My name is Tina Garcia. I was bitten by an infected tick at a rest area south of Cordes Junction, Arizona in November of 1998. I had a rash typical of an infected tick bite. During the summer of 2001, I developed pain, tingling and numbness in my shoulders, arms, elbows, wrists, feet and toes. In April of 2002, I began having excruciating pain in my thighs, knees, shins and ankles, along with memory and hearing loss. By November of 2002, I could barely walk or rise from a chair and told my family I thought I would end up in a wheelchair. I was examined by two physicians in Mesa, Arizona. I described my bite and symptoms and asked about Lyme disease, which I had read about in my Merck Manual. I was diagnosed with sciatica by one physician, told that it did “not appear to be Lyme’s disease because there are no endemic ticks in Arizona” by another, and was treated for symptoms only by both. Neither of these physicians addressed my memory and hearing loss or provided me with a clinical diagnosis or any testing for Lyme disease.
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 this 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 antibody blood tests for Lyme disease through Sonora Quest Diagnostics. He also tested me for Lupus and Rheumatoid Arthritis. Although I did have one reactive band (41 kDa) for Borrelia burgdorferi (Bb), the spirochetal bacteria which causes Lyme disease, all of these tests were considered negative.
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 from 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. At that time, he was 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 of Bb. 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 provided the money to pay for 6.5 weeks of intramuscular Bicillin LA injections twice per week. Thanks to this assistance from my parents, Dr. Levin was able to SAVE MY LIFE! Although the injections helped me tremendously, they did not cure me because 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 antibiotic for me and provided a referral to an infectious disease specialist of my choice. I chose an ID specialist whose office told me he would be willing to prescribe long-term 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 this 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 CDC five-band serological criteria (which is only supposed to be used for epidemiological purposes -- not to diagnose), and that it was his “opinion” that I did not have Lyme disease. He also said that even if he thought I had LD, he would not provide any more antibiotic because I had 6.5 weeks of injections and told me, "You've already had enough antibiotic to kill ANY bug in your body!"
After explaining this situation to my PCP, my PCP refused to consult with my Lyme-experienced doctor, because he was a homeopathic physician. My PCP called him a “quack”. So, I obtained the name of another Lyme-experienced physician from IGeneX; this time the doctor was an osteopathic physician. Ah-ha! My PCP was 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 had ordered 4-8 weeks of intravenous Primaxin antibiotic for me.
Initially, my PCP said he would speak to my second Lyme doctor, then left the room and came back and said, “Primaxin is a heavyweight 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, “And I doubt that you will find any doctor on your health plan who will treat you for Lyme disease!” He must have had psychic abilities!! How else could he possibly know that I would never get any help from any Phoenix Health Plan/AHCCCS physicians?
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 to be considered positive. I asked my doctors whether it’s normal to have .2 antibodies in my cerebral spinal fluid (CSF). They all responded 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, saying I had emotional problems and was IMAGINING all my painful symptoms!!!!!!
I subsequently saw a highly-regarded infectious disease specialist, Dr. Timothy Kuberski, President of the Infectious Diseases Society of America Arizona Chapter, who informed me that he was 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 in the form of an ad hominem attack:
“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.”
I next saw a rheumatologist who told me I did not have LD and there are no endemic ticks in this state. At least he actually physically examined all my painful areas, which is a bit more than the second ID specialist did. 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 that women get where they feel painful all over.” I asked him if I had rheumatoid arthritis, and he informed me that I definitely DID NOT have rheumatoid arthritis, and if my test result was negative in November of 2004 that was confirmation. He told me that he used to practice in California “where they have a little Lyme”, and people there have what he called “pseudo-Lyme”. He laughingly told me they even formed a little group called “Ticked Off.” “Ha-ha-ha-ha,” he laughed.
I still suffer from some cognitive dysfunction and painful symptoms of chronic Lyme disease, and although long-term antibiotics have not cured me completely, they have allowed me a better QUALITY OF LIFE, which is important in itself. The CDC and IDSA are powerfully interfering with patients' rights to antibiotic therapy.
The bottom line is that I have had to pay for the majority of my treatment myself. I lost my health, my job and my home. I am the victim of misinformation disseminated by the Arizona Department of Health Services, the Centers for Disease Control and Prevention, the Infectious Diseases Society of America and Arizona physicians who are relying upon the misinformation.
