Autism and Lyme Disease—A Mother's Journey
by Tami Duncan
Why do I write this story? For several reasons —
- To highlight to the medical community the imperative need for more definitive tests for Lyme disease because without progress, more kids will suffer and more families will break apart.
- To highlight to parents, teachers and caregivers that just because a child is diagnosed on the autistic spectrum, this DOES NOT rule out Lyme disease. In fact, Lyme disease may cause a child with autism to look a lot more severe than he/she really is. [DEER TICKS RARELY HAVE ONLY LYME BACTER IN THEIR STOMACHS. THEY ALSO HAVE OTHER BACTERIA LIKE BARTONELLA, PROTOZOA LIKE BABESIA AND VIRUSES].
What Does Lyme disease have to do with Autism?
A Story of One Boy's Journey through both
This story is a small slice of my 12-year old son's life. Described are some of the challenges and successes that he endured over the past four years. A remarkable boy, diagnosed with PDD, or high-functioning autism, at age 3, and first diagnosed with Lyme disease at age 5, then again at age 9. I felt that this story, which reveals such a dramatic improvement in autistic symptoms through Lyme treatment, should be shared…
I look at my 12-year old son now with incredulous awe and pride, reveling in all that he has accomplished in a few short months in his transition to the Middle School in sixth grade. In a mainstreamed program, with no academic modifications, Kyle successfully achieved a spot on both the Effort and Honor Rolls during the first and second marking periods. He no longer has aide support in the classroom. As well, he happily participated in a four-day, three-night overnight experience in Nature's Classroom, without an aide, with the rest of his sixth grade class. (This was his first overnight experience away from Mom or Dad.) For any typically developing boy, maybe parents would simply expect all of this. But having a son who was diagnosed on the autistic spectrum at age 3, and diagnosed with chronic Lyme disease at age 9, I did not come to expect any of this. In fact, I had come to expect a great deal of ups and downs. I realized that daily micromanagement of Kyle's issues was the only way that our family was getting by. So when I began to realize that Kyle was managing things quite well independently, I began to understand what a difference the past year's aggressive Lyme treatment had made in the overall well-being of my son.
At Kyle's follow-up appointment with his Lyme specialist, five months following the completion of his intravenous antibiotic treatment, I was beaming to show Dr. R some highlights of Kyle's progress. I gave him a one-page summary of his recent accomplishments, which began with his academic markings. And I was proud to report that Kyle's Degrees of Reading Test score had jumped substantially from a 50 the year prior, to a 66, which was finally grade-appropriate. As well, I was pleased that Kyle had met the Math, Reading, and Writing State goals on the Connecticut Mastery Test for the first time. But what I really wanted to impress on the doctor was the fact that Kyle was actually getting his homework done completely independent of me, with little prodding, and NO help. In addition, his executive functioning tasks of organization had improved dramatically—he was actually able to keep track of his notes, assignments, quizzes, etc. in a methodical, organized fashion without my help — and in a new environment with seven different teachers. Above all, I needed the doctor to see how happy Kyle is, and how much he is aware of his own progress, and filled with pride. (See Appendix 1 for Kyle's own writing piece from the beginning of sixth grade about his progress.)
All of this progress has not blind-sighted me to Kyle's remaining challenges. Nor do I feel secure that we have really "conquered" Lyme disease, as Kyle continues to take an oral antibiotic today. What do I view as Kyle's primary remaining issues? First, he has residual anxiety, rigidity, and obsessive-compulsive-like behavior in how he deals with the continually changing daily environment he faces. This is manifested in periods of perseverative thought, a great need to gain verbal reassurance in schedule changes, and some obsessions regarding weather, travel logistics, and his daily sleep patterns in his need to "control" his environment. But despite these issues, Kyle now is coping well, which is a great improvement over his previous non-compliant and non-participatory behaviors.
Kyle also continues to be bothered by sound sensitivity, and in school is allowed to leave his classrooms a few minutes early to avoid being in the crowded, noisy halls at the same time as everyone else. Kyle's obsession with his favorite topics often makes him appear socially awkward with his peers. I view Kyle's most important remaining challenge to be his lack of connectedness with his peers. I hope that one day he will have a desire and an ability to shift from his reliance on and connectedness with adults to the development of deep friendships with his peers.
Flashback — February, 2000 (Kyle is 9 years old): I am standing in our naturopath's office (Dr. Z) when I hear the first mention of the possibility of Lyme disease having some relation to my son's condition. Here we were, trying to eliminate severe food allergies and trying to readjust Kyle's immune system to respond normally to food ingredients as well as to vitamins and minerals. But instead of describing the allergy treatments (NAET) that we were hoping to begin, this doctor is saying something about Lyme disease.
(Kyle had been on a gluten-free, casein-free diet for six years. This diet is now a typical intervention for autistic spectrum children, given the scientific understanding of the intolerance. Gluten is the protein found in four grains—wheat, rye, barley and oats. Casein is the protein found in dairy products. When Kyle was much younger, I had used food diaries, elimination diets and blood tests to confirm his allergies and food intolerances. Typical symptoms included skin rashes on various body parts, dark eye circles, red ears, rosy cheeks, diarrhea, and major behavior problems that ranged from hyperactivity to withdrawal from people to an abrupt decline in his ability to communicate. As much as I maintain my belief that this intervention allowed Kyle to access a mainstream school environment, the diet was too all-encompassing if there was another way to address this immune problem.)
At our initial meeting with Dr. Z, we covered Kyle's history of food allergies and symptoms. She muscle tested him against many ingredients to confirm my beliefs. She also did blood tests for a baseline analysis of his vitamin and mineral absorption, his amino acid pattern and his fatty acid profile. Dr. Z said, "Before we're able to proceed with allergy treatments, we've got to address this other problem. Your son's blood work, particularly his Amino Acid pattern, would not look like this unless something is feeding on his system. You need to get him tested for parasites and Lyme disease before we begin allergy treatments."
"What?"—I thought, "Lyme disease—I thought Lyme disease was some mild complaint for people who had sore knees, occasional headaches, or fatigue. What does this have to do with my son?" I had a lot of learning to do. By April we had ruled out parasites and had a positive ELISA test for Lyme. What could this mean? I started to get up the learning curve by spending hours on the Internet and networking with friends and a local Lyme advocacy group. There was a fortuitously timed public forum on Lyme disease hosted by our local hospital and this Lyme advocacy group the next month. The two guest speakers, Drs F and B, were both leaders in Lyme research and clinical diagnosis. Their forum was about to "knock my socks off." When they spoke of Lyme disease as The Great Imitator, and then described many patients who were blood-tested, evaluated and diagnosed with Lyme solely because of psychiatric symptoms—often of severe anxiety, uncontrollable mood swings, and panic attacks—I started to see the potential of my son in this picture. This could become an entirely new treatment path for Kyle. Maybe, just maybe, some of Kyle's issues were related to this bacterial infection. My hopes then turned to fear when at the end of the lecture I heard Dr. D tell us that "we are, with Lyme disease, where we were twenty years ago with cancer." I could see that Lyme treatment was potentially fraught with the same complexity and uncertainty as autism treatment.
