I had Lyme diagnosed in the acute phase, back in 1994. Tick bite, EM rash, arthralgia, rising lyme titer. I was likely undertreated.

I now run a +ANA and am diagnosed with autoimmune problems, including small fiber neuropathy and dysautonomia due to the SFN.

I believe my first treatment of 20 days of amoxicillin was not adequate.

I was retreated years later with doxy, azith and amox, not concurrently, not for more than 6 months and at reasonable doses. I didn't see any difference in how I felt.

I was retreated again with doxy a few years ago, and again, felt no difference.

I don't plan on any more antibiotic treatment, and other than catching it in the active phase, I don't think this long term treatment really does much. I think the side effects of the antibiotics and the possibility that one can get C. Difficile from all this, isn't worth it.

If there is evidence of active infection, then it should be treated, but in later phases, I don't know of many cases really get better from prolonged antibiotic treatment. As to whether Lyme caused the autoimmune problem, the jury is out, and probably will be.

It sounds like we both have the same thing. You are right about the initial 20 day treatment you had. It probably wasnt enough.

Did you have a positive ANA during Lyme treatment earlier on??

The problem is finding good doctors. There is only one where I live who understands these issues and I have to pay out of pocket to see him.

Thanks for the replies.

The positive ANA came in 2006....well after the initial Lyme infection. I never did feel 'right' after having the Lyme, but I was not incapacitated. Now, I am a LOT more limited.

I was living in Midwest, forested, sand country....in an endemic area for Lyme. A black spot on those incidence maps..... Most doctors here treat Lyme with either oral doxy or if you have really bad symptoms, or are privleged, you get IV. Once for 8 weeks. We have NO doctors in the Midwest that treat ongoing with antibiotics....unless they say you have something else.

I don't know what the circumstances are in your Lyme case, but 11 years on antibiotics is a long time.

I suggest net searching Dysatuonomia and Autonomic Neuropathy....see if those symptoms are similar to what you are experiencing.

Hi Lisabeth,

I have/had small fibre with autonomic involvment. Primarily cardiac. I have labile BP,anxiety,and also heart palps. It lasted almost 4 years. The more I focused on it the worse the symptoms were. Like Glen said it was subclinical and never really showed up on testing. I also had normal autonomic testing. It can get better, it may take time. I am virtually asymptomatic these days by the Grace of God really.

All the best,
Aussie

I am sorry for all you are going through. You know when I first came to this board 4 years ago almost I only had one limb with my condition. I could not understand what was going on because everyone here had multiple dx etc. Within 6 months things changed where both legs were impacted,eyes,back,etc. Some things have gotten to a better point though there still and some not. To me it is too weird to not be connected. I am not sure if one thing causes another or if it is the body is so sensitive. I also know the ruff time of finding a doctor who is willing to work hard. After seeing so many I would rather a doctor tell me he is clueless then waste my time and possibly make a mistake.
On the antibiotic for 11 years. I thought one of the reasons docs don't even like to rx them is because your body begins to not be able to fight for itself. Maybe I was not told correct but with my eyes they told me that and why they wanted to limit the amount.
I hope you get some answers and relief asap

I also have labile blood pressure. The cardiologist just told me this and I wondered if it was associated with autonomic neuropathy.

I wasn't on antibiotics for a full 11 years. It has been on and off. There are a few doctors in the Midwest who do treat long term. Check lymenet.org. I used to feel how you did cyclops but when I stopped antibiotics for 4 years, by brain went from showing 3 to 23 lesions.
My doctor now thinks I have other underlying infections but I don't know if he is right.

Thank you all for the replies. I'm confused and frustrated. I'm very upset right now. This is the fourth week of chest pain radiating into my back and up my neck.

Lisabeth,
You have my sympathies. I have sent you a private message. Just log into your private messages when you get a chance. I really hope you feel better.
Aussie