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Thursday, June 26, 2014
Lyme, Gardasil, Amplified Pain Syndrome, HPV vaccine reaction Or All of the above? Gardasil with Underlying Lyme? Maybe.
Now that we are through this I decided to write this article to let people know what we went through and that if their child is going through something similar they can maybe draw some ideas from this. The Good news is we are back to normal and my son as well as his family have their lives back...just with a lot more bills.
Part 1 An Unfortunate ATV Accident.
To get some background, my son a very high energy athletic kid at 11 yrs. (excellent soccer player) was in an ATV accident. No one saw the actual accident but I was told by my son that he went over the handlebars and spiked on his head. He was wearing a helmet and aside from a bruised leg seemed OK at first glance. About a week later, after a soccer game, he started showing concussion symptoms that eventually became severe. He started missing school and had all over body pain. We did all kinds of scans and lots of Dr. visits to specialists, neurologists etc... and had some scares, even tested for Lyme since he crashed in the woods. Nothing positive and after about 8 months and nearly missing the entire 5th grade and thousands in Dr. bills, he came out of it. We went to many doctors and physical therapist, acupuncture and several chiropractors. No one or thing seemed to help until one day a soccer friend of mine suggested Dr. Brian Applebee in Danbury, CT. He specializes in pediatric Chiropractic, I mention him here because my mom always said if you have nothing good to say don’t say it. Well I have all good things to say so I will mention him here. All others that I did not have such great results with will not be mentioned…maybe. Skeptic we saw him and after several visits he was starting to show progress. At our first visit we were told that he had some sever issues that he doesn’t normally see unless there was significant trauma. The guy did miracles. And we went on with our lives. So… fast forward, my son got back to soccer. Got through the 6th grade without a hitch. 12 yrs. old Looking great. 2 Soccer teams. Playing a lot, but started with some Severs type pain in his heels. We went to his concussion specialist whom we still talked to regularly and ended up trying Prolotherapy, where the Dr. injects a sugar water solution into the heel and it promotes healing. It seemed to work.
Part 2 Lyme and Gardasil Vaccine.
After Getting back to soccer and through a summer of finally some normalcy, we went back to soccer. My son is a very high level player and had a big pre-season tournament. Always on the field and always waving off any injury, by the 3rd game, my son could barely walk. His feet were killing him. He was walking like an old man. After we got home, he started feeling ill kind of like Mono. Fever, fatigue and generally knocked out. We called the Dr. after several days of this and missing the first few days of school. The doctor did some blood work and found nothing. Thinking to myself that our dog was recently diagnosed with Lyme, I asked our pediatrician that we try a Lyme test. He did so and negative. Over a week and a half and still very ill, I talked to the pediatrician and some more blood work, another Lyme strain test. Nothing. Knowing that the Elisa standard test is often wrong I asked about any other test and I was shot down. I then figured well maybe we have to get this kid pumped up and went to the Health Food Store. Immediately I was told, he has Lyme. I was recommended to a Lyme specialist, Zijad Sabovic in Bridgeport, CT. At this point my son could barely walk. He needed assistance to cross the room. He was convinced it was Lyme, “This is not normal” he let me know, so we did a Western Blot blood test at a labe in California (Igenex) and it was sent out. He was a very nice Dr. and took the time to ask a lot of questions and was truly concerned about my son’s outcome. In the meantime, we started Doxycycline and some vitamins and an Anti_Protozoate (Keeps Lyme from “Cocooning” and protecting itself from the antibiotic only to come out later). This med was VERY expensive but whatever helped at this point. After a week, there were not yet any true signs of recovery. My wife called me one morning when I was away on business and said my son could not get up and that his back was killing him. I asked what he did the day before and he had gone to see his team play soccer. My wife said he had to walk down a hill and it took a while because of his condition, so if figured he hurt his back on the hill somehow. After a week the pain was still there, he could not stand up, I could not even touch his back with a light touch. When he did he could not breathe. We went to Applebee and he had said that his hips were limited and his back was in spasm (if you read up on it this is where Gardasil gets a lot of girls) He suggested some sort of illness is at play. Now over a month out of school, I called Sabovic and we decided maybe the meds are causing it and take him off right away. After another week, the pain was still there. Back on the meds. The pediatrician thinks I am crazy at this point. So I started to think what was going on here. I then remembered he had some sort of vaccine in the summer. I called the pediatrician to get the date of the vaccine and what they were. The nurse got back to me with the dates. 1 week before the onset of the symptoms my son was given the first dose of the HPV vaccine or Gardasil. “Isn’t that for girls?” Yes it is usually except in certain states they are pushing it for boys to stop the overwhelming enormous number of anal cancer cases in men and boys?? I read up on the similar reactions to the Gardasil vaccine and brought this up with my Dr. Nope. Can’t happen. It’s perfectly safe. So… he says that my son takes an unordinary time to heal given his previous history and that there must be something else. So he suggests a rheumatologist that specializes in Amplified Pain Syndrome. In the mean time I am carrying my son around. To the toilet, shower, and anywhere else. Every time I move him he screams in agony and nearly passes out. Now I get the Igenex lab results. By CDC, NY State and Igenex standards he has Lyme. My pediatrician says they are not reputable and wants to see him again. So he orders a Western Blot test of his own, and off to the Children’s hospital to see a rheumatologist who has already told me over the phone at least that he has Amplified Pain Syndrome (APS) because that is her specialty of course. When we got there. She did not spend very much time with my son and having just gotten the Lyme test the day before, I presented it to her. In her words. “I don’t need to see that, it’s not Lyme”. I was told that $500 test I had was not by a reputable lab and was not worth the paper it was