This is topic help advocate in TX? in forum Activism at LymeNet Flash.


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https://flash.lymenet.org/ubb/ultimatebb.php/topic/8/3422

Posted by Kristina B TX (Member # 51981) on :
 
Hi all,

My friend BettyG suggested I may have luck in here gaining support for activism in Texas. I have treated Lyme and coinfections for 7 years after going 36 years misdiagnosed. My four kids got it from me and we are all doing much better!

I began advocating 3 years ago and since resigned from working with the other two groups in TX and looking to make headway with legislating in Austin in the 87th session with my own advocacy group. There's so much more that needs done in TX and beyond than the current help available.

If you're interested in reading more about my group feel free to go to www.TexasLymeAlliance.net and click "sign up" to join my newsletter for additional information on how I am attacking the lyme epidemic from DC, to the CDC in Atlanta, and back to TX head on.

From the efforts I've had already the TMB and TMA are saying there's no problems been reported with getting treatment for lyme although we all know better across the nation. We need to get organized and reach all of our officials soon so they know we need their help this session.

I'm new in this forum so please reach out if I've violated any rules.

Thank you for providing this place to share, learn and meet other like minded advocates and patients.

--------------------
KMBauer
 
Posted by TX Lyme Mom (Member # 3162) on :
 
Kristina,
I didn't see this second topic until just now, and I'm assuming that you didn't see my response to your first topic when you posted this duplicate message as a second topic. Therefore, I will copy my first response here again (below) for your convenience:


Kristina,
I've been active here in Texas since 2000 when the late state Senator Chris Harris held a series of state hearings on Lyme disease in Texas. Our TMB at that time had been very aggressive towards LLMDs, and we eventually succeeded in passing protective legislation for our LLMDs in Texas.

We now have 5 ILADS LLMDs in Texas -- 3 in the greater Austin area and two in Houston, but none in North Texas after our most experienced ILADS LLMD retired in June of this last year. I suspect that's why you are having trouble getting treatment in your part of the state -- although there is a Lyme-friendly doctor in the HEB/ Colleyville area.

You would do best to commute to see someone in the Austin area. I can send you a list of names by PM if you are interested.

Also, we have a TxLyme Yahoo group which was formed way back in 2002 which is relatively inactive now, due to lack of interest. However, I suspect that the reason for this lack of interest is that ever since net neutrality was repealed a year or so ago, Lyme disease no longer shows up on Google and/or other internet searches, like it used to, due to political bias against this diagnosis -- which is NOT a state issue, but a much larger national (and probably international) bias against Lyme disease.

We also have a Texas Lyme Disease Assn. which is relatively inactive now also -- mainly because most of our political goals have already been achieved here in Texas.

The biggest problem now, as I see it, is with the larger national and international political bias against Lyme disease. Unless internet net neutrality is once again re-instated, then I'm not sure how far you will get in trying to advocate for Lyme disease on a statewide basis.

Even Lymenet has become relatively inactive in recent years -- again due to the repeal of net neutrality, which I don't really understand very much about. There was another topic here at Lymenet recently, if I can still succeed in finding it. (Scroll down to find the message posted by Dan455)
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/38223?#000014

I think we probably met (in the cafeteria) in Austin at the Sunset Hearings on the TMB a few years ago. Your name looks very familiar to me.

PS -- Please reply here so that I'll know that you have seen this response.
 
Posted by TX Lyme Mom (Member # 3162) on :
 
Kristina,
Here's an important explanation about net neutrality which accounts for why Lyme disease is being deliberately ignored now by TPTB (the powers that be). Let me refer you a message posted by Dan455 about net neutrality under an older Lymenet topic:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=038223;p=0#000017

Dan's message is too lengthy to copy and paste here, so just click on the link above so that you can see his comments about net neutrality within the context of that topic.

Basically, Lyme disease does not show up on the first page of search results anymore because it is being deliberately censored by powerful political and economic self interests now because net neutrality is no longer in effect.
 
Posted by Kristina B TX (Member # 51981) on :
 
Hi there,

Thanks for your responses, I did see them! Thank you for all the information. We have a very good LLMD in Arlington that's been wonderful in treating my family. He is not taking new patients at the moment but I know that Dr F in Spring TX by Houston is doing a great job for patients.

We may have met in Austin, I'm not sure and have met a lot of great people along my journey. There is a lot of work to be done in Texas yet to get people properly trained doctors willing to treat this complex disease. 5 in the state is a crisis and that's a lot compared to other states who have none.

I got on here for one reason: to gather up some people like yourself who are passionate about helping Lyme patients so we can open the door up to better diagnostics, treatment and eventually insurance coverage. Advocacy for patients is really needed in our state. With the next session about to start, now is the time to start calling our representatives and letting them know Lyme is in TX and we are not getting the help we need in properly trained doctors.

Every other disease has specialists like oncology but there is not one for Lyme patients currently listed today.

Will you and others help get Lyme in discussion among our representatives?
 
Posted by TX Lyme Mom (Member # 3162) on :
 
Kristina,
Check your PM.
Sorry I didn't see your message until just now. i had been watching for it for a week or longer, but then I gave up. It was only my sheer luck that I found it just now.
Check your PM for my phone number and e-mail so that we can continue discussing plans for political activism and advocacy in Texas.
 


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