28 Oct 2007
She’s a Senior Principal Research Scientist and the Research Program Leader of Enzymology & Synthetic Biology for the Division of Entomology, Commonwealth Scientific and Industrial Research Organization, in Canberra, Australia. Despite her broad background in the biological sciences, and her PhD in immunology, she was unaware of the pathogens causing her son’s illness– that is until she learned about Autoimmunity Research Foundation’s Marshall Protocol. Dr. Robyn Russell will now take your questions….
Everything started in June 2004 when Matt was 12 years old. Matt started to have very painful headaches. It was in June that my husband and I first wrote one of Matt’s teachers a note saying that he wasn’t able to complete his homework because of his headache. We were concerned because a child his age should certainly not be suffering from debilitating headaches. We saw a doctor and he told us that Matt had a sinus infection. Over the next few months he was put on courses of high-dose antibiotics but the head symptoms would always return. Finally the doctor said, “I have no idea why Matt is not getting better.”
We were referred to an ear, nose and throat doctor but there was a three-month waiting list in order to see him. During the time we had to wait for the appointment Matt began to develop urinary tract infections as well, which is uncommon for a boy. We had a family vacation planned to Europe that was centered around a scientific conference that my husband and I were planning to attend. While on the trip, Matt continually woke up with a terrible headache. As the day wore on, we’d do everything in our power to distract him, saying “Look, the Louvre! The Mona Lisa!”, but Matt just wanted to go home and rest, and the distraction was a losing battle. During the trip Matt did find that swimming helped his headache.
Once we got back to Canberra, Matt started to miss school increasingly regularly. His head hurt so much that he simply couldn’t concentrate. My husband and I were forced to come pick him up in the middle of the school day. We would take him swimming because that was the only way he could get some relief. I remember the last time we tried that he spent four hours in the water trying to get rid of his headache, but it didn’t work any more so we had to give up.
Finally we were able to see the ear/nose/throat specialist. He told us, “Matt doesn’t have a sinus infection and I have no idea what is making him sick.” I thought, “Oh no, what are we going to do?” The doctor told us to see a pediatrician. Once again we had to wait weeks for the appointment. During that time I was able to do nothing, just watching Matt suffer from the pain. When we finally saw the pediatrician he told us that in his opinion Matt’s illness was psychosomatic. He said that we should force Matt to go back to school. My husband and I just looked at each other wondering how Matt could possibly make it through a full school day. Matt was also referred to a psychologist.
When the psychologist spoke with Matt she became convinced that his illness wasn’t psychosomatic. She felt he had a “post-viral” syndrome. Looking back with 20/20 hindsight she was at least on the right track.
During this time Matt started to develop a tic. Actually it was more than a tic, it was a grunt accompanied by an involuntary jerk of his head. We went back to his pediatrician practically begging for help. When we told him the psychologist didn’t think it was a psychosomatic, the pediatrician got angry and said, “Well, she’s never let me down before!” He was convinced that it was still psychosomatic and refused to investigate any further. I was a mess. I broke into tears and said, “What do we do?! Our child is sick and we’re on our own!” Our GP pulled some strings and got us an appointment with an adult neurologist here in Canberra.
During this time, Matt’s tic started to get worse. At its worst he would feel what he called a “surge” coming to his head. He would throw himself violently forwards and backwards about 5-6 times, as if he had been taken over by a massive wave. He would grasp his head because of the pain. This happened about every minute of every waking hour of the day. Later I found out that what he was suffering from is called a myoclonus, something that our doctors had never seen before. We also noticed that Matt was starting to avoid light. He stopped watching TV and only wanted to stay inside his dark bedroom. He couldn’t read or write because his head hurt so much. He couldn’t even bear to look at a piece of paper.
At the same time he started to feel much more fatigue coming on and always wanted to stay in bed. He also began to experience vertigo. He couldn’t lie down flat on his back because it caused the vertigo to increase. He started to sleep while propped up on five pillows so that he wouldn’t feel as dizzy. He also developed a strong aversion to riding in motor vehicles.
We saw a new pediatrician. He had Matt go to the hospital to get a lumbar puncture done. The doctors focused only on Matt’s headache and ignored his other symptoms. It was weeks before we could get the results of the lumbar puncture. During that time I was frantic. We were out on our own and Matt was getting worse and worse – his headache and myoclonus were getting more violent. I remember sitting on the couch trying to hold him while he thrashed back and forth– it was terrible. Finally we called Matt’s pediatrician at home and told him we were taking Matt to the hospital. He was admitted and put on painkillers. They did an MRI, which required Matt to lie flat on his back. He was in agony.