What is Lyme disease? The CDC estimates that there are 18,000 new cases of Lyme per year, but that the actual number is at least 10 times that (e.g. 180,000) due to poor diagnoses. Our family lives on the east coast. Over 80% of all Lyme disease cases occur in the tri-state area of New York, New Jersey and Connecticut. It is not uncommon for the percentage of deer ticks testing positive for the Lyme spirochete in this region to exceed 40%.
Lyme disease is far more than sore knees and a few headaches. Take a look at this abbreviated list of Lyme symptoms, most of which Kyle exhibited: [source: Lyme Disease Association (LDA) brochure titled "Lyme Disease Symptoms"
- Neck, Face, Head—headache, twitching of facial or other muscles, stiff neck
- Eyes/vision—drooping eyelid, red eyes, blurry or double vision, oversensitivity to light
- Ears/hearing—decreased hearing in one or both ears, pain in ears, ringing or buzzing, sound sensitivity
- Digestive/excretory systems—diarrhea or constipation, upset stomach
- Musculoskeletal system—joint pain and stiffness, muscle pain or cramps, drooping shoulders, loss of reflexes, poor muscle coordination
- Neurological System—pressure in head, numbness in body or tingling or pinpricks, poor balance, lightheadedness
- Psychological Well-being—mood swings or irritability or extreme agitation, personality changes, depression, anxiety and panic attacks, obsessive-compulsive behavior, overemotional reactions, disturbed sleep patterns
- Mental Capability—forgetfulness or memory loss, poor school performance, attention deficit problems and distractibility, confusion, difficulty with concentration, word retrieval problems, difficulty with speech
- General Well-being—decreased interest in play, extreme fatigue, symptoms that seem to change and come and go, pain which migrates to different body parts
What about Autism? Autism has recently received a great deal of publicity, with new epidemiological studies in California documenting the skyrocketing prevalence of this disorder. Estimates are now that roughly 1 in 250 children are receiving an autistic spectrum diagnosis. The autistic spectrum includes the most severe form of classical autism, where a child has no speech, no eye contact and few functional play skills, to a milder form of PDD or Asperger's, where language and social skills are somewhat impaired.
For those of you familiar with PDD or Asperger's—you may be thinking how so many of those Lyme symptoms seem to overlap with autistic symptoms. Such as the following: headaches, vision disturbances and poor eye contact, sound sensitivity, upset stomach and bowel problems, poor muscle coordination, poor balance, mood swings, anxiety, overemotional reactions, disturbed sleep patterns, forgetfulness, attention deficit problems and distractibility, decreased interest in play.
And, keep this in mind—autism cannot be diagnosed through a blood test. It is usually diagnosed based on behavioral observation and intelligence testing, behavioral ratings and adaptive behavior scales. Doctors classify autism as an auto-immune disorder, and many immune system abnormalities are common with this diagnosis; however, there is no known cause or cure for this disorder. Lyme disease is another story. Blood and urine tests, along with clinically observed symptoms, assist in diagnosing Lyme disease. The cause, the Borrelia burgdorferi spirochetal bacterium, passed from an infected deer tick, is well known. And the variety of antibiotics used to treat the disease can cure it. Now, I don't want you to think that I believe that everyone diagnosed with autism really has Lyme disease, but I do believe that there may be other children like Kyle. And if they live in this Lyme-endemic area and have never been tested, I would urge their parents, teachers, or caregivers to consider this possibility.
Kyle at home, spring of 2000: So, what exactly was Kyle's profile in the spring of 2000 (when he came back with a positive Lyme test)—what was he like to live with? First, Kyle was overall a very unhappy boy, maybe even depressed. He often complained that so many things were so hard for him, and frequently was in tears—both in school and at home. Kyle's sleep patterns were irregular, frequently awakening in the middle of the night and talking to himself for 45 minutes before going back to sleep. He had major digestion issues, experiencing reflux, to the point where often, even hours after a meal, whole food was burped up into his mouth. Kyle was extremely rigid and time obsessed.
Homework assignments "could only take 5 to 10 minutes."(!) I turned his clock around while he "raced" through his school work. Reading was a major problem. Kyle was unable to slow down enough to allow for comprehension. I read everything aloud with Kyle, taking turns every few pages. Kyle's body posture was "sloppy." He often leaned on adults for support, could not sit up appropriately at the dinner table, was generally uncoordinated, and benefited greatly from sensory integration occupational therapy. Kyle's overall energy level seemed to vacillate between hyperactivity and fatigue. He had a droopy eyelid, and frequent eye twitches that had seemed to come and go since 1996 (this is a really common Lyme symptom!) And, one of Kyle's worst symptoms, and somewhat unpredictable, was his anxiety that at times developed into panic attacks.
What did neuro-psychological testing reveal? A Triennial review of speech and language, motor performance, intelligence, and achievement testing took place in the spring of 2000. In hindsight, likely the most tell-tale Lyme symptom was Kyle's severe ratings when tested for auditory processing—he was in the first percentile! He had deficits in number memory, word memory, sentence memory and processing information. Motor skills testing revealed below average fine motor skills, motor planning difficulties with gross motor skills, and fragmented skills in visual-perceptual testing. Intelligence testing highlighted a significant processing issue in visual perceptual organization. As well, in sub-testing which required Kyle to discuss an answer, it seemed that he had difficulty with word recall, and often "talked around" a theme before finally getting to the main idea.
What about Kyle's vision? I realize that for many children on the autistic spectrum, eye contact is frequently problematic. But Kyle was unusual in his normal eye contact, gaze, and ability to shift attention visually. However, once we got to small print in third grade, I realized that he must have a vision issue since he could not read a book without his finger. He often complained of his eyes being tired after reading just one page. At his comprehensive ophthalmology appointment, the following visual skills were assessed as either inadequate or marginal: eye movement skills, focusing skills, eye teaming, binocular depth perception, and visual perception. Kyle began wearing glasses for school work and reading, and we embarked on a home vision therapy program, with specific eye exercises at least every other day.
What was school like? Following an unsuccessful school year in Paris, we were able to put Kyle back into a mainstream environment at his old elementary school, but he required a full-time aide and frequently exhibited anxious and non-compliant behaviors. He required ten-to-fifteen minute breaks during each hour-long teaching period. He was placed on a Behavior Contract. Report card comments revealed that Kyle was working hard at following rules and routines of third grade, but that he could only demonstrate variable success by March of 2000. The results of the Degrees of Reading Power test placed Kyle in the low 30s, far below grade level. He required a modified program in Reading to remediate his weaker skills. Special subjects presented behavioral difficulties for Kyle, so a modified program, with one-on-one aide support, was developed in Art, Gym, Media and Music.
To Treat, or Not to Treat? As I researched pediatric Lyme specialists, we continued to proceed with NAET treatments for Kyle's allergies with Dr. Z (the naturopath). After sequential treatments for "basic" allergens, we proceeded to treatments for dairy, wheat and other grains. We completed food allergy treatments with artificial colors, flavors, and preservatives. At home, we introduced Kyle to individual new foods, one at a time, only after successful treatments. I proceeded cautiously and kept expecting to see an allergic reaction. I viewed the treatments as a miracle when we were finally able to feed Kyle all "normal" foods with absolutely no reaction. It was amazing to realize how much easier it was to care for children when one did not have to meticulously plan every snack and meal.
