Wednesday, August 16, 2006

Our Family’s Lyme Disease Update

Some of you have asked how our family is doing with our battle with Lyme Disease and another tick borne illness, Ehrlichiosis.

My two sons both tested positive for Lyme Disease and one had Ehrlichiosis as well. I tested negative for Lyme but did have many symptoms, more than my sons did, actually, and I was the last to be treated (as I was in denial about it in the beginning when I was busy getting them treated and diagnosed). We all had fevers within eight days and the doctors feel that is the indication that our Lyme Disease was in the very early stage. (The specialist says I definitely did have Lyme Disease and my test was a false-negative due to the early date that my blood was drawn.)

My children were treated with the CDC recommended treatment for Lyme by their Pediatrician. I was treated at a walk-in center with the CDC recommended protocol.

I read one book, many websites, magazine articles, joined a couple of Lyme Internet Discussion Groups, and learned of the various controversies with Lyme. I purchased two more books (which were unavailable in libraries), but I am holding off on reading them for the sake of my sanity, for now.

All three of us have finished our medication.

My sons seem completely back to normal now.

I had a relapse after my medications finished. I am worried that I didn’t get enough medication or that the infection is still active.

Earlier this week we sought the treatment of a “Lyme literate Medical Doctor” who holds an important position on a hospital staff, and is an Infectious Disease specialist. This doctor feels that we all got the right treatment and that no more treatment is indicated at this time, and that we caught the infections very early.

I have been told over and over that it is very important to catch Lyme Disease early, as early as possible, and some are surprised that I was so astute about the signs and symptoms of Lyme Disease. The truth is that if it were not for me having worked in the medical field here in Connecticut back when Lyme was first hitting the media and public awareness campaign was first happening, I may not know as much as I do. Also, however, in the years since then, my own self-education about health matters and wellness furthered my knowledge base about Lyme. I encourage every person to become more aware of Lyme symptoms now so that you can be prepare when/if you or someone you know begins showing signs.

So right now I am feeling back to my normal self. I am so grateful for feeling well. I hope this continues. I am trying to get my life back to normal yet am trying to be mindful of not overtaxing myself. I am trying to remain positive in my attitude that I am healed from this Lyme Disease, but I am still a bit wary in the back of my mind, I guess I have heard too many real life horror stories about what has happened to some people as a result of not getting a proper diagnosis or not getting the treatment that was needed.

The specialist has warned me that if I don’t get enough sleep, or if I am stressed out or physically overtaxed, that I will relapse with Lyme symptoms. I am not happy to hear that.

For now I am choosing to believe what this specialist is saying rather than scheduling appointments with some of the other doctors in my area who are doing much more aggressive treatment with antibiotics (2, 3, 4, or more months of oral antibiotics or using all i.v. antibiotics for many months or years). I just hope we are doing the right thing.

And by the way it was made very clear to me that if we had not caught the Lyme Disease very early we definitely would have needed many months of antibiotic treatment and our symptoms could have been worse and perhaps longer lasting/chronic.

My heart goes out to those who are suffering with chronic Lyme Disease symptoms, those who didn’t get early treatment and those who are suffering with permanent disability (either due to their own ignorance or due to their doctor not being “Lyme literate”). I feel badly for those whose lives have been altered and very negatively affected by Lyme Disease. I hope that the research continues, that more health care professionals become informed about Lyme, and that all people take some time to educate themselves about Lyme Disease so you can identify it early.

Lyme Disease is being found across the country, not just in Connecticut or in the Northeast. I have read that pets on airplane flights can spread infected deer ticks. I have heard that people living in bird migration flight areas are becoming infected. Lyme seems to be on the move and is not just in America, but in Europe also (and probably other places). So don’t think you are immune just by virtue of living in some other area of the United States than Connecticut (which is where Lyme Disease was first discovered).

Thank you to all my relatives, friends and blog readers who have prayed for our health.

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1 comment:

Spunky said...

I just took my daughter yesterday to be tested for Lyme's Disease. I haven't gotten the results back yet. I do hope we caught it early if this is indeed the cause of her recent ailments.