oops! Lymetutu
I am NOT going to any institution!!!
Can anyone help me try to explain this to them. They say well then it shouldn't matter to get a second opinion!!! "You've been on antibotics too long."
I am fluster & p@#$%# off at the same time.
I have been improving. As we all know dealing with lyme is up & down. They just don't understand this.
Sorry to vent on all of you. Anyone with suggestions I would be greatly appreciated.
Vee Vee
Take the lead here by agreeing with them that a 2nd opinion sounds like a good idea -- but not until you've already lined up the closest LLMD to provide you with that valuable "2nd opinion".
Play along with their game, but you help establish the ground rules here. NO to Johns Hopkins! Only ILADS doctors. Get it?
I'm assuming that you are of legal age to exercise your own independent judgement here. If you are still economically dependent on your parents, then you are probably going to have to try to elicit the help of your family doctor regarding your intentions. He might decide to back you, if he sees how determined you are. Let's hope he does.
Hey texas Lyme Mom, Have you read the "Expert Review of Anti-infective Therapy" from ilads?
I did get a copy of this and maybe if I need to throw it infront of my doctor friend I should.
Don't worry about Hopkins, No Way am I going.
I know people at my support group that have been there and it's bad.
I need to re-read the camp A & camp B thing again I guess and use it.
I HATE CONFRONTATION!
Thank you. Vee Vee
The best way is to have everything ready
befor you push back and ALWISE PUSH BACK
WITH A SMILE, after all you want their help
not a fight.
Goodluck, a smile on your face when pushing
back, then your eyes will sparkle.
Steve & Vic
Vee Vee
I've found it works wonderfully well to memorize a few salient names and facts and institutions and fancy wording. (write it on the palm of your hand, if you need to, or on a paper that you keep in your wallet).
Then you can say, "According to the research by Drs X and Y at Institution Z (or ILADS), the etioliology of this disease suggests that...." Then say that you will, of course seek a second opinion, you've already done the research on who to talk to, and you really prefer to see the experts in this particular disease, who are involved in ongoing, peer-reviewed research into this specific disease, and who have hands-on experience with thousands of patients with this disease.
Print off a few articles by Stricker, Fallon, ILADS etc. and hand it to family members. Tell them that this info is the latest and greatest in peer-reviewed LD research, presented at symposia all over the world, and you're soooo excited that the 2nd opinion you're going to see is keyed into all this. And you're sooo glad your family is supportive of you continuing to get the best possible medical care.
And of course John's Hopkins is a wonderful institution but their focus is a little different and gee whiz, you really do believe in going to someone working with the top researchers in your specific area of need in this case. Right mom, right dad? I mean, you wouldn't go to a specialist in copyright law for real estate case, even if they were the best copyright lawyer in the world, would you?
As far as the ILADS stuff -- yes, indeed, share it with your doctor friend. It was the first piece of info I gave to our local MD who is not an LLMD but who is willing to be convinced if the research is scientifically sound. He really liked the ILADS paper, knew of and had respect for the authors, and it helped convince him that we, and our LLMD, were on the level.
On the ILADS site there are a couple of essays by MDs with Lyme, and their frustrating journey through medical land. That might help too.
The wonderful part is that your family obviously cares and is rooting for you. Be sure you acknowledge this to them fulsomely. It's incredible how much it helps just to hear someone say Thanks, you're so great, I know how difficult this is for you, too, these are tough decisions.
There's a lot of good FREE ammunition available to. One of my favorite websites is:
You'll need lots of computer paper and plenty of ink to print out copies of all of their wonderful Medical Documents, all of which are professionally formatted with reference citations. These documents are very impressive to say the least.
Lastly, if you can find any of the older articles by Tom Grier, which used to be posted at the Lyme Alliance website, which is no longer available. However, I do recall that Lonestartick posted some of them a while back for us. I'll try to search for those topics and post the links for you next.
Yep, found it....here 'tis, below, copied and pasted from one of Lonestartick's earlier posts. I'm hoping that it will post OK and be "clickable".
....Links deleted.....
PS -- Uh, oh. Didn't work. I'll have to keep hunting to try to find this valuable info by Tom Greer for you.
[This message has been edited by TX Lyme Mom (edited 02 May 2004).]
will this help any??
Hopkins misses Lyme diagnosis http://flash.lymenet.org/ubb/Forum1/HTML/024548.html
------------------
oops!
Lymetutu
You all have very excellent ideas and I will start printing material out for everyone.
I know my brain does not want to work properly and having an advocate and documented material will be of great help here.
Thank you again and take care.
I am wishing everyone a speedy recovery this spring. Bye bye, Vee Vee