Further, we were finally able to put Kyle on some immune boosting supplements that he had previously reacted to in an allergic manner. The two most important supplements were magnesium (which most autistic spectrum and Lyme patients are deficient in) and a balance of B-vitamins, which Kyle's blood tests revealed were very deficient. It is interesting to note that magnesium helps regulate nervousness and anxiety, among other issues. Subtle changes in Kyle's focus and ability to remain calm became apparent. All of Kyle's Specials teachers - Art, Music, Gym and Media - remarked on his report card about the significant progress, an improved ability to focus, and new enthusiasm over the third marking period. I felt like we were moving in the right direction!
But the Lyme issue continued to nag at me. I was surprised to learn how controversial this disease had become in the mainstream medical community. After calling several doctors, pediatricians, and an autism expert, I was startled and confused over the feedback that I had received. One doctor (who I had never met, and who didn't know Kyle, either) told me over the phone that I was just looking for a simple cure for my autistic son, and hoped that an antibiotic would save him. He warned me that Lyme tests had as many false positives as false negatives. How could he be so adamant when he didn't even know my son or his history? Why does this disease create such intense feelings? I was in shock! Even worse, I was scared! How was I supposed to sort this out as Kyle's mother, when there were no clear answers coming from the medical world? I didn't know if I would be doing my son more harm than good by placing him on an antibiotic. In light of Kyle's past yeast issues and long-term treatment on antifungals, I wasn't sure whether an antibiotic would just exacerbate his gut flora issues. I was not in favor of placing Kyle on a course of long-term antibiotics. But the more I researched and networked, it seemed that if Kyle did indeed have Lyme, then antibiotics were by far the best course of action.
We finally got in to see the pediatric Lyme specialist whom everyone, including our naturopath, had recommended—Dr. J—by early July of 2000. Dr. J convinced me that Kyle was most probably suffering from Lyme disease, explaining the results of a supplemental blood culture test we had done and pointing out balance, joint and muscle twitching issues in the physical exam. He explained how many children's behavioral issues can be linked to Lyme disease because the disease causes so many migrating unusual sensations and pains. Given Kyle's history of symptoms and issues, the doctor further hypothesized that it was quite possible that Kyle had never gotten rid of his Lyme disease from age 5!
In 1996, several months after moving into our present house, which has a wooded back lot, we had first discovered a tick on Kyle's scalp. The tick subsequently tested positive. Kyle developed the classic rash within two days of the tick bite (could this mean a re-infection?), followed by flu-like symptoms. After consulting with Kyle's pediatrician and his immune system specialist, we treated him with 4 weeks of Amoxicillin. Subsequent blood tests detected a negligible amount of Lyme antibodies, so we assumed we had taken care of that disease! What worries me in hindsight is all of my notes on Kyle's droopy eyelid and eye twitching beginning at this time, and continuing throughout the next years until he was re-diagnosed with Lyme. No one at that time ever discussed Lyme disease as a possible cause for this unusual symptom. What worries me further is to consider the possibility that Kyle had had Lyme disease before 1996, and that this tick bite was actually a re-infection. I guess we'll never know the answers to these questions.
Further, Dr. J pointed out what appeared to be red blood cell damage indicated in the blood culture results, and he hypothesized that Kyle may have also contracted babesiosis, a secondary tick-borne infection. However, Kyle did not test positive for this disease through specific antibody blood tests, nor was there an established protocol for treating this disease any differently from Lyme, as there is today.
Lyme Treatment Begins, July 2000: With the test results and comprehensive physical exam, Dr. J convinced me that I would be taking the appropriate action, and the only logical action, by placing Kyle on an oral antibiotic. His recommendation was Ceftin, 250 mg twice daily, building to a dose of 500 mg twice daily. I was reassured by our naturopath, as she muscle-response tested Kyle against Ceftin, and he did not respond. I hoped that this meant we were unlikely to see major negative side effects.
Within four months, my nanny and I noticed subtle, positive changes: a happy demeanor, more calm and focus, better body posture and improved vision and reading ability.
When Kyle began fourth grade, his third grade teacher saw me near the beginning of the year, and said how delighted she was to see Kyle happy again—and wondered what the change had been? His former gym teacher wanted to know what "drug" we had found that was so successful! Kyle's class picture was the first ever where he was not standing directly next to a teacher or aide, but instead was right in the middle of his class, sitting up properly, facing the camera, and with a relaxed smile. (This to me was progress!) Kyle no longer needed ten-to-fifteen minute breaks for each hour-long period—he took three to four five-minute breaks over the day, usually for water or a brisk walk in the hallway. Kyle took all of the standardized tests from the beginning of the year with his classmates in the same room. He showed a substantial jump in his Degrees of Reading Power test result, moving from a score in the low 30s in third grade, to just under a 50 this year! That was beginning to show more grade-appropriate abilities.
He began to consistently achieve his Behavior Contract, instead of going through the variability of the previous year, where, in some months, he achieved his contract 86% of the time, and others, only 42%. Behavioral incidences - defined as a refusal to do work, becoming silly, or walking away from a task—declined to a manageable number. Kyle now participated in Specials without an aide's support, and seemed to be doing well, other than in Art, where he continued to need additional support. It was nice to see him participate in the gym games like everyone else, and enjoy it. Kyle also began playing the clarinet and participating in the School Chorus, and he proudly performed in the school concerts. Kyle took the regular school bus to and from school, as he was now able to accept the variability of the school bus arrival. In third grade, he had needed to take the special education mini-bus home since it was always the first to arrive at school and the first to depart, and he tantrummed or cried if he had to wait for the regular bus.
Kyle could slow down enough to read at least short stories independently and no longer required his finger to read along with it. We added homework of short story exercises with questions, provided by his teachers, to improve Kyle's reading comprehension. And I continued to read novels aloud with Kyle to ensure that he read slowly enough. We discussed what was happening, so that he could both remember chapter to chapter and also understand themes and interpersonal relationships. (Kyle continued to have one-on-one aide support for Reading. It was clear that he continued to need extra assistance in comprehension as abstract themes became more complex.) Kyle could now manage a reasonable portion of his homework independently, and I assisted more with reading comprehension tasks or difficult math word story problems. Although life for Kyle was still not even, and far from perfect, I began to feel that our "crisis" was ending, and that we were finally on the right track! I even felt secure enough with where Kyle was, to take on a part-time job outside of the home.
A Family Controversy: All during this time, third and most of fourth grade, Kyle's Dad had been working in Paris, completing his overseas assignment. He had come home somewhat infrequently, but we had enjoyed several long family vacations together. Simon was coming to the end of his Paris assignment and planned to return to our U.S. home by March of 2001. Although he had originally supported the Lyme diagnosis, and said to "get the best Lyme doctor you can, if that's what he has," Simon was becoming increasingly uncomfortable with allowing Kyle to remain on an oral antibiotic for months and months, and what could be over a year.
