multiple symptoms

[Surruh]

Hi everyone

I have had some strange symptoms that started in October 2008. It started with tingling in the hands and feet (mostly bottom of feet). With this I noticed starbursts at night. I've gotten used to this but its strange. Also with the eyes I see this strange "static stuff". Its not too bad but drives me crazy in the dark. I saw an opthamologist and he could'nt find anything wrong with my eyes. A few weeks after the tingling started I got random painless muscle twitches ALL over my body. It comes and goes but it was bad for a few days.

Before these neuro symptoms I went to the doctor with chest pain (I'm 22 and in good health so this worried me). I had an EKG done and it was normal. With the chest pain I had a few weeks of heart palpatations that occured quite frequently. Also off and on I noticed strange moments of trying to catch my breath..almost like someone was putting a pillow to my face. I had a panic attack witch I have'nt experienced before.

Anyways, I went to a neurologist and he did a neuro exam (completely normal), a bunch of evoked potentials and nerve tests (normal) and a brain mri with and without contrast (also normal but noticed I have sinus inflammation thats probably been there for awhile..I've had a long cold with stuffy nose that got better and worse before finally going away). He wants to see me in 3 months but he does'nt think I have ms. Also blood work was normal.

Do these symptoms look like they could be from lyme disease..does this sound like something I should be tested for? I've never noticed a tic bite or rash. Sorry for the long post!

Thanks in advance
-Sarah

[JackieCalifornia]

Sorry to hear about your situation.

Neurologists in general don't seem to have Lyme and its co-infections on their radar screen, unfortunately -- based on my own experience and that of others here and elsewhere.  A number of my doctors (before I was diagnosed with Lyme) clearly indicated that the anxiety was the problem, not a symptom.

However, as I have been treated for Lyme and a co-infection, the anxiety has lessened dramatically over time, and on days when I am my old self, it's gone entirely.  Lyme and co-infections run throughout the body, and that includes the nervous system, which includes the brain.  Some people seem to have 'Lyme brain' worse than others, but even in those with seemingly mild cases, anxiety can be a component.  

Doctors are attuned to watching for the 'worried well', those who are okay physically but worried about something else that produces anxiety.  Unfortunately that means that when the MDs can't immediately find something physically wrong, they may stop looking and tell you to get over the anxiety.

Don't feel guilty for feeling anxious; and try not to be too discouraged by getting blown off by MDs who don't understand.  California does indeed have Lyme in both Northern and Southern California -- ticks can't read maps and don't know they are not 'supposed' to be here.

Rather than just wait three months before seeing the neurologist again, I would suggest you look for a 'Lyme Literate Medical Doctor' (LLMD) in your area and make an appointment.  There is often a waiting list for a first appointment, and you owe it to yourself and your family to find out what's wrong.  The sooner you rule out or treat Lyme, the better, for all kinds of reasons.  But also keep your neurology appointment, and be sure to get copies of all test results from all your doctors as you go along.  Press ahead on all fronts.

Try the ILADS website and other websites for names of LLMDs in your area.  

Let us know what you decide to do and how you are doing, okay?

[patsy10]

There is plenty of lyme in California.  "JackieCalifornia" posts here regularly and gives a lot of good information.

Regarding the possibility of "anxiety".  Many of us, including myself have gotten this diagnosis, along with cfs,fibromyalgia, and others.  These are diagnoses that people get when physicians can't pinpoint a cause for  the symptoms on test results.  These scary symptoms make people anxious.  Only YOU know whether you are anxious or not. I would not let someone talk me into anxiety being a cause of my problems.  Not saying your doctor is doing this but it happens quite often.  It's normal to be anxious about an unknown or uncertain diagnosis.  Abnormal anxiety would be generalized anxiety about things in general.

[Surruh]

Thanks for the response. My neuro has not diagnosed me with anything or seems to point to anything. He mentioned maybe a virus caused it or its anxiety (runs in my family). I haven't done any lyme testing but maybe I will mention this when I see him in May.

To: patsy
I live in California...I don't know if lyme is common here.

[patsy10]

Welcome.  I share all of those symptoms too.  I can't say if it's lyme or not but it sure wouldn't hurt to get tested.  Do you by chance live in a lyme endemic state?

[wonko]

I think this sounds very suspicious for Lyme disease.  My presentation had a lot of similarity with yours, and I also don't recall a bite and never had the "classic" bull's eye rash.

It sounds like you have gone through a good amount of testing for other conditions.  Has anything been diagnosed or deemed likely?  Did you have any Lyme testing so far?  The tests can be inaccurate, I tested negative twice on the ELISA screen, which is usually given first before the Western blot.

If you want to learn more about Lyme and the difficulty in getting a diagnosis and treatment, I would recommend the documentary "Under Our Skin" and the book "Cure Unknown" by P. Weintraub.  Both have easy-to-find websites with a lot of online content.  

Of course, please also feel free to let us know more about where you are in terms of a diagnosis and any other questions you may have.