Lyme Disease

[KILLICKB]

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.

[graciegirl]

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.

[shcisamax]

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.

[KILLICKB]

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.

[shcisamax]

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?

[beartrack]

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.

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.

[NotGolfer]

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.

[KILLICKB]

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.

[graciegirl]

Lyme disease in Florida (http://www.doh.state.fl.us/Environment/community/arboviral/Tick_Borne_Diseases/Lyme_Disease.htm)

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.

[CarGuys]

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?

[shcisamax]

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.

[gamby]

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

[gamby]

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.

[graciegirl]

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.

[KILLICKB]

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,

[shcisamax]

My daughter had lyme when she was nine. At the time, because we didn't know how long she had been suffering, she was treated for almost a year with two antibiotics. She stopped one at about 5 months, I think. But the other she took for apx. 10 months. She definitely got rid of it but her immune system has never been the same unfortunately. I don't know if it was the right course of treatment or over treatment. I just know she doesn't have it now. I believe you need to hit lyme really hard initially and if you catch it early, you have a good chance of getting rid of it. It is a complicated disease and once it gets in your system, it is a nightmare.

[ilovetv]

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.

Maybe you could look into these CDC listings of Clinical Trials on Lyme Disease. Not pushing anyone to get into a trial, but this could be a be a good way to find out where research is actively being done, and who the researchers are.

Some in the main list of clinical trials are already completed, and some are actively recruiting participants.

I think a valuable nugget is found in these listings, regardless of being completed or ongoing, where the "Contact Person" is listed with their email address and the facility where they are in practice and doing research.

Here is an example listing, and below that is the main listing of all the CDC has listed.

Example listing:

Searching for Persistence of Infection in Lyme Disease - Full Text View - ClinicalTrials.gov (http://clinicaltrials.gov/ct2/show/NCT01143558?term=lyme&rank=4)

And Example "Contacts" info from that page:

Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01143558

Contacts
Contact: Adriana R Marques, M.D. (301) 435-7244 amarques@niaid.nih.gov

Locations
United States, Connecticut
Mansfield Family Practice Recruiting
Stors, Connecticut, United States, 06268
Contact: Meghan Gardiner 860-487-0002 lymestudy@mfpstorrs.com

United States, Maryland
National Institutes of Health Clinical Center, 9000 Rockville Pike Recruiting
Bethesda, Maryland, United States, 20892
Contact: For more information at the NIH Clinical Center contact Patient Recruitment and Public Liaison Office (PRPL) 800-411-1222 ext TTY8664111010 prpl@mail.cc.nih.gov

United States, Massachusetts
Tufts University Recruiting
Boston, Massachusetts, United States, 01536
Contact: Erin Chung 617-636-5952 echung1@tuftsmedicalcenter.org

Sponsors and Collaborators
National Institute of Allergy and Infectious Diseases (NIAID)

CDC Listing of Lyme Disease Clinical Trials:
Search of: lyme - List Results - ClinicalTrials.gov (http://clinicaltrials.gov/ct2/results?term=lyme)

[Deerfly]

Had Lyme disease two years ago. Treated by infection specialist in The Villages. Dr. Sheila Gillikin diagnosed and treated me. Very happy with her treatment. No telltale bullseye rash so difficult to even suspect lyme but picked it up in northern MN where there are lots of cases. If not treated in a timely fashion it can have terrible consequences.

[KILLICKB]

Yes, we have been trying to get the infusion protocol started for 6 weeks now. We found an LLMD in Tampa (who has given us the protocol to follow and we have spent $1200 on the drugs etc for this) but need a primary doctor here in The Villages just in case of emergencies. We thought we did but he is refusing to believe my wife has Lyme and will therefore not assist us. We have talked to many doctors/nurses about help and on Friday a Home Health company told us that they had approval to go. So we got the PICC line inserted to begin the twice a day Rocephin infussions. We also procurred other supplies drugs etc @$700.

We get home this morning from PICC insertion and have message that the treatment will not be started as no authorisation has been recieved!!! The last few hours on the phone have gotten nowhere so now I suppose we go to emergency and have the PICC line removed -- goodness knows if insurance covers any of this.

So we are now having to backtrack and find a new primary doctor, go through the paperwork to get established and see if they will work with us on this. We assume all of our money and effort is down the drain at this point. In the meantime I am trying to keep my wife from doing something stupid!

You want our opinion of the medical proffesion !!!!!!!

[shcisamax]

May I just say DAMN!!!!. I am so sorry you and your sife are going through this. Call the Tampa doctor and see if they can get you a primary doctor through the TV hospital or through some system here. THEY have to have some sort of connections. Do you have to take the line out today? Or can you wait...try to get a doctor now so you don't have to do that again.

[shcisamax]

Also, the doctor I have started using...don't really like her but she might take this as a primary is Yelamanchi. 391.5900

[shcisamax]

Did you try Deerflys suggested doctor: Treated by infection specialist in The Villages. Dr. Sheila Gillikin diagnosed and treated me. Very happy with her treatment.