Simon continued to be frustrated and disappointed with what he viewed as Kyle's lack of progress. I don't know if he only thought of Kyle as how dysfunctional he was in Paris, and since Simon was not home often enough, he did not see any progress. Or, did Simon just expect one "magical" pill to "make him all better"? Whatever the reason, Simon seemed to focus solely on Kyle's symptom of anxiety, and he thought we were overdue in finding the right medication to "fix" it. When Dr. J recommended adding oral Zithromax to the Ceftin in January of 2001, specifically because of Kyle's anxiety and obsessive-compulsive behaviors, Simon put his foot down. (Dr. J based his recommendation on his experience that up the Zithromax-Ceftin combination seemed to really help those patients with anxiety.) Simon insisted that Kyle's anxiety was only related to his autistic spectrum diagnosis, not Lyme disease, and further, that Zithromax was something that one took for a sinus infection, not for anxiety. (I had given Simon medical research journal articles on the neuro-psychiatric symptoms of Lyme disease, but either Simon did not accept them, or could not equate the case histories to Kyle.) Simon refused to fill the Zithromax prescription.
As a next step, Simon wanted Kyle off of the antibiotic, and wanted to pursue psycho-pharmaceuticals to address the anxiety issue. Perhaps part of Simon's reluctance to continue antibiotic treatment was the fact that we only had one definitive blood test for Lyme - an ELISA test from the previous April. If only there were a more specific blood test to monitor or confirm active ongoing infection, perhaps he would have felt differently. Also, Simon had pulled enough articles off the Internet regarding the ambivalent results of long-term antibiotic therapy for Lyme, and accepted them as defacto proof that we were doing the wrong thing.
By March of 2001, Simon was finally home, our Scottish nanny had moved on, and we were living again as a family unit. That month, he took Kyle up to see Dr. J. Simon insisted that we do a trial period of no antibiotics. Dr. J carefully spelled out the ten warning signs of a relapse of Lyme, and agreed that we could try taking the antibiotic away. (Dr. J noted some improvement in Kyle's balance issues, but also recorded in his notes a concern over Kyle's continued droopy eye. Jones had felt at the beginning of Lyme treatment that Kyle would likely need at least a year of antibiotics for successful treatment.)
After two days of no Ceftin over the weekend, we sent Kyle back to school on Monday. I received a 30-minute call that afternoon from Kyle's teacher saying it had been Kyle's worst day that she had ever seen. There were periods of the day where he could not sit down—he simply paced back and forth in the room with running unintelligible monologues and out-of-control laughter. Several times he tried to leave the classroom. He ate lunch standing up in the cafeteria, spilling all over himself. He refused to do any work during the hour-long writing period. It had been a difficult day where the teacher had taken most of her day to deal with Kyle, and it had been unfair to the rest of the students in the class.
Although the school days over the next three weeks off of Ceftin were not all quite this horrendous, Kyle's behavior at school and at home became a major concern. He became impulsive, began to consistently refuse to do his work, talked about how he "couldn't be around the other kids," and had severe mood swings with many outbursts of tears. He placed a Power Password on the family computer and could not remember what it was! (This is a password that is hard-wired on the computer, and without the password, the computer will not boot up.) When I fixed this problem by taking our computer tower apart, Kyle impulsively registered with Ameritrade on-line and requested fifteen prospectuses that were subsequently mailed to his false namesake at our address! We also suddenly had a subscription to Mutual Fund Magazine and Sports Illustrated! (The fourth grade class was about to go on a field trip to the New York Stock Exchange.) This behavior was really pushing the limits.
Kyle became ill with fevers, headaches, diarrhea, and stomach aches. He missed several days of school due to illness and came in late several others when his sleep patterns were irregular. Interestingly, Kyle started asking for the Ceftin, thinking that it would make him feel better. Although I was distressed by Kyle's continuing spiral downwards, I waited until Simon finally initiated a conversation about Kyle's behavior and symptoms correlating to Dr. J' list of ten warning signs of Lyme relapse. After three weeks, even Simon was alarmed. He said that we better call Dr. J because all of the warning signs had been exhibited. Dr. J returned our call that evening, and recommended putting Kyle back on the Ceftin. And we did, just the next morning.
The Continuing Lyme Saga: After this brief unsuccessful trial of no antibiotics for three weeks in March of 2001, we kept Kyle on his daily Ceftin regimen of 500 mg twice daily. Fourth grade ended fairly well, with report card comments on Kyle's great gains in work habits, attitude, and improvements socially and academically. However, the end of the school year showed more variability in Kyle's behavior and emotional stability. Perhaps this was a result of having interrupted the antibiotics, or perhaps because Kyle was beginning to plateau on this Ceftin dose or this particular antibiotic to treat Lyme disease. As well, we had introduced the anti-anxiety medication of Buspar in April, and when experimenting with dosage levels, he suffered some negative side effects. Further, the end of the school year always presents with increased activities, concerts, and academic demands.
The sense that we were not making progress produced uncertainty in how to proceed. At our next follow-up meeting with Dr. J in June of 2001, he recommended increasing the dose of Ceftin to 750 mg twice daily to see if this would improve on Kyle's increased impulsivity and obsessive-compulsive-like behaviors. Simon continued to feel that Lyme treatment was not going to improve Kyle's anxieties and behavior. He remained opposed to keeping Kyle on such a long-term course of antibiotics. With these strong opinions, and with the monthly cost of Ceftin at the current dose (over $600 per month), Simon refused to consider this recommendation.
Simon was further opposed to the regimen of vitamins and supplements that we had continued based on Dr. Z's (the naturopath) recommendation. I don't know if Simon's opinions were based on a lack of research or understanding of nutrients, or were based on his continual frustration with the dollar cost of Kyle's medical treatments. I had worked with another naturopath, Dr. B, the founder of the international consortium of autism researchers and doctors called Defeat Autism Now! since Kyle was three years old. Kyle began taking vitamins and supplements since that age based on his blood work and Dr. B's research. Simon had gone along reluctantly for years with these supplements, but now, he seemed opposed to everything except for anti-anxiety medication. By the end of June, Simon told me that I was no longer going to give Kyle vitamins and supplements. I was vehemently opposed to this action and said so, but went along with it for the time being. I could only guess how over time this might negatively impact Kyle.
By September of 2001, Kyle began the fifth grade fairly smoothly. After a month and a half of school, in our PPT meeting, we recognized a few more improvements. Kyle's writing had improved substantially, showing a great jump in content, organization and detail. A writing prompt test at the beginning of the year highlighted his progress. Also, the school recognized that Kyle no longer required a one-on-one aide, and we moved to a classroom aide support system. We hoped to be able to gradually reduce his aide's time to ready Kyle for a smooth transition to Middle School next year. Unfortunately, this school year was to become a major challenge due to another trial of no antibiotics. Also in September, Simon again thought that Kyle had been on an antibiotic long enough (it was now about 14 months). He wanted to drop the Ceftin, and move onto other psycho pharmaceuticals, recognizing that Buspar had not done enough to address Kyle's continuing anxieties and rigidity. In late September, we met with Dr. W (child psychiatrist) and developed a three-step plan: 1) drop the Ceftin after meeting with Dr. J, then 2) after a week with no major changes, drop the Buspar, and 3) after a month, add a new anti-anxiety medication. This was an aggressive plan for a chemically-sensitive child, and it would ultimately backfire.
