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Posted 3/6/2017 1:57 PM (GMT 0)
Why is the treatment (and treating professionals) for Lyme disease so secretive? I am having a very difficult time finding someone in Tampa to assist me. I checked out LymeDoc.org with not much success. Just curious what the issue is that I am obviously missing... Thanks!
Posted 3/6/2017 2:15 PM (GMT 0)
Hi, Frosty. Welcome to the forum and glad you found us.

If you post "Need a LLMD in Tampa"in the subject line and have your email enabled, members will email you their doctors. We don't like to put doctor's names in the forum because some states are very political about Lyme and treatments.

If I might suggest you read the "New to Lyme?" post. It has a lot of information that may be of help.
Posted 3/6/2017 2:34 PM (GMT 0)
Welcome, Frosty. This is a great place for support, advice, and information! Hope you'll be able to find a LLMD soon!
Posted 3/6/2017 2:40 PM (GMT 0)
Hi Frosty!
Welcome to our community! I'm glad you found us.

As Cr3ativegirl said, if you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

​ And, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​​

​ I hear what you are saying about the Lyme literate doctors (LLMD's) - it's as if they are in an underground network. But that's because they have been forced to be there. Why? Because the CDC and the medical boards refuse to allow them to practice medicine that doesn't include them strictly following ILADS ​(International Lyme and Associated Diseases Society)​ treatment guidelines for these infections instead of the highly faulty and misleading IDSA treatment guidelines. The LLMD's get brought up on charges in front of medical boards, and end up either losing their license or have to hire an ID doctor to oversee every treatment decision (so back to IDSA treatment guidelines), and it usually ruins them financially - so either way they are out of business.

This is not because the ILADS treatment guidelines are wrong - as a matter of fact, they replaced the IDSA treatment guidelines in the National Guidelines Clearinghouse with the ILADS treatment guidelines, so this should not be going on at all - and yet it continues. No one can find a clear answer for the reason why, unless you delve into the assumption that they have something to hide. But, that's a story for another thread.

Here's some differences between the two though:
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/


For information on finding a​n ILADS trained​ LLMD in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact information to be posted on the forum. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

You can start a new thread titled something like "Looking for LLMD in the ​​
(insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals

You can 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​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Posted 3/6/2017 4:03 PM (GMT 0)
Well, my opinion on the subject is that "they" do not know much about lyme and they only know what they have read or heard. Most of their information is from the Center For Disease Control or medical books or studies written.

I have medical personnel in my family and you should hear what they say -- The one brain injury nurse said "your lyme disease sounds more like a virus than a bacterial infection." My oral surgeon said, "so you took antibiotics and you're over it." My neurologist said to me, "you don't get a headache with lyme disease."

They just are not educated in lyme. I personally think that if you have lyme for 6 months you probably know more about it than most non lyme literate medical doctors.

It is getting more attention as more and more people get it, especially when well known celebrities get lyme disease.

It is sad that medical schools are not teaching more about it.

Thank goodness we have some great people writing books about it!!!
Posted 3/6/2017 4:21 PM (GMT 0)
Wow! Thank you all for the welcome, and the information! I enabled my email, so I am going to post for an LLMD in my area. I appreciate all of your feedback and support! I have learned SO much just from the short amount of time that I have been on this forum. Thanks again!!!
Posted 3/6/2017 4:28 PM (GMT 0)
I think you will find lots of useful information on here. Many ways and things have been tried. But ultimately treating lyme is a very personal endeavor. No two people are alike. We even have twins that are taking different treatments.

I wish there was a magic pill all of us could swallow and *poof* lyme is gone. But it just hasn't come about YET. I'm an optimist!!

I think the hardest thing for me was that lyme is not like a cold or flu. It isn't completely gone in a couple of weeks. I had a hard time with the length of treatment that is required.

But, we all have our own individual challenges with lyme disease. It is a true blessing to come here and bounce those things off of each other.
Posted 3/6/2017 4:44 PM (GMT 0)
We are certainly glad that we could be of help! Each of us here have had to go through this process and understand how hard each step can be. Hang in there! And be sure to ask questions - lots of questions - if you don't understand something or just need more information - we have a most wonderful group of "citizen researchers" here!
Posted 3/6/2017 8:52 PM (GMT 0)
Frosty: You have to follow the money. Some IDSA members have financial interests and liabilities due to research they were involved with. Insurance companies can - and have - sued drs for fraud and malpractice for not following the medical board and IDSA/CDC guidelines. The neither the CDC nor the IDSA have legal recourse against a dr, but the medical boards do, so when they punish the dr the insurance companies follow. So many, if not most, llmd's don't accept insurance payments directly, they force the patients to pay cash and then file for reimbursement to protect themselves. Naturally any discounts that an insurance company would usually extract from the dr is subtracted from the reimbursement (if any.) While some feel that this is an organized conspiracy, I think it is more of arrogant hubris, greed, and disregard for patient health.
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