Looking for opinions on treatment and llmd

My partner A was diagnosed with Lyme back in April, started treatment on doxy in early April. When she wasn't getting better we started looking around for other answers and found out that we needed an LLMD. We found one and started treatment 5 weeks ago but we're starting to have some concerns. We found them through ILADS so we thought it would be reputable.

Basically the doctor is beyond scattered. We're lucky to get responses within 4-7 business days typically, if at all. The treatment plan given to us was extremely disorganized, a combination of several protocols known to work but literally copy / pasted together. Some pages were scanned in and literally cut off. Other files were corrupted and took us 3 weeks of emailing to get the right files. Medications were missing to order, and others like Diflucan (which we thought she was going to prescribe) were on there and we were told that it wouldn't be a part of the treatment plan. A was supposed to start cholestyramine with stevia but we're literally still waiting on the prescription after 3 weeks and multiple requests.

Technically the protocol looks like exactly what we wanted to see. We're seeing many good things but the organization is very poor.

Currently A is experiencing a lot of hard symptoms. Extreme fatigue, difficulty with memory, brain fog, processing issues, lots of neuro symptoms - on the checklist given to us around 50% of them were checked off if not more. The depression and anxiety are particularly bad and the newest symptom she's facing is an extreme lack of appetite. Some days eating less than 800-900 calories. This is treatment week 5, where the first 3 weeks were supplements only and the last 2 included antibiotics. At first she seemed to be getting better, then worse, then better, now worse again. She has said several times now "I can tell when things are being killed in my body and it doesn't feel like that's happening with the antibiotics." - At first they seemed to help for a week, but now they just seem to be pausing action and not really killing anything. Every day lately has been a decline.

We're both very concerned that our doctor isn't taking this seriously enough. Time and time again we see how effective IV antibiotics can be for cases like these and we're wondering why the doctor felt this case doesn't call for it. She does do IV for patients she feels need it. I feel like we should already be getting another doctor (and we've taken some steps to get this moving) but A would love some support on this. Are we right in thinking the doctor's actions are negligent or are we just over thinking it? Are the protocols usually so hard to follow that even healthy people can't make sense of it? I have no clue how A is ever supposed to follow this, she struggles to get up to go to the bathroom, or remember to eat.

Any recommendations on next steps? We're looking in the NE for doctors or to see if anyone will travel to us here in the south. Honestly we're both just lost and hoping to find some answers. Everything seems wrong.

about A:
Age: 22
Antibiotics and medications: cefdinir, flagyl, azithromycin, naltrexone, ketotifen fumurate, birth control
Supplements: Takuna, Pinella / Burbur, Arteminisin Solo, Balance Oil, Trubifido Pro, Truflora, Enzalase,chlorella, vitamin D, Trufiber prebiotic, coconut oil, liposomal zen, lithium orotate, lactoferin

I agree with you that you should see another doctor. Although the doctor seems to know what to prescribe, it should also know that if something doesn't work, to try something else. You should also not have to hunt him down. He is working for you, not the other way around.

Hi dust, welcome to our community.

I understand why you're having second thoughts about the LLMD. If you're not comfortable, confident now...I think it's wise that you keep looking for a LLMD.

Not all LLMD's want to prescribe IV abx. I know that the very well known LLMD (Dr. J) only recommends IV abx for about 20% of his patients.

I don't know of any LLMD's who will travel to you, though.

BUT, Dr. J in Washington DC, he allows patients to do some phone appointments in between the in-person appts. And as time goes on, the appointments are about 3-4 months apart.
You might want to consider that option.

You can email me, if you would like more information. That is who I see.