Hi madisongrrl. Glad to see you had some improvement, although we all know it is a long road.
Do you pay all your IV antibiotics yourself? No insurance will cover it?
I too think I need to see a Lyme literate doctor here in France. There seems to have less than in the US.
In my case, as I was treated 2 times with antibiotics (3 weeks amox, 3 weeks doxy) early after my infection, I really don't know if I have persistent infection. I think that the infection triggered the auto immune reaction, and so I think I would benefit fro IVIG. But it seems like it is hard to get.

I hate feeling that I have to wait to worsen to have a better treatment.

It is very great to see that some people have healed. I had no clue about HBOT and had to search. Looks like an interesting alternative treatment, but I have no idea how I could have access to that ! Do you plan to try?
Wishing you the best

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!

Sent you a private message!

Nico,

I hope this question is not too invasive, but I feel it is relevant. Did you have any sexual contact during the month before the appearance of the rash on your leg? Also, where on your leg was the rash (thigh, lower leg, groin, etc.)?

I have similar symptoms to yours that started after a herpes virus infection. Herpes viruses are neurotropic and can cause lots of neurological issues, though the medical establishment doesn't fully recognize them. I'm a member of a group on a different forum of people with neuropathy/neuralgia as a result of herpes infections.

HBOT question
 

Madisongrrl, I'd love to know whether the Mild HBOT was with oxygen, or just the mild chamber by itself. I'm only just now entering the wilds of peripheral neuropathy, and it is totally freaking me out. But mild HBOT might be an option for me. I hope you are still around and might be able to answer this. (I tried to private message you and it seems I can't)

So, how are you progressing now?

So it's been 6 months of these symptoms me..started back in January acute onset full body buzzing/tingling which than turned into a deep itch and than the prickly/stinging tingling in the hands I also get a loss of sensation in my hands at times...i think mine is immune induced I can't think of anything else all investigation have come back normal apart from elevated inmflamtory marker which the doctors are not taking seriously i will be going for a skin biopsy soon after aggressively insisting on it.Im 30 no other medical condition family background all clear of any unusual diseases...Can immune induced neuropathy get better?so many variants of this no1 knows the definite outcome

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I also get the body wide twitching I can see the twitching sometimes if I'm wearing a t shirt...ive read alot of stories of people's onset and most people who have had a acute onset have had full body burning or if it's immune induced it quickly affects all ther body..i think I must have felt the burning 2,3 times in 6 months which didn't last long and when my anxitey is high..and also I didn't get full body pain..i do get sensations come and go in different parts of my body the only thing that really bothers me still is my hands...most people with PN/SFN again complain of feet problems but even after 6 months i can run jog walk play sports(when im in the mood)without any issues...BUT I'm still scared of progression I don't know what to expect...i will find out for sure if I have SFN soon

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I have numbness in my feet an I can still do everything including playing Tennis(bad backhand that I can't blame on PN...lol). The twitching so far is interesting, but really does not last long or slow me down.

Could you please tell me more about the background of the patient you know who benefitted from HBOT? Did they have small fiber neuropathy? Besides the full body burning, what else were their symptoms? What all had they tried before trying HBOT?