[shcisamax]

KILLICKB: Start a new post that asks for help from all who are on. You want them to recommend a primary who is accommodating and you need an appointment today. Someone on here must have a good relationship with their doctor and be able to get you in and establish the damn rapport.

[NotGolfer]

As I earlier posted, Dr. John Burress at Lady Lake Family Medicine on 466 might be someone to see. He has a wonderful nurse practioner as well. I saw Dr. B. for the 1st time over a year ago for something else. While he was taking notes on my history, he stopped me and asked me questions that I'd never heard before from doctors 'up north'. He then sent me to the lab for blood tests....Lyme's was one of them, Rocky Mt. Fever and 12 other things that I don't remember. I don't have Lyme's but did find out I have a form of RA which also has dreadful outcomes if not taken care of. He then referred me to a rheumatologist (Ocala).

An acquaintance of mine a few years ago had Lyme's that took a long time to diagnose. BUT finally she was put on I.V. antibiotics for quite awhile and her outcome was good!!

I've found that we, as patients, NEED to advocate for ourselves---that is to keep knocking on doors to find a doctor who listens AND can also assist us as we need it! Best wishes to you!!!

[KILLICKB]

Still looking for a doctor who a) is accepting new patients this side of 2013 and b) who will work with the specialist under whose care we are for the Lyme protocol. Fortunately we have been able to start the treatment and we are able to do the infusions at home even if the treatment is worse than the disease at the moment.When we need to cover something of an emergency we just have to go to the ER as our primary is still not with us against this disease, in fact I feel he is gloating when I feel really bad as in "I told you so" . We did have a call from Sumter County Infectious Disease Center yesterday to get the details so iour case has been reported --- they confirmed that the Lyme causing tick is present in Sumter County.

All I can say is if you suspect a tick bite of any sort get to a doctor NOW. Lyme is something you do not want to ever contract as it is usually ongoing for evermore and makes life very miserable in the process.

[Rebel Pirate]

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 knew virtually nothing about the ticks and disease so just did a bit of research. This is from lots of different sites...just selectively chose some info that seemed most interesting and pertinent to our circumstances in TV...and prevention.

Deer ticks, now known as the black-legged tick, is defined more by the disease it spreads than by its own characteristics. They are smaller than the more familiar dog tick; deer ticks are about as big as a sesame seed. They live throughout the central and eastern United States, wherever their favorite hosts, deer and rodents, are present. Ticks become infected after feeding on infected mice and other small mammals, such as chipmunks.

The tick must remain attached for at least 24 hours for the (Lyme Disease causing) bacteria to transmit to humans. Checking yourself, your family and your pets after coming inside may enable you to find such a tick and head off the disease.

In the US more than 14,000 cases are reported annually, but because symptoms so closely resemble the flu and usually go away without treatment, scientists estimate as many as nine out of every ten cases go unreported.

Protect your pets. People often think of Lyme disease as a threat to humans, but it is also a threat to dogs and cats. Ticks can hide easily in a pet’s fur and attach for a blood meal. Always look for and remove ticks as pets can become infected with Lyme disease or other tick-borne diseases. Pets can carry ticks into the house where they can attach to humans. Be particularly careful if your pets sleep with you.

If you plan on spending time in a wooded area of Florida during the spring or fall, then wear long pants tucked into your socks. Wear light-colored clothing so you can quickly spot ticks. Avoid brushing plants along trails, as ticks can use their sense of smell to migrate to high-traffic areas. If you find a tick on you or someone else, then remove it with a pair of tweezers. Do not burn it with a match or use harsh chemicals. This could cause the tick to regurgitate its entire stomach contents into the host's bloodstream.

A tick safe zone is composed of lawn, is as sunny as possible and begins nine feet or more from the edge of the woods. It should surround your house and encompass the areas of your yard that you and your family regularly use. This includes walkways, areas used for recreation, entertainment, and gardens. Your tick safe zone takes advantage of the tick’s own biology and behavior to keep ticks away.

Lyme disease occurs only sporadically in the southern states. Three hundred sixty-six cases were confirmed in Florida from 1999-2005 and most people with Lyme disease acquired their infection in the northeast. In the seven-year period 1999-2005, an annual average of 18 cases without a travel history outside the state were reported to the State Health Office (Division of Environmental Health 2006).

[shcisamax]

Well, actually the size of a deer tick changes upon its life cycle and if it is engorged. In the earliest stages, it is the size of a pinhead. When it is engorged, it can be larger than a sesame seed.

[2BNTV]

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 found it ironic my old family doctor passed away at 82 years old from Lyme Disease. He liked to garden and must have gotten while working around the house.

You think he would have known. :confused:

[KILLICKB]

I understand from a network Lyme blog that we are on that a Lyme literate doctor in Wisconsin dies this year from complications of the disease and he was in his late 40's I believe. I suspect many more die of Lyme but it is put down to one of the many, many side effects of the disease - as of today my wife is going through H---, the "treatment" being way worse than the disease.