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My 10 year old daughter was diagnosed with Juvenile Idiopathic Arthritis 3 years ago. We live in Michigan. She’s been receiving “treatment” at University of Michigan CS Mott’s Children’s Hospital. We are wholly unsatisfied with the treatment thus far. This is supposed to be a world class hospital.
I was made aware of the antibiotic protocol by an ex work associate who benefitted greatly from it. He was a major college tennis player who’s arthritis got so bad by the time he was in his 40’s that he was having difficulty even getting out of his car on his own. He is now playing tennis again 3 nights per week.
I have since read everything I can on AP and Dr. Brown. I CANNOT GET MY DAUGHTER”S DOCTORS (even our family physician) to listen to me! I am considering going to a DO just to get her on the antibiotics.
Can anyone give me advice on how to get the doctors to listen? I printed off all of the information in the physician’s packet (72 pages in all) and will be delivering it to our family doctor. Should I just forget about the major hospitals and MDs and move right to a DO? Or should I use both? Have her see a DO and continue to see a rheumatologist?
Please help. I will do anything to help my little girl.
Hi Dad;
There are quite a few parent on this site who have children with JRA.Suzanne is one who comes to mind and I am sure she will eventually see your post.You might want to use the “search” at the top left of the bulletin board and try this….Suzanne/daughter/JRA and I would think something will pop up.Seems that she is doing just great
As to getting your doctor on board….I can say a lot of terrible things about a lot of them.Horses with blinkers on.DOs are usually good help but interview them seriously,ask about AP and watch that they don’t sell you a bag of costly supplements that you can get yourself at a local health food store.When I was young and stupid I fell for this and nearly went broke so make sure to check with us here before buying anything.Find out if they take your insurance,many do not.
By the way,minocycline is an approved DMARD and can work just as well as some of the biologics that muck up the immune system.
Most of the members here are sick but doing better and better and only get to this board in the evening or weekends because they now lead,semi or totally normal lives again
Lynne@briannasdaddy wrote:
Should I just forget about the major hospitals and MDs and move right to a DO? Or should I use both? Have her see a DO and continue to see a rheumatologist?
It is difficult when it is a child and you go outside the mainstream. In the process of trying to help your child, you must protect yourself. Document everything. Make you sure have her history on traditional meds well-documented and in order.
We always felt that is was best to have as many eyes on our daughter as possible. That way, no one could say our choices were harming her (unless they really were). We did both, which made for many an uncomfortable office visit in the beginning. Now,it isn’t issue. If it is the best for your daughter, everyone will be able to see that eventually. Good luck!
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Hi Lynne, I want to point out that in our experience, even AP doctors shy away from mino for children. When my daughter turned 8 (the FDA approved age), I thought we had finally made it, but the answer was still no. I have heard the same from some SD moms. I’m not sure what they consider the magic age to be, but azithromycin is what we have substituted all these years.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Hi Briannasdaddy,
Would you like a listing of AP providers for your state (Michigan?)? If so, please feel welcome to follow the instructions on the link below to request this:
Not all listed docs will treat pediatric cases (and many don’t accept insurance as Lynne already pointed out), so depending upon where you live, you may either need to travel to an experienced doc who will treat kids or, if you have an open local GP or PCP (any doc with a license can prescribe abx), there is a very kind AP doc in Iowa who will freely consult with local docs on the therapy and answer patient questions. Really depends upon where you’re living and if there is a pediatric provider near you.
Let us know how we can support you and we’ll do our best. 🙂
I forgot to ask you if you might be living in an area with high Lyme.I know that the island and the west side of Michigan is just loaded with it as I have friends who live there.If you google …map of Lyme in Michigan… you will see which areas are bad,fair and no problem.
There are so many of us on this site that have it to thank for our diseases.You might like to use the “search” at the top of the page and just type in Lyme and at the bottom of each person’s posts you will see what meds are being used.If fact Maz did a posting that should be about 2/3 of the way down the page about a pediatric LLMD.Read itSuzanne,I am surprised to hear docs are using Zith as now most AP docs don’t use it as it can cause severe heart problems.Even Dr. Marshall does not use it anymore which really surprised me because on MP it is only taken once every 2 weeks.
@Lynne G./SD wrote:
Suzanne,I am surprised to hear docs are using Zith as now most AP docs don’t use it as it can cause severe heart problems.Even Dr. Marshall does not use it anymore which really surprised me because on MP it is only taken once every 2 weeks.
She was already on it with no problems when that news broke. I think it must be something you are susceptible to or not, like with Vioxx and Bextra.
You might find this helpful:
http://www.peoplespharmacy.com/2012/05/18/antibiotics-and-sudden-death/Azithromycin for asthma is becoming more mainstream:
http://www.peoplespharmacy.com/2014/06/16/antibiotic-treatment-is-easing-asthma-symptoms-that-did-not-respond-to-steroid-inhalers/Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
@Lynne G./SD wrote:
Suzanne,I am surprised to hear docs are using Zith as now most AP docs don’t use it as it can cause severe heart problems.Even Dr. Marshall does not use it anymore which really surprised me because on MP it is only taken once every 2 weeks.
