Juvenile Idiopathic Arthritis

Lisa 2018 Canada

This is a success story about my son who is now in his mid-twenties.

When he was 14 years old, he started waking up in the morning with sore, stiff hands. We didn’t have a regular doctor at the time, so we went to a walk-in clinic. Blood work showed that his rheumatoid factor was very slightly elevated. The doctor told him to take ibuprofen daily to alleviate the pain in his hands and to return in a few months to have his rheumatoid factor re-checked. Upon re-check, his rheumatoid factor was back in the normal range and the soreness/stiffness in his hands had gradually gone away.

Following the hand episode, my son started experiencing jaw discomfort more and more frequently throughout his teen years until it became a daily issue. Eating was especially challenging. We discussed the issue with our doctor, dentist, and orthodontist but no one mentioned the possibility of arthritis. Perhaps our new doctor never considered it since my son had been treated at a walk-in clinic for his sore hands and we had probably forgotten to mention the brief episode to our new doctor. Everyone we talked to just referred to it as a TMJ (temporomandibular joint) disorder of some sort. My son went to see a physiotherapist who specialized in TMJ issues and she gave him some exercises to do on a regular basis. The exercises helped somewhat, but his jaw discomfort was still a constant issue.

My son was a “late bloomer” and didn’t go through his growth spurt until he was 16 years old. By the time he was 18, he started noticing that his bite was not correct, even though he’d had orthodontic treatment between the ages of 15 and 17. We also noticed that his lower jaw was receding as he was maturing. At this point, he was going to school away from home so he went to see another orthodontist who sent him for an x-ray of his jaw joints. That’s when things finally started to make sense and it’s the first time anyone ever mentioned the word “arthritis”! At the time of the x-ray, my son had been asked whether he had ever suffered from arthritis. The oral radiologist indicated that “the head of both jaw joints appeared flattened which suggested joint remodelling”. Apparently, the remodelling of the jaw joints can be related to arthritic changes.

At the age of 20, my son ended up having jaw surgery to correct the alignment of his jaws. A couple of weeks after the surgery, one of his knees became very swollen and he ended up in the hospital as there was concern that he had developed an infection as a result of the surgery. No infection was found and the orthopedic surgeon ruled out other causes like gout. The only thing left, in his opinion, was arthritis.

Over the next 2 years, my son saw a rheumatologist to get help for the swelling in his knee which occurred periodically. Note that he had no other issues. His jaw discomfort had gradually improved after the jaw surgery. As well, his knee was not stiff or painful – it would just swell up at various times. We found it hard to believe that this was actually arthritis and kept trying to find other reasons for the swelling. The rheumatologist though was convinced that he was suffering from JIA (juvenile idiopathic arthritis) based on his medical history. My son was prescribed naproxen and sulfasalazine. Also, when his knee became so swollen at times that he couldn’t walk properly, he would end up getting the fluid drained from the knee and having corticosteroids injected. The sulfasalazine really didn’t appear to help, so the rheumatologist started recommending that he take methotrexate. However, after reading about methotrexate, I started doing my own research to see if there was a way to treat the arthritis without the use of strong, toxic drugs.

In November 2016, I found some information indicating that the Paleo diet could help arthritis sufferers. At this time, my son admitted that he had started waking up with stiff hands and feet. His knee was also very swollen and the draining of the knee was no longer providing any relief for him as the knee would swell right back up again a couple of days later. It had become a chronic condition. He started the Paleo AIP (auto-immune protocol) diet at the beginning of December and did start to see some improvement. Over the Christmas holidays, I read the book “The Arthritis Breakthrough” by Henry Scammell/Dr. Thomas Brown which led me to the Road Back website. From the Road Back website, I was able to get an AP doctor list.

My son saw Dr. H. in Toronto in January 2017. He started my son on minocycline (initially 100mg/day then bumped up to 200mg/day), LDN, various supplements, and weekly hydrogen peroxide intravenous treatments. Over 4 months, he showed signs of gradual improvement but to accelerate his progress, my son started undergoing Hyperbaric MultiPass Auto Hemo Ozone Therapy (SOT-hmahot). He underwent 10 of these treatments (each treatment consisted of 10 passes) and they drastically accelerated his progress. He was feeling improvement while actually undergoing each treatment!

As of September 2017, my son is virtually symptom free. He feels a tiny bit of something in his hands from time to time — just a reminder that there still could be something lurking in his body. He is back to playing the sports he loves and says he hasn’t felt this good in a few years. He does continue to generally follow a Paleo diet; however, he has noticed that some foods he had to initially avoid because they increased his symptoms are no longer triggering his symptoms. Gluten appears to be a definite trigger though. He also continues to take minocycline but has reduced the dose to 100mg/day. The people on this website suggest that one should always stay on a very mild dose of antibiotics even when in remission because apparently if it comes back, it’s harder to get it under control again. Note that for my son’s case, the antibiotics are just a hedge in Dr. H.’s opinion. My son’s blood work (RF, ESR, ANA, etc) has always been fine plus the DNA PCR tests for various mycoplasma, chlamydia, etc. came back negative. The only thing he tested positive for was Human Herpes Virus 6. Dr. H. feels that this could be the cause of my son’s issues, and antibiotics don’t work for HHV6. The ozone therapy, however, can get rid of viral infections. We’ve also read somewhere that mononucleosis can possibly trigger arthritis. My son had mono when he was 9 years old, so perhaps this is the root of his health issues.

I am amazed at my son’s improvement! He found the treatment to be challenging for the first while because he wanted to get 100% better quickly, but I encouraged him to keep going and hoped that the regimen he was following would pay off….which it did!! I would log in to the Road Back website here and there to keep motivated.

A big THANK YOU to everyone who helps out on this website and all the best to those starting and/or continuing their own journeys to find a better way to tackle arthritis.

Return to Stories