NEWS: Arizona finally recognizes people can catch Lyme disease there
Thanks to eight years of advocacy work by the group LEAP, Arizona’s health department website now provides factual information about Lyme in that state. Among other things, the website says, “Due to the fact that not all cases are reported to state and local health departments by health practitioners and some cases acquired in Arizona may not meet the epidemiologic surveillance criteria, the lack of statistically-counted cases of Lyme disease acquired in Arizona should not deter health practitioners from using their clinical judgment when rendering a clinical diagnosis of Lyme disease in patients reporting symptoms from tick bites acquired in Arizona.”
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The following press release is from the Lyme Education Awareness Program (LEAP):
ARIZONA GOVERNOR
and ARIZONA DEPARTMENT OF HEALTH SERVICES (ADHS)
RECOGNIZE LYME DISEASE IN ARIZONA
Since 2005, Lyme disease patient advocate Tina Garcia, Founder and President of Lyme Education Awareness Program (L.E.A.P.), has promoted awareness of Lyme disease in Arizona and nationwide. On July 30, 2009, Mrs. Garcia was selected by former Connecticut Attorney General Richard Blumenthal (now U.S. Senator for Connecticut) and the Infectious Diseases Society of America to testify on behalf of the worldwide Lyme patient community at a private legal hearing held in Washington, DC.
Mrs. Garcia contracted Lyme disease and Erlichiosis, both tick-borne bacterial infections, from a tick bite in November of 1998 south of Cordes Junction , Arizona . Without any knowledge of tick-borne diseases, Tina went six (6) years without antibiotic treatment, while the infection ravaged her body. By the end of 2004, she was disabled from the chronic infection.
Tina sought antibiotic treatment for chronic encephalopathy, dementia and excruciating musculoskeletal pain from two (2) infectious diseases specialists in Arizona , the second of whom, at the time, was the President of the Arizona Chapter of the Infectious Diseases Society of America. Both infectious disease specialists denied treatment to Mrs. Garcia, with the former doctor inferring she was never bitten by a tick in Arizona and the latter insinuating that she needed psychological examination. Both ID specialists told Tina there was no Lyme disease in Arizona .
Fortunately, she found two other physicians who diagnosed Lyme disease and a co-infection, Erlichiosis; both Lyme-knowledgeable physicians recommended intravenous antibiotic therapy for her serious neurological symptoms. Although she had state-run insurance, AHCCCS, coverage for the intravenous antibiotics was denied based upon misdiagnosis by the infectious disease specialists. Neither Tina nor her family could afford the cost of expensive intravenous treatment, so instead, her family paid for oral and intramuscular injections, which saved her life. Today Tina’s health has improved, but she still suffers with residual problems.
For eight (8) years, Tina has worked to gain recognition for the disease in the state of Arizona . Recently, with the help of Governor Brewer’s Deputy Director for Health Care Policy, the Arizona Department of Health Services (ADHS) updated Lyme information on its website. Thanks to language submitted by Lyme Education Awareness Program, the ADHS Lyme disease webpage now provides an accurate and factual description of Lyme disease in Arizona .
Lyme-treating physician and L.E.A.P. Board member Dr. David Korn of Sunridge Medical in Scottsdale, Arizona, is hopeful that this newly-posted information will assist physicians, both in private practice and in hospitals, to be more vigilant in recognizing the varied manifestations of Lyme disease, which he says are similar to those exhibited by syphilis, another long-term, chronic, bacterial infection. “Lyme disease needs to be exalted to its proper standing in the spectrum of diseases, as it can present as more than 300 different conditions and illnesses, including Multiple sclerosis, ALS, Parkinson’s and Alzheimer’s. I’m grateful the Arizona Department of Health Services has updated their information on Lyme disease, as Lyme is a serious and chronic infection that causes mitochondrial dysfunction, which can lead to cancer.”
L.E.A.P.’s Founder and President enthusiastically states, “We are extremely grateful for this action, as it is a significant step forward taken by Governor Brewer and the Arizona Department of Health Services, in recognizing the existence of Lyme disease in Arizona and providing that information to physicians. It is timely in that May has been proclaimed by Governor Brewer as Lyme Disease Awareness Month, and in conjunction with the Worldwide Lyme Disease Awareness Protest, L.E.A.P. will be attending a rally at Mayo Clinic Scottsdale on May 10th from 12:30 to 3:00 p.m.
