Juvenile Arthritis is a terrible illness, Arthritis is grim the constant pain of my Arthritis was difficult to cope with let alone a child having to deal with it.
'The cause of JRA is not known. It is thought to be an autoimmune illness. In this type of condition, the body's immune system mistakenly attacks and destroys healthy body tissue.' extract from Medline but much the same wherever you look.
My arthritis has been cured with long term antibiotics because it was found to be Lyme Disease. It concerns me how easily doctors reach for medicines such as steroids to suppress the immune system and assume that they are dealing with an auto immune illness when in reality it could be just the opposite and therefore different treatment that is needed.
The symptom list below reads like that of someone with Lyme disease and yet as I say in my earlier post about Arthritis and Juvenile Arthritis how many patients are tested for Lyme Disease and how many doctors even realise that the tests can miss up to 50% of cases.
http://www.nlm.nih.gov/medlineplus/ency/article/000451.htm
Symptoms
Arthritis symptoms:
Joint stiffness when you wake up in the morning
Joint pain
Limited range of motion
Joints may be warm or swollen and sometimes red
A child may stop using an affected limb or may limp
Back pain
Body-wide JRA symptoms:
Fever, usually high fevers every day
Rash (trunk and extremities) that comes and goes with the fever
Swollen lymph nodes (glands)
JRA can also cause eye inflammation called uveitis. This problem can occur without any eye symptoms, or someone may have:
Red eyes
Eye pain
Increased pain when looking at light (photophobia)
Vision changes
Another post I wrote on Taking Control is worth reading. Ruth was diagnosed with Rheumatoid Arthritis at aged about 16 now 20 years later she has discovered it is actually Lyme disease and receiving treatment through a private clinic she is on oral antibiotics and getting her health back. Ruth regularly posts videos about her health and I saw a more recent video where she is still making good progress. How exciting is that for her to get her health back after suffering from Rheumatoid Arthritis for 20 years but how sad it is to realise that she will not be the only child here in the UK who was never properly assessed to see if her Juvenile Rheumatoid Arthritis was actually Lyme Disease.
Hi, my daughter has had JRA since she was 18 months old. She is now 6 years old. She went for nearly 3 years without any flares. Now last week out of the blue she got a huge knee. HUGE. She may have ankle issues too again. Fast forward 1 week later, my 2 year old develops the Target Rash, looks just like Lyme Disease. I have her being treated at the moment, even though the doctors aren't convinced (it isn't really common in our area, although we travel and camp a lot). I find this bizarre that my daughter flared one week prior to my little one getting the target rash. I want to have her tested for Lyme now, just in case that is why... Please let me know, did you get the Target Rash too? How did they eventually diagnose you with Lyme Disease instead? Any advise? Thanks for the great writeup.
ReplyDeleteI just posted this on your blog Tara
ReplyDeleteI was so sorry to hear about your two little girls.
The Target rash is the Hall Mark of Lyme Disease and should be treated on antibiotics all parties would agree on that. However there is huge controversy over treatment of Lyme Disease as you will gather from reading the many posts on my blog.
International Lyme and associated disease society ILADS see link on my blog, advise higher doses and longer courses, however much of the World follows the discredited IDSA Infectious diseases society of america guidelines which advocate the normal dose and only two weeks. I live in the UK where Lyme is considered rare and many doctors don’t even know you can get it here despite health protection agency figures. There are many cases being picked up in my surgery now and I spoke with a woman who was diagnosed and treated last year on two weeks normal dose antibiotics as per IDSA, she has since had many symptoms returned and has just been diagnosed with Chronic lyme disease and is now going to be on long term antibiotics. How sad that the window of opportunity was missed to give adequate treatment at the early stage. To read the best guidelines on this illness see Burrascano guidelines found through ILADS website or on my side bar.
Lower down on my side bar you will read my story.
Because of the IDSA guidelines it is rare to find a consultant who will follow ILADS guidelines so it is important to become very well informed about Lyme disease,. I see from your website that you must live in Canada, wrong about not having Lyme Disease there, I have many friends who I am in touch with who suffer from Lyme Disease from many parts of Canada. Alison my great buddy even came and stayed with me last year and we went to the Lyme Disease Action conference together. She consulted with the same Lyme Literate doctor as myself but now visits one in Seattle. Alison lives in Edmondton where she knows several other patients with Lyme disease. I would advise you to have a look at Canlyme again links on my blog, and I would suggest you join a forum which helps with researching this illness, Eurolyme links on my blog is an excellent forum and although designed for Europeans there are several from USA and Canada post on there including a Canadian mum whose young daughter developed serious neurological, psychiatric symptoms from Lyme disease her daughter is doing very well now on long term antibiotics being treated by a US doctor and her local doctors and psychiatrist are dumbfounded that Lyme can do this and that long term antibiotics can turn the illness round.
The most important thing is that blood tests can miss 50% of cases but a private lab in USA Igenex has more reliable testing although in my case I never had a positive test, although 20 months of steroids for wrong diagnosis would have likely skewed the results. Steroids are a complete no no for Lyme Disease because they allow the infection to progress to other areas in the body although appearing to ease the symptoms by reducing inflamation.
In my case I had attended the surgery at the time of bites and bulls eye rashes and summer flu but doctors failed to recognise Lyme, it was some years later that I was given amoxycillin antibiotics for a chest infection and my arthritis and muscle weakness significantly improved. By then other cases had been diagnosed in the early stages of tick bite and bulls eye rashes. Of course not every one recognises the sometimes poppyseed sized tick that bit them.
With Lyme Disease you cannot depend on doctors having all the answers many dismiss Lyme without knowing much about it at all, that is why there is such a huge grass roots movement throughout many countries especially in the Northern Hemisphere. Do your own research and very best wishes.
You have my e mail if you want to contact me direct.