My Lyme Story So Far

Last updated 2018

Like so many, my health story is complicated. I've lived with chronic illness for 24 years. I was misdiagnosed for 16 years with various things, including several neurologists telling me I had MS. I had this "official" diagnosis for many years, but I knew it wasn't right deep in my heart. Years later, this would prove to be true. If you're interested in learning more about this, please read my blog post, Journeying Through Chronic Illness.

The significant decline in my health started after having oral surgery in 1994 to remove abscessed bone from my maxilla. It was after this initial surgery that I first became ill. I developed mono (Epstein-Barr), which became chronic. A few years later, I had to have two subsequent surgeries to deal with complications from the first one. The very first Lyme-related symptoms I recall ever having been were eyelid twitches followed by optic neuritis. Please read Oral Spirochetosis, Lyme, and Other Chronic Diseases for more details.

I believe that surgery opened the door wide to the Borrelia (Lyme) bacteria already present in my body. I don't know the exact date I was bitten by the tick or ticks that transmitted Lyme and other infections. The only bull's eye rash I've ever had came out in 2012 during some of my treatments.

I also believe that surgery led to profound immune suppression and nervous system dysfunction by the Borrelia bacteria and the Epstein-Barr virus. This began a 16-year nightmare of misdiagnosis. Those years were filled with ongoing doctor appointments, testing, blood work, other specialty labs, hospital stays, and different therapies. And it was filled with deeper growing sickness, physical exhaustion, debilitation, vertigo, pain, and unsteady gait. 

I had to quit work as a Radiologic Technologist in 1995, at the age of 24, because I was too sick and fatigued to function and because I had severe vertigo attacks. I also had to move back home with my parents that same year. Life as I knew it then came to a crashing halt. It was overwhelming and scary. I developed a contracture in my right knee and began physical therapy the following year. It became even more frightening when I could no longer balance or walk on my own. The contracture wasn't getting better, and my gait became so unsteady and abnormal, I suddenly found myself in a wheelchair. Little did I know, this was only the beginning of a very long, complicated, and hard road.

June 1998. Inpatient therapy at CHRH. I was 28 here. Standing for the first time in over a year strapped in stall bars, I felt pretty sick. I had physical therapy for several years as an inpatient and outpatient at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky. Unfortunately, we didn't know I had Lyme yet.

March 2000. Outpatient therapy at CHRH. Working with Mindy, my physical therapist. I'm harnessed into the Lite-Gait system. This prevented me from falling but also required my body to move. Very, very hard work. Still no knowledge of Lyme.

Over the years, we struggled to find what was causing my body to be so sick and dysfunctional. I began having more physical therapy to rehab my balance and gait and to strengthen my muscles. This was interlaced with more ongoing doctor's appointments, labs, and testing. Doctor after doctor, test after test, diagnosis after diagnosis, and one drug after another only led to more questions and deeper frustration, and I continued getting worse. 

I had to quit physical therapy because I became even more severely fatigued. So much so, I literally could not get out of bed to take a shower, much less go anywhere or do anything. I started running fevers daily. I hurt everywhere; muscles, joints, and lymph nodes. My spleen and liver ached and started swelling. I had a lot of burning, tingling, buzzing, and numbness in different parts of my body. My throat was sore all the time. The light hurt my eyes, and I started having terrible headaches. My vision got blurry. My digestion grew worse. I frequently became short of breath and developed an arrhythmia. My muscles grew weaker and began to atrophy. I could hardly ride in a car at times because it would make me feel so dizzy and nauseated. I felt like I had the flu or mono all the time. More and more of my body systems became involved. And I still could not balance myself or walk on my own. 

This became my new normal.

An integrative medicine doctor eventually found high levels of chronically active viruses (Epstein-Barr Virus, CMV, Varicella-Zoster Virus) and Mycoplasma. He clearly felt I had an immune deficiency and believed the reactivation of these viruses was secondary but didn't really know what the primary or underlying cause was. We tried anything and everything, and while some things helped at the time, nothing gave me lasting relief or helped to significantly improve my overall health. I kept getting sicker, and the chronic fatigue became even worse - bone-crushing exhaustion.

I've been totally debilitated and bedridden for many stretches of days, which turned into weeks as the weeks turned into months and the months into years. I lived in the bed for 12 solid years, only getting out for my doctor's appointments and lab work, and I had to drag myself there at that. It seems like a surreal Lifetime movie, but it is absolutely true. 

It's been intensely frustrating, discouraging, and lonely. And some parts of this I have no words for.

July 2003. Immune Recovery Clinic. Atlanta. Went for more intensive treatment. Had a PICC line put in for long-term IV therapy for chronic viruses and Mycoplasma. I believe this intensive therapy helped to preserve me in some way. However, we still didn't know the root of my illness was really Lyme disease. This discovery wouldn't come for seven more years.

