Need LLMD in Florida or Long Island

Hello,

I am new to the boards and desperately need some help. I was infected in Washington State. My doctor missed the diagnosis of Lyme 10 years ago when I showed up at his office with a rash and all of the symptoms. He told me it was a spider bite and sent me home. Then 5 years ago I was bitten on the back of the neck and one of my cervical lymph nodes right under the bite swelled up to about 4 inches long and bulged off the side of my neck. It looked frightening. Again I got the rash about 3 days later and all of the physical symptoms. Again the doctor said I was bitten by a spider.

Starting 9 years ago I lost the feeling on the inside of both big toes and my legs began falling asleep. By 7 years ago I began having pain the the joints in my lower extremities. All of this was accompanied by what seemed like a lot of viral meningitis diagnosis. Then it spread to numbness in my arms, then "a typical migraines" accompanied by lesions in the brain. Now it has come to loss of cognitive skills, MS and Parkinson's symptoms (tremors, trouble swallowing at times, ripping pains, etc) and RA in all of my joints. Oh, and irregular heart rhythm. I am gradually losing my body and my mind and the progression has been building speed.

I moved out of Washington state 3 years ago. I went back in March to visit my daughter who is in college there and decided for some reason to go back and see that same doctor about all of my symptoms. Apparently since he had last seen me he has learned about Lyme and knew before I even walked in that he had on his hands now a person with chronic Lyme. He diagnosed me before even sending out the blood test, but the blood test confirmed it. Lyme and all of its nasty little partners. He wanted to treat me long distance with natural products, but I cannot travel by plane anymore and I think its far past natural treatments. I am running out of time to stop this disease.

I live in Clearwater, FL and my doctor is a great guy who wants to help, but he has no training in it and is already under a watchful eye for controversial treatment of Type II diabetes. There is another doctor in the area who is supposed to be LL, but he charges $500 just to see you the first time and treatments are $2,000 a week. Who can possibly afford that?

My in-laws live in Plainview on Long Island and I could stay with them while getting treatments if I needed to, so they are another option.

Any help would be greatly appreciated.

Shelley

I can't figure out how to enable it. I have "show email address" clicked in my profile. I don't know what else to do.

Hi walking --
You need to change your default email program on your computer.
Also your profile still says that your email address is unavailable.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Good luck!

Hi Traveler. Yes, I have the "show email address" option checked. And I did figure out last night that if I moused over the envelope that I could see the email address. I emailed 1bitten2xshy, but haven't heard back.

achieving grace, I use google mail, not outlook and am not in the condition to reconfigure my accounts to go through outlook. I've been on computers since only the government and huge businesses had them (when I was 13 my grandmother's cousin was a government scientist and had a computer that used tapes in his home) and the internet since it's conception. But now I can't figure out the simplest things.

Barbara at ILADS emailed me the names of the docs. There is one in Florida, but I don't agree with some of his practices, so I am going to one up in NY. I am also encouraging my doctor down here to get trained, but he is doing his own research into effectively reversing Type II diabetes, so he's pretty tied up with that.

Thanks for watching out for me. I really appreciate it.

I have been out and about all day today, just got in and saw your Email and sent you one back :)

Thanks 1bitten2xshy. I have emailed you back and accepted your invite. You should see my request.

The doc I am hoping to see is one of the top in the country. We'll see after I call his office on Monday. He helped pen the guidelines and came highly recommended. My doctor is concerned and feels we don't have much time, so he wants the most effective treatment possible. Hopefully I can afford it.

I will let you all know, and thanks again for helping me out. It has been quite a relief to find this great group of people. Just knowing there are people who understand really helps.