Neuropathy with Cardiac Symptoms??
 

Hi, I was diagnosed with small fiber neuropathy then autonomic neuropathy.
These were from Lyme Disease and other infections. I have had lots of aggressive treatment for this. Now I'm having chest pain and uncontrolled blood pressure. So far I'm told I have pericarditis (inflammation of heart) but I'm still having tests.
I'm so frustrated that I keep getting one body system after effected and it's hard for me to believe Lyme is still causing all this. And I wonder if I could have another autoimmune disease that causes high inflammation and neuropathy too
One night my chest pain was so bad laying on my back or side with throbbing pain up my neck and boring into my back. At the same time, the neoropathy in my legs was extreme. It was much much worse than usual!

So my question here is has anyone else had these two symptoms together and what caused it? I don't have diabetes and tests for lupus have always been negative.

I'm so upset now. I've been dealing with this for SO long.. It's one thing after another no matter what I do. I'm getting worse!!! Thanks.

I do not have it, but I do know that you can have cardiac problems from SFN with autonomic neuropathy.

I also know....
 

Lyme disease can cause a whole lot of various symptoms to all aspects of the nervous system and other parts of the body as well. I would agressively treat the Lyme if I were you. I knew someone with it and it was a long process.

Thank you both. What is SFN???

I was diagnosed with Lyme 11 years ago. It was an advanced case and I couldn't have been more aggressive. IV antibiotics, two years of IM injections and oral antibiotics on and off this whole time.
So yes I know it's a long process. The reason I wrote here was to see if anyone knew of any other auto immune diseases that cause both neuropathy and cardiac issues.

My replies aren't going through!!

What is SFN???

Thanks both. I have had extremely aggressive Lyme treatment. You wouldn't believe the whole thing:). For 11 years! That is why I question if something else is going on...

SFN is short for small fiber neuropathy.

Some Antibiotics can cause neuropathy. So if you were on them long term you may want to read up on them in the stickys section at the top of the page...

What antibiotics were you on?

And--
 

--since the small fibers include the nerves that control autonomic responses, people with small-fiber syndromes can have dysautonomia, with disruptions in any autonomic system (blood pressure, digestion, breathing, cardiac . . .), fortunately, "major" autonomic disruption beyond "subclinical" levels tends to be fairly rare (though it does happen).

Do you recall what antibiotics you took? Some have lingering problems with mito damage.

Pericarditis can be from inflammation or viruses too.
http://www.medicinenet.com/pericarditis/article.htm

My son's math teacher in high school developed a serious case of this from exercising/lifting weights while having a flu. He was also a coach and PE teacher, and rather addicted to daily exercise and the virus went to his heart!

I hope your doctors are doing autoimmune testing for lupus, and the other inflammatory things on the list at the link I gave today.

Thanks everyone. I have been on many different antibiotics. Right now it's biaxin.
I knew Autonomic neuropathy could cause heart rthytm and blood pressure. My blood pressure is out of wack now. But I also have the inflammatory percarditis. I feel terrible. I think I will ask for lupus and other tests now.

I really appreciate the input and the perecarditits link

The more I read about small fiber neuropathy, I couldn't believe how many problems it can cause!! It's amazing! Yet the neuropathy doctor I saw basically pushed me out the door to pain management. Can you believe he told my doctor he only wanted to see "pure" neuropathy cases? My Lyme history was too much for him to deal with and he refuses to discuss it. I didn't expect him to treat me for it!!

Many doctors who are not educated in certain special things...like Lyme... or others, will not see you.

That is not because of YOU... but really a good thing. They want a more experienced doctor to take over. Think of it this way.... If you had a special car...say a diesel... and a regular mechanic said, "I can't deal with diesel engines, you need to see another".... you would accept that! It basically is the same with medicine, I'm afraid. In the end you will ultimately find the "right" doctor.

SFN is not a stand alone diagnosis... it is the result of many triggers, and other things. The only "pure" SFN is Charot Marie Tooth which is genetic, but it can also affect motor functions too.

SFN is not an end stage diagnosis.... it only describes which nerve fibers are damaged...but does not reveal the triggers or causes, of which there are many many!

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