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

"A monkey could give better medical care"

- yes, what is with these stuborn drs anyway. They refuse to learn. Mind boggling. Other professions are not like that at all.

Denikeef said...
I don't understand the why's either.

When I started looking into why I could no longer walk normally, I kept being referred to different specialists. I was finally referred to a neurologist. He ran many tests...just like the others did and just looked at me and said he could not figure it out. He decided I should go to Mayo.

The test were run by the specialist there as well. To no avail. He just told me that there was definitely a neurological problem and he didn't know why!!! Maybe it had to do with the surgeries I'd had a couple years previously! It cost me $7000 to go to Mayo and learn that they couldn't figure it out. (They did run the Elisa. It was negative.)

It took my chiro to figure it out. He had me get the Igenix test which was positive. I finally had my answer.

For me, Mayo was not what it was cracked up to be.

Denikeef, at the risk of sounding like a conspiracy nut, it is because there is money in it for them to run those expensive tests. I went through it for years, over and over, after being infected. I've told the story of getting a fibro diagnosis like so many here, and being bounced around for years because they use these expense tests looking for conditions they suspect you have, saying they "have to rule such and such out".

You end up nowhere. That started all over again with my last relapse. I finally put my foot down and said "no more".

What troubles me, and doesn't make sense, is that all these tests cost insurance companies, and medicaid, and medicare money too. If they would get over themselves and consider the possibility of bacteria infection they would save all these payers money in the long run!

But then the recipients of all that money wouldn't be so financially well off.

This is so horrible. Person had positive test results and they refused to treat them. I respect my LLMD even more now. He was run out of his original state and is now in NYC - has the name Lyme right in his practice. He doesn't care - he will not give up. He's a lovely man.

This was said at a Lyme conference. Wish I could attach full attribution but I don't know who said it:

“Lyme disease is the growing epidemic and health crisis of the 21st century. In the fullness of time the mainstream handling of chronic lyme disease will be viewed as one of the most shameful episodes in the history of medicine.”

Good for you, Reminder!

My health insurance co sent me a letter informing me that I was going to have to go back to Synthroid because THEY have found that it's just as effective and "natural" thyroid meds. I called them up, told them they had better be recording this call - and proceeded to ask them why they hadn't reviewed my medical records to see that I had already been on it (years ago) and it didn't work for me. They then told me I had to get a note from my current doctor showing the test results proving it didn't work. I told them that was their job - my doctor had already made the determination and that THEY were not who I turned to for medical advice. They were just there to make sure I got the medical advice.

A very long story short - I've dropped my health insurance. They wouldn't cover the expenses I had, and I couldn't use it due to the increase in premiums and the deductible. I saw no reason to keep fighting with them, when I couldn't use it for much of anything anyway. My thyroid meds was one reason I was staying on the insurance.

My LLMD (Pennsylvania) can prescribe what he thinks I need, but my insurance refuses to cover more than the conventional dosages. Funny how those 2 are always VERY far apart! The LLMD office charges a significant amount to do each "preapproval" (exception to rule) paperwork and doesn't even have an idea of the odds of a particular drug's preapproval being accepted should one decide to try that route.

I think a lot of LLMDs work outside insurance affiliations because of the scrutiny mentioned previously in this thread. That allows us to get the care, but only if we can bear most if not all of the cost, which is prohibitive.

I don't think infectious disease people like diseases that don't have a nicely defined treatment...

Mayo is useless. TOTALLY USELESS! I am pretty sure that they might hunt for a SPACE ALIEN IMPLANT as the cause for these horrific symptoms before they would admit that a tickbite and active bacteria could cause prolonged suffering that 30 days of abx could not cure. Dartmouth is the same way. I have two friends diagnosed MS at Dartmouth. Both had positive lyme tests. One decided that she would start taking the monthly MS shots (tens of thousands of dollars) The other one went to a LLMD (her neurologist whispered to her secretly to be very careful about starting the MS drugs) . THe LLMD one is now totally well, all lesions gone.......feels 95%. THE MS one is exhausted, achy, has trouble with her eyes and arythmias ...... They Told her her positive elisa and WB were false positives. They would rather have her on the expensive immune altering drug than to try anything else. I don't know if my friend even understands any of this and is just trusting her doc. OF course on one mentioned the possibility that lyme can cause demyelination.

There is a place in Boston (Spaulding) that is dedicated to lyme and they do know that there is a difference between chronic and acute lyme. That is the only accredited center that I know of - probably others are out there? The doctors there are pretty passionate about the horrific nature of lyme and trying to help. The seed money for that place was from a chronic patient, young mom who got well after long term IV treatment.

My explanation of the larger University hospitals failure in lyme is that the doctors that are really treating lyme well are the ones that have been in the trenches: the renegades. It seems like the ones that lead the way had a wife or a child or a special patient that got sick after a tickbite and was not getting well. These docs had to hunt to help someone that they loved. THey have had to be creative and looked beyond the guidelines when the 3 weeks doxy guidelines have not worked. (My theory) . Or maybe they found that their patients improved when given antibiotics for another condition. - Acne, cellulitis, whatever. So they ran with that.... (doing their own research on a small scale so to speak) It was being in the trenches and caring about the patients that inspired them to look harder...Not so much at the university centers. Other doctors, integrative doctors, began to look at what was working and followed.

Maybe in describing why MAYO sucks so much tell them that the Mayo lab lyme testing misses about 50 percent of the bullseye confirmed cases. That they are sticking to older traditional guidelines that do not take into consideration the complications of the nasty coinfections, newest drug resistance, and some early investigation into PERSISTERS, cysts, and biofilms. That not everything has been discovered about chronic lyme and that Mayo likes to stick to what has been published over the past few decades. The research is not done and has not considered all angles. Money is being given to diseases like Zika (100 million) but due to poor testing, the lyme numbers are not considered dangerous enough to merit the research. When the research begins that they will find that lyme is not simple - and does a lot of shape shifting. Lyme research is still in its infancy. (Prenatal) even after 25 years.Even with Zika, the original theories have been shaken....even after just six months.

Perhaps it would be easier to explain that Mayo is really good with acute lyme (are they?) but the chronic form is still needs a lot of investigation. They are not current with what is happening in the trenches and are relying on published studies that are old, did not take into consideration new theories, or were poorly designed. Research takes years to complete. This is reminiscent of a time when doctors thought that AIDS was a GAY CANCER... and had no idea of the mechanisms for disease or transmission. MAyo is just sticking to what is published so far, not finding what works. FLAT EARTH SOCIETY.... IDSA=FES!!!

I sometimes have to laugh/cry at this thing. Here we all are doing everything we know to get better.... bathing in mustard, putting coffee where the sun doesn't shine, taking herbs that an amusing genius with a bushy white beard says to take. We are educating ourselves, becoming home microbiologists, kitchen immunologists, leaning on eachother, and just plain trying ..... We know that we can feel better. MAYO WOULD JUST SAY NO....

( I Guess I GOT MY RANT ON this morning!!)

AK,

How powerful will this feel to get through all this BS without their help......curing ourselves,we will see.

I told a Case Manager on the phone what my protocol is and She was FLOORED....every day,every hour...focused on meds,supps,herbals,home hyperbaric and detoxing....that has been my life...now I want to know how they let this go so long,turning me over from RN to RN,Case Manager after Manager....saying they will do something they never follow through.

Not just letting this go any longer.

r