My daughter is on Zith too. I was initially also worried about its side effects. Than I did little research about it and it is dangerous to the high-risk patients.
http://www.drugwatch.com/zithromax-z-pak/
” Researchers concluded thatIf you are striking out with local doctors, you may want to consider traveling to an experienced AP doctor elsewhere in the country. Once your daughter is on a protocol and doing well, there’s a good chance the distant doctor can communicate with the local doctor and will increase the chance of cooperation.
Some people have to put together a patchwork of help. Getting regular tests done locally, but primary AP care is long distance.
Think strategically!
Thank you everyone for the input/help.
I want to bounce my thinking off of you to ensure I am approaching this correctly.
From my view, the #1 priority is finding someone who will prescribe the antibiotics. Once I accomplish that, regular check ups to monitor the progress AND the side effects (if any). I am not opposed to also continuing seeing a rheumatologist just to monitor joint damage, etc.
Does anyone see any problems with that approach?
@briannasdaddy wrote:
My 10 year old daughter was diagnosed with Juvenile Idiopathic Arthritis 3 years ago. We live in Michigan. She’s been receiving “treatment” at University of Michigan CS Mott’s Children’s Hospital. We are wholly unsatisfied with the treatment thus far. This is supposed to be a world class hospital.
I was made aware of the antibiotic protocol by an ex work associate who benefitted greatly from it. He was a major college tennis player who’s arthritis got so bad by the time he was in his 40’s that he was having difficulty even getting out of his car on his own. He is now playing tennis again 3 nights per week.
I have since read everything I can on AP and Dr. Brown. I CANNOT GET MY DAUGHTER”S DOCTORS (even our family physician) to listen to me! I am considering going to a DO just to get her on the antibiotics.
Can anyone give me advice on how to get the doctors to listen? I printed off all of the information in the physician’s packet (72 pages in all) and will be delivering it to our family doctor. Should I just forget about the major hospitals and MDs and move right to a DO? Or should I use both? Have her see a DO and continue to see a rheumatologist?
Please help. I will do anything to help my little girl.
Brianna’s Dad,
So sorry your young daughter is having these problems. Over the years I’ve read they can actually come from any number of causes, but respond well when the choice of med is tailored to the cause of the problems and to the patient.
I had the good fortune to find a book about Dr. Thomas McPherson Brown’s treatment, and his strong background in helping arthritis patients with his treatment. At that time, the current book was, “Arthritis Breakthrough,” by Henry Scammell with Dr. Brown’s work. Once I’d read the book, I knew that was the treatment I wanted — not the harmful drugs I’d read about used by most rheumatologists. Since that time, I’ve learned that even some of them now sometimes prescribe minocycline, etc. as dmards, since they have been approved (I understand) for use as a dmard.
I would urge you to gather information from Dr. S in Iowa, driveable and doable if you decide to go there. Dr. S is retired from his general practice, but I understand he may still treat patients with rheumatic diagnoses and/or advise patients and their physicians. If you would like to ask Maz for his contact information, he gladly has helped patients and their physicians with questions and direction. Any number of children were successfully treated, and write-ups by their families were shared in a previous publication that used to be regularly received… before Road Back Foundation went online.
I believe you will find encouragement and guidance from Dr. S who has vast experience with children and adults.
AF
@briannasdaddy wrote:
Thank you everyone for the input/help.
I want to bounce my thinking off of you to ensure I am approaching this correctly.
From my view, the #1 priority is finding someone who will prescribe the antibiotics. Once I accomplish that, regular check ups to monitor the progress AND the side effects (if any). I am not opposed to also continuing seeing a rheumatologist just to monitor joint damage, etc.
Does anyone see any problems with that approach?
I originally saw an MD in downtown Chicago after my first severe flare and petitioned him for antibiotics. He already had an alternative bend and he prescribed the Doxy, albeit somewhat reluctantly. A few months in, I had a very bad flare which caused much worry and anxiety. The MD in Chicago did not instill the confidence I was looking for, and he countered with a big push for me to change protocols to Stratton and/or Wheldon when I was interested in trying traditional old school AP.
I wasn’t comfortable with his lack of experience in AP, nor did I want him to “experiment” on me. And, he was very expensive for what I was getting.
I talked it over with my husband, and I decided to drive to Iowa to see Dr. S. I decided to hold off on IVs (done at the hospital in Ida Grove) and try oral antibiotics first because I was catching the disease early. It was the best decision for me. I did respond well to the Doxy and got to remission.
One thing I had not immediately anticipated was the mental relief that came from the feeling of being in an experienced doctor’s hands with years of patient success stories behind him. That was huge. Sometimes you don’t realize how tense and worried you are until you’re not tense and worried any longer. That’s worth a lot. Worrying about your child has got to be a million times worse.
I’m six years in, on AP, and I’ve had some new joint pain and have been considering whether it’s time to shake up my protocol. (See the Historical Protocol on this site). Dr. S is a phone call or email away. He recommended adding in a different antibiotic, called in my prescription, and I’m to check in with him in October.
Of course, I’ll eventually have to find someone here locally who can take over my prescription, but doesn’t seem insurmountable.
Over the years, I’ve read many stories of people who travel to the most experienced AP doctors across the country. California and Iowa come to mind as two of the top spots.
I’m sure others will chime in. Good luck and do not be deterred!
Sorry for my uninformed questions:
Who is Dr. S (full name)?
Where in Iowa (is this in Ida Grove)?
What hospital is he associated with?
How do I get in touch with him?
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