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Our journey with JIA began about 2.5 years ago when our son described extreme pain in his feet (wanted to cut them off). Blood work was ordered from our family ped – ANA positive (pattern was centromere, positive for CREST) and positive for Celiac disease. We quickly eliminated gluten, the intensity of the pain lessened, however the pain spread throughout his body at a rapid rate.
We have been seeing a peds rheumotologist for 2+ years and visit her every 3 months. They did an MRI and found synovitis in his feet which is how he was given the diagnosis of JIA, possible psoriatic JA because he did have psoriasis briefly on his elbows about 2 years ago.
Our son has gone through the typical progression of meds. Currently he is taking methotrexate (1.5 years), Celebrex (almost 2 years) and Humira (3 months). His symptoms have stabilized, but have not shown large improvements. He has pain in every joint, primary pain is in his hands (usually a 7/10 pain) and feet (6/10). He also has bouts with fatigue.
Blood work continues to indicated CREST, all other ANA are negative. Centromere anti-bodies have dropped from 36 to 14. Visually, there are no signs of CREST or arthritis. He did suffer with Raynauds last fall, but that has lessened.
He has been taking a probiotic, fish oil, tart cherry and just started L-glutimine to heal the gut.
We would like to visit a doctor that would entertain the idea of AP. We live in Florida, however we are willing to travel. Any suggestions? We would greatly appreciate any insight you may have to offer. I feel I have been grabbing at straws for almost 3 years. One thing I hold onto securely is HOPE, we do have hope for remission!
@Amelia wrote:
We would like to visit a doctor that would entertain the idea of AP. We live in Florida, however we are willing to travel. Any suggestions? We would greatly appreciate any insight you may have to offer. I feel I have been grabbing at straws for almost 3 years. One thing I hold onto securely is HOPE, we do have hope for remission!
Hi Amelia,
I saw your email to the apdoctors email address this morning and no doubt Diana, our AP doc first-responder will reply to your request shortly. You may also receive a call from Cheryl Ferguson, the RBF President, who tries to call every SD patient who leaves a phone number in their email. 🙂
There are a few AP docs scattered around FL, however, there are a couple of routes you can go with this. If you want an experienced rheumatologist who can provide both a clear diagnosis and has much experience with scleroderma (he was one of the docs who treated Cheryl’s daughter who was also a teen when she developed systemic SD – now in remission and at med school!), then it would be worth the flight to Riverside in CA to go see this doc and get a protocol tailored to your son’s individual needs. He does take some insurances, but this is something you’d have to check. For out-of-towners, he usually requires a two-day stay for a complete work-up and may be costly, if out-of-pocket. Many patients feel it is worth it to see this doc, however, because he does have such extensive knowledge of SD.
Many SD patients are also discovering they have concomitant Lyme. If this is the case for your son, then building a team with a Lyme Literate MD may also be relevant. The doc in CA is not Lyme Literate, as this serious set of infections requires specialized insight.
If Diana doesn’t send Dr. F’s contact info in Riverside, CA, then I’d be happy to send it to you, Amelia. Just let me know. I’ll also look out for her reply to you today on the email system.
A warm welcome to you! 🙂
Amelia, so sorry to hear about your son – I know what you are going through – my 14 year old daughter was diagnoised with JRA in Feburary and also has Raynauds. Lucky for us, after praying for an answer – my wife took a drive to Wallgreens and heard about AP from a doctor speaking about it on a radio show (Author of “The infection Connection”). She came how to tell me about what she had heard, and of course I was very skeptical, but after doing reasearch, reading Harry Schemmell’s book, and finding the Roadback foundation – I am a belivever. I can’t offer you a personal success story – yet – my daughter has only been on AP for 5 weeks (Doxy 2x100mg MWF), however, I firmly believe we are on the right track and are praying for complete remission. I am a bit lucky in that I have a MD who is a good friend, and although not a Rheumy, is willing to RX antibiotics and help me with the AP protocol – which I am learning lots about from the suggested books, and the wonderful people on this forum especially Maz. I have also convinced my Rheumatologist to see my daughter while on AP, and she is willing to monitor her progress, and offer her professional medical opinion as part of our medical team.
Amelia, at this point all I can help you with is encouragemnet. I encourage you to find a Doc that is willing to help and get started on AP as soon as possible. I fully belive that AP, not conventional RA medications is the way to go. I wish the best for you and your son as you go through this journey…there is hope…Best…MaxMaz and Max –
Thank you for your kind and thoughtful replies. I appreciate the encouragement and hope!
I had the pleasure of speaking with Cheryl today and look very forward to consulting a Rheumotologist that will entertain AP for our son and also assist with a diagnosis. I also purchased Harry Schemmell’s book today – can’t wait to read it! I know the AP would be a safer option that the current meds Ky is on now.
I will certainly keep you posted on Kyle’s progress.
Max, I will be watching your posts for updates on your daughter’s condition. I fully appreciate the daily challenges of watching your child struggle through the day whether it’s from fatigue or pain. Wishing you family the very best results with AP.
Kindest regards, Kim (Amelia Island is where I live)Max, I will be watching your posts for updates on your daughter’s condition. I fully appreciate the daily challenges of watching your child struggle through the day whether it’s from fatigue or pain.
Kim…will definitely keep you and anyone else interested updated as to my daughters progress…I have noting but the strongest conviction that AP is the way to go – especially after reading Schemmell’s book and the numerous testimonies on this and other websites. Sure, I would like an immediate cure – who wouldn’t? But, I’m willing to go the distance. Of course, it is very unnerving that I am taking a different direction than most doctors would recommend, and that my child’s ultimate health and wellness depends on the medical decisions I make – but this is not a blind decision nor is it following a “snake-oil” sales pitch. There are proven studies to show that AP works – and numerous testimonials backing up this protocol when conventional medications did not work or were marginal at best. i believe we are on the right “road” with AP – I’ll be interested in you journey and will be praying for a fast remission for your son…Best…Max
@Amelia wrote:
I had the pleasure of speaking with Cheryl today and look very forward to consulting a Rheumotologist that will entertain AP for our son and also assist with a diagnosis.
Kim, just so you don’t miss it, I followed up Diane’s email to you with Dr. F’s and Dr. S’s contact info. Sometimes our emails get tied up in people’s spam boxes, so just thought to let you know you had two responses to your email request for AP doctors.
Glad you had a chance to speak with Cheryl! 🙂
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