw, pinella/burbur and just recently added Jernigans Antitox. I'm trying to get through Healing Lyme for more herbs to add for nuero lyme but it's taking me a while to do so with all this. So far I don't notice any difference in my symptoms besides the recent lighting up a little of some. I'm adding the herbs slowly.
Anyone have any suggestions? Help? Names? I'm feeling at the end of my rope here and I really don't know what the right thing to do is at this point. Maybe the fear of all my symptoms is getting to me as well. I just don't know anymore.
I really appreciate this forum. Thanks in advance.