printed on. So Amplified Pain Syndrome is the new course for my pediatrician but not for me, I had a very bad taste in my mouth. I was very displeased at this point and let my pediatrician know who at this point had just received his Igenex Western Blot results. POSITIVE!, but he figured since he was now on the Doxy on and off for like 4 weeks that he was cured of Lyme and the left over was APS. Sabovic wants him on for at least a month and now the Pediatrician says he is cured of Lyme at this point. My son is no longer sick but still has the back pain. In the mean time I am getting back trouble from carrying my son all around the house so I rent a wheel chair and build a ramp. A VERY hard thing to do and of course the very first day him and his crazy brother roll the chair and he falls down. Somewhere in the next week he is feeling sick again and about 5AM I could not rouse him. He was cold to the touch and I thought the worst. I smacked him to wake him and he did get up but that was very scary, I even have a hard time writing this. In the morning I called the Pediatrician and basically said no more fooling around, he said that to get seen by any specialists at the children’s hospital I will have to go to the ER and get admitted. They kept him overnight. Many Dr.’s came to see us. I was told that Sabovic was a quack and the meds he is on are of no use any more and to stop them especially the Anti-protozoate. They thought this was the silliest thing they had ever seen. They did more blood work. No Infectious diseases. Good. They said that the Lyme is “probably” gone at this point anyway. After a few hours in the morning and since he was already diagnosed with APS then I needed to go home and start physical therapy for that. I was still not sold completely because why was he Ill. Amplified pain syndrome makes kids have pain where technically there really is none. I mentioned all this to Sabovic and also mentioned the Gardasil idea and he thought that was brilliant. He sent me to Boston (a very difficult trip for my son) and wanted us to get some sort of hemoglobin therapy. Boston sent me home and told me they were confused by Sabovic’s request and sent me back to the pediatrician. I wasn’t sold on the idea either and that’s where he lost me. So now reading up on Lyme, APS and whatever else I could I decided to make an appointment with Children’s Hospital Of Philadelphia since if I am going to go with this thing left with nothing else and CHOP is the best to treat this sort of thing or whatever else we may find. At this point I had Googled too much and had too many stories from people who had a friend with something similar, I was entirely confused and worried and having a hard time even focusing at work. I figured well let’s try an entirely new approach at a new hospital where no one has any pre conceived ideas as to what is wrong with him. The sickness part was starting to fade and we were left with this back thing. The wait for CHOP is months so in the mean time we just pushed my son around in his wheelchair and waited. Time ran long so my pediatrician said we should go back to the children’s hospital of Hartford and we did. The Pain Management Team (Who I always thought would just be drug peddlers) suggested saw us and suggested Lidocaine patches and a heavy dose of physical therapy. They recommended a PT in my area. Now from what I read, APS is a 4 hour of PT a day treatment. My local PT provider that the pain management suggested had no idea what APS was and would give me ½ hour twice a week. Back again to pain management, they suggest admitting him for about a week. They were concerned that because he was going to be with other kids without this condition it would be hard on him but he had our family and we would be fine. I said OK let’s do it and this was scheduled a week out. I also went to a nutritionist in Norwalk to make sure he was in tip top shape nutritionally to recover from this whole thing. $700 later I went with his vitamin regimen. So 2 ½ months in a wheel chair at this point. His legs are skinny, he is in constant pain. First day at the Children’s hospital they had him on a walker. Next day, no walker, by day 5 he can walk again with pain but can do it. 4 hours of PT per day, plus psychiatrists. They did all kinds of balance and desensitization exercises as well as talked to him to make sure he wasn’t making this up and putting too much pressure on himself. Now he is a driven kid I will give you that. In fact they told me his biggest problem with PT is holding back. He will go until he hurts himself. Yep that is my son since he was born. The PT at Hartford Children’s Hospital did a fantastic job. He was released on his 13th birthday. Back to school 2 days later. Walking, kind of. They had mentioned that he has flat feet and pronation and needs braces for his feet while he gets stronger. We got him custom orthotics by request of his new physiatrist and started PT at a local PT provider but the recovery was very slow. After a month we stalled. He was not getting any better. So I figured MAYBE the Lyme wasn’t really gone after all and on my own I refilled his antibiotics and started him again but this time there was no interruption. The pediatrician didn’t like this but… He started doing very well quickly. Fast forward about a month and he is out of PT, working out at the gym with me to get stronger, another month he is playing local soccer. On more month he is back on his team as a practice player, Another month he is one of the strongest players on his premier “A” team. Scored or was part of all the goals in their recent tournament. No more Braces no more pain, just a kid again. Caught up in all of his classes with mostly A’s after missing the first 3 months of school.
So here is what I think. My son obviously had Lyme, was it since the first ATV accident? I don’t know or did it go dormant and rear itself later on? I think that having underlying Lyme and getting the Gardasil Vaccine was a blow to his system. He was in a weakened state and his body did not have enough strength to cope with the vaccine as it was already fighting Lyme. I think there really needs to be more studies on this possibility. I have found some reports on the internet alluding to this but nothing concrete. Of course I did not give him any more rounds of vaccine, he only got the first of the 3 doses. My older son had it prior to this with no reaction, but I can tell you that my 2 younger daughters will NOT be getting the vaccine just in case. Did he have APS? I don’t think so but the PT was the correct thing for him anyway. If you think your kid has Lyme, request the Western Blot Test. The standard Elisa test results in far too many false negatives. Does he have chronic Lyme and will it rear itself again later on, that is my worry but for now he is about 95% of before the incident and pushing forward.