“The new information will help patients who live in Arizona and contract the disease here. When a physician says there is no Lyme in Arizona , the patient can refer the doctor to the ADHS website for evidence that there is. And if a visitor is bitten by a tick in Arizona , returns home and develops symptoms, their physician will have access to information that helps with diagnosis. Now it is the responsibility of physicians in Arizona and elsewhere, especially infectious disease specialists, to utilize the information on the ADHS website to render diagnosis of Lyme disease, test for possible co-infections and provide timely and adequate treatment to patients. Hopefully, others will not have to endure the suffering and medical neglect I have experienced due to denial of the existence of Lyme disease in Arizona .”
Lyme Education Awareness Program ~ L.E.A.P.
www.leaparizona.com
International Lyme and Associated Diseases Society (ILADS)
www.ilads.org
Connecticut Attorney General Press Release dated May 1, 2008
Infectious Diseases Society of America Conflicts of Interest Related to Lyme Disease
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
I was in Prescott, Arizona a few weeks back. 10 days later I was in the hospital with a diagnosis of Lyme disease in my spinal fluid, along with Meningitis. I don’t remember getting bit, not having a rash, but I had majority of the Lyme disease symptoms. I had a western blot done a few days ago, and it was IGG and IGM positive for 2 bands only. I was diagnosed with Lupus a few months back. I live in Nevada. Could I have contracted Lyme in Prescott, as it is a very wooded area?
Hi Rebecca, sorry to hear you’re another victim of Lyme. We live in Henderson, NV, how about you? We don’t know of any LL docs here…have you found a daring soul in NV, another place where Lyme “absolutely cannot exist”…too dry…hmmmmmmm…except possibly way up north? Bravo, make that BRAVISSIMO to Arizona for forging ahead on this issue. We have family members living in Arizona that are in health care, and they can now feel comfortable suggesting Lyme as a possibility when asked.
Rebecca, Prescott is west/northwest of the area where I was bitten. I have heard others tell of contracting it there. Until now, the state and county health departments in Arizona have used low humidity levels as the reason they claimed there were no Western black-legged ticks in the state. I gave them humidity level statistics throughout Arizona that showed sometimes the humidity level in wooded areas was lower than humidity levels in the Phoenix desert area. It is very possible that you contracted Lyme in Arizona and if your case is reported in Nevada, you can refer the NV health dept to the AZ health dept site for proof that Lyme is in AZ. Best wishes!
GOD BLESS all involved in exposing the TRUTH about LYME!!! Namely, my Sister Tina Garcia, Founder of L.E.A.P., working in conjunction with Dr. David C. Korn, a TRUE Physician and advocate for the masses of people infected, yet mis-diagnosed by almost all other Physicians and the C.D.C., in Atlanta. You see, I lived in Northern Michigan, where I believe I contracted it, having been bitten many times working my woodpile for firewood. DEAD-MAN WALKIN!
I did get Lyme last summer while hiking in Flagstaff. I had NO idea u could get it here in AZ. I plan on getting better, and working toward improving Lyme awareness HERE, in Arizona.
My daughter has Lyme. We live in AZ. She hasn’t been out of AZ in 4 years. She could have had a long time I suppose, maybe getting it while in MN. She could have gotten here in AZ in the last few years. 28 days of IV treatment helped, but now going to a Lyme Literate NMD for more treatment.
hey where is the best place go see a lymes disease specialist that is close to chandler Az i keep reading that it is hard to diagnose even people that have had blood test for it commonly have lymes disease and they don’t catch it so im wondering where the best place to go is
thanks for the help
You may want to talk to the Arizona Lyme Disease Association. http://www.azlyme.org/index.htm
We live in AZ but my son was bitten in MN. I cannot get an infectious disease specialist to even see him. He is bedbound with neuro symptoms…we are living a nightmare. Also, looks like the AZ page is now gone so looks like AZ is back to ignoring this epidemic.
