Exploring chronic disease
15 Mar 2008
At a very young age, Doreen’s son Brendon began to suffer from symptoms of autism and other behavioral disorders. Over the years, he also began to suffer from CFS, obesity, and a “tremendous array” of other symptoms. Today, Doreen’s entire family, including Brendon, are on Autoimmunity Research Foundation’s Marshall Protocol. In the following interview, Doreen discusses the progress that Brendon, now 18, has made during Phase 1 of the treatment. Brendon’s experience thus far suggests that he is already becoming a more social and outgoing individual, and that full recovery may well be on the horizon.
Brendon exhibited the subtle signs of autism at a very young age. I didn’t realize it at the time, but looking back, even as an infant he was socially indifferent–- he did express emotion, but only if we went out of our way to over-emphasize cues. A photographer waving around stuffed animals and talking loudly and actively in order to elicit a smile would get him wildly laughing. Otherwise, he really didn’t ever giggle or grin. He did not actively explore faces and was uninterested in taking his turn sitting on my lap at reading time. Whereas the other children in my daycare clambered to hear favorite books over and over and especially enjoyed the “audience participation” pieces they knew were coming up, he did not have the patience to sit through a book if he had already heard it.
As a toddler, he started to develop allergies. He couldn’t and still can’t tolerate gum thickeners. I remember taking him to Dairy Queen, which thickens all their ice cream products with xanthan or guar gum. Afterwards he felt terrible and had his first clear-cut display of diet-triggered disordered behavior. Soon after, we found that he was also allergic to beet sugar, any food coloring, aspartame, corn, wheat and dairy. A great deal of trouble was avoided when we were successful at removing them from his diet. I used to reassure his teachers by joking that there were no dangerous side effects to his allergy, but should they make a mistake… don’t call me!
By this time, he had been tentatively diagnosed with ADHD, and the removal of food allergens went a long way towards removing the hyperactivity piece. Dust allergies kept us busy, but constant cleaning offered a bonus of decreased aggression, which is indeed often linked to dust allergy in children. The allergies were also the first indication that there was something wrong with his immune system. After a while, they became less of a problem and he was able to eat a more extensive diet again, although he still can’t fully tolerate dairy and wheat or gums.
But we didn’t reap the benefits of having overcome this serious health problem for long. Like playing Whack-a-mole, other problems constantly cropped up, with escalating seriousness and intensity, to consume a great deal of parental sleep and stomach acid. We spent a year on vision therapy. Patches of severely dry skin on his wrists turned out to be a symptom of hypothyroidism. Extreme morning fatigue was found to be related to adrenal insufficiency. He had to be treated frequently for Candida overgrowth.
In the middle of all this, we actually had a “normal”, semi-critical medical problem. A sudden bout of urine incontinence led us, thankfully, to surgical repair of a dangerous stage IV ureteral reflux, in which urine backs up into the kidneys, through damaged valves. The surgery removed the risk of life-threatening acute blood infection, but failed to save the kidney, which had been damaged by the years of backflow.
The problem of hyperactivity was gradually replaced with insidious fatigue. And his weight continued to steadily climb, despite all of our efforts. It went up, and up, and up. We did all we could to keep track of what he ate and make sure he ate a very healthy diet, but even so, his weight seemed to increase irrespective of our efforts.
Meanwhile, his behavior problems were escalating. He suffered from frustration intolerance and had episodes of explosive rage. He was diagnosed with depression and severe anxiety. Yet as his mother I was frequently told that he was fine; that I was just anxious and should try to calm down. But my husband and I could tell just how depressed, anxious and stressed he was. When he’d come home from school, we could tell he was using everything in his power just to hold himself together. He would come home in tears, desperately exhausted and just crash.
Another lingering and difficult problem finally brought us to the right practitioners and a definitive diagnosis of autism. Brendon suffered from severe constipation and bouts of intestinal pain that could not be relieved, with gradually escalating encopresis, or leakage from the bowel. Obviously this problem made going to school a terrible experience.
Our pediatrician didn’t know how to help. At one point he suggested Miralax – a powerful laxative that would force his intestines to eliminate their contents at specific times. But the drug created dependency, as it destroys muscle tone and is only properly used as a final recourse. I realized that if he started it, he would probably be taking it for his whole life. I turned it down.