He was put on an anesthetic so that he could have another lumbar puncture done. While on the anesthetic, his myclonus temporarily stopped. Then a few hours later it returned in a different manner. He would feel a surge coming on, then grab his head and scream AHHHHHHH! He didn’t even realize that he was screaming but he could be heard a mile off. We were panic stricken and the entire family was a mess. A 24/7 social worker that was supposed to work with Matt actually ended up counseling the entire family. Matt stayed in the hospital. He stopped eating. He basically just shut down.
The doctor insisted that Matt was psychologically ill and should be put in psychiatric care. When I questioned his diagnosis he said, “Robyn, I’ll tell you again, there is nothing physically wrong with Matthew!” We were told that Matt had a generalised anxiety disorder and should do cognitive behavior therapy. By that time I had given up. I said ok. Somebody please fix my son. I put my faith in the doctor’s diagnosis. Matt wanted to go home but they wouldn’t let him leave the hospital unless he started eating and walking. In order to get him to comply they said that we were only allowed to spend one hour with him each day. Since he was used to having us around constantly he forced himself to try to walk to the toilet and eat. It broke our hearts. They finally let him come home.
In the weeks after he left the hospital Matt’s myoclonus softened a little. It became more of a shake and a “hmph” sound. We were very anxious because his doctors insisted that he start school again. Year 7 (ie his first year of high school) was just about to commence. He still couldn’t read or write. He complained of a funny taste in his mouth. We talked to Matt’s headmaster and the school set up a system where he could leave class at any time without requiring permission from his teachers and go sit in the special education room. Meanwhile, he was bullied by a couple of kids because of his myoclonus and because he was so weak. Most of his teachers were very supportive but one gave him a hard time when he tried to leave the classroom. He scraped through ten weeks of classes. Later we found out that he had just attended about ten minutes of every class and then left to try to rest in the special ed room.
During this time he started to have problems with his eyesight. There were periods when he had blurred and double vision. His pupils would become dilated. He was still seeing a psychologist and one day he stumbled into her office with his pupils dilated, unable to see straight. She was alarmed and contacted his psychiatrist, “Are you sure Matt’s doctors didn’t miss anything?” She said “I don’t think so, the mind is a powerful thing.” I thought, “Here we go again. What do we do? His neurological symptoms are getting worse!”
Around that time I met with some of the teachers at Matt’s school. The newly appointed Head of the Special Education Department said, “I just googled Matt’s symptoms and they seem to be consistent with Lyme disease – have Matt’s doctors considered that?” I had never heard of Lyme disease but I googled it and investigated it online. There were good reviews about Lyme disease in children that mentioned nearly all of his symptoms as possible consequences of the disease. I was excited. I had never participated in an online chatroom discussion but I forced myself to give it a try. In a forum called “BrainTalk” I posted Matt’s symptoms without saying anything about Lyme disease in order to see if someone might independently confirm the diagnosis. One of the people who wrote me back said his symptoms were consistent with those of Lyme disease and provided me with a link to the Marshall Protocol (MP) website.
I got on the MP site. I started reading other people’s progress reports and comments. Many of them had the same symptoms as Matt and were getting better! I looked into high-dose intravenous antibiotics but it didn’t seem like a logical treatment option. I read cases of people taking IV antibiotics for more than 20 years after their initial Lyme diagnosis. It clearly wasn’t working. I continued to trade emails with the person who had alerted me about MP.com. He helped me understand that I could no longer count on Matt’s doctors to help him and that I would have to stand up on my own and take action. I thought, “The MP looks like a difficult treatment to do.” However I knew that if we didn’t start the treatment right away, Matt could miss out on years of his life.
During this time my husband and I also remembered that a few months before he became symptomatic, Matt had been bitten by an insect. It wasn’t a classic tick bite, but the bite was large, red, and swollen in the middle. I remember saying to Matt, “Well, that’s no mosquito bite.” Up until this time we had not connected the bite to Matt’s illness, but in retrospect it was probably what exacerbated the whole thing. Matt tested weakly positive for Borrelia and strongly positive for chlamydia in a PCR test and positive for a rickettsial infection in a serological test. That was the final confirmation we needed in order to decide to put Matt on the MP.
We set out to find a doctor who would put Matt on the MP. We saw a prominent Lyme specialist in Sydney. My husband and I were scared to bring up the MP because we knew it wasn’t his standard method of treatment. But halfway through our conversation Matt turned to the doctor and said, “Can I please have the MP?” My husband and I held our breath. The doctor said, “Well mate, I don’t think you have anything to lose!” I thought, “Oh, thank God!” We approached another doctor in Canberra and told him that the specialist in Sydney had said that Matt should try the MP. This is because we wanted Matt to have a doctor that worked close by. Because the specialist had consented, this doctor did as well. We were ecstatic. We have managed the MP with a lot of support from our doctor. Whenever he would suggest something we would post about it on the MP board. If the moderators agreed that it was not a good idea we would send the post to our doctor. He always respected their advice. The rest is history. Matt started to improve within a few days of starting the MP.
