The One Advantage I Have From Being Ill for More Than 40 Years

My long journey with chronic illness began with a strange “bug” when I was only 13. It passed in a few days, but I was never the same afterward. A large bullseye rash and many smaller rashes appeared on my waist and upper body during this stretch of time. Yet no doctor ever thought to test for Lyme disease, even with this in my history, until 2013. I was ill for 40 years and disabled for the most recent six of those before a doctor discovered one of the most robust cases he’d ever seen with multiple strains and co-infections — all untreated for decades.

I also happen to be a double-winner as I have the “dreaded genotype,” which not only makes Lyme hard for my body to fight, but also makes me ill from mold and other biotoxins, which is a condition known as chronic immune response syndrome (CIRS). Mold exposure actually landed me in the ER once, and it’s often worse than Lyme itself.

Lyme disease is known as the great mimicker, since it can affect myriads of systems and is often mistaken for a list of other illnesses, from Alzheimer’s to ALS to arthritis. When you add in the co-infections, which typically come from the same tick bites, along with genetic susceptibility, toxins and other factors, the list gets longer and the effects more profound.

Thus there is a great deal of misunderstanding about what Lyme disease looks like. People who are close to me can usually discern when I’m in a relapse because they’ve become aware of the nuances in my behavior, energy or the sickly look in my eyes. However, this crashing, relapsing phenomena is hidden for most people.

If I have one advantage from my 43 years of being ill, it’s that I’ve had a very long time to observe and tease apart the reality of the illness. I also have the unusual perspective of one who was never treated. I am truly one of the lucky ones, since many people decline far quicker than I have and some have died.

I have years of notes and research on my experiences. But even so, when this article presented the challenge of describing the nuances, I found it very difficult. There is some trauma with every relapse and some amnesia with every reprieve. I had to be in the midst of a crash to write about some of the subtler aspects.

My hope is that the following list of symptoms and effects of chronic neuro-Lyme/CIRS (referred to as CLD/CIRS below) will help bridge people with the illness with those who seek to understand their path.

Although the following list will resonate with many patients, myriads of presentations are possible. This is only my experience

1. Crashing fatigue.

It feels like an alien takeover — literally. There is a metabolic tone and vibration to it, which steels the life force. A chronic pressure in the middle of my head, which has been there since the onset gets worse. It feels “coma-like.” It’s very deep and pervasive and doesn’t improve until it has run its course. Sleep and rest don’t help. It can effect mood but usually not.

At different times it can affect body temperature and cause tremors and heart palpitations, since it also affects the autonomic system and hormones. I often develop a sore throat, swollen glands, aches and occasionally fever.

However, these are little more than nuisances compared to the profound effects on cognition and energy. I can be house-bound or nearly bedridden for a month or two with each crash. It’s so deep that I am physically weakened, shaky and unstable for another two weeks after it subsides.

2. It varies (even in good phases).

You might find me sharp, quick and clever one moment and then slow and very mechanical 30 minutes later. You may find me confident one day and struggling the next. You may find me engaging then a little aloof. If you’re not in my immediate inner circle, there’s a chance I’ll forget your name. You may find me in a state of profound fatigue for weeks, then up and about with seemingly nothing wrong.

For me, it manifests as cycles of crashes and reprieves, though the reprieves are mostly a lessening of symptoms. There are rarely times when my symptoms are gone.

3. Post-exertion malaise.

When energy is there, it’s a shallow reservoir, both physically and mentally. The wall can be very hard and noticeable when the reservoir empties. Physically I suddenly become drained in every muscle. If I’m in a social setting, I begin tripping on words and my communication becomes disjointed and disorganized. Then stress of word-finding depletes this reserve more. This is one of the reasons we hibernate from time to time — to restore — but also to avoid embarrassment and humiliation. Like most things with this illness, it comes and goes, but is always there to some extent.

4. Sensory processing issues.

I feel it most in hearing, stimulation and perception, but it also happens with light. A noisy place can feel like a thousand daggers in my eardrums. This can cause me to go into crash mode quickly. I have examined this for years, as anxiety can cause a similar phenomena (I’ve experienced this as well). However, I’ve discovered over and over that the sensory issues always come first, which comes down to a pervasive change in neural workings, similar to how people on the autism spectrum can shut down. We can then experience anxiety as the end result of real trauma.

5. It’s progressive.

When I was fighting a social security disability case, a doctor went over my earnings in the years leading up to the crash that disabled me. It was clear to him that my condition had been declining for years. Although the crash threw me into uncharted territory, which has progressed even further since that time, I had been heading there for years. Over the years, illness has taken skills I once had and robbed me of endurance to do things which were once easy.

6. Reprieves.

Over 40 years, I’ve come to think of these times as normal, but they aren’t, and I am reminded of this every time I try to live normally. There are subtler cycles and crashes within these times. It’s more of a continuum than a dividing line. The bottom line is that microbes are always present and always affecting brain function and energy.

7. Environmental issues.

Thirty years before my diagnosis, I had already discovered that lactose, sugars, gluten and other foods could make my condition worse. At 28, I discovered that mold could put me in the hospital. There are genetics that are responsible for cellular detox. Mine are poor, and I suspect this is true for many of us.

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