December 9, 2008

So Close.. Yet.....So Far

Hello my chickadee's....

The title of this post is so fitting...As most of you know I am sick and have been for a good number of years.. 17 this December actually. My original diagnosis way back when was Lyme Disease and trust me, I have been tested for almost anything you can think of and the only tests that ever come back positive are my Lyme Disease test. Through the years I've been through all the oral and IV treatments but unfortunately just never seemed to get better. Sure, I would have small spells here and there of some kind of improvement but it never lasted.
When we moved here to South Carolina I never dreamed of the horrible health care I would find if you're sick like I am.. I've seen more doctors down here than I can count and the majority of them are just so ignorant when it comes to Lyme Disease and it's long term affects that it's rather like living in a foreign country and not ever knowing the language of the country you live in.
I have however been sticking with 2 doctors in the last couple of years who, although aren't very versed in my illness and it's affects they are however, from North New Jersey originally so Lyme Disease is not a foreign concept to them just long term Lyme is but we're working on that together. My neurologist so far has been wonderful and very open minded and is trying to understand the affects of long standing Lyme and what can possibly be done about it.
In the last week I have a few tests run in the hopes of possibly finding what has been causing some new symptoms I was experiencing in the last month or so. Last Tuesday I had an EKG which thanks to God turned out fine. The next day I had a heart Echo cardiogram which also thanks to God turned out to be normal. On Thursday I had a CT scan of my sinuses which was requested by my neurologist because of all my massive sinus symptoms and 10 yr dizziness. Today I got the results of that which also showed normal, once again thanks to God.
While all of this is VERY good news in another way it's very frustrating for myself and those who love me because it's 17 years later, my condition has deteriorated pretty badly in the last 6 years and yet, we are still no closer to any kind of helpful answers.
As of my appointment today with my neuro, she is sending me in January for an MRI on my brain to check to make sure there are no spots on my brain and also to check to see if I have any cranial nerve damage caused by the ongoing Lyme infection. She is also over the holidays going to look into Chronic Lyme, learn as much as she can and see what she can do to help me.
For myself, right now I am still just as confused as I always have been about my health and a little depressed because as of today we are still no closer in finding a way to help me but, it is a comfort to know that I do have a neurologist who isn't going to give up on me because my case is severely complex.
To my friends, I only ask one thing of you if you find it in your heart to do so. If you are a praying person would you send up some prayers for me? And if you're not a praying person, maybe you're a person who just likes to talk to God, could include me in one of your talks with him? I would deeply appreciate that and so would Lou..
I guess thats it for now. I will keep you updated on my blog how things are going..If you want to leave any comments or questions just click the comment link at the end of this post..and thank you so very much for any prayers or 'talks' you may include me in..


  1. You are so right! Here in S.C., particularly here in Myrtle Beach, health care totally SUCKS unless you can find a physician who is either from the west coast (California) or from up north.

    In my situation, I am thankful that I have two excellent doctor's who have provided me with excellent care, and who have saved my life. However, it took me three years to find them. Had I not, I would not be here today writing this. Therefore, I fully understand and relate to your frustration.

    The single most important thing here in the south is that you have to be in control. Other wise, doctor's here will shrug you off as some kind of idiot ... it's actually as though they don't care. In other words, when you head off to your doctor's appointment you have to be well informed and knowledgeable about what is going on in order for the doctor to even think outside of the box. Thank God for the Internet! It's sad, but that's reality here in the south. And you and I have more or less been our own physician.

    You have been through a lot health wise. I feel for your darling! It's a bitch not being able to pinpoint what the hell is going on in order to get it fixed. Nonetheless, you have hung in there and kept on trucking ... you go gurl!

    I hope that one day soon you'll find answers that will once again bring you back into full recovery and we can go dancing. Cause God only knows how good it will feel to be able to do a gig or two and not have to recover afterwards. Therefore, my thoughts and prayers are with you. Hang in there baby!

  2. I'm praying all the time, Robby, that you will at last find something to relieve the many symptoms of chronic Lyme. I'm glad you have a neuro doc who has taken an interest in your case. I'm just positive that somehow, someway you'll find the help you want so much. Love you, Robby!



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~Robyn~ XO