In mid-October, after Simon's meeting with Dr. J, we dropped the Ceftin. One week later, we dropped the Buspar. The following problems at home developed immediately: sleep disruptions; an inability to do homework independently, and a major increase in impulsivity. School behavior became erratic, Kyle was anxious, refused to do his work, and could no longer sit in the cafeteria. Within two weeks of dropping the Ceftin, we met with the teachers, and decided since the severity of his problems worsened after dropping the Buspar, we needed to add this medication back. How did we know that we were adding back the "right" medication? Only time would tell! And time would show that we made the wrong decision.
By the beginning of November, Kyle told me that he needed to go see a doctor soon, and that he didn't feel well due to this "new medication" (he meant the Buspar) because he had headaches every day. Further, he told me that if these doctors couldn't help him, then we'd just have to find some new doctors. I observed his autistic-like behaviors increasing at home. I knew that Kyle was telling me that his body didn't feel right; I knew that the medicines we were giving him weren't right.
I became very concerned about the severity and frequency of Kyle's headaches, his continual physical complaints, and his declining performance at school and at home. Although I worried that this was another Lyme relapse, I explored several other avenues first. With Dr. W's (child psychiatrist) consultation, we tried yet a third time to increase the Buspar dose. Again, severe side effects required us to drop the dose back down. We also considered vision issues, and the fact that Kyle was no longer wearing his glasses regularly. Possibly, his prescription was outdated and needed to be changed. Maybe vision issues were a contributing factor to his headaches. Regardless of our trials, hypotheses and changes, Kyle became more ill. He began to fall asleep in class; his eyes began to twitch and droop severely. This was no longer just a child who was refusing to do work or being non-compliant; this was one sick child who was beginning to "shut down."
Having seen Kyle regress before without an antibiotic, I began to feel strongly that what we were seeing was Lyme disease. By early December, I decided that we had waited long enough to return to the Lyme doctor. Having interest in a second Lyme opinion, and longing to find a doctor closer to home to avoid the dreaded two-hour plus car ride to Dr. J's office, a good friend recommended Dr. R. There was a last-minute opening at Dr. R's office on December 10, and I took it.
Dr. R took a two-hour history, did blood work and muscle-response testing, and concluded that we were likely seeing a Lyme relapse. The blood work would help us confirm this diagnosis, and would also alert us to potential co-infections. We'd be able to review those results in three weeks. In the meantime, he recommended going back to Ceftin, gradually adding Zithromax in combination, and beginning an aggressive immune support regimen of vitamins and supplements.
Simon by now was as concerned as I was, and agreed to at least begin the antibiotics. Within days of adding back the Ceftin, we began to see some subtle improvements. (When we later called Dr. W to discuss a temporary drop of Buspar in order to add Zithromax for Kyle, Simon told Dr. W that he had now seen the difference of Kyle with and without Ceftin, and he agreed that Kyle "clearly needed to be on Ceftin for the foreseeable future." Dr. W joked with me that he hoped that I had Simon's comment in writing!)
In January, we met again with Dr. R to discuss Kyle's blood test results. His Western blot was revealing: the IgM WB was positive, even meeting the stringent requirements of the New York State and the CDC for at least two Lyme-specific bands. Kyle showed positive antibodies on the following bands: 39, 41, 45 and 66. Further, his IgG WB was also positive, again meeting the requirements of New York State and the CDC for at least five Lyme-specific bands. Kyle was positive on the following bands: 23-25, 30, 39, 41, 45, 58 and 66. In addition, his red blood cell count, hemoglobin and hematocrit were low. He was diagnosed with Erythropoiesis, a disorder characterized by the body creating too many baby red blood cells to compensate for the lack of mature ones. Although Kyle did not test positive for babesiosis (a red blood cell parasite and secondary tick-borne infection), Dr. R believed that it was highly likely that he did have this as well. Severe headaches, migraines, chronic fatigue and "hot flashes," all symptoms which Kyle was experiencing are common with babesiosis. To add fuel to the fire, Kyle also tested positive for mycoplasma fermentans….
With these results in hand, Dr. R recommended a combination of oral antibiotics and the addition of an anti-malarial drug to combat the babesiosis. He also recommended, given the history of Kyle's symptoms and long-standing central nervous system and brain involvement that we use the most aggressive treatment of intravenous antibiotics to really knock out the disease. He said that we could wait until the summer, trying less invasive combinations of oral medicine first. Our overall strategy then was to "stabilize" Kyle, to allow him to complete the fifth grade using oral medication, and then do the intravenous antibiotics in the summer when it was less disruptive to the school year. By now, with the aide of the blood test results, even Simon understood the severity of Kyle's illness, and also agreed to add in the recommended vitamin and supplement supports.
We started and stopped with different combinations of oral antibiotics and the anti-malarial medicine. Each time we added a new medicine, it seemed to be too much for Kyle's system. He kept getting worse instead of better. Gradually by early March, it became evident that we were not succeeding in "stabilizing" Kyle and allowing him to get through his fifth grade year successfully. We decided to change our treatment strategy mid-course and go for the aggressive treatment now, instead of waiting for June. On March 19, Kyle had a PICC line (a catheter) inserted in his right arm, on the inside of his elbow, in an outpatient procedure in Dr. R's office, and we took home a box of our first week's supply of intravenous medicines.
Kyle was amazingly cool during the whole procedure, watching the insertion, talking to Tom, Dr. R's nurse, the entire time. He was in good spirits going to the Hospital, taking a chest and arm x-ray to verify that the line had been inserted in the correct place. Once home, and realizing that his arm was really sore, Kyle went into a crying anxiety attack, screaming that we were going right back to the doctor the next day to take out that PICC line—there was no way that he was keeping this thing in his arm. Fortunately, he calmed down after about an hour, and gradually he got used to all of the strange medicines and feelings with the way in which this medicine was delivered.
The medicines came in large balls, delivered weekly, and were refrigerated until three hours before "drip" time. Heparin and saline solutions were part of Kyle's regimen, twice daily, delivered through hypodermic needles attached to the dangling cord from Kyle's catheter. Kyle's arm had to stay dry to prevent infection at the site of the PICC line. For the next five months, he wore an airtight blue latex guard for every shower and swim. He had an IV nurse who came to the home weekly to change the dressing at the PICC line site and examine and treat any infections. The medicine, Rocephin first, and then Zithromax, took anywhere from 1-1/2 to 2-1/2 hours to drip into Kyle's body every evening. During this time, Kyle had to keep his arm straight, for every time that he bent it, it was like a garden hose with a kink. He also did supplemental bi-monthly intravenous drips of vitamins that often took 2-1/2 hours at a time. I supervised and administered all of his medicines.
By Mid-March of 2002, just a week before Kyle's catheter operation, I had taken a temporary leave of absence from my part-time job, as Kyle's ability to attend school had become unpredictable. I had hoped that the intravenous antibiotics would be a "quick fix," allowing me to return to work, and allowing our family to go back to some normalcy. But that optimism was unfounded.
