I've definitely had improvements, but I'm not really close to being normal, I'm afraid. My face has been badly damaged with neuropathy and doesn't sweat. I still get a healthy amount of burning all over my body, especially when a flair kicks up. My arms and face feel like someone took a steel wool to them; it's a symptom that has never lessened.

I also have atypical face pain (TN2) that extends from my throat to my ear and causes a balance disorder. I saw a PT who does both neurology and vestibular disorders, who looked at all my medical records and wants to send me to an autonomic cardiologist for a beta blocker. I declined on pursuing that.

Sometimes I get very upset with myself for not acting faster with looking into Lyme disease. Maybe some of these symptoms would have reversed. But I always try to be grateful for my improvements....and remember back to the first 6 months of this awful, painful monster. Things could be worse. I'm lucky that I'm able to work and not everyone who has this condition can. My dysautonomia symptoms are stable due to light pool exercise and antibiotics. I also have to credit my nerve medications for masking my pain and my awesome boss who pretty much lets me work at home as much as I want. And I don't have to do much client facing, which can be draining.

My case was substantial enough insurance did cover my IV antibiotics, but insurance became a pain and a danger to deal with. They can just up and decide to reject your antibiotics claim at their whim, which they did for my second month of treatment....this was after their representatives told me that I was covered. For instance, the pharmacy jacks the price and attempts to bill the insurance $4000 per week for something that costs $175 a week. Ridiculous!

So after 2 months, I'm now going out of pocket. The price ranges from $175 - 225 per week. My friend is a nurse and does my bandage changes for free. I have to do weekly labs (CBC & CMP), but they are free for me because of who my employer is. Many people who have Lyme are bedridden and unemployed. I don't know how they afford this. Even when I let insurance cover my antibotics, the price was still $175 per week.

The length of the antibiotics that you received likely didn't even touch the infection. Plus you need more than one antibiotic at a time. Some LLMDs will do up to 3 at a time, depending on their pulsing schedule. This is to address the different forms of Lyme, which I think we've seen in both test tube and animal models.

Don't wait too long to find an LLMD. I think there might be some in Germany as well. You might even consider coming to the United States if you can afford it. Sometimes LLMDs will require you to be there in person for that first appointment but might give you the option of doing all the follow-ups over the phone. Dr. J in Washington DC operates this way. People come from all over the world to get treated by him and do their follow-ups via phone.

It's great to hear stories like this. We need to hear stories like this. I had some understanding about HBOT, but I've been researching it more since corresponding with people that it helped. I'm thinking mild HBOT might be something to try for 2018. I'll trial it out at an HBOT facility first, and then if I think it could help, I'd buy a home unit. Because it only seems to help people who do it consistently and frequently. Due to the price and convenience, you really need to buy a home model to make it reasonable.

Dr. J (a different one from Maryland, US) has had success with HBOT in his Lyme practice. Here are a few links, if you are interested:

LymeMD: Hyperbaric update

LymeMD: Immune hyperstimulation, Lyme disease, lymphoma, hyperbaric oxygen therapy (this post has an identity crisis)

LymeMD: More about HBOT

LymeMD: Lyme, POTS, Mast cell activation syndrome: a constellation.

Good luck and please keep us updated!