Locked Up by Lyme
A mother and daughter get released and a father gets taken away
By Kelly Truitt, Thyroid Fix in 6 Participant
In June of 2008, my seven-year-old daughter and I went on a horse pack trip in Mammoth, CA. My fifteen-year-old son and my husband had a “guys’ weekend” and my daughter and I enjoyed an adventurous “girls’ weekend” with other family members.
A month later, we were back into our normal summer routine. Our thoughts were far from the trip, with the wonderful memories tucked away in photo albums. I suddenly developed flu-like symptoms including: headache, fatigue, backache, and low-grade fever.
In between the pack trip and my symptoms, I had been cleaning out a storage shed and encountered rodent droppings. I went to urgent care to rule out a connection. Blood tests were run, including one for Hantavirus and a chest x-ray. All results were negative, but I was put on Zithromax (Z-Pak) for three days, based on my symptoms. I started feeling better and was relieved that the antibiotics took care of the infection, or so I thought.
About a week later, a rash appeared on my chest and my GP prescribed cortisone cream, which cleared it up. A few days later, the same flu-like symptoms started up again, with additional symptoms. They’re Baaaack! Night sweats, shortness of breath, and sensitivity to light and sound were unlike other symptoms of illness I had experienced in my life. Now I was getting concerned.
The fever continued and by August, the increasing shortness of breath landed me in the ER. The doctor who examined me was baffled. He called in an Infectious Disease doctor (ID). The ID doctor was very interested in a trip my husband and I had taken to Barbados for our twentieth anniversary, back in 2005. He ordered a battery of tests, which included a spinal tap, Hantavirus (again) and West Nile virus. I was discharged with “viral syndrome” and put on Doxycycline for ten days. The results of all the tests later came back negative.
About a week after my ER visit, I had a follow-up appointment with the ID doctor. I was still symptomatic and the fatigue was keeping me in bed for most of the day. The three-week-long fever added insult to injury. “You have an unknow virus. Here’s a prescription for Vicoprofen. Go home, rest, and drink some tea.” Really?!
Another week went by with no improvement, so I went back to my GP. He ran some more tests to rule out mononucleosis and Lyme disease. As soon as he brought up Lyme disease (which I am grateful for), I began researching and was convinced that is what I had. My symptoms were a perfect match; however, the tests came back negative.
The testing that was done, was the standard CDC/FDA approved two-tiered testing (Centers for Disease Control and Prevention/Food and Drug Administration). https://www.cdc.gov/lyme/resources/twotieredtesting.pdf
The first tier includes an EIA/ELISA, or IFA (Enzyme Immuno Assay/Enzyme Linked Immunosorbent Assay, or Immunofluorescence Assay). I was given the ELISA, which is a type of EIA. The CDC states that EIA tests are designed to be very “sensitive” (when used properly, almost everyone with Lyme disease will test positive), but that it is possible to test positive when Lyme disease is not present.
I recently attended the lymedisease.org conference, My Lyme Data 2017 Overcoming Lyme disease. I learned from some of the top experts in the field that current two-tiered testing has a sensitivity of 46%, which is inadequate for a diagnostic test. HIV testing, in comparison, has a 99.68% sensitivity. False positives are very rare (with the exception of a specific testing band, 31kDa). This begins to explain why, in the past, the CDC underestimated new cases of Lyme disease at 30,000 per year but more accurately there are about 300,000 cases per year.
The second tier includes a western blot, if the first tier is positive. Since my first tier was negative, no further testing was indicated. Unfortunately, this two-tiered approach misses about 50% of actual Lyme disease cases and I later became part of that statistic.
My symptoms continued to snowball with joint pain and loss of my voice. My GP was eager to help me and suggested testing me for pharyngitis and rheumatoid arthritis. Because I was convinced I had Lyme disease, despite my test results, I decided it was time to seek out a Lyme Literate Medical Doctor (LLMD). I also did a full body check, once Lyme was suspected. Sure enough at the base of my back, there were remnants of what looked like ticks. Yuck!
By the time I saw the LLMD in September, my symptoms were progressing. Insomnia, speech issues, memory issues, and stabbing pain made daily life a challenge. My front door was covered in Post-it Notes to help me remember basic routines.
Based on my clinical exam, the LLMD ran tests through a specialty lab in CA, IGeneX. I was relieved and terrified to learn that I did indeed have Lyme disease (caused by the bacteria Borrelia burgdorferi), as well as Rocky Mountain spotted fever (caused by the bacteria Rickettsia rickettsii). The LLMD started me on a treatment plan including long-term antibiotics and numerous supplements. My Lyme prison sentence had begun.
My daughter also began having symptoms, but each time she saw her pediatrician, she was diagnosed with something that seemed unrelated to what I was going through, such as strep throat. After many school absences for sore throats, stomach aches, cold symptoms, headaches, and joint pain my husband and I decided to have her tested to rule out Lyme. Unfortunately, in November, we learned that she too tested positive for Lyme disease; however, she was negative for Rocky Mountain spotted fever.
