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LymeDisease.org hosts an online support and information group for patients and their caregivers in NC at https://groups.yahoo.com/neo/groups/NorthCarolinaLyme/info. There are also groups for other states.
Antibiotics may not be for everyone, but a Lyme-literate physician (contact ILADS.org) will explain your options AND check for other possible tick-borne co-infections, plus molds, toxins, etc. Best wishes for a full recovery.
Phyllis Mervine
Posted on June 16, 2014
Thanks so much for the information, the kind words and support. And for those who are also Lyme sufferers or who have family members that are, I pray for your healing. Blessings! Patrice
Posted on June 15, 2014
I am sorry for your suffering, but I thank you for sharing your story.
My experience is similar, although I've only had Lyme-induced health issues for 10 years. My whole family contracted Lyme, and I was dismissed by many doctors, so I know how terrible that feels.
I wish you healing.
Posted on June 14, 2014
Most studies related to transmission of Lyme disease bacteria by tick bite were done in the 1980s, based solely on one bacterial species (Borrelia burgdorferi), and were done with mice. Since then, studies have shown that other Borrelia species may be transmitted to the host ?earlier? than the stated 24 hours. One recent study involving humans demonstrates transmission of Borrelia to human hosts in 4-12 hours post-attachment. Additionally, while there are no studies that specify the time a tick must be attached for transmission of other microbial agents, it is known that Powassen virus, that can cause deadly encephalitis, is transmitted shortly (within 15 minutes) after the tick begins to bite. Healthcare providers should not minimize the risk of contracting Lyme disease or other tick-borne diseases from an attached tick, regardless of the time.

The following are references to studies on this issue published in peer-reviewed scientific and medical journals:

Crippa, M., Rais, O., Gern, L. (2002) Investigations on the mode and dynamics of transmission and infectivity of Borrelia burgdorferi sensu stricto and Borrelia afzelii in Ixodes ricinus ticks. Vector Borne Zoonotic Diseases 2(1): 3-9.

Hynote, E.D., Mervine, P.C., Stricker, R.B. (2012) Clinical evidence for rapid transmission of Lyme disease following a tickbite. Diagnostic Microbiology & Infectious Disease 72(2): 188-192.

Ebel, G.D., Kramer, L.D. (2004) Short report: duration of tick attachment required for transmission of powassan virus by deer ticks. American Journal of Tropical Medicine and Hygeine. 71(3): 268-71.
Posted on June 12, 2014
A CDC study presented at International Conference on Lyme Borreliosis in Boston MA, August 2013, shows that in one survey, 36 percent of people diagnosed with Lyme disease were treated with antibiotics for more than eight weeks and 20 percent were treated for five to eight weeks. This survey indicates that the majority of practicing physicians are finding that, in clinical practice, the 2-3 week treatment lengths recommended in the IDSA guidelines are inadequate.

Hook S., Nelson C., Mead P. Self-Reported Lyme Disease Diagnosis, Treatment, and Recovery: Results From 2009, 2011, & 2012 Healthstyles Nationwide Surveys. Presented at the 13th International Conference on Lyme Borreliosis and other Tick-Borne Diseases, Boston, MA, August 19, 2013. Available: http://www.poughkeepsiejournal.com/assets/pdf/BK211780914.pdf
Posted on June 12, 2014
Two of the four NIH funded randomized controlled double blind studies on retreatment with long-term antibiotics found improvement in fatigue, and one found improvement in severe pain. A number of observational trials also support further treatment.

The following are references to studies on this issue published in peer-reviewed scientific and medical journals:

DeLong, A. K., Blossom, B., Maloney, E., Phillips, S. E. ?Antibiotic Retreatment of Lyme Disease in Patients with Persistent Symptoms: A Biostatistical Review of Randomized, Placebo-Controlled, Clinical Trials.? Contemporary Clinical Trials. November 2012; 33: 6, Pages 1132?1142.

DeLong, A. K., Blossom, B., Maloney, E., Phillips, S. E. ?Potential Benefits of Retreatment Highlight the Need for Additional Lyme Disease Research.? The American Journal of Medicine, February 2014; 127: 2, Pages e9?e10.

Donta S. ?Tetracycline Therapy for Chronic Lyme disease.? Clin Infect Dis. Jul 1997; 25 Suppl 1:S52-56.

Fallon, B. A., Petkova, E., Keilp, J. G., and Britton C. B., ?A Reappraisal of the U.S. Clinical Trials of Post-Treatment Lyme Disease Syndrome,? The Open Neurology Journal. 05 October, 2012; 6: Pp. 79-87.

