My Mom's Lyme disease was not IDSA Lyme Disease - sixgoofykids' daughter

Dear Readers,

I had yesterday's post all planned out and ready to write until I heard about a ridiculous article bashing Chronic Lyme Disease. I found myself typing and typing and typing and now the Wednesday family moment has turned into a day-late, tribute to the Lyme community and about five years with the family. If you are only interested in the short, fun, upbeat posts, scroll down past this long detailed one, and then come back next Sunday to discover a new tip! If, however, you are wondering how the dynamics of our family came to be, this post will probably answer your question. 

This post is in response to an article posted by the Chicago Tribune. I am the daughter of a Chronic Lyme victim. This is what I have to say.

Love,

Morgan

The Argument

Yesterday morning the Chicago Tribune printed an article titled, "Chronic Lyme disease: A dubious diagnosis." Why of course it is! When a tick bites its victim, the said person will find a bulls eye rash, have a high fever and suffer some muscle and joint pain. But after an allotted amount of doxycycline for 10 to 28 days, the symptoms will go away. If the symptoms continue on, and the patient develops additional symptoms, also corresponding with other illnesses, then they simply have "Post Lyme Syndrome" or must have been misdiagnosed.

That is what I hear when I read the Infectious Disease Society of America's (IDSA) Lyme treatment guidelines. If the patient just keeps getting worse, then why assume that they are misdiagnosed? Why not face the fact that 10 to 28 days of antibiotics isn't enough?

Over the years this disease has gotten complicated. Ticks don't just distribute Lyme disease when they bite anymore. Dr Richard Horowitz of Hyde Park, N.Y., president-elect of the International Lyme and Associated Diseases Society (ILADS), said "99.9 percent of the patients I see with Lyme disease are co-infected." Not only are most victims co-infected, but on the ILADS site it is stated that failure to treat these infections increases morbidity and decreases successful treatment of Lyme. 

Maybe the reason patients are still sick after a month of antibiotics isn't because they are misdiagnosed. Maybe it's because, first, a month of treatment isn't enough. And second, Lyme disease now comes in a package deal. Patients aren't misdiagnosed with Lyme, they are just missing the diagnoses of co-infections that came with their Lyme.

Chronic Lyme Disease exists and those who find themselves infected, face months, years, and for some, even a lifetime of treatments and fighting to get better again. They turn to their doctors, but since a month of treatment doesn't work, they only turn to the doctors brave enough to face criticism when they go against the IDSA guidelines.

This article struck me personally since my Mom was so sick for so many years with the exact disease they refer to as a "dubious diagnosis." At certain points in her treatment she was bedridden and affected neurologically. But I'm getting ahead of myself. Let me start at the beginning. This is my story.

My Story

When I was in 8th grade, I was homeschooled with my five brothers and sisters. My parents were health nuts and my mom had an herb for every ailment. My mom was not lazy and she was not some hypochondriac searching for meds.

When I got to high school, I was in and out of going to public schools and homeschooling, but by my junior year my siblings and I ended up in public school for good. Mom couldn't handle it anymore, although we didn't realize yet that her health was declining quickly.

I remember we attributed her health to a gluten intolerance. She began eating gluten free and she felt better. This was just the first of her food in-tolerances. Half way through my senior year, my family moved. Since I didn't want to change schools again, my mom hung back with me. We worked it out with the buyer of our house so that she and I could live in a finished cement-block barn that was located on the front of the property.

We thought that these months with just the two of us came at such a convenient time, since it gave her the opportunity to regain her strength. We didn't realize she was still declining. This is when I first remember seeing her neurological symptoms. I had to remind her of where I was multiple times throughout the day.

When I went to college, is when my mom's health really started to decline. Each time I came home, something would be different. I talked to her everyday when I was away, and could tell from the moment she said "hello" how good, or usually bad, she felt.

She began going to a doctor who diagnosed her with Pschosomatic Disorder. I was flabbergasted. By this point we noticed her declining health and the whole family knew it wasn't just in her head. She read about Lyme on the internet and ordered a test kit. When she asked the doctor if she would run the test, the doctor said she would, but only to prove that the disease was only in my mom's head. The test usually comes back inconclusive (maybe why they might be considered unreliable according to the article in the Chicago Tribune), however, my mom's actually came back positive. The doctor never admitted she was wrong and never reported the case to the Center of Disease Control.

My mom found a new doctor. This time she traveled all the way to New York. And all of a sudden, the mother who always had an herb for every ailment, was on antibiotics. And not just a few. She had a tray. The first time she asked me to bring her the tray, since she couldn't get out of bed, I brought her the wrong tray. She not only had a tray, but had a tray system.

The whole family had adjusted. Dad drove the kids around, worked full time and came home to feed Mom. The kids made dinner, even my littlest sister who was 9 years-old at the time could cook, not microwave, but actually cook a meal. That sister also stopped telling my mom about school events so that Mom wouldn't feel bad when she was too sick to go. My mom had to beg my sister to start telling her about the events again. That way, if Mom could find the energy she could go to the event.

Anyways, these changes happened while I was at school. The first time it hit me in person, rather than over the phone, was when I came home for one night, unexpectedly, with a friend during spring break. I walked in the room and my mom was lying on the couch, unable to move. What little light that was in the room was reflecting off of the grease in her hair. When she had to go upstairs to bed, she never let go of the walls or furniture the whole way to the staircase and then literally crawled up the stairs. The only reason she probably didn't have to get a cane was because she had so much furniture and so many people to help her move. If she would have known I would have been home, she probably would have mustered up just enough energy to take a shower, just like she found energy the two times she visited me at school that semester. But at least I finally got to see how bad she had really gotten.

