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
Posts: 532 | From Texas | Registered: Oct 2004
| IP: Logged |
posted
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
Posts: 532 | From Texas | Registered: Oct 2004
| IP: Logged |
posted
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.
Posts: 228 | From Unitied States | Registered: Jul 2015
| IP: Logged |
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
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.
Posts: 1431 | From USA | Registered: Mar 2015
| IP: Logged |
posted
I did the survey several months ago. I'm a native Houstonian living in Missouri.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
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. ?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I did the survey. It doesn't take long!
Posts: 1431 | From USA | Registered: Mar 2015
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
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.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks. Trying to read this and understand.
I did the survey yesterday.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
posted
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!
-------------------- Infected 2012&2013. Diagnosed Sep2014. 7 weeks abx,then Samento,Banderol 7 mos, then MCBB-1 drops since July2015. Symptoms heart beat skips,arrhythmia,imbalance,muscle spasms. Posts: 35 | From North Texas | Registered: Sep 2014
| IP: Logged |
posted
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.
Posts: 478 | From Third Coast | Registered: Feb 2011
| IP: Logged |
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
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.
Posts: 1431 | From USA | Registered: Mar 2015
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic