http://health.groups.yahoo.com/group/lymestrategies/




>>>>Hi everyone,

Below is a well informed, well written letter I received from a good friend. He was an ER doctor for many years until Lyme changed his life and he is now a Lyme advocate and is very much one of us, struggling daily with this illness... I like him because he is honest and cares about all of us stricken with Lyme. The letter below is to Mrs. Bush, the president' wife, asking of her help in the fight against Lyme and referencing President Bush's Lyme disease. Sadly, his letter was given to the Dept. of Health and Human Services and he received a poor response.

He is asking the Lyme community to contact the First Lady by snail mail or Fax asking her to act upon his letter. If you elect to do so, kindly attach a copy of his letter. He plans to continue contacting the First Lady at the White House, but others from the Lyme community contacting the the First Lady can really add some fire to his message...

I have alway's believed for the medical community to move on taking Lyme serious, it will have to come from doctors who've been stricken by the disease and know first hand what this disease is all about... You and I can make a lot of noise to them and they won't hear us. But, when a fallen fellow MD starts talking, they are more inclined to listen as he has their credentials, speaks their language and understands the disease. We can however try to bring some attention to his cause, writing=2 0to the White House supporting his letter to the First Lady. She has the power to open up a dialog between government, the medical community and doctors like my friend Dr. James.

Let's all get behind Dr. James,

Jim in Jax


PS: Please pass this on to anyone you believe can help.






Jim:

Haven't yet, but I've got a little note stuck on my desk reminding me to get some. I'm including a copy of the confidential letter I sent Laura Bush in August. It's now posted and public. All of us Lymies are sending and calling the White House after they responded to my letter by sending it to some beaurocrat at the Dept. of Health and Human Services. It was the poorest response...with references dating back to 1999 and claiming that the Elisa test is valid. Terrible.

Address: The First Lady Laura Bush, The White House, Washington, DC 20500. FAX/FAX/FAX until the machine blows: 202-456-2461.

See comments to my posting of the letter on LymeTopics, Troy and I are Moderators. He's the head honcho and he elected me as the MD consultant.

Hang in there and lets talk soon.

James





************ ********* ********* ********* ********* ********* *

Attached Message
Subject: Lyme Disease Epidemic
Date: Fri, 22 Aug 2008 15:56:35 -0600

Dea r Laura:

I'm a former Emergency Pysician and practiced the last 8 years of my career at The National Naval Medical Center Emergency Department. I had the pleasure of meeting several of your husbands private physicians and also taking care of prominent Senators, Congressmen, and famous researchers at NIH one of whom has been most active in the field of HIV research. In 2002, I collapsed at home and dragged myself to a local Emergency Department. I was found to have acute adrenal failure and ultimately was diagnosed with advance neuro endocrine Lyme Disease. I've been suffering from this illness ever since and have been totally disabled and not able to work. I moved to Colorado to be close to family. Despite all types of conventional and alternative therapies, my illness only worsens and I suspect that I will soon die. Honestly, the thought of death is a great comfort to me because my quality of life is poor and I don't see much hope for a cure.

I've writing to you because our nation needs your help. Also, I sense and feel your growing concern over your husband's battle with chronic Lyme Disease. I'm aware that George has consulted with Dr. Gregory Bach, Dr. John Forester, and possibly has inquired about whether Dr. Raphael Stricker might be able to help him. Because I do have Lyme Disease, I can see that your husband has had Bell's Palsy and also has difficulty "finding" words such that he=2 0often has to struggle mentallly. The medical term for this neurological impairment is called "Paraphasia" and I too have this problem. It so frustrates me when I can't remember a common name. I know most of the so called Lyme Literate MDs in the nation. In fact, I've talked to them about my own cases and they have had little to offer because I was diagnosed after having this illness for more than 8 years. I was treated with the accepted standard of care IV Rocephin which only worsened my condition. I developed bilateral Bell's Palsy and multiple Bull's Eyes Lesions over my entire body. Some people develop a more resistant organism from Antibiotic therapy which is more virulent than what they already have.

