The disease went into remission between March 2003 and November 2003 when I began having serious cognitive problems. My short-term memory was worsening, I was making numerous errors in my checkbook, I began wandering from room to room forgetting what I was doing and thought I was getting Alzheimer’s dementia because the physician had told me I could not get Lyme disease in Arizona. In August of 2004 the numerous neurological symptoms of late-stage Lyme disease began affecting my performance at work. This time it was extreme headache and pressure in my head (my head felt like a bowling ball on top of my stiff and painful neck), chronic sinus infection, hearing loss with ringing, buzzing and pain in both ears, waves of nausea, bronchitis, aches and pains in shoulders, elbows, wrists, back and heels, sleep apnea and excruciating pain in both ankles with swelling. The inflammation in my nerves and tendons caused excruciating pain. I found myself limping and hobbling around and my cognitive problems were so bad that I could not think clearly, became dyslexic and could not remember from one minute to the next what I was supposed to be doing. I saw my pulmonologist, a very concerned physician with an open mind, in November of 2004. He listened attentively to my entire story, admitted that he did not know very much about Lyme disease, but did order Western Blot blood tests for Lyme disease through Sonora in Phoenix / Quest Diagnostics in California. He also tested me for Lupus and Rheumatoid Arthritis. All of these tests came back negative. I did have one reactive strain (41 kDa) of Borrelia burgdorferi, the spirochetal bacteria which causes Lyme disease.

After receiving the negative lab result, I searched my Merck Manual again thinking I possibly had Multiple Sclerosis or Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease). However, all my symptoms kept pointing toward Lyme disease. On the Internet, I discovered the controversial issues, along with hundreds of stories of people all over the country who have been misdiagnosed and refused treatment for Lyme disease and other tick-borne infections. I also found IGeneX Laboratory in California, and they referred me to a Lyme-experienced physician who treated Lyme patients in Connecticut and New York, Dr. Warren M. Levin. This physician is now practicing in Phoenix. In December of 2004, this Lyme-experienced physician clinically diagnosed me with Lyme disease and told me that, if this was Connecticut he wouldn’t even run the lab work, but because it is Arizona, he felt it was necessary to do so for confirmation. He sent my blood samples to IGeneX and my IgG and IgM Western Blot tests came back positive, along with an erlichia co-infection. On my IgG I tested equivocal, low positive and medium positive for 8 bands. On my IgM I tested equivocal and low positive for 11 bands.

Unfortunately, because I was unable to work, I had no health insurance. So my parents borrowed money from their credit cards to pay for 6.5 weeks of intramuscular Bicillin LA injections twice per week. Dr. Levin SAVED MY LIFE! The injections helped me tremendously, but did not cure me; I still have residual problems.

In February of 2005 I applied and qualified for our state-run health insurance and chose a plan. I saw my primary care physician who prescribed ongoing Doxycycline for me and provided a referral to an infectious disease specialist of my choice. I chose a man whose office told me he would be willing to prescribe antibiotics "if warranted". I thought that indeed he would see my lab results and treat me! I anxiously awaited my visit with him.

I provided my history, records and lab results to the first infectious disease specialist, and he told me that he doubted that I was ever bitten by a tick in Arizona, that you cannot get Lyme disease in Arizona, that my IGeneX Lab result was NEGATIVE because it did not meet the five-band CDC epidemiology criteria, and that it was his "opinion" that I do not have Lyme disease. He also said that even if he thought I had LD, he would not provide any more antibiotic because I already had 6.5 weeks of injections and ALL the bacteria in my body was gone.

