Texas Senate Hearings

[Guest guest]

Good going Pepi, Thanks for the information, hope you get the rest you need.

I know what's it like, you do one thing out of the ordinary for you, since

getting Lyme, and you pay for it for at least the next 3 days. Hang in

there. Vicki, MD

>From: " Pepi " <rod@...>

>

>Sorry I haven't gotten back to Ya'll sooner, BUT, that trip nearly killed

>me. I drove with my mom 3 1/2 hrs each way, trip back I went through a

MAJOR

>supercell thunderstorm (tornado, hail, winds) and by the time I got home I

>told hubby to just shoot me if I ever thought of doing that again! I guess

I

>have finally realized how bad my Lyme is, a couple of years ago that trip

>would never have fazed me. anyway....

[Guest guest]

Hi Pepi,

I heard about that storm, DenimLD reported it too on the Lyme newsgroup,

glad you made it to and from safely, except for your sheer exhaustion. Tell

your Mom we all appreciate her riding with you, not a trip to take alone

when you are as ill as you are. You did a good thing going there and

speaking for us all, not just the state of Texas, good job with your

testimony. Looking forward to hearing about the next one in May too.

Hugs,

Marta

>From: " Pepi " <rod@...>

>

>Sorry I haven't gotten back to Ya'll sooner, BUT, that trip nearly killed

>me. I drove with my mom 3 1/2 hrs each way, trip back I went through a

MAJOR

>supercell thunderstorm (tornado, hail, winds) and by the time I got home I

>told hubby to just shoot me if I ever thought of doing that again! I guess

I

>have finally realized how bad my Lyme is, a couple of years ago that trip

>would never have fazed me. anyway....

> Sen. , the Foreman of the group, has LD as does his son.

>His son got immediate treatment and is fine. could not get treatment

>and has suffered for it, major heartattack and both shoulders replaced plus

>all the regular LD B.S. He backed the Med examiners into a corner asking if

>any Drs in TX had been 'witch hunted' they looked him in the eye and said

> " NO! " wrong answer, had my LLMD there, his license was suspended in

>97 for 1 1/2 years (maybe probation? cant remember) Also Dr B was there and

>gave great testimony as to the need for immediate treatment, even if LD is

>just thought to be the prob.

> Many people gave testimony on their horror stories as did I. Most had

>prepared statements, as did I but I decided to just speak and not read.

Some

>might have seen this as a mistake, I didn't make the points I wanted to but

>my rambling, babbling and inability to follow what I was saying made a good

>point in itself. I will go to the next hearing and read my testimony and

>point out why I didn't this time.

> I know that many people realized that LD is not in our heads and

>Chronic LD is out there and in some " in here with us " lol! By the way, I

>made the statement that I was " Ticked off " never realized what I said until

>afterwards! well, back to the couch to recoup, I am still fried and very

>very sore. Pepi

[Guest guest]

Well folks, wish us luck. Rose and I are off to the second Texas Senate hearings on tick-borne disease awareness. We hope to meet Pepi, , , and the rest of the gang. I will make sure that Senator receives all the hugs, kisses, thanks and well wishes that everyone wants sent his way.

Below is the oral testimony I hope to give. It'll be on my web site as "Texas Lyme, Round 2."

===========================================

My name is . I prefer to be called . I reside in Euless, Texas. It is believed that I acquired Lyme disease in New Jersey at six years of age, but was diagnosed with everything but Lyme until 1996.

I would like to thank the Texas Senate Committee on Administration; the Senators and all the staff, for their hard work in organizing these vital hearings, and in allowing me to testify here today.

I am also appalled that once again, Lyme victims are reduced to testifying, rather than being treated. This is decidedly a sympatheic Committee, but Lyme victims should not be reduced to this. Our lives once held promise, now we are reduce to begging for promises. As a body, we were classic overachievers, above average in intelligence, above average wage earners, highly involved in our schools, churches, families and communities.

Because of our disease, many of us have gone from tax-payors, to tax-eaters.

For over 20 years; after all the studies conducted, after all the testimony produced, after all the horror stories tearfully recited, after all the heartfelt promises, after all the multi-millions of tax-payor dollars spent, the only thing that remains to be done, and we will never see, is to conduct Nuremburg-type trials for the insurance companies, the independent reviewing consulting doctors, and the university-based researchers that have been withholding and denying treatment from Lyme victims. It has progressed to the point where, on May 3 of this year, US Senators and Representatives have officially called for an official investigation by the GAO within all the HHS agencies concerning spending and doctor investigations.

Why do I make this call? The United States is a signator of the United Nations Protocol on Human Rights. In the Technical and Biological sections it tells us:

"It is a human rights offense to be denied treatment for an illness if that treatment effects some improvement in health until a cure is found for the disease."

It is a civil rights offense to actively intrude and cause denial of treatment from which some measure of improvement can be noticed.

We are all told that there are two sides to Lyme. The easy-to-treat side seeks to dismiss the walking zombies with derisive labels; they never seek to diagnose or cure. They state there is no evidence that…..

And yet, following what some call "adequate treatment," even following years of treatment, biopsies and autopsies have found active spirochetes in the skin, spinal fluid, synovial fluid, blood, ligamentious tissue, muscle tissue and iris tissue. In short, despite what the "experts" call "adequate treatment," the causitive agent (Bb) has not been eradicated.

In scientific studies, there are also two side to a hypothisis, the objective and the subjective.

The objective side does indeed tell us, there is no evidence that….