We saw an integrative health doctor who immediately suspected that Brendon had dyspiosis – a condition in which the intestines do not have the proper composition of bacteria. And he said a curious thing: people on the autistic spectrum often suffer from encopresis. Autistic spectrum? I had never heard such a term.
The doctor ran a nutrition panel on Brendon and found elevation of a marker for brain inflammation and toxins produced by bacteria in the bowel. In addition, his triglycerides were extremely high. High triglycerides are a clear marker of inflammation, which, in turn, can be caused by bacterial infection. We used an herbal remedy to reduce bacteria in Brendon’s intestines, which thankfully eliminated the embarrassing and socially isolating encopresis. The markers also returned to normal. Today we realize that he was also infected with a great number of the L-form bacteria that cause chronic inflammatory disease.
A trip to a local clinic specializing in children’s behavioral health confirmed the diagnosis of autism. At the clinic he was diagnosed with Aspergers syndrome and PPD – Pervasive Development Disorder. He definitely was several years behind in development – he was eleven years old but had the maturity of an eight year old and the social skills of a five year old.
At this point in time, Brendon still had a tremendous heap of problems but it was becoming clear that they were all related to a central issue and that we might just have some power of management over them. Later, with the Marshall Protocol, we would set out with the hope to actually clear up this central problem, but for now we attempted to create some breathing room for Brendon so that he could grow up happy and independent. Vitamin B6 and glycine, identified as deficient in the nutrition panel, helped with his explosive episodes. Lots of autistic kids find relief from heavy metal chelation, but that therapy did very little for Brendon. He did, however, respond dramatically to weekly glutathione IVs. The purpose of this therapy is to reduce levels of toxins and metabolic waste built up in the body. Even from the first couple of IVs it was like turning on the light for Brendon. In hindsight and in comparison to today’s IP symptoms, I would say that the glutathione substantially reduced the brain fog piece.
There were some setbacks initially as we attempted to respond to the autism and ADHD diagnoses from the Alexander Center. Strattera, used to treat ADD, seemed at first to be very beneficial. But then four months later he came to me saying that something felt wrong when he took his pills. Soon after, he became completely emotionally destabilized. He was agitated, angry, weepy, and had explosive mood swings. His depression was terrible. He couldn’t stand to be around other people. It took us a long time to bring his symptoms back to a level where they were somewhat under control.
In the meantime, I continued to learn more about autism. Patients with autism suffer from a deficit of the neurological pathways that link the frontal cortex and the limbic system. So Brendon was able to experience normal emotions and was able to develop intellectually, but he could simply not connect the two systems. Where there should have been a superhighway to connect his two systems, it seemed as if there was nothing there.
For example, Brendon could go to school and learn about grammar in English class. But if his teacher asked him to write an essay on a moment when he felt proud, it would seem like an impossibly difficult task because autistic children fail to lay down episodic memory. He had surely felt proud at times, but his brain had failed to connect the feeling to an actual event. For example, Brendon could remember spending time with others but had no memory of whether, when they were together, he had a good time or not.
I read work by an autism specialist named Dr. Gutstein who believes that the brain is more flexible than we give it credit for and that it is possible to re-teach children with autism some of the cues they missed in childhood. He believes that the neural pathways can be strengthened and reinforced.
So we started a therapy based on Dr. Gutstein’s Relationship Development Intervention. The therapy is based on research of typical babies, identifying over 2,000 developmental steps that allow them to progress to normal adulthood. The first step is just playing a game in order to get an autistic child to enjoy looking at his mother’s face. Gutstein believes that by over-exaggerating these cues to autistic children, even later in life, they can not only pick up some of the cues they missed, but find the joy in human relationships. We tried this with Brendon and saw further gains in his behavior.
Although Brendon was making some gains based on the interventions we had in place, we knew we had to be open for other solutions. If anything, his CFS or his obesity was going to take him down soon anyway.
We actually learned about the Marshall Protocol in our search to resolve a crisis for another member of the family. Brendon’s older sister Lauren was dealing with an extremely severe case of CFS. She had crashed big after her junior year of high school and had been completely bedridden ever since. My first exposure to the Marshall Protocol came in reading an interview with Dr. Marshall on the website ImmuneSupport.com. The science made of lot of sense; my daughter had hit a low point anyway and after a year of I finally thought, “What do we have to lose, let’s give it a try!”
