Monterey County, CA
Current health: “I can’t say l feel any better yet but I do feel good knowing I am finally in good hands with specialists that deal with this complicated illness”
I am disturbed by the lack of research, funding, good testing, or universal treatment agreement regarding the treatment of this terrible illness. So now I am an advocate for Lyme awareness… -Mary Sue A.
Mary Sue was a vibrant, active athlete and outdoor enthusiast when she contracted Lyme disease from an unknown tick bite. Like many, it was a long road to diagnosis and treatment. She shares her story below.
“We need each other and our stories out in the world. I hope for our future generations soon it will be just be a memory of barbaric times in the treatment of Lyme because the disease finally will be accepted and understood and there will be excellent curative treatments!
“I was always a very high energy, type A personality person, devoted to helping others in my profession. I loved being athletic — swimming, biking, walking and lifting weights, and feeling and vibrant and optimistic. Yet, in 1997, as an avid gardener of my one-acre backyard in Houston, I started getting sick and weak, with horrific full-body pain, fevers off and on, and mysterious overwhelming fatigue. Back then, they diagnosed me with Lupus, Epstein-Barr Virus (EBV), chronic fatigue syndrome (CFS), and Fibromyalgia. The doctors told me my prognosis was not good because the Lupus had affected my kidneys already.
After a year of unsuccessful treatment and feeling very debilitated, I sought treatment outside Western medicine and after a year of changing my life dramatically, divorcing, and moving to California, I was better and there was no indication I have Lupus (an incurable disease) or any other symptoms.
In 2011, while training for a triathlon, I started having frightening irregular heartbeats, insomnia that was increasing to severe levels, and intense abdominal pain that would wake me in the night. I also developed a strange, very painful, burning sensation in my brain. It felt like a metal plate was on fire in my brain. I started seeing various doctors for my troubling symptoms.
First, a cardiologist for my heart palpitations. The measuring devices indicated I was having arrhythmias and mitral-valve prolapse, but they could not find a cause or reason to treat. Then I saw neurologist. Nothing was found after numerous tests to explain the ongoing burning so nothing was recommended. Then, I went to a gastroenterologist for the gut pain, nothing was found- nothing recommended. I went to an infectious disease specialist. After every test he could use as well as those “allowed” for Lyme Testing by the CDC, he still could find nothing to indicate a problem and my Lyme test was negative. (I now know it was a false negative which is very common with these tests.) So, again no recommendations were made.
“I was still terribly affected and getting worse, so I sought a consultation with a nutritionist that is called a “Doctor House of sorts” on the East coast who consults under two doctors that work with complex cases. After treating me with “all his big guns” (as he put it) for six months with nothing helping, he did another test for Lyme . He found the Lyme test was positive for Borrelia and Babesia (a co-infection). Finally, I knew what the problem was!
“Now, I had to find a Lyme-literate doctor, that was also a huge challenge. After much research and the recommendation of my local doctor who herself had Lyme, I had to create a GoFundMe page to ask for help with funding to get treatment in Seattle, WA. After finally getting there, I found I have five other co-infections and am on the roller coaster ride of treatment. I am also doing Bee Venom therapy, using 10 live bee stings three times a week on my back up and down my spine. My doctor agreed this was a good treatment in addition to what their team was recommending. I plan to do that for at least two years, along with my treatment from the clinic in Seattle.
“I can’t say l feel any better yet (two years of treatment, only nine months of bee venom therapy), but I do feel good knowing I am finally in good hands with specialists that deal with this complicated illness all the time and have been doing this for over 40 years!
“I am disturbed by the lack of research, funding, good testing, or universal treatment agreement regarding the treatment of this terrible illness. So now I am an advocate for Lyme awareness and as I get better I will do everything in my power to help others prevent getting this disease and learn how to be smart in this world we live in.”
5 Comments on “Mary Sue A.”
Are you willing to give the name of your doctor in Seattle. I live in Alaska and can’t find a doc but can get to Seattle.
You can also turn to the International Lyme and Associated Diseases Society (ILADS) physician referral service for doctors in your area. They should be able to refer you to doctors in Alaska or Canada that may be geographically closer. Best wishes.
Hello! Tell me how your current state of health?
I am from Russia, my name is Alex, I am 27 years old and I just now began to understand what is happening to me.
Hello Mary Sue and thank you for your website. I too am having SOME of the symptoms you mention. I am having severe arrhythmias, diagnosed with MVP. Like you, active and eat well all my life. I do not have joint pain. I have SEVERE insomnia, and a buzzing in my head. I started seeing a Integrative Medicine doctor and she suggests I test for Lyme and mold. I live in Mexico and am considering LymeMexico to be tested. A question.. there are so many false negs, is that because the labs are not doing the right thing and how to be sure if you are going to a good lab? Thank you for any info and especially just the connection. This is so scary. I’ve been having trouble for over a year.
Hi Debbie. The current lab Lyme tests are inaccurate because they are basic, not very specific. The tests (ELISA and Western Blot) approved by the CDC and covered by most health insurance providers have high false negative results. A company called IGeneX, located in northern California, provides the most accurate testing for Lyme and other co-infections. Hope this helps.