LymeNet Flash: Model letters to docs who missed/refused LD dx

This is topic Model letters to docs who missed/refused LD dx in forum General Support at LymeNet Flash.

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Posted by minoucat (Member # 5175) on :

Hi guys. I'm getting ready to write some letters to docs who have refused to accept the LD dx. High on my list are 2 neurologists. I don't want to bash them; I do want to at least try to get them to understand that LD/coinfections is a legitimate and clinical dx, understand the epidemic and widespread nature of this disease, and also to recognize what tests they could (should) be using. Both relied solely on MRI and spinal taps.

There have been some model letters to docs posted here in the past, but I can't find them now -- would you letter writers repost, or post links?

Also, if you have favorite citations for neurologists, let me know. I have the Fallon and Bransfield papers, and the links on Lymeinfo; also the Stricker paper on the Medicolegal aspects of LD, and the ILADS guidelines.

The Stricker paper is truly excellent and wonderfully informative, for those who haven't read it, and is practically jargon-free -- unusually well written and understandable to non-medical people.

Thanks, moi

Posted by ConnieMc (Member # 191) on :

I did that, but don't have a copy. Wish I did.

One thing to emphasize is that you are writing the letters to educate them, to let them know that you don't want to see the same thing happen to other patients who come along with similar symptoms.

You will see more impact if you approach it like this, in a way that will educate. The doctor will be more likely to read any material you submit if he/she doesn't feel intimidated. If they feel threatened, it will end up in the trash. Their emotions will take over and they will automatically take the mindset that they were right to start with and shouldn't give you the chance to give your opinion.

Doctors are like any other human being. They simply do not want to admit they were wrong. Give them the tools to make the right decision next time that patient with Lyme symptoms walks into their office.

Posted by Aniek (Member # 5374) on :

I'm planning on writing a couple of those letters myself this long weekend. I'll post them if I actually succeed.

Posted by lymemomtooo (Member # 5396) on :

This is a great idea. Please post copies..Thanks, lymemomtoo

Posted by kam (Member # 3410) on :

I, too, am interested in a model letter. I clicked on the two web site Cave gave. The first did not come up. The second was Cheryl's web site and I did not see a model letter.

Posted by bg (Member # 46416) on :

To all of you preparing to write your drs. a letter, please include this important link:

300 OTHER medical conditions that lyme mimics!

To fibro/CFS members,
I just came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...FMS, CFS, IBS, etc.

Hope you each find some good info there.
Saw it's from Art Dougherty, Calif. in 2001.
http://www.geocities.com/lymeart3/misdiag-links.html#disease

As Connie suggested, don't make it a personal attack on them. I was furious at my docs since I was dx 7-04 after being misdx for 34 years. The 300 other medical conditions helped me to understand WHY they missed it since it immitates so many other things!

Find the page with the dx they gave you, and print a copy of that to help educate them too. Betty G., Iowa

Posted by DiffyQue (Member # 3317) on :

Minoucat,

Consider letters to their respective state medical societies; boards of medical examiners. File ethical complaints(?), at the least? Must have evidence to support complaint.

Before doing so, get copies of all your records. Get the actual medical images, if any, and keep them from being 'beamed up'
by Scotty' of Star Trek fame.

Better business bureau(s)?

I suspect one or more of your letters will go into the 'circular' file unread. No impact.

IMO: This is 2005, not 1974. They knew along, and probably have seen, and heard of hundreds, if not thousands of cases....

Posted by lou (Member # 81) on :

I sent a letter to the doc who could have saved me the suffering of the last 8 years and a life that will never be normal again. This is the first one, who saw me within a month of getting bit. My letter was not threatening and I said I wanted her to know so others would not be missed. Never got any reply.

Later,because of getting no response, I sent another letter to the head of the state medical association, also for educational purposes. No reply there either.

Have no idea if this has had any impact.

My guess is that they may not even believe the facts I presented. And there seems to be a course being taught in med school that patients are liars, or are tiresome people who complain constantly and take up too much time. I am pretty skeptical at this point about the majority of people in the medical business. Even if they want to do the right thing with lyme cases, they are going to be stomped for it.

Possibly this will change when it becomes safe to diagnose and treat lyme cases.

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