Mayo lyme test

Hi Gang,

I am back up in Ithaca, NY after being in AZ for 5 years.

It's a big college town and has a great school system.

It's a beautiful area of upstate NY. Yes, we have deer and all kinds of
great wild life. At my old house they were all over my property watching
ME through the windows.

Cornell University and the Cayuga Medical Center are supposed to be pretty on
top of things.

There is NO LLMD here.

I waited 3 months to get in to see the Rheumatologist who I was told treats lyme.

The day I went was one of the best days I've had in long time. I was feeling good mood and balanced in my walking. No PAIN. on low dose pain meds.

I tell this doctor I have chronic lyme and am really dealing with the damage of years of no diagnosis .............................WHAMMO!

The eyes rolling in his face along with the tilting head and his mouth twisting. Looking at me like I am a complete moron of a lyme story teller.

I have 5 pounds of tests in my bag.

I told him I was diagnosed in Seattle and his answer was.

'THERE IS NO LYME IN SEATTLE". "WHY WOULD THERE BE LYME SPECIALIST IN SEATTLE?"

Then he asks, " What makes you think you have been exposed?
(again with the tilted head and facial expression.)

I told him. "Grew up on Long Island, camping and beach every summer, house on FIRE ISLAND. and the big red infection in 1994 that a doctor gave me a week of abx for and cut something out of my leg but never said anything about what it was and all the symptoms after that.
Plus all the younger years of health problems.


This doctor was over 60 and supposed to be the wizard rheumi here.

I sat there and watched him in all his know-it-all-ness tell me he does not trust Igenex lab. "They were given same blood to test twice and came back with different results."



I think the expression bad bedside manner is really "arrogance" which is
a directly related to lazy ignorance. Either way every doctor has to be held accountable for his interview with patients. For his Advice and for his MIS ADVICE.


Now I am there having to protect and prove my diagnosis showing him all my labs and medical history and the credibility of the lyme doctor in Seattle.


Now he says. "Even though I know this is a waste of time....I want you to take another lyme test, even though I think it will be a waste of time."

I said.."Then why would we bother to even do the test.?" "It makes no sense to me what the purpose of you having to say this THREE times already that it is a wast of time."

"Can you just tell me..WHAT is the purpose of having to add in EVEN THOUGH I THINK IT IS A WASTE OF TIME>"? "AND WHY would you waste all the money for a blood test and everyone's TIME to do a test that you KNOW is a waste of time?"

I had to look him straight in the eye and ask.."Why would you tell a patient this.?"

I didn't think of it then but it really was to cover his ass

I said.."OK... you are right." " So it's not lyme then what is it?? "

" I just gave you all my blood work. And my symptoms. Your are THE DOCTOR."
" Forget all the YEARS of trying to figure this out."


"In fact, just hearing what you have to say has cured me of the lyme notion."

" So now I don't have lyme..you tell me what is going on.??..What about the EBV? Do you believe those test results from Quest? Do you believe in that? What is the treatment for that?"

"What is the reason for 40% hearing loss in one ear?
"Why do I need HEPARIN to keep my blood from being so thick?"

"Why can't I put my feet on the floor from all the pain."

"Exhaustion? what can you tell me about that?"

The EBV he had no answer for and said there is no treatment.
His answer to everything was to see a pain management specialist.

He said that some people have pain syndrome and really do need pain medication.

And he blamed my elevated rheumatoid factor on Hep C.


I told him that lyme is diagnosed like rheumatoidal arthritis. You can not go by blood work. You have to be seen by an expert. This I was told by the last Rheumi I saw after a neurologist referred me there because of the blood work.



We went around in circles for an hour. He did the physical check up by pushing my legs and hands in all different positiong. I did great with the motion testing but by the time I got to the parking lot i felt like I had a pinched nerve in the base of my neck.

Something got all messed up from all the pulling and twisting and tugging. My whole spine was out of joint and it was coming from deep in this one spot
just below my neck in the back.


The question is......What is so special about the Mayo Clinic western blot
test and what would it even show for someone who has been infected so many years.



The other question is.......Why should this doctor get away with this way of practicing medicine?

Where is the accountability here and who is in charge of educating these doctors.

why doesn't this guy have on his desk a complete report on the seriousness of Lyme in upstate NY and Seattle for that matter.

Should I send him 5 lyme books.

Why do these doctors get away with discrediting all the lyme doctors out there.?

Anyway, what is special about the mayo western blot test and what is the copay after medicare?

It's true.He never did share what medication or treatment put him in remission. Isn't he doing much better.?


We need to make up a new name for lyme because no one wants to touch it.
OR call all the lyme patients parkinsons patients and let them take it from
there with research trying to find cure for all these infections and just remane them.

I still can not believe tha a ahead rhumatologist at a big Medical center in
upstate Ny that there is no lyme in Seattle and there is"ah, a little bit here in upstate NY."

I am not paying him his copay and instead buying a couple lyme books and having them dropped off in his office.

From now on any doctor that wants to be an arrogant condescending
creep I am not paying their copay and letting them know that the
facial expressions he gave me through out the interview are not considered billable advice or diagnosis.

Mmm. I actually 100% believe that a doctor in one of the "big" or "famous" clinics was an a**. My relatives in New York (my Uncle is a Internal Medicine specialist at a huge private clinic in New York) keep telling me I should go to the "real" specialists- in New York. Now, I know there are LLMDs in New York, but I'm pretty sure the people they want me to go to are the people who make the treatment guidelines- which means they aren't just uninformed or afraid- they are the entire problem with lyme disease. So nope, not going.

Anyway- I am guessing your doctor was just going to do a standard Lyme test (western blot, Elisa?) through the Mayo clinic. And as for how a doctor at a very reputible clinic was so terrible- I think with Lyme disease the more main-stream famous (aka not Lyme famous) the place is, the less likely they will be to help.

I had my GP in the city where I live- which is very close to the mountains, where we see ticks all the time- and who knew I spent a ton of time in BC where EVERYONE (including the quacks who AREN'T in BC, of course) agree there is Lyme- tell me he had no idea where I'd even find a tick.

I am a bit worried that my newest doctor has some similar advice in store for me tomorrow...grr.

Anyway- don't waste your time with doctors like that. Unfortunately, many of us live in places where there aren't LLMDs nearby. If you can afford it, travel to one. If you can't, keep looking and keep fighting