Lyme Disease Support Group

I've had symptoms of Lymes for at least 3 years but kept thinking it was my thyroid. Not sure how long I've actually had it... but once diagnosed, and looking back, I had all the symptoms too!

I had first episode of pericarditis in dec 11 and my new endocrinologist tested me for coxsakie. I also tested positive for babesia and about 6 other viruses/coinfections......

I'm currently seeing a naturopathic doctor who is managing supplements, boosting my immune system, b12 shots, etc, and seeing a LLMD for antibiotic mgt. unfortunately my treatment is not going well.......

Just had immune system testing done and I have iGg defiencies so going to look at ivig treatment to help.

And, if that's not enough, I have a lung nodule that we are working up to figure out if it's cancer or not.....fun times!

I've only been on oral antibiotics so far.....apparently I'm not sick enough for IV antibiotics.... Although I've been on disability from work for 6 months now......I'm a trauma nurse!

Slightly frustrated to say the least..... But taking one day at a time.... Grateful its not worse, cause it could always be worse!!!

This is a hard fight, probably the hardest thing I've had to do, just stay positive, find good doctors who listen to you, don't be in a hurry to get fixed, and pay attention to your body!

The LLMD that I am going to go see for the first time on July 3 has paper work I have to fill out (of course) and one of the pages is about IV's and mentions if cardiac involvement that IV may be used. Just FYI...

I am having biopsies done by my NP...one of a suspicious mole, and the 2 others are cyst-like which is the only way I can explain. I'm not fretting about it. I'm not sure how I could hanlde cancer on top of everything else.

Our stories sound pretty similar. Though I got pericarditis pretty close to the time my whole illness (or symptoms) started back almost 3 years ago. My heart has pretty much always been involved in this.

I haven't been tested yet for the Coxsackie virus, though it seems I should given that it is known to be a cause of pericarditis.

Your last sentence is exactly how I feel. All this time, I have been in school to become an RN too. I really don't know how I am doing it all sometimes. Maybe I would have had straight A's if I went to school without chronic illness. : D

Thanks for your response. It's nice to know I am not alone and there are people with almost my EXACT illness! Keep me posted on the new cardiologist.

I like mine as a person and a lot of people think he's great, but in all of this, had HE paid attention to the fact that Band 41 was present on my "negative" test, I would have probably not gotten so bad! So I am not sure what to do about my doctors, other than the NP who figured this out. They all dropped the ball on this one.

I know it can be a hard thing to diagnose, but the one doctor I go to for hydrogen peroxide actually treats people for Lyme! So there's only so much I can understand about a missed diagnosis from some.

I have had several ekg's, a 24 hour moniter and treadmill ekg. Weny back 2 cardio yesterday. Very dismissive of my lymes causing it

He says he went to yale and knows all about lyme annd that he doubted llmds have any special training and that I may not even have it, even though I have 3 an 4 bands ++ on my wb test.

Now he wants to to a echo, a tilt table test and a 2 week moniter

I said" i dont need a two week moniter, i can show you the conndition by jogging in place for 10 -20 seconds" He didnt even have me do it.

Im so scared to find out the problem but scare to not find out 2, in case its treatable.

My mind is so shot from all the panic attacks and worry and over all anguish.

& week into abx and no relief as of yet. I even wonder if they are making the tachiardia worse!

blessings to all

I have only been to my LLMD once and right away, she said that if she had met me when this all started that she would have immediately diagnosed me with Lyme and Bartonella.

I too have been through the ringer with treatments that didn't work and doctors who didn't listen. My symptoms started when my son was 6 months old and he is 3 now and I hate when I have flares and I have to tell him that I am not able to do basic things with him.

You are NOT alone!

There are doctors out there who know what you have (hello positive test!!!) and will treat you best. Find one ASAP!

I can't dx you, but from what I have read, if people have other co-infections, typical antibiotics for Lyme won't work. My LLMD says she thinks that it is my Bartonella causing my heart problems.

I have no test results yet...ony a page of symptoms and I am being treated. She said if my tests come back negative, she will still treat me.

Hang in there and post on the LLMD request forum to fin yourself a doctor.

I am so sorry that you are dealinf with this on top of your illness.

Take care,

Hazeldee

I just hope you can find a good doctor and get treated appropriately once and for all. I am going to be taking 4 to 6 weeks of oral Rifampin and Zithromax to start, but then will be switching to IV antibiotics.

Just with cardiac symptoms, my doctor said IV, but I also have neuro symptoms at this point.

Good luck! Keep me posted!

I read some of your "symptoms" Interesting, that my daughter could not stand on one foot for even 3 seconds, she almost made it to four seconds the 4th time she tried. Also, she has rashes all over, and they come and go, bumps all over. But as she has had skin bumps since she was born, I haven't thought much about it. Still going to proceed further.