Hi, hopesprings. So sorry to hear that you are dealing with all of this. Unfortunately I don't have any knowledge of providers in your geographic area, but because you know the acronym "LLMD" I can tell that you must know how important it is to see someone with Lyme expertise. The general recommendation is to search online or try ILADS, which I imagine you've already tried. I too have had trouble finding providers I trust; I have seen 28 different doctors in 2016 alone, some of whom literally threw up their hands and told me to go elsewhere when I mentioned that I suspected Lyme (prior to my serological diagnosis in August). Sadly it's possible that there may not be many great providers near you, and you might need to travel or pay entirely out-of-pocket for treatment with a functional medicine doctor. I see a functional medicine doc, and I often struggle to pay the fees for all the testing and supplements that my insurance doesn't cover. They way I handle feeling "nickel-and-dimed" is by asking my doctor to convince me why a particular test or supplement is necessary, what alternatives might be, and making it clear that I am in charge. It's horribly frustrating to feel like one has to be such a fierce advocate when dealing with someone who is supposed to help!
I definitely identify with your frustration and feeling overwhelmed after such a long time of being debilitated; I think a lot of us with Lyme share similar experiences. I would love to say that you should keep looking until you find a provider that you trust and can afford (if that's an issue for you), but I know that's not always an option for people. Instead, maybe start with things you can control: cut out all of the inflammatory and processed foods you can, eliminate toxins from your household products, hydrate, detoxify with plenty of magnesium in your diet as well as daily Epsom salt baths, stretch and meditate. Keep your mediocre doctor and offer them research you've done about different protocols used to treat Lyme and see what they're open to having you try (ozone, rife, Buhner protocol, Cowden protocol, Marshall protocol, infrared sauna, bionic photon therapy, IV immunoglobulin, antibiotic herbs, etc.). Many people have plowed their way through Lyme with non-pharmaceutical medicine, such as herbs and nutraceuticals. I found ashwagandha and cat's claw very helpful, though of course everyone should research herbs thoroughly before starting them - they're no joke! And of course beware of any doctor or online system that claims to know The Way to beat Lyme! There's no one path that works for everyone, as everyone has different bodies, sensitivities, and co-infections. Lyme presents differently for everyone, so be prepared to try multiple things and get very good at patience. All the very best to you!

Thank you for getting back to me. I really appreciate your kind words and advice. Especially regarding the cat's claw- I've been hearing a lot about that herb in particular lately and how it can help with Lyme. Another one to try! Thanks again.

My doctor is very nice and reachable and you can make an online appointment with him. His name is Dr.Martin Ross and he helps you if you choose allopathic treatment or natural treatment.
He has a site with lots of information about lyme.

Now about confusion, overwhelm, isolation.. its all part of the package.
All I can say is it makes you a stronger person with time.
And I think we should talk to people who are going through the same situation.

Thank you, intuitionroad. I'll look him up. Yeah, I agree. It does strengthen you. I'm just trying to not feel so dark about it all in the meantime. You're right- talking to people who understand is like its own medicine sometimes. It's so hard for other people to get it. It seems like I'm making it up or overreacting or not realizing that Chronic Lyme "isn't real". But it is, obviously, and it drives me nuts that so many dr.s don't recognize that. Anyway, done with my vent. Thanks again. Be well.

You can vent here : ) no need to feel guilty, you are probably going through a lot.
Here is where we understand it.
You are not alone.

That means a ton right now. Thank you.

Don't worry.

Hello there. As we all know, lyme disease is an infectious disease that affects not only our physical health but also our mental health. But now, thanks to advanced science and technology, various treatments for lyme disease are emerging. So stay optimistic that in the near future, lyme disease will definitely be cured, put your mind at ease and actively cooperate with your doctor. I was a Lyme disease patient once, after few years, I found out a serial herb medicine which called DR ZHANG. They’ve been doing a medical study on Lyme disease by using herb medicine for a real long time. By using their medicine, my symptoms has been greatly relieved. And You can find helpful help on there website www.hepapro.com. Wish you get well early!