It has recently come to my attention that something called the "California Board" has posted emails that some of us thought we were sending to an individual seeking referrals to LLMDs when we were at the very outset of discovering what in fact was up w us.

I know I for one shared specific details of my case and signed my full name, all of which is now posted and anyone who googles, yahoo searches etc my name can find this personal medical information publicly posted for the world to see.

This was done without my authorization or informed consent. I consider it to be outrageously unethical and inappropriate.

I don't know if anyone can tell me how to reach the site or its webmaster. Another very unethical thing about this site is that there is no "contact us" no "webmaster contact" nothing. No address or phone. No contact information at all, except the addresses, email addresses and phone numbers of some witting and unwitting patients.

Even Insurance Companies and doctors protect our private medical information.
We try to protect our doctors names. Who would do this??????????????????? And how do we fix it???????????

Pomegranite

 

Oh my gosh, I am in California (Alameda) and am not aware of the "California Board". It sounds like a horrible thing has happened to you and hope that others will pay attention.

I am concerned because I have just emailed a few folks that had asked for referrals in the Bay Area and would hate to think that sharing good information could turn into sharing of my private information.
 

Carol Ann
 

I prefer to chat with someone to try and get a feel if they are a genuine Lymie.
 

The web address is above

Pomegranite
 

I don't quite get it. Some of these people seem to be willingly sharing their experience. Do you think any of them knew how this info was going to used??

I copied this from the site:
"some post doctors names some don't
all doctors names are on the internet at the American Medical Association
site give names, addresses, phone numbers, date of license, where lic. came from
what school they came from, specialty, rectification. There are many other sites
you can get Doctors information by law it is public knowledge.
Regardless of that I have made contact with several doctors east and west coast
and none have have ever said they do not want the information made public.
We are in the habit of giving out the information on a person to person basis
and will never refuse anyone with that information."

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 

I'm quite sure that many people had NO idea that this information would be publicly posted. I ABSOLUTELY did not and believed that I was just contacting a helpful soul as I was trying to sort out what was happening to my body. Somebody who could direct me to a doc. And I believed I was having a personal and private email conversation.

So I'm sure that is true of others as well.

Pomegranite
 

Or at least that is what my lyme brain can tell. Did they contact you?

I will still give info because I know when I needed it, I really needed it.
 

Your Question was about the ones who seemed to be willingly sharing their experience.

Yes that's why I said witting and unwitting.

I think that the person who posted this California Board, posted to it emails s/he received that were intended to be public along w emails that were intended to be private.

I believe s/he called for people to share their stories and then posted information both from people who responded to that call and who therefore were willing participants in sharing their stories and from those (like me) who thought they were just seeking information in a private conversation.

Pomegranite
 

I do see an LLMD in Cali and one in NY now.

Its been nearly 3 years since I sent that email.

The odd thing is that it was only recently made publicly available.

Pom
 

So hard, I am sure our docs are known for treating lyme, I mean with all the insurance, disability forms etc. the perform.

But our privacy as patients, well that needs to be protected.

Again, sorry but keep the faith that others who contact you need help.

You can shut it down real easy. The person is using some small server space on his internet connection account with (Southwestern Bell) SBC Internet Services (http://public.swbell.net).

So call SBC at the number below, and tell them that this person (give them the url address: http://home.swbell.net/dsny1fan/Californiaboard.html) is publishing private info. without your permission. That would be against their terms of service and they'd shut it off.

It's likely his account name is "dsny1fan".

SBC Hours:
Weekdays from 8 am to 6 pm and Saturday from 8:30 am to 5 pm
Service Center: 1-800-310-2355

 

[email protected]

The link to the main page is:
http://home.swbell.net/dsny1fan/LymeDisease.html

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You may email them the address of the offending website and your concerns.

https://home.swbell.net/pagetools/cgi-bin/homebase.cgi
 

That's pretty lousy that this showed up 3 yrs later!