I've researched and experimented with many different forms of alternative therapy: Chinese herbs, Bee Venon Therapy, Far Infrared and Ozone Sauna Therapy, Rife Therapy, Bioresonance treatments along with many different dietary changes and nutritional supplements. I've seen some people be cured with standard Antibiotic therapy if they were treated early, but in many cases Antibiotics fail. Many Lyme Literate MDs or LLMDs have developed complex Antibiotic protocols which they feel are more effective. I would agree that in some cases they are, but in some patients the side effects are intolerable and many relapse in time. Unforetunately, some of these LLMDs have been subject to legal action by medical boards=2 0for not following medically accepted standards of care. Generally it's the insurance companies that file a complaint, not patients. Some of these doctors have lost their licenses and been subject to massive lawsuits.

I pursued education in the late 90s to become a Medical Legal Consultant so that I might be able to continue having an income in the medical field because my legs and feet were failing me slowly. My knowledge has helped me understand the conflict between the LLMDs and the CDC in regards to these unconventional therapies. Certainly one might consider it ill advised to treat patients with antibiotic regimens that had no medical studies to back them up, but on the over hand, these doctors were seeing that conventional therapy was of little help. Moreover, many of the alternative therapies that I've been using are illegal for a practicing MD to use in his practice on patients. These devices are considered experimental, are not FDA approved, and so many patients must act as their own health care advocate and get information and advice over the Internet from a number of Lyme websites. I do know of people that have cured themselves using Rife Therapy but unfortunately no MD can advise a patient to do such therapy or offer it to them in their office. Additionally, ozone sauna and Far Infrared Sauna therapy is helpful but few MDs are informed of it's benefits.

I don't mean to be pessimistic, 20but if a cure isn't found for Lyme Disease, it's likely that your husband will continue to suffer from this disorder. The symptoms and progression vary greatly from patient to patient. I've never seen a disease that presented with more physical findings and unusual symptoms compared to Lyme Disease. It's often said that most people see 12 or more physicians before they get a comfirmed diagnosis of Lyme Disease. Even then, the criterion for diagnosing this disease is in question. The CDC, who I've personally spoken to here in Fort Collins, claims that the standard screening test, ELISA test, is 95% accurate. I had the test 3 times over many years and it was negative every time. I'd done enough research now and talked to countless LLMDs that I now feel that the ELISA screening test is highly inaccurate and results in many false negatives. In my professional opinion, I believe that the test should not be done and that the CDC should change their recommendations. I had a Western Blot IgG and IgM test done by a lab in California called Igenex. They specifically specialize in tick born illnesses and it's likely the finest lab in the country yet the CDC will not recognize them or consider their findings of value. In any event, I tested positive for all 5 Bands on the IgG test which confirmes chronic cases of Lyme Disease. These bands conformed with the bands that the CDC recognizes as being diag nostic of Lyme Disease.

Regardless of laboratory testing, the CDC and LLMDs consider Lyme Disease to be a disease that is diagnosed by a "clinical" picture. That means looking at lab tests, history, physical findings, symptoms and total available data for any patient. Even with all negative tests, a person may have Lyme Disease.

ILADS.org is an organization in Bethesda that represents the LLMDs in this nation. I've not a member primarily because I don't believe that antibiotic therapy is going to be the answer to curing Lyme Disease and I don't support their protocols. Moreover, they are limited in their scope and don't recommend or support alternative therapies that may be helpful. In any event, they do represent some of the most brilliant physicians in the nation in this area of chronic diseases and specifically Lyme Disease.

Lyme Disease is thought to have originated from a research lab on Plum Island which is located on the tip of Long Island. Many believe it was passed by a mosquito to birds and then to mainland Connecticut near Lyme Connecticut. ...thus the name Lyme Disease. It’s been speculated that this resulted from germ warfare research and I've even heard that some believe that this research dated back as far as the Hitler regime. You might wish to read some books on this topic. See the book, "Plum Poison," Plum Island." and "Laboratory 257." It makes little se nse to dwell on how this epidemic started. What's more important is that we get serious about finding a cure both for the nation and for your husband, our President.

Little money has been put into research in this illness. Lyme Disease is an extremely complex illness attacking the nervous system, the immune system, the endocrine system, and results in more suffering than cancer or HIV. If you gave me the option of having HIV or cancer, I take either one without hesitation. If I were not a Christian, I'd fly to Europe and be euthanized.. ..that's how bad I feel on a daily basis.