At one point, my sister went upstairs to help my mom to the restroom. She didn't think, however, of staying to help her back to bed. Hours later, when my Dad came home, he found her on the bathroom floor.

Around this time I had also heard about her "rages." As I understood, she would blow something out of proportion and yell. Let's face it. That happens to all of us at one point or another. 

I remember, however, the first time I was home for one. She couldn't find something in the cupboard. She proceeded to yell and rip into three of my siblings while she took every single item out of the cupboard and threw it on the floor. I escaped and stood around the corner to listen. She couldn't see me, but my brother and sisters could. I was silently cracking up even though this was awful. I had just never seen anything like it. My siblings knew she was having a rage and didn't even utter a response. They held back their laugh when they saw me, let her get it out, and then silently put the cupboard back together.

The bacteria had gotten into her brain and her rages weren't the only time you could see this. Her tendency to forget things became much more often. My siblings developed this entire method of letting her know what was going on (they didn't and still don't have cell phones). On days that she could make it downstairs, she could find a row of sticky notes on the counter with notes from each kid letting her know where each of them was. It didn't matter how many times they told her, she wouldn't remember.

One day, I was going to put on a movie for her. I thought I was having a conversation with her discussing two of the movie options. That was until I looked up at her and realized she was unable to comprehend what I was saying. So I simply asked which one she wanted to watch. Same response; couldn't comprehend. Finally, since I knew that she was always able to type but sometimes struggled with speaking, I asked her to point. It worked.

This whole time she was getting weaker, losing weight, and when she could move, Dad wouldn't let her go anywhere alone. At least one of the kids had to be with her. The foods she could eat became fewer and the amount that she ate became more, yet she couldn't put on any weight.

The next summer one of the medications the NY doctor put her on was an injection. I was the one who was going to have to inject her. After the first injection, which I watched to learn what to do, my mom didn't even have enough fat in her butt to absorb the shot. She wasn't able to get anymore injections.

Antibiotic treatment helped my mom. She was still sick, but I can't even imagine how bad it could have gotten if she wasn't on the meds. Her first visit to New York, my dad said he basically had to carry her. He made her open her eyes to look at New York City. Eventually she was able to go with one of my sisters, who had a much milder case of Lyme. And one of the last times she went, I went with her. By this point she probably could have gone alone, we just didn't want anything to happen while she was there. 

She still had good days and still had bad days. The bad days began getting less severe. She eventually heard about this doctor over in Germany who was using experimental treatment involving light frequencies to treat Lyme patients. She decided she had nothing to lose, dropped all of her antibiotics and went to Europe for the three-week treatment. She came back so much better! She brought a light back with her and for the following year she continued treating her bacterial co-infections.

Now the antibiotics, in the end did not cure her, but if she hadn't had them long term, then I don't think she would have ever made it to Germany.

A Personal Dose of My Argument

I could provide pages of arguments, but instead I'm just going to make a few points disputing the Chicago Tribune's article.

She was not lazy. She was not faking the disease to get attention or to get antibiotics. People can not fake these symptoms. On "good days," when she was still very sick, but could find the energy to get out of the house, she appeared somewhat normal. She was skinny like today's society fantasizes about. She could walk. She could talk. Some people didn't realize that she was sick. They didn't know that for three days after leaving the house, she would be so exhausted that she would not be able to get out of bed. She played the flute at church. Not many people realize that the reason she sat on a stool was because she didn't have enough energy to stand like everyone else.

Like I said, she wasn't trying to get attention. In fact she would do the opposite and try to act like she wasn't sick when she was in public. She was in fact chronically ill. She was weak from the disease, but she was also extremely tolerable of pain and in fact stronger than I probably would be. 

Not only was my mother's Lyme, Chronic Lyme, but it was also treatable. The treatment took YEARS. There was, and still is, no right answer to what the best treatment is yet, but more than a month of antibiotics is needed. As a result, all of the treatment was experimental. If further antibiotic treatment is considered risky and unreliable, what is neglect of treatment considered? If my mom had treated for only a month, then, at her rate, her "Post Lyme Syndrome" would probably have neurologically and physically handicapped her.

If further treatment is referred to as "risky," then I have a question. Should doctors risk lives by ignoring a fatal disease, or should they risk lives by trying to cure it?

Nobody can tell me this was just "Post Lyme Syndrome." That first month of antibiotics did nothing, it was only the beginning.

Maybe antibiotics aren't the answer, since my mom ended up being cured by the light in Germany followed by natural treatments. But at least its a start. It's a lot more humane to give antibiotics than to expect them to be better after 30 days and then just allow them to suffer in intolerable pain. Nobody has an answer yet, but if an experiment is going to work, these Lyme patients want to be a part of it.

To read the Chicago Tribune's article, visit the following link: http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,5671843.story

To read more of what Dr. Horowitz had to say in an unbiased article (unlike the Chicago Tribune's) covering both sides of the Lyme argument, visit the following link: http://www.anapsid.org/lyme/hangson.html

To read more about the IDSA guidelines, visit the following link: http://www.idsociety.org/Content.aspx?id=3744

To read more about the ILADS guidelines, visit the following link: http://www.ilads.org/lyme_disease/treatment_guidelines.html

To read more about my mom's treatment and her story from her eyes, visit her blog: http://sixgoofykids.blogspot.com/