Why wouldn't I get the help I need at a place like Mayo Clinic?

You're right. Mayo Clinic does not test for or treat Lyme Disease. I had a doctor who told me he thought I had a global auto-immune disease and I ought to go to the Mayo Clinic. I have a friend who was ultimately diagnosed with Lyme, Bartonella, and Babesia, and she had also been told to go to the Mayo Clinic, she was still trying to get an appointment when she found out it was Lyme & Co, plus mold toxicity. I have read many accounts of people who went to the Mayo Clinic with undiagnosed Lyme disease and were sent home being told it was all in their heads (psychosomatic), because the Mayo Clinic found nothing wrong with them. The Mayo Clinic is not the be-all and end-all. They don't do everything. They do a lot of good work, just not for Lyme disease.

The cdc guidlines is what doc must follow to keep their licences with the state board ..which is 30 days of treatment ..even places like mayo ,clevland or mt sinai have to abide or risk not being able to accept insurance ..even with plans that cover many that go to may are stuck with bills of 20g for diagnostics to say i dont know what is causing your demylination or lesions on your brain ..and unless you happen to have borrelia mayonii i think this is what has happened to many or told they have ms or als and then destuctive steroids or chemo has been started only to have deliterios effects on immune sx and letting infections proliferate and kill us quicker while milking our $dry ..its really a crime against humanity ..thanks for asking antoninio..i want to start a real lyme center one day?...

Welcome susannah..sorry you are here ..but glad to have you ...mods will say new to lyme page however you sound seasoned in the borrelia game ?

Hi Susannah!
Welcome to our community! I'm so glad you found us.

Do you have Lyme and other infections?


Antonio - there are two standards of care - ILADS and IDSA - for these infections. We know which one we need - ILADS. There are very few (if any) large hospitals that are willing to ignore their top ID docs that follow IDSA treatment guidelines when dealing with these infections - even though the IDSA treatment guidelines are no longer on the National Guideline Clearinghouse and the ILADS treatment guidelines are on there.

Link for IDSA guidelines on the listing: /www.guideline.gov/summaries/summary/9537?

Link for ILADS guidelines: /www.guideline.gov/summaries/summary/49320?search=ilads lyme treatment

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/

Yes, welcome! I didn't realize you're new!

Thanks for the response.

:D

I dont know if it still does say this, but the may clinic web site used to say they had no doctor who specialized in lyme disease. Pretty disturbing neglect.

I have a somewhat related question: How come most standard doctors aren't 'allowed' to prescribe long term abx., nor believe in lyme. Yet, LLMD's are allowed to prescribe? My LLMD prescribes two months of stuff at a time and I can call him and say "It doesn't agree with me." And he will call in something else. I look like a doomsday prepper with how many abx. I have on hand.

Also there are some regular docs. who bend the rules. My in-laws are seeing a regular GP in a very Lyme endemic. If you tell this doctor "I think I have lyme and want Doxcy." He will do it. So how come he doesn't get in trouble?

Huddie said...
I have a somewhat related question: How come most standard doctors aren't 'allowed' to prescribe long term abx., nor believe in lyme. Yet, LLMD's are allowed to prescribe? My LLMD prescribes two months of stuff at a time and I can call him and say "It doesn't agree with me." And he will call in something else. I look like a doomsday prepper with how many abx. I have on hand.

Also there are some regular docs. who bend the rules. My in-laws are seeing a regular GP in a very Lyme endemic. If you tell this doctor "I think I have lyme and want Doxcy." He will do it. So how come he doesn't get in trouble?

Have you read the links I posted above, Huddie? They explain a lot. It has a lot to do with which society they belong to and what their business partners agree with.

I had a doc that completely believed me, but because he wasn't one of the named partners, he was not allowed to treat me for anything other than Fibro.

It's due to these controversies that we loose LLMD's as well. If someone reports them to the AMA or medical boards for over prescribing meds or whatever - they get pulled in front of the medical board in their state and have to face them. They often get hefty fines, and have to have a 'monitor' (another Doc- usually an ID doc- that has to approve of every med and dosage) that they have to pay, so it's like a double fine and it puts a lot of LLMD's out of business. There have been a few LLMD's that have had their license revoked. Some will move to a different state because their passion to help is that strong, but others will just give up at that point, understanding that they will be watched from then on.

It's all very, very political.

In 2006 there were only 12 states where doctors could freely treat lyme disease. Each year another state joins the freedom!!!

My state had a physician's protection bill passed in 2005.

Minnesota has physician protection and mandatory insurance passed in 1998, but Blue Cross took that bill to court. I didn't keep up with it. But, I did think it was horrible that the people passed a bill and then a insurance company could fight it in court. And we all know that the one with the most money (best lawyers) wins. And this is what our premiums pay for - Blech!

Well, to put my views bluntly - if "they" admit that it's been real all along, there are literally MILLIONS of people that will be filing for disability or filing suits against the doctors that told them they didn't have these infections when they really did. That alone is enough to keep many from admitting that all of this is real.

For some, I really believe they feel they "owe" their professional society or their partners respect and won't go against them, even when they are wrong. It's much easier to stick your head in the sand and go along with those that have some control over your professional life than to stand up to them and show them just how wrong they are.

Others are just hard headed and don't believe science actually changes as new discoveries are found!

My hubby's Nurse practitioner had no clue how unreliable the testing was or that 2 weeks of Doxy wasn't enough. She admitted to not keeping up with it all. I was prepared and explained everything (using terms she would recognize) and we ended up with her skirting her responsibility to follow only what the doctor that oversees her work would allow, so that he could get the 4 weeks at the right dose to heal him - and it worked. No one got into trouble, and he healed!

Huddie - Drs who are able to get away with proper treatment try their best to fly under the radar. They stay far away from being affiliated with ILLIADS and appear to practice conventional medicine from the outside.

ANY DR who has their own practice and website is constantly MONITORED by insurance companies. They are spied on to find non-conventional treatment "faults" called experimental.

I had info from a Drs website brought to my attn from insurance and they said this is a quack Dr. LLMD=Quack to insurance; .........no pay, so WE pay.

Its an excuse not to pay.
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Orthodox Cronies reference a few posts above, LOL: Old men who who put old cronie Drs on a pedestal make me laugh. They are to lazy and impatient to find truth themselves. I can say this with accuracy since I'm a man. And thats why there's few men on this forum. In all fairness, you wont find many women on car repair forums as they are more likely to "believe" "their" mechanic. Some mechanical shops are just as bad as Drs, but at least its not your health at stake.

Old Chronie "scientists" said the world was flat once, and followers believed them- people who lack the ability to think for themselves. We know how that went.

Post Edited (astroman) : 11/20/2016 12:11:00 PM (GMT-7)

LOL Astro! I got a snicker out of what you wrote about the world being flat! I usually say that to those that refuse to believe the science changes on these things!!