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Life and Religion

'I knew something wasn't right'
Charlotte woman shares experience with Lyme Disease
 
Published Thursday, June 12, 2014
by Michaela L. Duckett

PHOTO/PAUL WILLIAMS III
Patrice Johnson, daughter of Charlotte Post publisher Gerald Johnson, takes 40-70 natural supplements a day to cope with symptoms and complications of the tickborne illness Lyme disease. After going undiagnosed for 20 years, her condition became chronic, resulting in severe pain and heart problems.

Night sweats, shortness of breath, heart problems, impaired vision, depression and muscle aches - those are just a few of the more than 200 symptoms that have plagued Patrice Johnson over the last 20 years. She had no clue what was causing them.

In January 2013, things took a turn for the worse. Johnson said she had gone for a routine workout at the gym. The next day she could hardly get out of bed.

“I knew something wasn’t right,” she said.

Her heart was beating irregularly. She felt tingling and numbness. She went to the hospital worried she might be having a stroke, but tests determined that was not the case.

Johnson had more tests and blood work done, but doctors could not figure out what was wrong. She lost nearly 30 pounds in less than three months.

Doctors thought she might be suffering from an autoimmune disease, but tests ruled out multiple sclerosis, lupus, Crohn’s Disease and other conditions. With each batch of tests, Johnson returned home with more questions than answers.

“They couldn’t figure out what was wrong with me,” she said.

She believes it got to a point where doctors suspected she was just making things up when she walked into their office with a three-page list of complaints.

“Honest to goodness, I think they had in my charts somewhere that I was a hypochondriac,” she said. “I would get dismissed before they would really even look into what I had to say.”

Her illness baffled friends and family as well.

“No one really believed that I was experiencing all the symptoms I was having,” Johnson said. “It does seem unrealistic to tell someone that at any given point you are having about 30-40 symptoms a day.”

Johnson said many of her friends stopped visiting. Some didn’t like to see her sick and in pain. Others simply didn’t believe she was as sick or in as much pain as she claimed.

“I went through a real depression,” she said. “It was a really hard time for me.”

Over the course of the next 10 months, Johnson said she spent countless hours at the doctor’s office to no avail.

Don’t ignore the bull’s eye

In October, Johnson was diagnosed with Lyme Disease, a tick-borne illness caused by the bacterium Borrelia burgdorferi. According to the CDC, the disease affects over 20,000 people in the United States each year.

Johnson said that in all the trips she had taken to the doctor, she had never been asked about a tick bite. Even though she had been bitten, she never thought to mention it. She didn’t think it mattered because it happened such a long time ago.

Then, one day the subject of Lyme Disease came up casually during a consultation, and Johnson said she was surprised to learn that it could be the culprit of all her ailments.

“I didn’t know that 20 years later that [tick bite] could still be relevant,” she said.

About 70 to 80 percent of people infected with Lyme disease develop a red, circular “bull’s-eye” rash at the site of the tick bite.

“This occurs somewhere from 3-32 days after the tick bite,” said Novant Health infectious disease specialist William B. Harley II, MD. “It starts as a small red lesion. As the lesion expands the center clears, creating the bull’s eye appearance.”

Harley said patients could also experience multiple smaller skin lesions elsewhere on the body along with fever, fatigue and generalized achiness.

“Patients may have neurologic symptoms including meningitis or Bell’s palsy (paralysis of the facial muscles on one side),” he said. “Five percent of patients develop cardiac problems within several weeks… Late infection may be manifested by intermittent attacks of joint swelling and pain (particularly involving the knees) or symptoms of neuropathy (pain and tingling of the extremities).”

Johnson recalls having a bull’s eye rash, but she dismissed it after it cleared.

Because her bacterial infection remained undiagnosed and untreated for so long, Johnson said her condition became chronic and debilitating. She’s constantly fatigued and experiences severe musculoskeletal pain.

“There’s always something that hurts,” she said.

A different approach

Harley said one of the biggest misconceptions about Lyme Disease is that patients may benefit from long courses of antibiotics.

“Clinical trials have shown no benefit to long-term antibiotics,” he said.

As in the case of Johnson, they can potentially do more harm than good.

For years (before diagnosis), Johnson treated her symptoms with prescribed antibiotics. She has since been medically advised to discontinue antibiotics as they have weakened her immune system and damaged her liver. She now opts for a more holistic approach to health and wellness.

“I take between 40-70 [natural] supplements a day,” she said. “One day of not taking those supplements could possibly mean me not getting out of the bed.”

Johnson has also adopted a strict diet. She seldom dines out and avoids processed foods. Instead, she consumes a lot of raw alkaline (less acidic) foods, fruits and vegetables.

“I really have to eat clean,” she said. “I can’t have a cheat day or anything.”

She said she also works to keep a healthy mindset by staying motivated with quotes, affirmations and surrounding herself with positive people.

“What I’ve learned is that my attitude is key to getting through everything,” she said. “It has definitely given me a new perspective on life. I can’t take things for granted so I live everyday to its fullest. It’s also changed the way I treat people. I’ve become more sensitive to other people’s needs.”

Best treatment, prevention

Johnson said she hopes others will learn from her experience.

“Know your body, and if you are having health issues, keep pressing if your doctor is not giving you the answers you need,” she said. “Early detection is key with Lyme. Get checked out if you have unexplained symptoms or see a bulls-eye rash.”

Since Lyme Disease is tick-borne, the best line of defense is to avoid tick bites.

Harley advises wearing long sleeves and long pants while outdoors and using insect repellant containing DEET.

“It is also important to inspect oneself after being outdoors in order to remove any ticks that might be attached, preferably with fine tweezers,” said Harley.

Quick removal is imperative, as ticks must be attached for 24 hours or more to transmit the bacterium that causes the disease.

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Comments

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
LymeDisease.org
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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