Common tick-borne diseases include:
Rocky Mountain spotted fever
Colorado tick fever
Caren and Victor’s Lyme Disease Story:
Caren grew up on the East Coast, Victor grew up in the Midwest of the U.S. They were both exposed to ticks in childhood. Caren developed a rash at age 14 while visiting Cape Cod MA, very close to the time and place Lyme was identified (Lyme, CT). She began to develop a weak immune system in the years following the rash. Her immune system crashed at age 30; when her first child was nearly 2 yo. Caren experienced crippling arthritis in her joints and became profoundly disabled at 30 years old. She did not know why she lost the use of her hands, legs and voice sporadically during the following decades; or why she experienced constant searing pain in her nerves and bones over the ensuing years.
Victor gave up full time ministry, his life’s passion, to provide medical care for his beloved wife. When Caren’s health collapsed at age 30, he left the pastorate to provide medical insurance to his wife. Over the next 2 decades they spent at least $500,000. seeking a diagnosis and treatment for Caren’s many difficulties. Victor built a business as a General Contractor. In the year 2000 Victor’s health began to fail. He was his own boss; so he was able to schedule his jobs around his declining health. Both Caren and Victor were given the diagnosis of Fibromyalgia in 2001. This answered some of their concerns, but it became clear over the next decade that there were more questions yet to be answered.
In 2009, Victor was offered an opportunity to minister full time again- his dream profession and heart’s desire. They moved 500 miles away from friends and family to find that the job was no longer available. Caren’s health took a turn for the worse in 2011; she saw a Dr. who tested her (for the 1st time) for Lyme Disease. She tested positive. Victor was then tested with the same result. They embarked upon 3 years of intensive antibiotic treatment which may have helped, but caused far worse complications including a heart attack, Sepsis, Peritonitis and others. Each of them came close to death on several occasions. They have been treated for Lyme and the co-infections of Babesia, Bartonella and Mycoplasma.
Their battle continues. Every day is a challenge. Caren likes to say, “we don’t know how we will make it each month, but somehow some way God manages to provide for our needs.”. Their medical expenses remain high, they live off of one disability check, yet still they manage to give to others through the ministry of Prayers for Pets and other community service endeavors. Caren and Victor believe that God put them on this earth to serve their fellow souls; they do this to their best ability every day as the Lord allows. They appreciate your prayers. (see update of C & V’s story below***)
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Getting a Positive Diagnosis for Lyme:
A clear cut diagnosis for Lyme Disease can be elusive; Lyme hides in the brain and throughout the body. It is very hard to eradicate even when treated immediately because of its ability to hide itself. If you believe that you or a friend could have Lyme based on long standing illness; we recommend getting tested through Igenex Labs, they are the current gold standard; meaning that false negatives are less likely through them. We suggest that if Lyme is a suspected cause of symptoms; it is best to read as much as possible before embarking on treatment. If it is possible to see a Lyme Literate doctor (LLMD), that is also recommended; but a doctor alone is not enough to fight the battle of Chronic Lyme. People who suspect they have Lyme must become researchers and advocate for their own health, but a good LLMD can be an advisor. Lyme is complicated; there is no one fix. If Chronic Lyme is diagnosed it will take many lifestyle adjustments to cope with the disease.
Online Forums (Fora):
Books: Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz helps you understand the complexity of Chronic Lyme in an easily readable format. http://amzn.to/2obtxIF *
Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub, Science Journalist fights the battle of Lyme for her son in rural New York. http://amzn.to/2odcN5G *
Lyme Disease is highly politicized especially in the U.S.; the documentaries below explain the political battle pretty well while documenting particular families struggling with Chronic Lyme (also known as Late Stage Lyme, Post-Lyme Syndrome, Lyme Arthritis and others).
Free Documentary: Under Our Skin (2009) may not work on all browsers
New Updated Under Our Skin 2: Emergence (2015)*
C & V’s story Update: answer to a friend’s question about how God healed Caren’s voice: June 25, 2018:
<I don’t know if you knew that I sang professionally for close to a decade; we met when I was largely voiceless I think? I was that way (sans voice) for 20 years. From my late teens thru my late twenties I sang professionally at a number of jobs. At one time I sang with the New Mexico Symphony Orchestra and chorus. We did a tour with Dave Brubeck the jazz musician with his cantata written for New Mexico. After I married Victor and became a Christian we joined the Liberated Wailing Wall (singing group) (that may be us pictured in front of the first bus they ever had in ’80) we toured the world and US for a year-and-a-half. I sang my last concert with JfJ the night before I gave birth to Josh. About a decade after that I lost my voice for 20 years to Lyme disease. Just prior to losing my voice I recorded an album with my friend Tammy. You can hear me sing behind Tammy (the soloist) on the high harmonies.
Of course I wasn’t diagnosed with Lyme disease until 2012 (1st bitten in 1970). Both Victor and I have it. We went thru brutal treatment for 5 years; we are hopefully on the other side of that. It has left us depleted in many ways. I did much reading about vocal issues over the two decades when my voice could not be heard above a whisper. It was 2016 when I found an article which actually tied vocal cord paralysis to Lyme disease. I had scheduled about a month ahead to see an ENT to have my voice assessed to see if I could qualify for some kind of help in getting a device to enable me to be heard on the telephone. I had not had a vocal assessment since 2007 when I was told it was basically incurable.
The date of my appointment my voice suddenly got better and I was able to speak and be heard clearly. That would happen from time to time as you may recall; I thought it was just another one of those times. When they looked at my larynx with a scope they said it was perfectly fine. God had completely healed it that morning! The only time I have lost it since that day was when my mom nearly died in December of ’17. That only lasted a day or two. If I trained myself to sing again I probably could but I don’t really care enough to go through the effort! Lol my singing voice defined me for 2/3 of my life, it doesn’t define me anymore. I am now defined as a child of God who is loved by him. That is all the definition I need.
*These Amazon links if used will donate a small amount to the ministry of Prayers for Pets, a tax deductible non-profit organization