a doctor contacted me..

Hi Shel!!
Don't worry about what your brain will & will not allow you to do - a lot of us have or are going through the exact same thing!! I usually can't post anything once I get tired!!!

I say CONGRATS!!!! Stay on course to get in to see this LLMD!!! Provide all of the info you can possibly get to them! You need to start on treatment asap. No reason to let it go any farther than it already has.

Please let us know as things develop!!

ShelETN, I am so very sorry to learn of all your struggles!

Just as many regular Drs are charlatans (etc), so do many alternative Drs practice 'voodoo' for money.

There are a few folks on this board who can find an LLMD in your area, IF you ask and IF There is one -- hopefully someone who accepts your insurance and will do their best to properly test and then treat you.

I'm w/ you right now -- I am pro-abx at this point and once I feel I'm kicking some real 'A', I will look into some 'alternative' treatments for building up the immune system.

Others here may (probably ) disagree. But I think a treatment costing $4000 right off the bat seems very fishy. Esp w/o a diagnosis based on SOME kind of testing. No blood work either??

I sure don't know how long we have to suffer w/ this. I am much better of fthan many sufferers here, but in ways, I am worse. I don't know how long we are supposed to take this!

Anyway, SehlETN, I don't know how you will find a DR knowlegable of this disease. Partly because they are stubborn and don't want to deal w/ it. Partly because if they DO care and begin to treat you, they face threats and possible ruin.

ShelETN, Please do some research on this, and I think will you may note that not all alternative Drs are productive! And some are amazing! And I don't know how you will ever be able to determine if the Doc you go to is competent!

Just PLEASE make sure to get copies of your bloodwork and THEN share that w/ us

Post Edited (+Lyme) : 9/12/2010 8:20:29 PM (GMT-6)

Hi all,

The hyperbaric oxygen chamber is not voo doo according to Brooke Landau who had crippling chronic lyme:

http://www.canlyme.com/landau2004.html

http://www.youtube.com/watch?v=iaAjCRBcKJs

"She experienced short-term memory loss and loss of hearing in her left ear. She began to lose sight in both eyes, developed heart arrhythmia, gallstones and colitis. She lost 30 pounds from her already thin frame – at one point the 6-foot-tall former model weighed 120 pounds.

She has undergone various invasive procedures and treatments that included taking 27 pills a day.

"Yet nothing has restored me to the pain-free condition I once knew," said Landau, who has undergone seven spinal taps and two surgeries.

In 1996, Landau moved to Miami in hopes a warmer climate would lessen her joint pain. But, as the illness progressed, so did the pain.

She eventually met a doctor who Landau said saved her life.

By undergoing experimental treatments five years ago, Landau is able to do everything she could before – including working out at a gym, salsa dancing five days a week and playing volleyball on the beach. "None of which I could do for years," she said.

"Brooke is a fighter," said her father. He remembers when she had several operations as a baby to correct a congenital heart defect. "It made her very tough. As a child, she always knew what she wanted. Her stick-to-it-iveness really showed during her illness. We're proud that she's never given up. But nobody should go through this stuff."

Because she was considered a research subject, she wasn't responsible for the medical costs that mounted to several hundred thousand dollars.

Treatment consisted of pumping high doses of antibiotics into her heart for 24-hours a day for two months. She also underwent 30 days of treatment in a hyperbaric oxygen chamber."

And foot baths are a must for anyone who wants to get better.

Denise

THere are at least 2 LLMDs here in PA that charge $1000 or more for the first visit. THey do not accept any insurance. There is another that charges $500 for the initial visit. That one does not accept insurance, either. It is hard to find an LLMD that accepts insurance. I'd be the happiest person to find one that accepts my insurance, so I will keep looking...

You should post a new thread here and on lymenet.org and someone will contact you with LLMDs contacts in your area. If the dr you are talking about is using oxigen chamber, it is not cheap, so maybe that's why he came up with that amount. I don't know, but those machines are probably a fortune, so they need to charge a lot to pay for them. I don't know, I'm just giving him the benefit of the doubt. If you are not comfortable, you should keep searching for another dr.

As far as I remember reading, Brooke L did a lot of abx, not just the oxigen chamber.  As dr. B said, we are sick because we are infected and we need abx, not (only) oxygen.

Post Edited (Simela) : 9/13/2010 2:55:53 PM (GMT-6)

my husband thinks me having lyme disease is a long shot. i have researched Lyme alot and everything fits more than any other disease. i feel like i need to eliminate one thing at a time....maybe its not lyme....is it MS?? Lupus?? FMS?? i feel like my brain is going to explode....not enough hours in the day to search for doctors who might be able to help and limited funds available for treatment. i would love to take a leave of absence from work just to rest and focus on ME. but that wont pay the bills.....i get so frustrated....thanks for letting me vent on here....i dont even kow if what i just posted has anything to do with what the original post was....

ShelETN, I am surprised any doctor would suggest a treatment plan without at least doing some tests first to shed more light on their clinical diagnosis and to see what else might be of concern. In my experience, LLMD's are expensive, and I've yet to find one that takes insurance, but if the charge is $4000 for the first week of treatment, I'd sure want to know what is the anticipated cost for treatment after that? And before I'd make an appointment for a week of treatments, I'd sure want to know the long-term plan for treatment as well as what testing would be done.

I found the LLMD I see via ILADS. I believe FeelingBetterNow also can provide LLMD info. And, of course, asking on the Lyme forums will give you lots of information from people whave actually seen the doctors.

Good luck with your search.

Rose

saw my old PCP today...told her what is going on. she ordered a lyme IGM and IGG lyme titer and western blot!!!!!!! sh also is sending me to a neurologist in case it isnt lyme and she tested for west nile and gave me a b12 injection (my b12 was 258) wow what a difference!! there is hope!!!!!!!!!!!

All of this makes me soo angry.

The insurance companies the labs, it all.

Makes me wish I never ever planted a single flower

outside, *I used to love gardening.

Or even hung bird feeders, cos I would stand in the bushes.

Makes me wish I never went outside.

Shel, you are not alone, I too just want answers.

Diagniosis and just not knowing is torture.

I will be thinking about you and wishing you well.