I was a little bit terrified, but I was used to being different – I was used to seeking out different solutions for health, looking for doctors with alternative viewpoints or novel treatment ideas.
I was worried that our doctor, who had now been working with us for several years, would not be willing to put Lauren on the MP. But when I asked him about the treatment, he told me he already had 12 other MP patients. I was overjoyed. In fact, he told me that he thought the MP would be good for our entire family, as my husband suffers from fibromyalgia and psoriasis and I have chest pain and fatigue that was finally diagnosed as CFS.
All four of us got our vitamin D metabolites tested and, as expected, all of us had levels of the active form of vitamin D (1,25-D) that were above normal range. High 1,25-D is a sign of inflammation and the presence of L-form bacteria, so this was an indication that the treatment should work for all of us.
Lauren was the most acutely ill among us so she started the treatment first and experienced immunopathology right away. Soon after my husband started the MP. Brendon began the MP a few months later, and I was the last to start. I think it was very important that we phased each person in gradually over a one year time period. With each new family member that started the MP, we became increasingly skilled at starting and understanding the treatment. In my opinion, the first bit of the treatment is the hardest – each person must learn how sensitive they are to light, how strong their bacterial die-off reaction will be, and subsequently how much they will have to adjust their lifestyle in order to get well.
Well, the house isn’t always perfectly clean because we’re all dealing with immunopathology, but we’re all on our way to getting our health back together. We figured, “As long as we’re covering the windows and blocking light in the house, we might as well all do this at the same time.”
Brendon had symptoms of immunopathology even before we started Benicar, when we removed Vitamin D from his diet in anticipation of starting the MP. He was nauseated, tired and out sick a lot. We actually had to feed him eggs deliberately, just to get through the end of the school year! Once Benicar was begun, those symptoms smoothed out and he began to follow the diet in earnest.
Although he did not experience photosensitivity at first, by the end of the summer on phase 1, with minocycline only, Brendon was experiencing intermittent distressing symptoms. He felt a whole-body flush, with increased heart rate after taking his mino. One night he stood up too fast and woke up several seconds later with his face in the carpet and a sore nose.
He was moved to a modified phase 1 just before the start of school and began to thrive. He became more social and he was less stressed. He really mellowed out. He had been too fatigued and overwhelmed to attend afterschool activities for the past two years, including Boy Scouts, but late in the summer he declared a goal to finish his Eagle Scout rank. This involved working out in the community to find and carry out a project, with interactions and activity with others which he handled fine. He demonstrated self-motivation and confidence in his Eagle work while maintaining B+ level work at school. It seemed as if his brain had a lot more energy to engage with people; as if it wasn’t so oppressed. This was his first “plateau.”
But all good things come to an end and so did this. The first few weeks of school he didn’t wear his hat and glasses. He didn’t need to. But then the expected symptom of photosensitivity finally kicked in. At first he felt bad, and was still trying to make it to school. Unfortunately, our local school has large windows. Each teacher turned off the bank of lights over his part of the room. He wore sunscreen and dark glasses, which made it hard to see to work all the time. Brendon began to feel sick even with glasses and long sleeve sun-blocking shirts. He told us that he could feel the lights and noise at school pressing down on him. At home he would shut the lights off completely. He managed a few more weeks at school, then fell apart.
We decided that he should no longer attend school. It was a good decision, because over the next four months, as his body started to kill the bacteria, he felt quite ill and he was very light sensitive. He could barely think. We dialed back the levels of antibiotics substantially and increased his Benicar to every 4 hours in order to get back to a tolerable position. Brendon slept well over 12 hours every day during this period.
Then, after this period of difficult immunopathology, he hit a second plateau. It started with some interesting symptoms – his heart started racing and his pulse went up. This eventually stabilized but he remained energetic! He couldn’t settle down. He was alert and awake in the morning, the way a healthy adolescent should be. This improvement has persisted and we feel that his body has finally been able to reset his natural circadian rhythm. He used to be extremely sluggish in the morning – probably due to the fact that his cortisol was dysregulated and didn’t peak as it should in the early hours of the day.
