Lyme Disease Support Group

I've heard that Mayo is like most ID docs, when it comes to chronic lyme. Columbia (Dr. Fallon's group) would be a better bet, depending on symptoms, IMHO.

Two things. First of all, my last negative lyme test was sent to mayo clinics lab. Two weeks later I sent a test in to Igenex. Mayo's was negative, cuz they use the CDC standard, and Igenex was double positive. So I assume they follow CDC guidelines.

Secondly, get on their website. Do a seach for lyme disease, and see what they say.

If your dad is talking to drs who don't think it's that big of a deal, then he is getting the "other side" of the story.

Personally, I would stick with my top of the line LLMD anyday. Maybe print somet things up for your dad to read, about how long others have been treated and things you feel can help him understand. Maybe you have already done that! Wouldn't we ALL love to feel better, the sooner, the better!

Hey,
Check out my post on the Fibro and Fatigue Centers...it may be a great resource for you!
Lindsey

I agree with iwillovercome. she amkes some really valid points that I agree with. One thing I have learned fighting this for going on 15 years is you yourself can never do enough research. If I hear something and want to know about it I aslo come on here and ask of course but I also get online and ask my LLMD too when I go.
You have to remember alot and I mean alot of people think that Lyme disease is nothing. Let them live it for 1 week and they would feel different but I have learned to automatically assume that most people think i am faking or I am wanting attention.
You know what you feel and as long as you feel that your doctor is on top of thing then I wouldn't worry. I made a post a little bit ago with a book out now that has the protocols of the top 10LLMD and I feel pretty good becuase i know that My LLMD is pretty much treating me and my family along the same lines as them.
I also know it is a big desicion and very frustrating. I wish you much luck on whatever you decisde:)

I think it depends on your relationship with your Dad. There's nothing my Dad likes doing better than telling me he knows better when it comes to medical matters. If I had to deal with him on a regular basis (or even just holidays and such) I'd probably defer to his "wisdom" more often. But I don't, so I usually don't ;-) On the other hand, if he wants to pay for a very expensive second opinion and I know he won't be able to lord it over me, what the heck?

Just my .02...

-FM

Just found out that the mayo is referring patients to my local LLMD. I also see an out of state LLMD so I guess I got it covered

I wish you much luck and hope that you can get the treatment you need. We are all in this horrible boat together and at least it is nice to know that you are not alone.

If your father would be happy to pay for MAYO, then why not? If he can afford it & really wants you to go, and you wouldn't feel guilty about it.

When I first found out we had Lyme, I checked out info on their site and wasn't all that impressed. But it would be interesting to get their take on Lyme nowadays.

There is another aspect to this that may be beneficial besides what they have to say about Lyme- my husband was referred to UCSF and a top rheumatologist when he became ill (because our local docs were bothered/puzzled about what was wrong with him). Although they gave him the ELISHA test (false negative), and he didn't get a Lyme diagnosis from UCSF, they did test him for just about everything else possible.

So, it was great to find out he DIDN'T have lung cancer (for some reason doctor was very suspicious of that), didn't have giant cell artiritus (sp), didn't have rheumatoid arthritis, and so on & forth.

He DID find out he had Barrett’s Esophagus, due to his GERD (and that is likely caused/aggravated by the Lyme)- it is a pre-cancerous condition in which the cells lining the esophagus change into the type of cell found in the intestines. This can lead to esophageal cancer- very bad and easy to miss in the first stages. So, he will due a procedure for that when he's done with the Lyme. But he never would have known otherwise.

First of all, I am sorry that you've been sick so long. A lot of us know exactly what that feels like. And yes, it's frustrating. Unfortunately, the longer you've had Lyme, the longer it takes to treat it. It's mulitplied and crept into the pits of your body, it takes a lot to get it out of there. Talk to your dad, let him know "our" side of the story. Let him know that those docs will probably dx you with some auto-immune thing and treat some symptoms and NOT your disease, therefore you will never get better.

It's best to stick with the LLMD. I know it's a hard long fight, but going to more IDs will only make it harder and longer. Good luck to you.

Just sent my dad a copy of under our skin to help him understand. Also met a woman at my LLMD who went through mayo 3 times and finally ended up at my LLMD and he diagnosed her with lyme and she is improving so she took this info to her case manager at mayo and they have since sent a few patients to my LLMD.
I guess that takes care of all angles of that question.