I was diagnosed with Lyme and multiple tick-borne infections in the Fall of 2010 after a long and circuitous journey. I’d spent seven years trying to get to the bottom of my symptoms and finding a doctor who could help me.
I’m still in the thick of treatment; in fact, I’m just about to embark on an eight-month journey of IV antibiotics — not an easy feat. However, my doctor has advised me that this is the only way to get the Lyme out of my central nervous system (CNS). I admit, I am fearful at times. However, with the encouragement of my God, doctor, family and friends, I remain hopeful I will beat this disease once and for all. My fondest hope is that this blog will help others feel more hopeful and secure as they wade through the oftentimes confusing and political world of Lyme disease!
Some people may already be aware of Lyme Disease. What they most likely do not know is that a tick is almost always infected with more than just Lyme; it is often infected with accompanying co-infections. Worse, it inhabits pretty much every part of your body. Thus, Lyme literate physicians (LLMDs) call this disease Multi-Systemic Tick-borne Disease (MSTD), rather than Lyme.
As I mentioned, the Lyme bugs can carry many co-infection organisms such as Babesia, Bartonella, Erlichiosis, Rocky Mountain Spotted Fever and others. They pick them up in their infancy stage when they bite into their first prey — a mouse or other small rodent, bird, or animal. Thus when treating, it is crucial to have a skilled physician who not only knows how to treat Lyme but also knows how to find and treat all the accompanying co-infections. As Dr. Horowitz, a well-known Lyme specialist, puts it, “If you go to a doctor with five nails in your foot, and the doctor pulls out two nails, and you still have foot pain, it doesn’t mean the treatment was ineffective; it means you didn’t pull out all the nails.“
I am not sure when I first contracted Lyme. What I do know is that I was bitten many times as a kid and adolescent because my family camped several times a year. It was pretty standard that we would pull several ticks out of our heads and legs. From the time I was a young child, I struggled with a monthly recurring flu that even landed me in the hospital a few times. Still, I was mostly fine until August 1994 when, at the age of 27, I suffered a terrible flu characterized by fainting spells, dizziness, and shortness of breath. Having a nurse’s mentality, I tried to ignore it. But I as I quickly grew sicker and sicker, tuning out these debilitating symptoms became impossible.
I went to the ER before ending up in cardiac ICU for about ten days, where my heart was beating at 200 beats per minute (BPMs). I was weak and faint, and every time I moved, my heart rate would elevate again. The doctors could not figure out what was wrong with me. They eventually decided I had contracted a virus that attacked my heart and subsequently prescribed heart medication. After a month they tried to wean me off, but the rapid hear beats immediately returned. This pattern repeated until finally after about a year, I was able to stop the medication without any re-occurrence or damage to my heart. While it was incredibly frightening, God protected me. Once over, I didn’t give the experience a second thought.
At the time I didn’t know that Lyme typically starts as a flu, and if not treated soon enough, travels either to the heart, the brain, or the soft tissue. Was it possible I’d contracted Lyme but the doctors didn’t know enough about it to investigate? I cannot say for certain since I was never tested.
While my symptoms disappeared after that harrowing year, I did experience cyclical flu symptoms. Again, remaining true to my nature I just kept moving forward. I refused to let those sick periods impact my lifestyle. I worked long hours at jobs I loved and spent my free time leading international mission projects, hosting bible studies, traveling, volunteering at church and other organizations, or hanging out with family and friends. They were very good years.
Then on April 10, 2003, while working as a pharmaceutical rep, I fell while visiting one of my neurologists at Riddle Hospital. I tried to get back up to work but my head was spinning and my vision was impaired. At the ER, I was told I had sustained a concussion. At the recommendation of another neurologist-client, I went home to rest with little stimulation. Watching TV, using my laptop, or going on the internet were strictly off-limits. Due to the post-concussive fatigue, visual problems, and vertigo I was having, it was hard for me to leave my house. I did a lot of gardening during this time because I needed to feel productive. I was not used to having so much time on my hands and, quite frankly, I hated it. Now I sometimes wonder if I could have gotten bitten or re-bitten as a result of my actions. I just really won’t ever know.