After explaining this situation to my PCP, my PCP refused to consult with my Lyme-experienced doctor, because he is a homeopathic physician. My PCP called him a "quack". Well, I respect that "quack" who saved my life! I obtained the name of another Lyme-experienced physician from IGeneX, this time the doctor was an osteopathic physician. Ah-ha! My PCP is also a D.O., so I thought he might be willing to consult with the second Lyme-experienced physician. (It’s called "Lyme Strategy".) After I saw the second doctor, who also clinically diagnosed LD and validated my tests from IGeneX, I asked my PCP to consult with this second Lyme-experienced DO who ordered 4-8 weeks of intravenous Primaxin for me. Initially, my PCP said he would speak to the other doctor, then left the room and came back and said, "Primaxin is a heavy duty antibiotic. It’s very expensive!." Then he sat down in front of me, leaned forward and pointedly told me, "Tina, I REFUSE to treat you for Lyme disease." Then he said, "I doubt that you will find any doctor on your health plan who will treat you for Lyme disease!" He must have some psychic abilities!! How else could he possibly know???

At my request, I then saw a neurologist who ordered an MRI and a spinal tap. I asked him whether I should stop taking the oral Doxycycline prior to having the spinal tap, and he told his nurse to tell me, "OH NO! DON’T stop taking the Doxycycline!" My MRI did not show anything significant, according to the neurologist. My spinal tap showed .2 antibodies for Borrelia burgdorferi, but came back negative because it needed to show 1.0 or above for a positive. No doctor since has been able to tell me whether it’s normal to have .2 antibodies in my cerebral spinal fluid (CSF). They all respond by saying, "I don’t know if it’s normal." Well, I know it’s NOT normal!! The neurologist referred me for a neuropsychiatric exam and diagnosed me with CONVERSION DISORDER!!!!!!

I subsequently saw a very highly-regarded infectious disease specialist, President of the Arizona Infectious Diseases Society, who informed me that he is a "Lyme expert." He then proceeded to tell me, "Lyme disease does not cause neurological problems." I told him about Public Law 107-116 and he responded with, "I don’t care what President Bush or the CDC says!" I guess he’s above the law! I asked him what could be causing the swelling in my ankles, and he told me, "Syphilis or rheumatoid arthritis." I asked him about my lab work and he said, "IGeneX is one of the worst labs in the country, and all those tick-borne disease labs have closed down. I’ve proven wrong EVERY IGeneX test that has crossed my desk! Sonora Quest NEVER makes a mistake!" So, I asked him why he would then doubt my negative rheumatoid arthritis test that was performed at Sonora-Quest last November at the height of my symptoms, I mean, if they never make a mistake! He never answered that question. I didn’t have trust in him as a "Lyme expert", so I just left his office. Before I left, however, I went home and called IGeneX, MDL and Stony Brook and confirmed that they’re all still in business. I wrote to him about my findings. He responded to me by providing me with a copy of the letter he wrote to my PCP, in which he demonstrated his skills with abusive psychiatry:

"This patient appears to have an obsession with Lyme disease and attributes all of her problems to that infection. The patient even provided me about 100-page document that she has put together regarding Lyme disease and why she believes that she has Lyme disease. She has been seen by another infectious disease physician whom she says told her that she did not have Lyme disease. I would agree with that assessment. I think the subjective problems that she is experiencing would not be typical for chronic Lyme disease. The patient has not had serologic confirmation that she has Lyme disease. She does not believe the serology done by Sonora Laboratories is negative.

She also does not feel that the lack of Lyme disease in Arizona is accurate. I have been in practice for 25 years in Arizona and have seen many Lyme disease patients and reputed Lyme disease patients and have not been able to document a case of Lyme disease originating in Arizona. This is substantiated by the Arizona Health Department. The fact that there is no Lyme disease in Arizona, her serology is negative and her complaints atypical for Lyme disease make it extremely unlikely the patient has Lyme disease. I can tell from the obsession that she has with the diagnosis of Lyme disease that her disease is in the realm of a psychiatric disorder. I cannot find any objective evidence of Lyme disease clinically. I discussed with the patient that she may have an underlying medical problem, but it is not Lyme disease and to ignore that possibility in favor of Lyme disease is not the best way of approaching her problems. I would suggest that she have a psychiatric evaluation. I have also requested that she have laboratory studies done through a conventional laboratory to see if she has any confirmation of Lyme disease or I can demonstrate cross-reactive antibodies that might cause her Lyme serology to be positive. The patient refused the recommended testing and left after a lengthy discussion. I think she should have psychiatric evaluation. Perhaps this might be of most benefit for the treatment of her various problems, she does not have Lyme disease."