I’d say that Matt is about 80-90% recovered. I truly feel this is the beginning of the end. Matt is almost completely well again. The only things he still deals with are a mild headache and fatigue, but even these are starting to go away. Over the past few weeks Matt has told us that he actually goes through periods where he feels no headache at all. So at long last, those headaches that he has put up with for more than 3 years now are on their way out. If they go the same way as his other symptoms then we would expect that the periods of headache-free time will increase daily until they are a thing of the past. We just can’t wait! Note from Amy: At this point in the conversation Matt approached his Mom on the phone in order to tell her he hadn’t had a headache for the last 40 minutes. She said, “Isn’t this amazing!” I agree!
Matt’s tic started to become less frequent a few months after he started MP and disappeared completely within nine months. As with most of his symptoms, once we started to note that it was on the way out it disappeared rather quickly. His vision is completely normal again now.
When Matt first started school again he was so excited to be going that he was shaking. He is now heavily into the second semester of Year 9 and really enjoying being able to do more subjects (he recently doubled the number of subjects he is taking, so he is now doing about 75% of a full load). It’s good to see him start some science at last, as well as multimedia (I think that’s where they learn to make web sites so he should be able to talk to Dr. Marshall about stuff like that soon). He goes to school every day, though for not quite a whole day. Matt is coping well with school and keeping up with the workload. It’s hard to shift him from the computer at night now that he has assignments to get in on time. He doesn’t ask for extensions any more.
About July 2007, he was able to tolerate the highest dose of the strongest antibiotic combination taken by people on the MP. Even on that dose, the immunopathology didn’t stop him doing anything and I wouldn’t have known he was taking the antibiotics unless I asked.
Matt used to go outside for a half hour after dinner every night because the fresh air helped him feel less nauseous. Well, he stopped doing that a while ago as he doesn’t think of it anymore – the nausea appears to have stopped.
Matt doesn’t go to bed during the day at all now and packs a lot in. Really, there’s not a lot he can’t do now. He used to take the painkiller paracetamol, but rarely reaches for it at all these days. It’s wonderful to go into his room first thing in the morning with his Benicar and see him lying down like a normal kid and not propped up on 5 pillows like he used to be.
Matt’s light sensitivity has improved tremendously. He now takes his glasses off for a while outside when it’s cloudy – it gives me the creeps but Matt tells me to stop worrying, that he is fine. Mostly he puts them back on, but they are only the 40% glasses, he doesn’t wear the darker ones at all anymore. He rarely wears glasses inside anymore, even at the computer or to watch TV. A while ago he announced that I could take the black plastic off the windows at the front of the house (these windows get the morning sun only). I didn’t need to be told twice and had a lovely time in the afternoon removing all the plastic and dusting all the window sills and light fittings.
This past Christmas Matt had a ball! He shopped and stayed up late (for him) and slept in late (for him) and watched lots of TV and wrestled with his brother. He was even the one who played “elf” and handed out all the presents from under the tree! The last couple of years he has just sat there while everyone else rushed around, but not anymore.
Matt had a wonderful birthday with his friends. It is hard to believe that he is now quite a young man. He had a party with about six of his friends. They went to a movie then came back home for a BBQ and to generally hang out. Last year he had a few friends over for an hour, after which time he sent them home so that he could go to bed. Not this year!
During the recent school holidays Matt had a great time at the beach, helping us in the garden and bowling with his friends. We had plenty of nice walks along the beach (that invisible zinc cream that blocks vitamin D production is wonderful stuff!) and even saw a seal with a fish in its mouth on one of our walks. While on vacation, we had a huge detour around a car accident that closed the highway on the way down, which resulted in a hairy ride over 80 km of dirt road and strung a less-than-3 hour car trip into 7 hours. Matt handled it in stride and has convinced us all that his aversion to car travel is well and truly behind us.
Then a few months ago we all flew down to Melbourne for the weekend to help my Dad celebrate his 90th birthday. We had a great time – even went to the MCG on the Saturday to see the Blues (Matt’s and my team) play the Magpies (John and David’s team) and really enjoyed ourselves. Matt screamed and barracked [shouted encouragement] with the rest of the crowd and I had to pinch myself to make sure I wasn’t dreaming. The Blues lost, unfortunately, but that didn’t dampen our spirits. And Poppy had a lovely birthday.
Matt has started to go for runs after dusk – he doesn’t go far but is enjoying being able to run again. He is determined to join in training with his football team next season – that’s still some months away so he will probably be up to it by then. Next year we are confident that he will be able to attend school normally and handle a full course load. He’s also started taking guitar lessons after school.