Mrs. Bush, we need your help in making this a national priority. Yes, cancer research, HIV, TB, and malaria are of great importance and I support research in this area. But Lyme Disease has been completely deglected by our nation yet it's now a national epidemic and that's coming from the CDC. It's quite possible that research in HIV, TB, and Malaria may help find a cure for Lyme. One renouned LLMD, Dr. Joseph Jemsek, feels that the Lyme organism displays a great many of the same attributes as TB and HIV being that it requires a "cocktail" of medications to kill the organism. He unfortunately is the doctor that was dismissed from North Carolina and sued for Millions. He had over 200 Lyme patients that for a period of time had no care. Yes, he went beyond what would be considered standard of care, but he did so in the interest of helping his patients and trying to find a drug combination that was effective. The Medical Insurance companies were paying out large sums for his treatment protocols and I do understand that they were not happy about these huge expenditures and I don't blame them. What really would have helped Dr. Jemsek, is if the government had given him a research grant to study alternative forms of antibiotic therapies.

Moreover, Energy Therapies are proving to be beneficial yet the FDA has done little to evaluate these devices, approve their use, and make them available to doctors. Germany is far more advanced than the USA in this area...so is Canada and Mexico and thus, we are seeing many desperate Lyme patients going to these countries at great expense and with protocols that might help or might be dangerous. I see far too much experimentation going on with this illness. I don't oppose it because nothing else is being done. And I don't support the actions that are being taken against well-meaning and dedicated physician in the fight to help Lyme patients. Right now there is one old Pediatrician in Connecticut who is about to lose his license. He continues to practice despite being threatened and harassed because at his age he has little to lose. The only reason he continued to practice so long is that his patients had no one else to turn to. We desperately need to open the doors20to new ideas, reduce the threat against LLMDs and other practitioners who are trying to find therapies that help, but more than anything else, we need funds to support first class quality research both in the private sector and in our govermental institutions. Consideration should be made to establish a collaborative research panel of doctors from around the world as was done to some extent in the fight against AIDS.

Laura, in all my days as a physician and even before as a young medical student, I was given a gift...a spiritual gift to sense things about my patients and other people. Some call it a gift of discernment, a gift of wisdom, some call it intuition, and others may refer to it as a 6th sense. It has helped me tremendously over my years in practice and often times allowed me to make astonishing diagnosis that stumped every specialist on a case. I've been sensing for some time concern in your heart. Maybe I'm wrong, but I don't think so. I feel that I could pretty much tell you how you are feeling about your husband,...the feelings of helplessness, your concerns for the future and what this disease may bring, your frustration over doctors that don't have any answers, and how you may manage in the future.

An individual like me has little power yet I've talked to countless Lyme patients over the years and continue to offer my services to people who need an educated ear free of charge. As First Lady, you can make a difference.. .a HUGE difference if you choose to. I know that you don't want the nation to become aware of your husband's illness to the point where it causes hysteria. That's not happened and does not need to happen. And once you are out of the White House you'll be able to be free of the scrutiny of the press. But this illness goes on waiting for a cure while countless millions suffer including a member of your own family. Our blood supply is not protected yet the Lyme organism is akin to sphyllis and is sexually transmitted yet no one pays any attention. I've already met one person that is quite certain that he was infected by a blood transfusion.

I've felt for some time that as a concerned and patriotic citizen of the United States that I have an obligation to do something meaninful in regards to this disease. Please feel free to contact me with any questions you may have as I'm probably more knowledgeable about this illness than just about any physician in the country. I understand it from the standpoint of the LLMDs but also understand what's being done with alternative therapies many of which I've experiment with on myself. If you are not comfortable contacting me directly, I'd be pleased to speak to a White House MD or someone affiliated with The National Naval Medical Center. Phone (970) 416-8415 after 6PM MST.

I pray that you'll find the20inspiration to ask God how he might use you in this battle to find a cure for Lyme Disease.

My thoughts and prayers are with you and the President.

Respectfully,

James W. Cilecek MD