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My parents & family doctor friend are trying to make me go to Johns Hopkins!! Help!!! I have tried to explan TBD to them. I am in my 9th month of treatment. I almost died of ehrlichiosis, now treating babesia, then I have to go after my bartonella & deal with this lyme. My 4 year old has it too. Her stricker CD 57 was Zero! I have probably had lyme for 20 plus years and my 4 year old got it from me along with babesia.
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
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
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Vee Vee, If they are insisting that you get a second opinion, then find a second LLMD to back you up. Whatever you do, don't let them bully you or tell you exactly where that 2nd opinion has to come from.
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.
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Thank you texas lyme mom! Yes, I am of legal age. I also take my daughter to a different llmd that treats children in PA. I just wish I could explain it better. Even our attorney friend (who will take on the insurance company if needed) said the same thing to my husband. Now he is believing this bull. He knows not to confront me. He just wants me well & our little girl.
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!
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Hi Vee. Great advice from TXLM and Steve & Vic. And one more tactic...
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.
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).]
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Tom G. did say he was soon going to get a web site going again. You know if you have a friend who can help advocate for you, that would help too. Someone to be with you who is LL. I know when I am put on the spot, sometimes stress puts all knowledge out the window. It is a difficult disease made more difficult because there is so much denial, by the med establishment. I do want to offer you encouragement in that I was infected for at least 16 years and had Babesia, Ehrlichia and now am down to Lyme and Bartonella. I have a brain again, and though it is tough treatment does work. It can take a long time, I have been on IV for two years, and in and out of tx since 1996. But the last two years have been with a great LLMD and with no breaks. So that has been the most effective. I am so much better. I think everyone has offered some great advice, so keep going, don't give up, and see if some of them won't come around. Its good that you know enough to know where to get tx and where NOT to.
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First of all I want to really extend my MANY, MANY THANK YOUS TO ALL OF YOU... TX LYME MOM V. OWENS MINOUCAT ONCEBITTEN LYMETOO
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
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