This is topic Lyme in Texas in forum Medical Questions at LymeNet Flash.


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Posted by dal123 (Member # 6313) on :
 
Hi,

If you have Lyme and live in Texas, please go to www.TXLDA.org and enter your information via the website contact forms if you have not already done so. Please include your zip code, state whether or not if you know you were bitten in Texas or out of state but either live here or moved here after being bitten out of state. Also be sure you state if you are CDC positive
 
Posted by dal123 (Member # 6313) on :
 
CDC positive means a positive result on the Labcorp WB test. We are entering a critical phase of our work w TXLDA and accounting for all infected Texans, Bear in mind we follow HIPPA guidelines and all persons are de-identified but we need counts, ie by zip code, etc. Be sure to leave a valid phone number so TXLDA can contact you if you have any questions and or want to speak to a volunteer.

Thanks!
Dal123
 
Posted by duncan (Member # 46242) on :
 
Of course, technically speaking, a CDC positive result requires a positive on both the ELISA and WB.

Labcorp didn't use to insist on a positive ELISA before giving a WB, but I seem to remember reading something to the effect they might start. Can't have clinicians or - Heaven forbid - patients circumventing CDC protocol and thinking for themselves.
 
Posted by me (Member # 45475) on :
 
I recently had to travel to MD to get help from a LLMD. There is a new study out by Texas A&M showing that 25% of ticks in TX are infected with BB and a previously unidentified strain was identified. Thank you for putting the word out. BTW, I am a native Texan. Living in Houston. Wishing you health, peace and happiness.
 
Posted by Lymetoo (Member # 743) on :
 
I did the survey several months ago. I'm a native Houstonian living in Missouri.
 
Posted by susank (Member # 22150) on :
 
I was tested by Labcorp several times.
No bands ever showed up. Same with Quest.

I had several bands with Igenex - tested four times with them. No CDC positive tests.

I tested positive with the Adv. Lab. Service culture test.

I have not looked at the form - just wondering if
I should report since not CDC positive. ?
 
Posted by me (Member # 45475) on :
 
I did the survey. It doesn't take long!
 
Posted by TX Lyme Mom (Member # 3162) on :
 
Susan K,
Yes! Please do take our TxLDA Survey. A CDC positive test result is definitely NOT required in order to participate!

In fact, most Texans do NOT test positive by CDC criteria because we have different species of ticks and therefore different strains of Borrelia than the ones used in designing the Lyme diagnostic test kits, according to our state epidemiologist Julie Rawlings (now retired) when she spoke at our Texas Senate Hearings on Lyme Disease back in 2000.

Since then, new research at TAMU's vet school has revealed another new, particularly bad species of Borrelia in Texas ticks -- namely B. miyamotoi. This same TAMU research also showed that approx. 45%-50% of Texas ticks are infected with Borrelia in some regions of our state, based on improved laboratory analysis from what was used in earlier surveys, prior to 2000, when it was first reported by Julie Rawlings of our Texas Dept. of Health that only 2%-4% of Texas ticks were infected with Borrelia.

You might also want to join our Texas Lyme Yahoo forum. It is sometimes rather slow-paced, but it is a valuable resource for info on topics that are special to Texas, such as access to LLMDs and Lyme-related political activities in Texas. (Lyme patients from adjacent states are welcome to join also since we all share the same pool of doctors.)

We have an RN, Steve B., who is a fantastic resource person for digging up new (and old) research, especially in regard to alternative treatments for Lyme disease for those who cannot afford or who do not have convenient access to ILADS doctors.

Recent legislation in Texas (2011) has made it more favorable for ILADS and other Lyme-friendly doctors to practice in Texas without quite so much fear of retribution, so our pool of ILADS and other Lyme-friendly doctors is expanding slowly, but steadily, although we still have a lot of work ahead of us.

That's why the results of this on-going survey are so important for all Texans. We need the results of the survey for use in helping to improve access to care for Texas Lyme patients, especially with our Texas Medical Board, but also in setting our future legislative goals.
 
Posted by susank (Member # 22150) on :
 
Thanks. Trying to read this and understand.

I did the survey yesterday.
 
Posted by Laura Jean (Member # 44625) on :
 
Thanks for the post - did the survey - bit twice in North Texas. Equivocal Elisa tests twice without a Western Blot follow-up by GP. One year later had a W. Blot done and was only positive on 1 band 41KD (IGG). Clinically diagnosed by an LLMD near Austin. Recently developed Hashimoto's. Will check the TXLDA website for latests updates!
 
Posted by koo (Member # 30462) on :
 
I just did it. I love how Penn State is conducting the research. I know Texas A&M was conducting research through their veterinary school.
 
Posted by me (Member # 45475) on :
 
Let's keep the Texas survey topic alive. Texans, please, please, please take a minute to do the survey. We are possibly at a very pivotal point or on the way to one in Texas to help get better treatment and better doctors.
 


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