Over the next month, Kyle continued to have daily migraines and missed a great deal of school. At one point, his daily school pattern looked something like this: feel good in the morning for the first 45 minutes of the day; experience a severe migraine and spend 45 minutes in the nurse's office taking prescription headache medicine; lay down and use ice packs; go home and sleep for 2-1/2 to 4 hours through the mid-afternoon; have a couple of hours of feeling okay to try to make up some school work; go to sleep again for another 8-1/2 to 9 hours. This depressing pattern continued for more than a month. We were fortunate that the staff at North Street School was so accommodating and compassionate. But without an aide's support at home, teacher and staff accommodations, and my daily assistance, Kyle would never have been able to manage.
I kept daily charts of symptoms on Dr. R's request, talked with his nurses frequently, met with the home nurse weekly, and followed up with Dr. R monthly. There were gradual changes, where Kyle's migraines became slightly less severe or lasted for shorter periods of the day. Some days, Kyle even seemed to have normal energy and never complained about his legs aching. It took a full three months of Rocephin before the migraines ended. It was the second to last day of school. From this day forward, Kyle never had a migraine again. About three weeks after the migraines ended, all of Kyle's joint pains and complaints about his legs and feet abated. We had rotated to intravenous Zithromax by this time, and kept Kyle on the intravenous antibiotics for about a month following the alleviation of his joint pains.
The Lyme disease Journey Approaches its End: What a joyous day, on August 8, 2002 when Kyle finally had his PICC line removed! It seemed incredible that we had finally come to the end of this aggressive treatment. I longed for Kyle to be able to participate in and not to be scared of the potential danger of activities and sports again. I wanted Kyle to feel more like a "normal" kid again, without having a bandaged arm and exposed catheter and cords that resulted in so many questions from curious strangers. I wondered how long it would take Kyle to overcome some of the psychological damage of this treatment. I wondered if he would remain well now, and for how long? I wondered if we had really "licked" Lyme disease.
Kyle obediently attended summer school for six weeks following his graduation from fifth Grade at his elementary school. His teachers had strongly recommended this summer option, rather than camp, particularly as the status of his health was still uncertain. We needed to see if Kyle's migraines or headaches would suddenly "reappear" when he was under pressure to perform academic work. We needed to see if Kyle would willingly participate in an academic school day, without physical "excuses" and without refusing to do his work. Simon continued to question whether Kyle had had so many difficulties with school work over the course of fifth grade due to anxieties (rather than Lyme disease), which had potentially caused his headaches, stomach aches and sleep problems, resulting in his refusal or inability to participate in school. Or whether all along, had it really been Lyme disease which had caused Kyle's problems? I guess we all once again needed an answer to this same question. The pattern of migrating, come-and-go symptoms of Lyme disease often make one question whether some of the behavioral manifestations aren't just psychosomatic. A good test to answer this question was Kyle's willingness and ability to participate in summer school. Even more important would be Kyle's entry into Middle School.
Kyle participated nicely in summer school! Summer school was not Kyle's favorite summer activity, and he often complained that the academic work was too easy, boring, and not challenging enough—not like it had been in the fifth grade. There were no signs of refusing to do academic work or refusing to participate in the academic program. It seemed clear that it had been his health-related issues (Lyme disease), and not just anxieties, that had been the primary cause of his difficulties in fifth grade.
We were excited and anxious to see how Kyle's transition to the Middle School would unfold. The school was large, with about 270 sixth graders and over 800 students in total, coming from four different elementary schools. Kyle would change teachers for every academic subject, and move to a new classroom every 50 minutes. He would have a locker in the hallway to store his books. He might know only a few of his classmates. Was he ready to handle all of these changes? How would it all go?
Kyle spent seven weeks following the removal of his PICC line with no antibiotics. We were pleasantly surprised to see how stable and how well he remained. There were several isolated incidences of severe joint pain in his shoulder and ankle, and a few headaches and stomach problems in the two weeks before the seven-week follow-up with his doctor. Dr. R felt that we had given Kyle's immune system enough time to readjust without antibiotics, but now it was time to go back to an oral antibiotic, at a lower dose, to prevent a Lyme relapse and a need to repeat intravenous medicine. He recommended an oral antibiotic, Biaxin time-release, at 500 mg once daily. The strategy was to keep Kyle on this antibiotic through most of the school year, and then see if we could drop it.
Kyle's transition to Middle School exceeded all of our expectations. Not that he didn't have small challenges and some minor schedule changes, but it was clear that Kyle was managing the school day quite well, and that he was able to perform academically. Although we clearly hadn't solved all of Kyle's anxiety, rigidity, or obsessive-compulsive behaviors, he had made remarkable strides in managing these issues. His transition to Middle School has shown us that Kyle is coping with his daily routines and schedule changes. He is participating; he is doing his work willingly and independently. More important, we have instilled a sense of happiness and pride in Kyle. His academic strengths now stand out. He continues to enjoy the clarinet and participate in his school Band. Kyle is active again - bicycling, golfing, skiing and ice skating. He recently began a Yoga class for kids of his age. Kyle's challenges have not ended, but I am thrilled at where he is today and how much he has overcome.
If we remember where Kyle was in third grade versus today, we can see clearly how many difficulties he has overcome with the aggressive Lyme treatment. Kyle was once unhappy, and even depressed. He had serious digestion issues and irregular sleep patterns. He was so time-obsessed that he could only focus on homework for 10-minute intervals. He could not slow down enough to read silently and independently with any level of comprehension. He had difficulty sitting erect or even standing properly without leaning on someone for support. His eyes twitched and drooped. He required up to fifteen minutes of break-time for every hour-long segment of work at school. He needed a full-time aide to manage his behavior issues at school. He had a severe auditory processing issue. His vision was severely developmentally delayed.
Kyle is now a happy child who is proud of his own accomplishments. He eats a normal, healthy diet and sleeps on a much more regular pattern. His focus and concentration at school is not an issue. He reads well independently, participates in group discussions in his Language Arts class, and is on grade level in Reading. He sits properly at the dinner table, and has good posture while standing. His vision has improved dramatically, and his eyes no longer droop, with only occasional and barely noticeable twitching. He functions well at school without any separate breaks. He has a special education monitor who oversees his academic curriculum, and he attends a resource room for one period a day to begin his homework assignments. There is no one-on-one full-time aide, nor are there are any classroom aides. His auditory processing issue is not apparent. With no academic modifications, Kyle achieved both the Effort Roll and the Honor Roll for his first and second marking periods.
This is remarkable success for a boy diagnosed with PDD, and a boy who was once seriously ill with chronic Lyme disease. Kyle's case history is a shining example of both the devastation of Lyme disease, as well as the potential dramatic recovery that is possible with aggressive treatment.
A Side Note on Psycho pharmaceuticals: Kyle's anxiety, rigidity and obsessive-compulsive behaviors were something we had dealt with from a young age. These are core symptoms of the autistic spectrum. (As well, they can be common symptoms of Lyme disease.) When Kyle was younger, I preferred to use naturopathic and homeopathic methods to help his issues, as Kyle was high-functioning, and was able to be mainstreamed with appropriate supports. We also used a variety of therapies and training which ultimately worked on anxiety as well as other symptoms—for example, Applied Behavior Analysis training, speech therapy, auditory integration therapy, sensory motor integration training, dietary and nutritional intervention. Given Kyle's immune system irregularities and food allergies, I believed that he would be too chemically-sensitive to try medications unless we had no choice.