The difficulty with Lyme is that when the ticks are in the nymph stage, they are the size of a poppy-seed and can be mistaken for dirt. You would think that when the tick lands on you and embeds its fangs into your skin, you would feel it. But being very smart critters, they anesthetize the area with a numbing agent so you don’t feel a thing. In addition, they emit a type of blood thinner to easily draw your blood into their body. As they do this, they also emit saliva which contains the Lyme and other infections.
Did I experience a re-occurrence from an earlier bite that was never treated or was it actually my immune system that failed as a result of a fall, allowing the existent Lyme to overrun my body? Again, I just don’t know. Sadly this is the case for most chronic Lyme sufferers, hence the reason their affliction becomes chronic. (Chronic means either the infection is not detected during the acute time period, or the symptoms persist beyond this acute stage. This gives the Lyme infection more time to replicate and spread. As a result, it takes longer to treat and becomes more complicated to eradicate.)
Still feeling ill, I went along with my neurologist’s treatment but instead of improving as expected, I got weaker, felt more exhausted and developed new symptoms. My fatigue became acute and unbearable — to the point that just getting out of bed in the morning was a huge accomplishment! I also experienced chills and shivers, especially in the middle of the night and in the morning. The only way I could ease them was to immerse myself in a hot tub. Immediately following, I would head straight back bed because I kept thinking if I just lie down for five more minutes, I’ll feel a little better. Having to get up to make something to eat was exhausting so I went without food for many days. Unsurprisingly, my weight plummeted to 85 pounds. I sought out several different brain specialists for answers, all of whom wanted to put me on stimulants. Since I was hyper-sensitive to medicine, I had strong reactions.
Having now spent six years with traditional doctors who were unable to help me, I researched on the internet and found a fatigue specialist in the fall of 2009. After almost a year of trying a few unsuccessful protocols, the specialist asked if I had ever been tested for Lyme disease. Since this was the first time a doctor had suggested it, I agreed to the test. On August 17, 2010, the doctor drew my blood and sent it to off to the lab. Although I’d willingly agreed to the test, I was certain I did not have Lyme disease. You see, in my limited knowledge of Lyme, I was convinced that one had to exhibit the “typical” symptoms of a red bull’s eye rash and severe joint pain. It took a month to get the results but — surprise! — the test came back positive. From there, a few more months passed before the doctors decided on a course of treatment. Finally in January 2011, they prescribed the antibiotic Ceftin. I agreed, though still unsure of my opinions about Lyme disease.
Thus began my journey of researching and reading everything I could find on the subject. This is also when I discovered that joint pain is only found in some patients. In addition, only 40-50% of Lyme patients find a migrans rash and, most of the time, the rash is only there in the initial stage when it begins to reproduce and move within the skin. Next, Lyme disseminates from the skin into the blood, lymphatic system, brain, heart, or joints. This is why Lyme symptoms are so diverse. It’s also why Lyme symptoms can change from week- to- week or month- to- month. No wonder it’s so difficult for doctors to test for, let alone diagnose!
While Lyme is still in the skin, antibodies are not going to show up. Even when it has moved into the tissues, heart, and brain, antibodies will still not show up. That’s why there is only a small window of time for the test to register positive. In addition, when Lyme has been in the body a while it tricks the immune system to stop fighting it. No antibodies are produced, and since the Western Blot is an antibody test, the test comes back negative. Patients get sicker but their tests are negative. Welcome to the confusing world of Lyme disease!
After about a week on the antibiotic my symptoms began increasing while my health continued to deteriorate. Some time later, I discovered that this was due to a herxheimer reaction, which in layman’s terms means there were too many dead Lyme toxins in my body. Given that I’d probably had it for a while, there were a heck of a lot of angry Lyme bacteria being stirred up, fighting against treatment. This doctor was unaware that in addition to killing the Lyme, one also needs to supplement with de-toxifiers to pull it out of the body. I stopped and took a break through the summer, but inside I felt awful.
I was so lethargic that simply getting off the sofa was an ordeal. My head felt like it was swelling and throbbing 24/7. I kept saying, “It feels like I have an infection in my brain.” It was hard for me to have clothes against my skin due to strange sensations. The bottoms of my feet were painful, with unsettling tingling sensations. My neck felt stiff. My shoulders ached. My ears were ringing. My body would feel frigid, and I would shiver inside for no reason. I would also wake up in the middle of the night drenched and unable to fall back asleep. My days typically started at 3 a.m. because my body would not fall back asleep once I was awakened by the shivering.