Here is my sons story:
https://ourlymenightmare.wordpress.com/about/
I feel I am in this same situation. I have been bitten by 2/3 ticks in the last year and I’m 31 years old. I contracted meningitis viral last year and had right sided paralysis 6 months after. I now have had severe neurological symptoms that have gotten worse in the last few months. including, nerve pain in legs and feet and arms. muscle weakness, sensitivity to light, headaches, dizziness and severe fatigue. I went to see my PCP and had to literally demand to be tested for lyme disease when they are trying to figure out if I have MS. He was hesitant for about 30 min and at first said no. “lyme disease is in not in Arizona”. I just got my blood tested but he took only one vial. is that normal ? any advice?
I am in Tucson and suffering substantially from an undiagnosed condition. I tried accessing the links provided for more information which may help me approach providers that have shrugged me off (I’m finding that your links do not currently work). I have a bachelor’s of science in molecular and cellular biology, with an emphasis on biochemistry, genetics, and neuroscience. I was highly functional my last year of college, and applying to graduate programs when I became ill. It’s been years of fighting to find answers, and I’m finding that doctors not only lack knowledge in their own fields, but do not credit their own patient’s capacity for knowledge. I am often disregarded until I mention my education, and I find that it’s my own responsibility to troubleshoot and provide literature to weigh the value of my words. I cannot imagine being anyone in my position with a different background than my own. I use to do geriatric case management as a caregiver and fiduciary assistant; I can tell you that the medical care in Tucson is extremely disappointing to me, and I’ve seen a lot of it. When I lose my fight, there is nowhere to fall, and sometimes nowhere to live. It’s nearly impossible to get on disability with an undiagnosed illness. SSI is not an option for me, as I was a full time student prior to getting sick, rather than working and being able to pool into SS. State disability is a whole different matter and would hardly pay rent alone. Without treatment, where do people like me fall? I’m unable to work for the majority of 4 years now. Students are not considered carefully when it comes to a newly acquired disability. I am one of a forgotten group of society, and underrepresented. And I’m sure I’m not alone. Without the fight of my fellow disabled soldiers in pursuit of health, none of us would move forward. Breakthroughs like this would not exist in the stagnant waters of our local healthcare system. Thank you for your fight, and your strength when I have none. You represent a collective and underrepresented whole.
So many years have gone by since the above letter (and many more) was submitted and still “those of power” have done nothing to assist so many families with this debilitating disease. We have watched our son-in-law, a healthy, intelligent, prospering Ironman, cringe in pain, cry in frustration and spend thousands monthly to cover his medications. He visited every available Doctor, clinic, hospital and Disease Specialist in Arizona, till finally being diagnosed in Texas and is going through treatment in California. My heart cries for all people struggling with this horrid disease, let’s keep sending those letters to our Congresspeople and the CDC.Hopefully one humankind will get this made right and force new guidelines, training, treatment and the acknowledgement by insurance companies to cover the treatment.
Hello – he could not find a provider here in AZ? We are looking for one right now. My 18 year old daughter has been suffering for 3 years and we cannot find answers. The Infectious disease dr said Lyme doesn’t exist in AZ. She had 2/10 markers & 0/5, but I hear these tests aren’t reliable. Any help??
Recommend you contact the Arizona Lyme Disease Association. They have a website and a Facebook group. They should be able to tell you about resources in your area.
Great article. I live in Tucson, Az. I’ve had several western blots that show positive. I had one show negative while I was still on doxycycline. So the University doctor claim I’m cured. Yet my symptoms persist. Been denied treatment by the University head Infectious disease telling me I will eventually heal to give it time. As I’m writing this my ears are bleeding from yet another infection. I just came off a Z-pack. I asked my doctor if she would be willing to look at the evidence of Lyme or co-infections being the cause of my constant infections? Her reply: I don’t have the time.?? I cannot get any doctors to address this. I get the brush off of it can’t possibly be Lyme or Co-infections, yet how do they know if they won’t even run the proper testing? Now, it’s affecting my heart and Kidneys. I’m bedridden most of the time again. I don’t have the energy to fight ignorance. If anyone knows of a good doctor in Tucson please contact me. I’m disabled and on ACCCHS, so I know that limits me. I’m teaching myself computers and phone repair when I feel good. I hate not being able to make my own way. I’ve been fight this for 17 years and still no hope, mostly because I cannot find doctors who are up to speed. I hope it changes for those who suffer from this terrible crime of human rights. We need help.