I am LIVING PROOF of the efficacy of long-term antibiotic treatment for chronic Lyme disease. I have been taking antibiotics on and off for four (4) years now, and have experienced significant improvement. I am trying to get to the point where I won't experience recurrent relapses. Most recently, I have been struck with some difficulty breathing and speaking. I suspect this may be due to vagus nerve involvement affecting my vocal cords, but I am awaiting appointments with specialists to determine the cause. I have a compromised immune system and became ill with upper respiratory infections five (5) times from December 2007 to May 2008. Life is a struggle when you have chronic Lyme infection. The lymph nodes under my arms are the size of plums, causing tenderness and pain in my shoulders, arms and back.
If only these physicians had recognized my symptoms, my treatment would not have been delayed for two years and I could have received intravenous antibiotics that would have been covered by AHCCCS/Phoenix Health Plan. Instead, I have gone for periods of time without treatment or monitoring by any medical professional. My life was drastically altered due to the bite from one small bug. My life has been deliberately destroyed by those medical professionals who preferred making psychological diagnoses that were of no help to me whatsoever.
Despite chronic ill health, with each day presenting various problems in being to function, I am attempting to remedy this problem on behalf of those suffering with chronic Lyme disease in Arizona and nationwide.
Tina J. Garcia
Founder and President
Lyme Education Awareness Program
L.E.A.P. Arizona
tinajgarcia@yahoo.com
P.O. Box 2654
Mesa, Arizona 85214-2654
480-219-6869 Phone
480-830-2788 Fax
IMPORTANT NOTE:
IF
YOU SUSPECT THAT YOU HAVE A TICK-BORNE INFECTION, IT IS IMPERATIVE THAT YOU FIND
A PHYSICIAN WHO IS KNOWLEDGEABLE OF LYME DISEASE AND CO-INFECTIONS. MISSING THE
DIAGNOSIS OF LYME DISEASE IS COMMON WITH PHYSICIANS WHO ARE NOT EXPERIENCED IN
TREATING THESE VIRULENT INFECTIONS. MANY LYME DISEASE PATIENTS HAVE SPENT YEARS
OF SUFFERING DUE TO A MISDIAGNOSIS OF CHRONIC FATIGUE SYNDROME, FIBROMYALGIA, MULTIPLE SCLEROSIS, LUPUS, RHEUMATOID
ARTHRITIS, PARKINSON'S AND AMYOTROPHIC LATERAL SCLEROSIS (LOU GEHRIG'S DISEASE),
AMONG OTHERS.
INTERESTINGLY, DR. ALAN MACDONALD, A RESEARCH PATHOLOGIST, HAS STUDIED THE BRAIN TISSUE OF DECEASED ALZHEIMER'S PATIENTS AND FOUND BORRELIA BURGDORFERI, THE BACTERIA THAT CAUSES LYME DISEASE, IN THE BRAIN TISSUE OF THESE DECEASED ALZHEIMER'S PATIENTS.
http://www.leaparizona.com/physiciansinfo.htm
IN ADDITION, THE MAJORITY OF INFECTIOUS DISEASE PHYSICIANS UTILIZE GUIDELINES AUTHORED BY THE INFECTIOUS DISEASES SOCIETY OF AMERICA (IDSA).
THESE GUIDELINES ARE CURRENTLY UNDER INVESTIGATION BY THE CONNECTICUT ATTORNEY GENERAL FOR POSSIBLE ANTITRUST VIOLATIONS. L.E.A.P.'s FOUNDERS AND BOARD MEMBERS HAVE HAD DIRECT NEGATIVE EXPERIENCE WITH THE IDSA TREATMENT GUIDELINES FOR LYME DISEASE. ALTHOUGH WE PROVIDE THESE GUIDELINES ON OUR WEBSITE, L.E.A.P. ARIZONA DOES NOT ENDORSE THE IDSA TREATMENT GUIDELINES FOR LYME DISEASE, BECAUSE WE HAVE HAD PERSONAL EXPERIENCES WHICH WOULD INDICATE THAT THE IDSA GUIDELINES ARE HARMFUL TO THOSE SUFFERING WITH LYME DISEASE AND CO-INFECTIONS. WE OFFER THEM ONLY TO PROVIDE INFORMED CONSENT.