His ability to engage with other people has improved once again as it did when he was at the first plateau. Whereas before he used to move directly from his bed to his computer without talking to the rest of us, now he’ll stop to talk to the rest of us, actually engaging and initiating conversation. The other day, he even went over to his Dad and gave him a big hug – initiating the contact himself.
This second plateau lasted two weeks or so, and I noticed some other improvements during this time. Brendon asked to drive on his permit a few times. He explained that he no longer felt impulsive and out of control. He told me that these feelings were the reason he had been refusing to practice driving over the past year. Just the fact that he could express such self-examination is an improvement! He drove well, and with calm confidence.
Brendon is also able to handle multiple demands or instructions better. Early in life he would climb under a desk or, as he grew older, put his hands over his ears and say “Oh, go away! You’re confusing me!” But during these weeks I could remind him to take his pills AND to bring down his lunch dishes in the same breath.
I was overjoyed when he came up to me and asked if he could go with me to attend a political caucus. He said, “Mom, I want to go with you!” For any 18 year old to say that, let alone a child who used to avoid new situations, and especially new and social situations, I was really amazed at his initiative. Once we got to the caucus he cast his vote like everyone else. I was proud.
Brendon is a member of some groups that get together to play computer and card games, etc. He seldom, if ever, initiated conversation unrelated to the activity at hand. But now he is more engaged and he approaches other kids to start conversations, showing interest in people and not just the activity they are doing together. He wants to talk. I cannot tell you what a HUGE difference this is from the way he was before starting the MP. He even has a girlfriend!
We know that he has to move forward and use many other combinations of antibiotics before he fully recovers. We are fully aware that these antibiotics will probably cause immunopathology that will temporarily bring back many of his symptoms again. But we are already extremely impressed by the gains he has made so far, at just a little over six months into the MP. We are also optimistic about his ability to increase his antibiotics. At first he had trouble tolerating a second antibiotic, but after some tough immunopathology, it was as if he had made it over a huge mountain. Since that time he has been able to increase his antibiotics at a regular rate and still reap the improvements mentioned above.
I would pass on advice that I received from a counselor at Brendon’s school. She told me that it’s perfectly okay to put school on hold in order to address health issues. No matter what other people say, parents need to stand firm in allowing their child to have their physical health and emotional needs met as a priority before addressing educational needs. Furthermore, as they start to recover, it’s essential that we focus on allowing them to have a social life before forcing them to deal with the stress of school. Essentially social life comes first and school second. If a child is in the process of recovering from an illness, it’s not fair to say, “Oh, well if you found the energy to go out with friends then you should be able to make it school.” They need to form social ties and make friends. They can always catch up math and reading later in life.
Sure. I’ll put him on the phone.
Brendon: I feel a lot more stable, a lot more social. I can’t really recognize my autistic tendencies but I’m told they’re better. Benicar has been a big help.
I also had a migraine so today my back hurts. But it’s an illness where the location of my pain changes on a regular basis. So every day it’s like rolling the fortune wheel of torture.
Well, when you are grumpy or not feeling well, nobody asks, “Hey! What’s eating you?”
Yes, I’m pretty positive and I keep up hope. Sometimes when the immunopathology is strong, I lose sight of where I’m headed and I have to remind myself that that this will work, that ironically pain is a good thing because it means bacteria are dying.
Back on the phone with Doreen…
I know, we are so happy, he’s really made huge progress. It’s great!
Our whole family has just hit the one year MP mark, since Lauren officially started the treatment in February, 2007, and we all phased in after her. Dad continues to work, including extensive travel. It’s a struggle, but he is progressing in spite of the increased symptoms. Everyone in the family had to move to a modified phase 2 for cardiac and/or breathing symptoms, but we are now beginning to phase each of us into phase 2, starting with mom, next week!
Lauren has shown the most significant advances in health…in one year she has gone from 1 hour/day out of bed, with no energy for school or people, to 6-7 hours of sustained activity, including making her own meals, light housework, and 9 credit hours of online classes through the local college. She will graduate from high school this spring, just shy of her 21st birthday, and we are planning a trip to London to celebrate!
Amy Proal graduated from Georgetown University in 2005 with a degree in biology. While at Georgetown, she wrote her senior thesis on Chronic Fatigue Syndrome and the Marshall Protocol.