In Paris, we had no choice. Kyle's anxieties and inability to cope throughout a school day became unmanageable. He began to experience true panic attacks, and with regularity. He was overly visually- and sound-stimulated in this new city environment, and experienced fatigue and sleep disruptions. After the Headmistress removed Kyle from the mainstream, and he continued to regress, we began to work with a child psychiatrist and try a couple of medications. First we tried Ritalin for over a month, and although Kyle's hyperactivity was reduced, it did not address his anxiety. Then we tried Buspar, an anti-anxiety medication, but at such a high dosage for his weight and age (either 5 mg twice daily or 10 mg twice daily), that it severely dulled his cognitive abilities and made him overwhelmingly fatigued. After almost two months of dosage trials, the doctor agreed that the side effects were too severe to pursue this medication.
Once back in the U.S., I took Kyle to a neurologist for a comprehensive evaluation. After seeing a normal EEG, he eventually told us that he does not treat children for behavioral issues alone, and referred us to a child psychiatrist. Dr. W (child psychiatrist) came highly recommended from a good friend, is a noted child psychiatrist in the ADD field, and has solid experience with other disorders and the autistic spectrum. In March of 2000, (prior to Kyle's Lyme diagnosis) we met with him. Dr. W reviewed Kyle's history and recommended a trial of Risperdol. In May of 2000, we began a trial of Risperdol at a baby dose of .125 mg a day. Unfortunately, within 10 days Kyle experienced unusual and severe negative side effects. When the extent of the problem was communicated to Dr. W, we were told to stop the medication. Given our decision to begin treating Kyle for Lyme disease, and my hesitation over the risks of another medication trial, Dr. W told us to come back after we thought the Lyme was under control, and we knew what his residual symptoms were.
Nine months later, in March of 2001, when Simon wanted Kyle off of the antibiotic, we went to Dr. W again. This time, he recommended Buspar. His feeling was that our trial in Paris had been at an inappropriately high dosage, and that we really hadn't given it a fair chance. Also, he thought that this medication had fewer risks of severe side effects. Knowing Kyle's chemical sensitivity, we began our Buspar trial in April of 2001 at a small dose of 2.5 mg once daily, and worked up to 2.5 mg twice daily after about two weeks. We had introduced this medication at the end of our first three-week trial without Ceftin, and so it was a rather difficult period to assess. Nonetheless, within the month we experimented with higher dosage levels, but found that above 2.5 mg twice daily, Kyle would experience too many side effects—extreme agitation, headaches and fatigue—to the point that the medication was detrimental. We tried increasing the dosage over the year at two other intervals, but each time, he experienced similar side effects and we went back to the lower dose.
We kept Kyle on this dose of Buspar throughout most of the year of 2001 until mid-December when we added a contra-indicated antibiotic for Lyme treatment. At one point, we experimented with Inderal as an anti-anxiety drug, but at a low dose it seemed ineffectual. In March, based on Dr. R's recommendation, we substituted an anti-seizure medication of Carbatrol. Dr. R and some of the other Lyme specialists view a spectrum of symptoms—headaches, emotional lability, sleep problems, anxiety, perseverative thought—as potential limbic system seizures, and therefore prescribe anti-seizure medication such as Carbatrol, particularly during intravenous antibiotics which tend to make symptoms worse for a period. The success of Carbatrol was difficult to evaluate as Kyle's Lyme symptoms were overwhelming at the time.
We went back to the Buspar again, based on Simon's preference, in July through September. Then with the completion of intravenous antibiotics for Lyme, and Kyle's overall health status so much improved, Dr. W suggested that we move forward in treating his residual anxiety. First, we needed to determine if the Buspar was really doing anything at the low dose Kyle was on, other than "creating noise." Although counterintuitive, he said, the best way to determine that was to take the Buspar away and see what happened. Kyle had his best two months of school ever during this period, making both the Effort and Honor Rolls. We saw no regression or behavior problems when the Buspar was taken away; leading us to believe that it wasn't making a significant difference at the time. Had it helped Kyle at all when he had been really sick with Lyme? That will be difficult to ever know.
In December, we decided to try a new medication for anxiety—Lexapro, one of the newer drugs in the SSRI family. Unfortunately, after four to five weeks, Kyle experienced unusual and severe side effects—stomach and sleep problems as well as several manic episodes. He was unable to attend classes on a regular basis and developed new negative and out-of-control behaviors. This medication trial seemed particularly disruptive to family life, and extremely damaging to Kyle's self-esteem now that he is older.
What have we learned from all of these trials of psycho pharmaceuticals? I think we have learned that Kyle is extremely chemically-sensitive and that the risks of these medications are great. Is there a medication that will help Kyle? There may be; but is the trial-and-error game worth the cost? When is it time to say that the potential for damage is greater than the potential for improvement? Ultimately, I believe that we need to view anxiety with a broader framework, and include other potential organic causes and naturopathic and homeopathic treatment alternatives as additional avenues to explore. And ultimately, all parties involved in caring for Kyle need to have a balanced perspective that any medication or other treatment may improve symptoms somewhat, but that there is no "magical pill" that is going to completely solve or cure his issues.
A Family Comes Apart: What a toll this disease has taken on Kyle, and what a toll it has taken on our family! Kyle may have suffered from central nervous system and neurological symptoms from Lyme disease for over half of his life! We had assumed for years that most of Kyle's behavioral and learning problems at school had been from his autism. Now we had come to learn that many of his behaviors, frustrations, attention issues, learning issues, coordination issues, and his periods of being unable to cope were really due to Lyme disease. What if we had actually been able to diagnose Kyle with Lyme disease a lot sooner? Where might he be now?
And what about Sabrina, Kyle's sister, who is now nine years old? She basically "lost" her brother as a playmate for at least nine months. And during that time, it had been difficult to stick with any of our daily family plans. Social obligations, church, activities and outings were frequently postponed or aborted when all of a sudden, Kyle was too sick to participate. Worse yet was the fact that for years prior Sabrina had gotten second-rate attention in the family since I was so busy focused on autistic therapies and attention to Kyle. This situation had naturally created jealousy and anger on Sabrina's part. Sabrina clearly had marked periods, episodes and spikes of "acting out" both at home and in school as a sibling's reaction to growing up with a special needs brother.
For Simon, I think the intravenous antibiotics were the final straw in a dying marriage. His extreme disappointment in not having the perfect family, his horror of watching his son continue to suffer, his lack of understanding and belief in Lyme disease, and the stresses that all of this had caused on our marriage were unbearable. I am sure that after a long, demanding and stressful day at work, it was unpleasant to come home to the suffering of his child, and for so many months and even years. And unfortunately, Simon didn't seem to be able to release his disappointment and anger, but instead, blamed me for the problems. He seemed to fixate solely on Kyle's anxiety, as though that were his only issue, and blamed me that I hadn't yet found the magical pill to cure it. Ultimately, we were no longer able to communicate in a meaningful and respectful way, and had been unable to do so for some time. Simon finally couldn't stand the situation anymore, and moved out of the house and filed for divorce in early July, a month before Kyle's intravenous treatment would be finished. Just days before he moved out, he wrote a note and left it on my desk, claiming, "I told you that Lyme and PDD had to be treated differently, and you didn't listen to me, so it cost you the marriage." Wow!
