Lyme Disease
 

Looking for people living in the Villages or vicinty that are suffering with the symptoms of Lyme diease..I was both infected and diagnosed in Florida one year ago. I am having trouble finding L.L.physicians in this area. I am hoping to make contact with anyone that has faced the same challenges.

Gosh. I thought when we left the wooded areas with the deerticks we were free of worry about Lyme disease.

I am sorry you have it.

I used to think it was only up north but later was shown a map that indicated it was moving south and, in fact, it was in Florida but doctors were not familiar with it and didn't diagnose it. I am so sorry you have it but thrilled your doctor has figured it out. I have known far too many people with it.

Yes, it is here in Florida, I deduced that I received my bite in Sumter County. Certainly it has been determined that cattle may carry the tick and it may even have the capability of surviving in Pine straw mulch. Unfortunately the CDC here showed no interest whatsoever in assisting me with treatments or education of Lyme. My symptoms/health are deteriorating purely because of the disease and even though most states have Lyme support groups few have found good Lyme knowledgeable physicians. What is worse is knowing that none of the very expensive treatments to reduce the symptoms are covered by Medicare or Insurance.
My current doctor says he worked for 10 years, while working out West, trying to find a protocol for a cure finally resorting to just treating the symptoms, which are devastating to a normal lifestyle. Would be so nice to be able to talk personally, instead of via e-mail, to like suffering persons.

I'm really sorry. You might call your doctor up north ad ask him to assist you in finding a specialist down here. Have you called over to the Mayo Clinic in Jacksonville and asked them for a recommendation?

Sorry about your situation with Lyme disease. I was bitten at Shelter Island off Long Island N.Y. sometime ago, 1990 or so. Fortunately, my wife is a nurse and was managing a Rheumatology practice in Port Jefferson long Island. The head of that practice is a Doctor named Alan Kale. The last that I heard of him he was head of rheumatology at Stoney Brook University hospital. He examined me and diagnosed the Lyme disease, he put me on an IV regimen of Rocephen. It was a long time ago but, I seem to remember having two courses of these IV treatments. They seemed to have worked for me as I have not experienced any major reoccurance of the disease in a very long time. However, they know so little about this disease that it may be the possible cause of other ailments such as arthritis, heart problems or even some cancers.
My best advice to you would be to contact a rheumatoligist in Long Island or in Conn. They have been dealing with this disease for many years and in my opinion, they would be the most Qualified Dr's to deal with your situation. I hope this helps. Good luck.

You could contact the office of Dr. John Burress in Lady Lake as last year I had some similar symptoms to Lyme's and he ordered lab tests to rule that out and other things. I was later sent to a rheumatologist in Ocala. You can call the offices of Dr.Miguel Rodriguez up there (352)291-0245.

Thank you all for the responses. I should add that I am Killickb's wife Judi and using his log in because I cannot get Talk of The Villages to accept my log-in no matter what I do! Am continuing to seek farther afield for resources but will contact all those names that you have provided --- cannot leave one stone unturned.

Information on Lyme Disease in Florida
 

Lyme disease in Florida

It says according to the Florida Department of Health, that an average of 51 cases are diagnosed every year, and of those 70% were contracted outside of Florida.

???? Questions
 

Lyme Disease is serious stuff!

I lost a Dr friend of mine here in Central NY. It damn near killed him. He had to go somewhere for alternative medicine as no one would treat him here

How would a novice like me even know of a tick attack?

I think those 51 cases are a huge understatement. My understanding from the doctors up north is that the Florida doctors just haven't figured out it is Lyme and are misdiagnosing. It took many years for those doctors in CT (where Lyme was identified) to even admit there was a Lyme disease. They continued to misdiagnose over and over and far too many people suffered far too long or with incurable symptoms. Lyme is nothing to fool around with. GET TO A SPECIALIST FROM A MAJOR HOSPITAL.

Hi I'm Al, We Haven't moved to the villages yet will be down there from CT next week.
Our house is sold here.
I have been dealing with lyme for 10+ yrs and have tons of info on this.
Many of the LLMD,s are here in the tri state area. I've been to 2 of them.
You can email me if you wish at ,

arg4@charter.net

The actual is approx 30,000 new cases and it has been estimated that this is only 20% of the cases; The actual number would then be 200,000 cases of infection a year.
Scary isn't it !

I live in CT and 7 people on my street alone have chronic lyme.

There are probably many more cases north than south but that doesn't help if you have been diagnosed with it.

I always thought it was carried by the deertick and I didn't know that Florida had deer.

Always thought it is far more prevalent in northeast. We had cases in Ohio but not anyone I knew had been diagnosed.

But like all bad news that I am surprised by, I am sure I am wrong on this one too.

If you believe those who have studied this disease the spyrochetes can enter the body through many other modes other than a tick bite which is scary! That is why a large % of sufferers never see the "Bullseye". We just had to come home early from our vacation because the symptoms were unbearable for Judi.

We are still seeking Lyme literate doctors and now accept that we may have to live in their area of the country -- if we find them!--- for up to 8 months which seems to be a minimal treatment length just to stay even with this bug.

So, if there is any other experience/info out there please provide,