In August of 2011, my dear friend, mentor, and fellow church member Dianne Balch observed my noticeable weight loss and grew concerned about the state of my health. She and her husband asked me to move in with them so they could take me to some doctors who could hopefully get to the bottom of things. Just when I thought my fatigue could not possibly get any worse, it became even more difficult to get up out of bed and take a shower. When I did manage to shower, I had to rest on the ledge (thank goodness there was one!). As soon as I finished, I’d have to lie right down on the bed. Since the thought of blow-drying my hair was overwhelming, I opted for a basic ponytail most days. My balance became a major problem because my head felt like a heavy bowling ball. Whenever I moved it, my balance would be adversely affected. Every so often I noticed I could not swallow. This was not due to a problem in my throat, but rather because my brain was not making the connection.
That fall Dianne and I went to see a few different Lyme literate neurologists. A few of these doctors did other tests and confirmed that Lyme was contributing to my symptoms. That November, I started treatment with a local Lyme specialist. I had to get a PICC line because his main treatment protocol was IV Rocephin. Alas, I got sicker, not better. As I learned more about Lyme, I realized he did not have knowledge on treating co-infections or detoxing the body. Thus, he did not know how to “pull out all the nails.” After a few months of treatment, I wound up in the hospital.
On January 10, 2012, I went to another local Lyme specialist who was known for treating both Lyme and its co-infections. What I hadn’t realized prior to the appointment is that this doctor had recently switched to an herbal protocol, believing in a more natural, holistic approach. After a year on the herbal treatment without much change, I decided it was time to get a second opinion from a national expert.
I chose Dr. Joseph Jemsek, my current Lyme doctor, because he is the top infectious disease doctor for Lyme, and one of the few who is trained by the International Lyme and Associated Disease Society (ILADS). He is known for restoring the sickest and most complicated patients back to health. His office is in Washington, D.C., and people fly in from all over to see him. I had spent so much money and time with local doctors (too many to list), that it was time consult with someone whose life was devoted to getting Lyme patients well.
Unfortunately, there is much conflict over the treatment of Lyme. Guidelines put into place by the Centers for Disease Control (CDC) state that eradicating Lyme requires no more than two weeks to a month. Any symptoms after that are considered post-Lyme syndrome and do not need to be treated.
ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. It believes that treatment must be more open-ended in that the patient is treated until they are well or until symptoms subside. The goal of ILADS is to provide informational exchange among physicians who treat Lyme and other tick-borne diseases, and to advocate for physicians engaged in such treatment.
The CDC method works well for most that get on treatment right away but does not work for those who aren’t as fortunate to know they were recently bitten. In spite of ILADS’ ongoing efforts, any well-known Lyme doctor who treats longer for this disease is often scrutinized by insurance companies and can wind up in court to defend his treatment protocol. As a result, many ILADS-oriented doctors in this field leave, or, if they are courageous enough to stay, find themselves with huge legal and medical malpractice bills. In addition, the length of a visit is much longer since their patients are so complicated.
In return, the high cost of treatment for chronic Lyme disease falls on the lap of the patient rather than their insurance company. To make matters worse, there is very little funding for Lyme disease research. Unfortunately, most of these patients are too sick to work yet cannot qualify for disability because they do not have enough work credits. In addition, the parameters for being considered for Lyme disease are extremely stringent. Since many of these patients do not look sick, they are labeled as hypochondriacs and thus left isolated and hopeless. This must change. Lyme patients deserve the opportunity to get well regardless of their financial situation.
My first appointment with Dr. Jemsek was March 14, 2013. He and his Physician Assistant read over my lab work, and reports about my concussion and Lyme disease protocol. Dr. Jemsek said, “I am sorry you have been through the ringer here. I believe Lyme disease is contributing to your symptoms, and I want to help you get well. I believe you can have improvement with treatment but I do not believe herbals are strong enough to do it. They cause inflammation when they disturb the bacteria. Your symptoms worsen but they are not strong enough to eradicate it.” I have known patients who have gotten well from herbals so I know it is possible. But in Dr. Jemsek’s mind, this disease requires a multi-faceted approach with both antibiotics and herbals. I believe him, and am grateful to have a doctor with such expertise.
On May 6, I went back for my follow-up appointment during which he and I discussed the best treatment approach for me.