It was in 2010 that I was finally diagnosed with Lyme disease. It actually took sixteen years to find out I've had Lyme all along, and all along, it's been inside my body, disseminating and creating dysfunction and damage. It has been a literal fight for life.

My present doctor ultimately discovered this truth. We have worked diligently to find answers and improve my health. In consulting with other physicians, we've also found some co-infections and other significant pieces along the way to this crazy puzzle. Still, Lyme was undoubtedly the major missing piece. It's been a roller-coaster ride, to say the least, but we've pressed on, and we're still pressing on.

By the time we found Lyme, it was in a persistent, chronic state and still is. It has infected my nervous system and created a lot of immune system damage and dysfunction, among other things. Lyme, and other tick-borne infections, can make you extremely sick, fatigued, and debilitated, and the longer one goes without treatment, the more damage can happen. This is why proper diagnosis is so important. Unfortunately, this is why so many of us are where we are today - because of delayed diagnosis or misdiagnosis.

June 2013. During some ongoing Lyme treatment. Lyme is very difficult to treat once Borrelia spirochetes have invaded cells and begun replicating. But you never give up trying. 

I also first began a full Lyme treatment in 2010, and while we have taken a few breaks, I've been on some form of treatment ever since. 

After consulting with an immunologist in September 2013, we found out that the Lyme infection was still active, even after three previous years of various treatments and therapies. I think this reveals both the complexity and difficulty of this disease, especially when left untreated for so long, which allows the Lyme bacteria to disseminate throughout the body quite easily.

A long-term Lyme infection almost always involves co-infections and more significant dysfunction in the body, which is an all too common story. Other tick-borne diseases are frequently involved (Babesia, Bartonella, Ehrlichia, Relapsing Fever, Rocky Mountain Spotted Fever, Tularemia, Mycoplasma, etc.). 

Viruses (Epstein-Barr, CMV, HHV-6, Varicella-Zoster, etc.) and other bacteria (Strep, Staph, etc.) can reactivate because the immune system's defense mechanisms are often damaged by the Lyme infection. So the immune system can no longer control or keep past infections adequately suppressed, and they reactivate. Opportunistic infections can also occur as a result.

To say there is much collateral damage with these pathogens is an understatement. Multiple organs and body systems become involved. Activation of the inflammatory cascade often occurs. Hormonal imbalances rooted in prolonged inflammation affect adrenal, thyroid, pancreas, and liver function, inducing reactive hypoglycemia, glucose intolerance, and/or insulin resistance. Nutritional deficiencies often result from years of chronic infection because pathogens frequently rob the body of nutrients for its own survival. It literally creates a domino effect throughout the body itself.

So the body gets extremely taxed with the barrage of multiple infections and chronic inflammation. Therefore, healing is a process that requires stopping the Lyme bacteria from replicating and reducing the inflammation and pathogen load (other bacteria, viruses, mycotoxins, parasites). It also requires repairing the damage done and restoring balance back to the systems of the body. 

Addressing genetic mutations, which affect the body's ability to detoxify, is also necessary. If one cannot detoxify properly, one cannot heal fully. And the longer one is misdiagnosed or delayed in treatment, the more complicated and difficult this entire process is. So it has been for me and many others with long-term or chronic Lyme disease. 

I've been through so much, but it just isn't possible to totally put the past 24 years of my life down into a few paragraphs and photos. Nonetheless, this is a summary of some parts of it. 

So, where am I now in all this?

Certain things are better, which I'm so grateful for, and other things are not. And then some fall in between and fluctuate. I'm still working to be well, and it is truly ongoing work. I believe this speaks quite clearly to the severity, chronicity, and complexity of Lyme disease. It is a long, hard road I'm still traveling. 

Improvements: 

1. After much physical therapy and a lot of hard work over several years, the contracture in my right knee has dramatically improved. 

2. Although I must still use a wheelchair, my movement and balance are much better overall. I can walk some with a cane, but it can be very taxing. And while this is wonderful, it has created a whole new set of problems for me physically, which is, unfortunately, causing more pain and muscle weakness. 

3. Fatigue and fevers are still issues for me. However, they're not quite as severe and crushing as they have been for so many years.

Honestly, you never think something like this will happen to you (or someone you love) until it does, but if I've learned one thing through these past many years, it's this: faith, hope, love, determination, and perseverance will get you far. 

I'm still working every day to be well. I won't quit, although I've had moments I wanted to. I do get weary at times, but I still have hope, and I still trust Him; God and I will see this through.

In the meantime, my Lyme journey continues.

Michelle

September 2014

All photos and content copyright © Michelle Holderman