Krupp, L. B., Hyman, L. G., Grimson R., et al. ?Study And Treatment Of Post Lyme Disease (STOP-LD): A Randomized Double Masked Clinical Trial.? Neurology. Jun 24 2003; 60(12):1923-1930.

Stricker, R. B., Delong. A. K., Green, C. L., Savely, V. R., Chamallas, S. N., Johnson L. ?Benefit of Intravenous Antibiotic Therapy in Patients Referred for Treatment of Neurologic Lyme Disease.? Int J Gen Med. 2011; 4:639-646.

Stricker, R .B., Green, C. L., Savely, V. R., Chamallas, S. N., Johnson L. ?Safety of Intravenous Antibiotic Therapy in Patients Referred for Treatment of Neurologic Lyme Disease.? Minerva Med. Feb 2010; 101(1):1-7.
Posted on June 12, 2014
Studies performed at Rutgers University, Thomas Jefferson University, and Johns Hopkins University demonstrate that the classic EM "bullseye" rash has been found to be present in only 9% to 30% of patients with laboratory confirmed Lyme Disease.

The following are references to studies on this issue published in peer-reviewed scientific and medical journals:

Aucott, J., Morrison, C., Munoz, B., Rowe, P. C., Schwarzwalder, A., and West, S. K. ?Diagnostic Challenges of Early Lyme Disease: Lessons from a Community Case Series.? BMC Infectious Diseases, 2009; 9:79.

Schutzer, S. E., Berger, B. W., Krueger, J. G., Eshoo, M. W., Ecker, D. J., Aucott J. N. ?Atypical Erythema Migrans in Patients with PCR-Positive Lyme Disease? [letter]. Emerg Infect Dis [Internet]. 2013 May [date cited].

Storehourse, A., Studdiford, J. S., Henry, C. A. ?An Update on the Diagnosis and Treatment of Early Lyme Disease: ?Focusing on the Bulls-Eye, You May Miss the Mark.?? The Journal of Emergency Medicine, 2010; 39(5):e147-e151.
Posted on June 12, 2014
A summary of important information concerning Lyme Disease and other tick-borne diseases is available in video format that can be viewed in less than 5 minutes: "What Is Lyme Disease: An evidence-based exploration of the concepts and common medical misconceptions of Lyme disease" http://youtu.be/tX70ivbRyJ4
Posted on June 12, 2014
I would love to post this on our Facebook page of our support group but it just has too much bad information. Sorry.
Posted on June 12, 2014
I am a board member with the Kentuckiana Lyme Support Group. My heart breaks for you. Please find a Lyme literate doctor. Long term antibiotics do work. It saved my son. An infectious disease doctor turned him chronic but we found a Lyme literate doctor who saved him. With the right doctor who knows what they are doing and uses supplements to protect your organs, it does work. There is a lot of misinformation in this article. It affects over 300,000 people per year not 20,000. I have no idea where you are getting that number. In Germany, they have better record keeping and had one million new cases for 2013. Only 50% of patients see a rash and it isn't always a bulls-eye rash.Some states have passed laws to protect their doctors so that they can use long term antibiotics without fear of losing their license. If long term antibiotics have been proven not to work, why would states be passing these laws? Permethrin is much better as a preventative not Deet. Permethrin is sprayed on your clothes and will repel AND kill ticks. Use a natural spray on your skin NOT chemicals. Transmission has been proven to be "rapid". There are patients who have been infected in less than 2 hours and one pathogen was found to be transmitted in 15 minutes. The bacteria is in the ticks saliva. Ticks use their saliva to numb their host and also to keep the hosts blood from coagulating. Telling the public that it takes 24 hours gives them a false sense of security. One of our members had removed his within 12 hours so assumed he was safe according to the CDC. He had no idea what he was in for. Please contact us if you need a physician. We can help you find one. Please know that Lyme can "mimic" over 350 chronic diseases including MS, fibromyalgia, Alzheimers, arthritis, ALS, Lupus,Crohn's Disease, ADD/ADHD, Autism... and the list goes on. If you have been diagnosed with a chronic disease, please contact us. We are on Facebook.
Posted on June 12, 2014
Patrice. You are so brave to share your story. I know it is a hard road b/c my daughter has been fighting lyme for 8 years. She has improved with treatment. She was sick for 4 years before we found a lyme Dr. Keep fighting and I hope you get better.
Posted on June 12, 2014
Patrice, your story is much like mine and those in our local lyme disease support group. My thoughts and prayers are with you.
Posted on June 12, 2014

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