He’s played some great games of cricket at school and has friends over on the weekend. He keeps up with his friends very well, playing table tennis and kicking the footy (AFL football) and watching movies. Just like a normal kid!
In the early days on the MP Matt would tell me, “Mom, when I get better everything is going to be 10 times as wonderful as it was before I got sick!” And his prediction is coming true. I can see it in the way he goes about things. He thinks every single thing he does is fantastic, he just loves life! He will never take anything for granted, especially his health.
No, I was never skeptical. Although the first time I posted on the board I was worried about Matt’s 1,25-D level. Meg Mangin (a nurse moderator) wrote me back and said, “I’m very sorry to hear what you’ve been through.” It was the first time anyone had acknowledged how sick Matt was and understood what he was really dealing with. She went over the possible reasons why Matt’s 1,25-D wasn’t as high as expected and assured me that the MP would still work for Matt because his symptoms were so indicative of Th1 illness. It was the first time that anyone had actually used Matt’s correct symptoms to decide how to handle his illness. She told us that Matt should do a therapeutic probe and start the treatment anyway. Later we found out that Matt’s 1,25-D blood test was done incorrectly.
When Matt took his first Benicar I held my breath. But a day after taking the medication his voice, which had been hoarse ever since he got sick, was normal. His demeanor had also changed, he seemed more responsive and would chat to us again. We knew that something was happening. Three weeks later we gave Matt his first dose of minocycline. It wasn’t long before he said, “Oh, I’m going to bed.” It was like he had walked into a brick wall. That was actually some of the strongest immunopathology he’s ever had. All we could think was, “It’s immunopathology! This is working as expected!”
The next day he was very quiet and still didn’t feel well. I was worried because I knew I had to give him another dose of minocycline the following day. But when he woke up the next morning the symptoms were lifting. It was a textbook immunopathology response. Literally, if there were an MP textbook Matt would have followed its predictions exactly. With each new dose of minocycline he felt a little bit better.
When we first gave Matt minocycline we didn’t tell him that he was supposed to feel a rise in symptoms. We wanted to see what he would report without being influenced in any way. We just said, “Here you go, don’t worry if you feel a little bit crook (bad).” But he reported the rise in symptoms as expected. Later we talked a lot about the treatment but when it comes down to it, he basically trusted us. We told him we were going to fix him and tried not to make him concerned about the process. He was a trooper. He never complained once, took his meds exactly as directed, and never once questioned the treatment. He’d felt so terrible for such a long time that he was easily able to handle the MP.
We were careful to make sure Matt blocked light correctly while on the MP. He did not attend school during his first year on the MP so that he could rest and avoid the sun.
I give Aussie Barb (another nurse moderator) a ring about twice a week. We discuss Matt’s symptoms and talk over how to adjust the antibiotics. She has become a good friend. Then I always post in Matt’s progress report describing exactly what change I am going to make. That way the moderators can comment if they don’t feel the decision is correct. For example, once Dr. Marshall wrote back saying that Matt should not take a double strength form of one of the phase 3 antibiotics. Single strength would do the job because Matt is not an adult. I never had to finesse the dose or worry about an immunopathology reaction that was too strong. His symptoms were always tolerable.
In the early days when the immunopathology was strong, Matt just took himself to bed. He couldn’t watch TV, read or write, so he listened to audiobooks. The audiobooks were a lifesaver and provided hours of distraction.
Post regularly. Take the moderator’s advice. Help your doctor make decisions because he will not be able to take the time to research the MP in the same depth that you will. If your doctor gives you advice check with the board to make sure it is correct. If they say it’s not, let the doctor know that it’s been disputed.
I’m very frustrated at the current medical climate and the lack of understanding among doctors and researchers about the true cause of chronic disease. I’ve done a lot of networking with other MPers in Australia and together some of us have created the Australian Autoimmunity Foundation (AAF). The aim of our foundation is to support MP patients and their families and to help them to educate their doctors about the MP. We have also arranged for a compounding pharmacist in Melbourne to stock the MP meds and Noir glasses that MPers need – before that we Australians had to source Benicar from Germany and the glasses from the US, so it is much easier now. It’s difficult to keep up with Dr. Marshall’s work and new research. Unless you literally spend all day reading it’s hard to stay up to date as the field is moving so quickly. But we do our best to keep up! We have created MP patient support groups in different Australian capital cities – Adelaide, Melbourne, Brisbane and Sydney. Grace (another MPer) and I just drove up to Sydney for a patient support meeting where we were able to chat with new patients and reassure them that they will be ok.
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.
Amy has spoken at several international conferences and authored several peer-reviewed papers on the intersection of bacteria and chronic disease.
If you have questions about the MP, please visit CureMyTh1.org where volunteer patient advocates will answer your questions. Another good resource is the MP Knowledge Base, which is scheduled to be completed within the next year.