Lyme Disease Support Group

I am new to this board and am looking for a LLMD in my area. My story is similar to so many I have read on this page. I know when I contracted Lyme and asked for a test about 6 months after all the symptoms started just to be told that Lyme is not in Florida, therefore I could not have Lyme. So two and half years later I am worse and I finally found a physician to pull the test which came up positive. This physician is not familiar with the disease put me on six weeks of doxy and referred me to the Mayo clinic for treatment. On the doxy the first two weeks were the worst I've ever felt but after that I started feeling better for the first time in a long time. Unfortunately two weeks off the doxy all the symptoms came back worse. The Mayo has gone the same route of the other doctors in my past, mri, c-scan, EEG, every blood test under the sun (except Lyme) their opinion is that 6 weeks of doxy will have cured Lyme therefore it must be something else. I do go back to speak with their head of diagnostic department next week but I don't have much hope that they will be willing to use the medicines needed to help me. I spoke to Dr. Ernie Murakami from Canada, I sent him my records (desperate for help at this point) and from this he says Babeosis as well as Lyme and has suggested the treatment of Mepron and zithermax for the Babeosis first followed by treatment of lyme with antibiotics series with Flagyl included. Ok so this ended up being much longer than I meant it to be. I am looking for a LLMD in my area that may be willng to treat me. Thank you for any help you can give

Kris

Kris,

You will not find a doctor in Florida to treat you. You will have to travel to another state. Send a PM to Jaime, one of the group leaders, and she will send you the names of doctors in the surrounding states.

The reason you will not be treated in Florida, is because doctors have been told there is no Lyme disease (wink, wink), because it would hurt tourism.

There are over 2 million deer in Florida. I'm sure one of them is carrying a tick and is infested with Lyme.

Look out of state for treatment.

Be well.

Tom

Actually, Tom, I'm being treated for Lyme by an integrative doctor in Northwest FL. (And she says she has other Lyme patients. She uses Igenex, IV abx, ozone, chelation, silver therapy, etc.)

I do worry about her, though because FL goes after doctors practicing different alternative therapies...FL doesn't even recognize (license) naturapathic doctors, either. Kind of behind the times.

Still, Jaime pm'd me some LLMD's in FL. Not in my area, lol---FL is a big state. If this doc doesn't work out, I'm on my way to Georgia, lol.

I went back to Mayo Clinic yesterday to follow up with my primary care's plan. Sigh, more tests to rule out things I have already been tested for. When I brought up Chronic lyme I was told that the Mayo stands beside the CDC's outline that there is no such thing as chronic, reoccuiring lyme infection, that extended antibiotics will not be of any benefit. Again they said that if I had lyme the 6 weeks of Doxy would have taken care of it. So now I feel like even more of a pincushion from all the bllod they took and have more consults scheduled (in October), RA, Neurology, Psych, Infectious Disease etc. So I sit here hurting, exhausted trying to work and can't focus, having to wait until October for more Doctor appointments. I can't afford the lyme clinics, I need to be treated inside my health insurance. Crying today just seems like all I'm going to get done. Sorry just frustrated today and don't know who else to talk to

I feel very fortunate that the first doctor (here in FL)I was referred to to be re-tested for Lyme is fairly Lyme-literate. I told her I'd been tested back in '03 and she dismissed that and based on my symptoms (and the fact that I'd started feeling ill while still living in CT)she re-tested me with Igenex and it was positive. She then told me it was difficult to treat once it's likely reached late-stage and there were various methods/therapies/treatments, may take time, etc. At that time, I knew very little about Lyme, or the controversy surrounding it but once I started researching I realized I had a doctor "in the know."

After the diagnosis, I started researching and along with many other sites, read the info on the Mayo Clinic---one of the first websites to come up, ironically---but continued to read and learn that some of these venerable old medical institutions really have no clue, and the Mayo is one of them, sad to say.

All I can say is PM Jaime for LLMD's in your area. Call around and see if they'll work with you, payment-wise, maybe? I know how you feel, I have pretty good insurance but it's not going to cover the "clinic" I wanted to use, recommended by some on this site---so I'm sticking with this doctor who at least "gets it" and is open to alternative therapies (in fact, recommends some, along with abx). Her initial consult was $100 and she spent over an hour with me, orderd many tests, along with the Lyme. The follow-up was $50 and was at least 45 min. I'm grateful she is not a "gouging" sort of doctor--been hearing about those docs, too. (I understand the dilemma LLMD's face in terms of non-participating insurance, harassment by the mainstream medicine, lawsuits, etc., but I still think it's unconscienable to charge ridiculous fees to people so sick and beaten down already. JMHO) It's so difficult to put a price tag on our good health, but unfortunately, money is an issue for a lot of us. Initially, I thought "whatever the cost," but the fact is, my dh and I can't afford the clinic I want to go to AT THIS TIME, so I'm sticking with this doctor for 6 months and if I'm not feeling better by then, we're going to the clinic---we'll be putting money aside and/or we'll take out a loan, if we have to. I've given enough of my life to this disease.

Well, sorry I didn't mean to make it "all about me," just trying to say I understand where you're coming from, money is certainly an issue, but I think you have to at least find someone who is "up on Lyme," and unfortunately, the Mayo Clinic is not.

Blessings and best of luck.

Thank you PegB, the only Doctor I can find so far that is in support of Lyme treatment as outlined by the LLMD's is related to me. I don't want to get them in any trouble for prescribing meds that could risk their liscence. Thank you for understanding I needed that today.

I'm going to PM you.

You make some good points, Trent. Yes, I agree good treatment is money well-spent. And if I'm unhappy with my doctor's care, I will seek others, and dh and I have already discussed taking out a loan if needed to pay for it. Unfortunately, not everyone has these options.

And I don't mind a good doctor making money---I just don't agree with "fleecing" people, taking advantage, ill or not. There's a difference.

Trent,

I'm afraid I have to challenge your assertion that more expensive is acceptable, and does not mean you are being fleeced because you might be receiving better treatment for your money. Maybe there is another way to look at it?

I think you will find that most people will spend what they have to in order to feel better, but why should anyone be expected to spend more than is fair? I accept that it is difficult for anyone to determine what a doctor's or his staff's time is worth, but in business - and yes, medicine is a business - there are limits to what you can charge and still expect to get customers/patients. This is the basis of customary and reasonable, as it applies to the business you are in.

There are doctors out there who will take advantage of people, I don't care what anyone says, especially in circumstances like those who suffer from Lyme disease. There are a limited number of doctors who are willing to offer the care, for whatever reason, but you will find some who get in to it for the sole purpose of making money and not just healing those who are sick. You will find people like this in all types of business. It's as simple as supply and demand, for some, but not the by Webster's definition. More by the "Huckster's" definition.

I had written in an earlier post that my doctor was charging me $150.00 for a 5 sentence, one paragraph letter. You can bet your bottom dollar that I was not going to accept that as being fair. I protested, letting him know that if this was going to be the case, I would seek care elsewhere. The charge was reduced to near nothing, as I was assured that this was a mistake. I like my doc just fine, and his prices for medical care are in-line with others, but I will not be taken advantage of, nor do I expect any person to allow themselves to be taken advantage of.

Doctors face the same risks as all businesses. Price yourself too high, and your appointment book will be blank. Price yourself at the levels that are customary and reasonable, and your practice will grow.

Tom

TOM, CHECK YOUR SOURCES. THERE ARE AT LEAST 2 EXCELLENT LLMDS IN FLORIDA. IF SOMEONE WOULD PM ME I WILL GIVE NAMES. THESE GUYS ARE VERY VISIBLE IN THE LYME FIELD.