We both began seeing my second LLMD after my first one did not put me on probiotics along with the long-term antibiotics. I later learned probiotics are usually a standard protocol and help to prevent additional symptoms which I experienced due to a delay in starting probiotics. My daughter was in Lyme prison for a year on long-term antibiotics and supplements. She did especially well on the supplement cat’s claw. She was released from Lyme prison and has been symptom free for over eight years.
I was in Lyme prison for over two years and was not released until a year after my daughter. My treatment was more complicated due to my coinfection of Rocky Mountain spotted fever. Besides various medications and supplements, my treatment also included physical therapy and six months of IV antibiotics. I was less symptomatic on the IV antibiotics. Unfortunately, I later required surgery to remove my gallbladder, due to complications from the IV antibiotics. It is important for Lyme patients, especially those whose coinfections necessitate treatment with IV antibiotics, to be on organ protectants such as Actigall.
I also had a nodule on my lung that was assumed to be from the Lyme disease. In 2010, at the end of two years of treatment, I was functioning fairly well, but still not at full capacity. I sought out a consult with a LLMD at an “expert” level and the air travel to and from the appointments was well worth it. I was told that the nodule should be further evaluated and it was not the opinion of this doctor that it was related to Lyme. I was given some additional treatment and the Lyme symptoms began to diminish.
Although I was feeling like I was recovering from Lyme, I ended up having lung surgery for the nodule. It turned out to be BAC (bronchioloalveolar carcinoma). BAC is known to be an uncommon, non-small cell, lung cancer. It is more common in middle-aged women who are non-smokers, which applied to me. It was removed, the margins were clear, and no follow-up treatment was needed. I have been out of Lyme prison and cancer free for over seven years. For me, the silver lining of having Lyme, was the early detection and removal of lung cancer.
Fast forward to June of 2015 (seven years after my daughter and I first became ill). My husband began feeling ill with fatigue and flu-like symptoms. After six months of symptoms, his doctor ran some blood tests and diagnosed him with hypothyroidism. We had finally found an answer, or so we thought.
After starting on thyroid medication, his endocrinologist told him his labs were normal. His symptoms, however, were not. Back pain, dizziness, nausea, and increasing fatigue began to interfere with daily activities. He began a thyroid supportive lifestyle, which was the building block of his future treatments, but his symptoms continued. http://yourbestthyroidlife.com/
He sought out an integrative doctor, who did more extensive bloodwork and although some deficiencies were found and treated, the symptoms increased. After two ER visits, suspicious weight loss, increasing migratory pain, and various other symptoms he was forced to take a medical leave from work. During that time, we started wondering if he could possibly have Lyme disease. Some friends also mentioned this, who had experience with the disease. Even though my daughter and I had done hard Lyme time, my husband’s symptoms were different and so long after ours, that it took over a year for us to request that he be tested.
This time, we knew what tests to request and which lab to use. Sure enough, he was positive for Lyme disease. Based on our past experiences, we immediately found a LLMD at an expert level to treat him. He also had multiple coinfections such as ehrlichiosis, babesiosis, and mycoplasma just to name a few. His doctor told him he was like a perfect Lyme storm. Every bodily system that Lyme and coinfections could debilitate were being affected.
At the time of this writing, my husband is still locked up by Lyme, but has made progress since being diagnosed and properly treated. He has recently returned to work from a second medical leave. He has been in treatment for one year and has had too many therapies to list here. He has seen the most improvement from a combination of long-term antibiotics and antiparasitics. He, like most Lyme patients, is also on a multitude of supplements. My husband currently takes a combination of eighty medications, supplements, and tinctures daily. He has responded especially well to the Byron White Formulas such as A-Inflam, Detox 1, and A-Myco. We are hopeful that he will be released from Lyme prison soon.
It is a mystery how my husband got Lyme disease and coinfections. There are so many ways to possibly contract it, a medical explanation is not available. Although most people connect Lyme disease with ticks, some research suggests it can also be transmitted by blood sucking insects such as mosquitos, flies, fleas, and mites. Some of the Lyme experts, who spoke at the conference I attended, stated that Lyme and Bartonella (a coinfection) can be transmitted in utero. They surprisingly stated that some coinfections can survive well in blood transfusions; however, Lyme does not have a high survival rate.
Blood screenings are in the process of being developed, but currently there are no restrictions for blood donors if they have had Lyme. There is also research which indicates that Lyme disease may be sexually transmitted.
I am often asked how I have endured Lyme, other medical treatments, and caregiving for my family. My husband and I have been blessed that our marriage has been strengthened during health challenges. That is not always the case. The love and kindness of many family members, friends, and our church family have supported us during our trials and Lyme lock ups. But the key was never thrown away because of hope. I did not lose hope because of my faith through Jesus Christ in God’s constant love and presence.
As written in my favorite poem Footprints in the Sand, I believe that when I look back on a life trial and see only one set of footprints that the Lord was there and carried me through. Sometimes when we are crying through our hardships, I believe God is crying right along with us. “I can do all things through Christ who strengthens me.” Philippians 4:13