To top it all off, on my receipt from this infectious disease specialist, he specified "lyme disease" under the diagnosis. I asked the office staff person why he would indicate "lyme disease" if he said I didn’t have it. She told me it was for billing purposes; it was what I came in there for. OH!!! It’s all right to bill under the Lyme disease billing code, even though he says I don’t have it. I see how they do that!!!

I saw a rheumatologist most recently, who told me I do not have LD and there are no endemic ticks in this state. At least he actually physically examined all my painful areas. He took a very good look at my hands and feet. I had pain on palpation. I asked him what he thought was wrong with me. He told me I might possibly have Fibromyalgia. I asked him what causes that, and he said waving his hands around his head, "Oh, it’s a neuropsychiatric condition women get where they feel painful all over." I asked him if I have rheumatoid arthritis, and he informed me that I definitely DO NOT have rheumatoid arthritis, and if my test result was negative in November of 2004 that is confirmation. He told me that he used to practice in California "where they have a little Lyme", and people there have what he calls "pseudo-Lyme". He laughingly told me they even formed a little group called "Ticked Off." "Ha-ha-ha-ha," he laughed.

EVERY TIME A PERSON CAN OBTAIN THE TREATMENT OF THEIR CHOICE, AND PERHAPS NOT BE CURED OF THIS DEVASTATING DISEASE, BUT IMPROVE THEIR QUALITY OF LIFE, A VALID POINT WHICH SO MANY PHYSICIANS ARE IGNORING, IT IS A BATTLE WON IN THE WAR WHICH THE CENTERS FOR DISEASE CONTROL AND PREVENTION AND THE NATIONAL INSTITUTES OF HEALTH HAVE WAGED AGAINST LYME DISEASE PATIENTS NATIONWIDE AND WORLDWIDE!! GET THE TREATMENT THAT YOU FEEL IS BEST FOR YOU AND THUMB YOUR NOSES AT THESE AGENCIES WHO ARE DISGUISED AS OUR CAREGIVERS. REMEMBER, WHEN THESE AGENCIES WERE THE UNITED STATES PUBLIC HEALTH SERVICE, THEY WERE DIRECTLY RESPONSIBLE FOR CONDUCTING THE HUMAN SUBJECT TUSKEGEE STUDY IN WHICH THEY ALLOWED THEIR RESEARCH SUBJECTS (AMERICAN CITIZENS) TO UNKNOWLINGLY SUFFER FROM ANOTHER SPIROCHETAL DISEASE, SYPHILIS. THEY WITHHELD TREATMENT FROM THOSE CITIZENS. SIMILARLY, THEY ARE CURRENTLY INTENTIONALLY INTERFERING WITH DIAGNOSIS AND TREATMENT FOR LYME DISEASE. IS THIS A COINCIDENCE THAT THE CDC AND NIH ARE VEHEMENTLY OPPOSING ALL TESTING AND TREATMENT THAT AT A MINIMUM IMPROVES OUR QUALITY OF LIFE? JUST THINK ABOUT THIS CAREFULLY AND DECIDE FOR YOURSELVES BY GOING TO THE CDC INFORMATION PAGE THAT THEY HAVE ON THEIR WEBSITE ABOUT THE TUSKEGEE STUDY. TYPE IN "THE TUSKEGEE TIMELINE" IN YOUR BROWSER AND THEN GO TO THE PAGE. THE NIH AND CDC DID NOT MAKE AVAILABLE TO THE HUMAN EXPERIMENTAL SUBJECTS PENICILLIN THAT WAS AVAILABLE IN 1947. THIS STUDY CONTINUED FOR 40 YEARS AND MAY HAVE CONTINUED TO THE PRESENT DAY HAD IT NOT BEEN EXPOSED. PRESIDENT CLINTON ISSUED A PUBLIC GOVERNMENTAL APOLOGY. THERE IS A DISTINCT SIMILARITY IN WHAT IS HAPPENING TODAY, ONLY THE HUMAN SUBJECTS ARE GREATER IN NUMBER.