The subjective side tells us, it cannot be ruled out that….

When you lay a quarter flat on the table, you cannot see the side of the quarter laying flat against the table. There is no visual evidence that there is a design on the hidden side of the quarter, yet it cannot be ruled out that there is a design on that hidden side of the quarter, because experience has shown us that every time we pick it up and look at it, there has been a design there.

The same holds true with long term antibiotic therapy. We are told "there is not single study that…." However, there are thousands of documented individual cases in which each case benefit was derived from long term usage.

In the absence of proof of eradication, we must take the proof of benefit.

If we take as proof of wellness the patients oral testimony, we must also take the patients oral testimony of un-wellness.

Doctor fears are real. As paraphrased from the "Book of Moses," when you make a statement that you know is wrong, it is a lie, remember?

A prominent member of the Texas Board of Medical Examiners has stated "There is no Lyme in Texas." This was after the US Army, with the cooperation of the Texas Department of Health, in 1991-1992, as mandated by law, performed and published their studies saying there is Lyme in Texas. The Texas Parks and Wildlife Department also had performed and published studies saying there is Lyme in Texas. This was after ethical physicians and laboritories had found Lyme in Texas that satisified the CDC case definition and reported the same.

One must wonder, in the presence of these truths, why someone of such prominence on the Texas Board of Medical Examiners would utter this lie? Although this individual is reportedly no longer associated with the Texas Board of Medical Examiners, you cannot help but wonder who else on that Board secretly rejects these truths? Is it time to examine the examiners? Is it no wonder the doctors fear the board?

There are "bad" physicians out there. There is a need for a Board of Medical Examiners, where the public can be assured that improper, unethical behaviour will be properly, and promptly, dealt with. However, when the Board itself nurtures unethical conduct, when it makes a mockery of the selection process for contracting "independent" reviewers, public trust not only breaks down, doctors sometimes wrongly lose their practices, and patients lose their lives.

When the most prominent medical peer-review publications must write apologies concerning institutional and monetary affiliations, perhaps it is time to turn the witch hunt around.

It has long been rumored that many of the complaints coming before the Boards are coming from insurance companies, or through their straw dogs. It has also been rumored, nationwide, that many Board members have insurance company and HMO affiliations. Perhaps we need to follow the lead of the peer-review publications and publish and certify affiliations along with the complaints.

In closing, I call for Texas to uphold the Human Rights and Civil Rights portions of the United Nations Protocol on Human Rights, and announce immediately to all entities with the right to affect health care in the State of Texas:

"It is a human rights offense to be denied treatment for an illness if that treatment effects some improvement in health until a cure is found for the disease."

It is a civil rights offense to actively intrude and cause denial of treatment from which some measure of improvement can be noticed.

God Bless Texas, and All The Little Children Of The World.

R. R. -- Euless, TexasA Tick Made Me SickTIICS Are Keeping Me That Way(The Insurance Industry Captive Specialists)http://www.angelfire.com/biz/romarkaraoke/james.htmlMay is Texas Tick-borne Disease Awareness Month

[Guest guest]

GREAT TESTIMONT JAMES! Carol F. In MI

[Guest guest]

Dear : GOOD GRIEF YOU'RE INCREDIBLE!! What a WONDERFUL,

BEAUTIFULLY worded statement. You should reprint it and put in on all

t-shirts from hence forward. You're terrific!!

Lovette

[Guest guest]

Dear Lyme Friends,If you thought this (written testimony) was great, you should have heard him. I was crying, though I had already read his written statement. I was not prepared to testify orally, though I prepared written testimony. It was orignially laid out for only one family member to testify orally. They had extra time, so I voluntered to testify and had to ad lib. I had already handed in my written testimony, didn't have copies, but they asked for anyone else to testify. Never did well at ad lib, but gave it a stab. Covered mostly the insurance issues, my symptomology starting in 5th grade, and what the great state of Texas can do to resolve our insurance problems. Lots of other people with long-standing Lyme symptoms as well. Many of them lived in our town of Euless and Bedford. Sorry we didn't get to meet Pepi, after all. Lots of people from Austin and other far-flung parts of Texas.

Never met anyone before with Lyme. Never heard of it before my diagnosis, so it was "great" (?) to hear other people testify, and see their faces. would never have been diagnosed, except for my previous diagnosis, even though he has suffered all his life and was put out on disability from the Marines in 1978 ()?) for what is most probably Lyme-related illnesses. The hearings were an eye-opening experience. So many tragic stories, especially the long road to real diagnosis and not-so-expedient treatment. So much "medical malpractice" going on. Learned a lot - especially about what is coming up in the future for better testing. Additional "Phase II" vacinnes from "real" researchers and honest care givers. Hope I can transcribe the truncated notes I took. So much good info. See if I can put my old skills to work. Really tired now, will get back to you all tomorrow.

Love ya,rose (and )

Arconic wrote:Dear : GOOD GRIEF YOU'RE INCREDIBLE!! What a WONDERFUL,BEAUTIFULLY worded statement. You should reprint it and put in on allt-shirts from hence forward. You're terrific!!Lovette

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The "RoseWriter" says: "Teach Tolerance, Overcome Ignorance, Advocate Lyme Literacy." See http://www.angelfire.com/tx3/RoseWriter/ or http://www.angelfire.com/biz/romarkaraoke/james.html for our Lyme Disease Horror Stories, links to LD research articles & websites, & current news items on Lyme. These sites are updated frequently, so please revisit.