And what about me? I just "rolled with the punches," fit my life in when it was convenient, and tried to focus on keeping Kyle moving forward. I used my engineering training and my mind, constantly problem-solving, documenting, asking questions, and trying the next intervention. Isn't that the way God made Mothers? Mothers are expected to sacrifice and to do everything possible for their children. It comes naturally, I suppose. And when faced with the daunting task of becoming nurse for my own child, with medicines that I had to learn to deliver at home, hypodermic needles that I had to master, symptoms that I had to document and analyze, I suppose I just prayed to God to take away my own fears and allow me to do the best job that I could.
Lyme disease was not any easier for me to understand than it had been for Simon. However, I had the advantage of more empathy for what Kyle was going through, simply because I was also diagnosed with Lyme disease in the fall of 2000. I came down with severe symptoms rather abruptly, and at first suffered from such pain in my legs that I could barely walk. I also had an irregular heartbeat; nausea; headaches; shoulder pain; an inability to sleep; a sick and creeping feeling in the back of my head; migrating numbness and tingling in my arms, hands, legs and feet; and a very stiff neck. My own struggles with Lyme disease and Bartonella (which continue today) allowed me to believe that many of Kyle's challenges could in fact be related to Lyme disease. When I first told my Lyme specialist, Dr. L, that my husband didn't seem to understand or believe that either my son or I had Lyme disease, he was very honest in alerting me to the fact that families have broken apart, that previous patients have divorced over this disease. Little did I know that would become my own fate.
Questions: Although I am grateful for Kyle's progress, I believe that his story begs more questions than it answers. First, Kyle's story seems typical of other case histories where a patient searches for answers by visiting with a number of doctors, and spends years of time, before a Lyme diagnosis is revealed. Why isn't there more awareness and acceptance of this disease in the mainstream medical community, and why aren't there better tests for diagnosis? What is the real relationship between autism and Lyme disease? Can Lyme disease actually cause autism, or does it merely exacerbate the symptoms? Should we be testing a larger population of autistic spectrum children, particularly those in the tri-state area, for Lyme disease? In Kyle's case, did he first receive another immune system insult, such as a toxic vaccine (or too much thimerosol), and then he received a tick bite? Does anyone ever really eliminate the Lyme bacteria from his body? How does a patient know when it is safe to stop antibiotics? What are the risks of long-term antibiotics? Are there other naturopathic or homeopathic remedies that could help Lyme disease, once the worst symptoms of the disease are "under control?"
Could we have been successful in treating Kyle with a higher dose of oral antibiotics, different combinations, and a longer course of treatment of just orals, or is it the intravenous method that really brings the most improvement? Why did Kyle get so sick when we stopped oral antibiotics—was he re-infected with a subsequent tick bite, or is this what happens when one has only partially treated Lyme disease?
Are any of Kyle's residual issues of anxiety, rigidity, and obsessive-compulsive-like behavior Lyme-related? Could it be that certain Lyme "damage" cannot be corrected with the current technology of antibiotics? Would it be possible to improve Kyle's residual symptoms with additional intravenous antibiotic treatment? Could it be that the antibiotics were actually addressing a different bacterial infection—not just the Borrelia burgdorferi bacterium, babesiosis and mycoplasma, - but in fact some other infection related to Kyle's autistic symptoms? How will we best determine Kyle's future treatment path?
Lyme disease is an epidemic in many parts of our country, and yet it seems that the general population is willing to allow it to be "swept under the rug." As well, autism is in epidemic proportions, now being diagnosed at a rate of at least 1 in 116 children across the country. This case history shows one more example of why it is imperative that we begin to spend more research dollars on these diseases. I can only hope that this story may save but one child or family from our fate.
Thanks to All Who've Been There for Kyle: I am ever-grateful to Dr. Z for having recognized that Kyle's issues were possibly related to Lyme disease. I truly believe that she saved Kyle. I am grateful for the Lyme advocacy group's support and compassion in helping educate me about Lyme disease and in recommending several doctors. I credit Dr. J and Dr. R with the Lyme treatments that brought such great improvement to Kyle's life—his overall well-being, coordination, social abilities, cognitive and academic skills, and psychiatric symptoms. And I praise the teachers and staff who so willingly met with Kyle's challenges, stood by him, changed strategies when things got tough, and never gave up. We are certainly not at the end of our challenges, but when I look at where Kyle is today, and remember where we have come from, I am joyful and thankful to all who have contributed in his dramatic progress.
Lyme Treatment and Symptoms Over 3-1/2 years:
|Lyme treatment||None||Ceftin 500 mg, 2 x daily||None, combination of orals, Intravenous Rocephin and Zithromax||Biaxin, 500 mg Extended Release 1x daily|
|Reading ability||Aloud, with finger along, two pages at a time before eyes too fatigued||Can read and comprehend short stories independently; long novels still read aloud with adult||Begins to read novels independently and discuss with adult||Reads independently|
|DRP scored||Just above Kindergarten level; low 30s||Just under 50||50||66—finally grade-appropriate!|
|Standardized tests||Taken in separate classroom individually; wide variability in SAT scores||Taken in same classroom with other students; met CMT goal only for writing||Taken in same classroom with other students; variability in SAT scores||Taken in same classroom with other students; met CMT goal for reading, writing, math|
|Grades||Behavior and following rules is largest issue||Effort, focus improved||Variable||Effort Roll and Honor Roll two marking periods|
|Behavior||Frequently non-compliant or non-participatory||Achieved Behavior Contract more consistently||Mostly ill with migraines; frequently went home to sleep||Manages with no aide support; still somewhat rigid and benefits from special ed. monitor|
|Breaks required||15 minutes for every hour||Up to 4 five-minute breaks across the day||Lots of sleep||Same schedule as other students|
|"Specials"—art,music,gym||Not focused; required aide support||Aide only in Art; good effort in all others||Missed gym most of year||Participates in Gym and Band|
|Aide support||One-on-one full-time||Classroom aide||One-on-one and classroom aide||No aide support|
|Auditory processing||Severe deficits—first percentile||Okay||Okay||Okay|
|Posture, coordination||Slouching, uncoordinated, benefits from sensory integration o.t.||More normal, coordination issues improving||Stiff/rigid due to pain; lack of physical demands||Good posture, coordination issues greatly improved|
|Demeanor||Unhappy, anxious, depressed||Happy but anxious at times||Fatigued, somewhat happy||Happy, more relaxed, continued level of rigidity|
|Physical complaints||Headaches, sleep disruptions, digestion disturbances, vision fatigue, sound sensitivity||Sound sensitivity, digestion disturbances somewhat improved, occasional headaches||Migraines, extreme fatigue, "hot flashes," joint pains in legs and feet, eyes hurt||Mild digestion disturbances, occasional sleep disruptions|
|Vision||Eye fatigue, drooping eye, twitching eyes, lack of teaming, lack of depth perception||Continued wearing glasses, vision greatly improved||Eye twitching, wears glasses only periodically; vision improved||Improved|
|Bus transportation||Special education mini-bus||Regular school bus||Regular School Bus||Regular School Bus|