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Hello everyone. Thanks for creating, updating, monitoring and maintaining this forum and foundation. Your comments and personal stories are invaluable to people, and I cannot thank you enough for your time and efforts.
I have a 6 year old son that was diagnosed with JIA several years ago. We were told his JIA was mild and he would likely only need a year or two of consistent treatment and we would be able to ween him off the meds. This hasn’t happened, and recently a new rheumatologist wants to switch his from Enbrel to Humira because he recently started getting some abnormalities with his toes and toenails. This has prompted me to re-evaluate his treatment plan completely and I am seriously considering AP. Now that I know his existing treatment plan won’t cure him these biologics are no longer worth the risk. It’s time to start kicking some ass and that starts with a new plan.
Going back in time and looking over lab results I have noticed he has always had the same labs done (they are always normal), but if I want to get to the root of his problem it seems like there are some tests that are missing. We’ve always gone the more “traditional” medicine route by default, but now that I have found this foundation I want to try the antibiotic route. However I can’t seem to compile a comprehensive list of what ELSE might help us fix our little guy. I have copies of the labs he currently has done regularly and will share all the info with anyone that thinks it useful. Can anyone point me in the direction of a specific list of labs that may help me get to the route of his problem (infection, bacteria, parasite, lyme, etc). For example I know mycoplasma is a possibility but don’t know the name of the test that I need to have done.
We have the strongest and bravest boy and I just know that if I give him the right tools he will beat this. Here’s a link to the Arthritis Foundation’s .pdf for him. Last year he was the Jingle Bell walk / run Honoree for the state of Wisconsin!
http://www.arthritis.org/media/chapters/wis/pdfEventProgram/2010honoreeAidanJBRAppleton.pdf
Sorry for the long post – I’ll keep them short and sweet from now on! Thank you to anyone who sacrifices their time in reading or responding to this.
Wow , what a beautiful face your son has.
Welcome to roadback, I’m sorta new… 6 months ish, so not much advice here, but I love the warmth of this message board, hopefully someone can give you an idea of what to do first, take care:) SheriHello jrphillip and welcome to the Road Back Foundation Discussion Forum though so sorry you’ve had to seek us out. What a cute little guy your son is!
I’m sure that many people will respond to your post but, in the meantime, if you type ‘JRA’ into the search box at the top of the General Discussion front page that lists all topics, alot of previous discussion will come up. Below are two links to discussions on JRA that may interest you. The first is a very inspirational story (always good to start with!) and the second contains alot of good info in response to a Mother’s post re her daughter who is now 10 and who was diagnosed at 18months. The very best to you – you are in a good place here where you will find good information, experience and support. Lynnieviewtopic.php?f=1&t=5412&p=50095&hilit=JRA#p50095
viewtopic.php?f=1&t=5298&p=49152&hilit=JRA#p49152Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Jason,
Your son is adorable. Would you consider traveling to Iowa, to see one of the best AP doctors. He will test for mycoplasm, and other labs. He is a retired MD, who now only treats people who need this treatment. Let me know if you are intrested and I will send you his contact information. I drove over 700 miles from Ky. to see him. I have been there twice, and I am so much better after starting this treatment almost 2 years age. This doctor will consult by phone with your doctor, (IF) you can get your doctor to give your son the treatment. If I can help you in anyway, just ask! Best of luck to you and your son.
JudyWelcome to the Roadback. Trying to find the cause of your boy’s symptoms versus modulating and destroying your son’s immune system is definitely a wise course to take. One area you should explore is Lyme disease testing by Igenex labs.
@jmphilipp wrote:
Can anyone point me in the direction of a specific list of labs that may help me get to the route of his problem (infection, bacteria, parasite, lyme, etc). For example I know mycoplasma is a possibility but don’t know the name of the test that I need to have done.
Hi Jason,
Just adding another warm welcome to the others above…just sorry you had to seek us out. These diseases are cruddy and it’s even worse when it’s a little one who is dealing with something like this. The good news is that we have a few JRA parents here who will hopefully chime in for you with the success their children have had on abx therapy. It’s a longterm therapy, so no overnight miracles, but it is a journey well worth taking.
Just looking at your darling Aidan as he sits in this beautiful meadow – can’t help it but it is screaming “Lyme” to me. Little boys are one of the most at risk for Lyme, as they outdoors frolicking in the woods and grasses. I’m not sure where you’re located or where you’ve visited on vacations, but Lyme is everywhere now. Most people think it’s confined to the northeast corner of the US, where I live, but this just isn’t true and it’s been reported in every state of the US for decades now. In 1975, when Polly Murray first blew the whistle in her town of Lyme, CT, the incidence of JRA in her area was supposedly 100 times that of a normal population! This speaks volumes on why it’s just wise to look into this possibility. You can read some of her story here, in her book, “The Widening Circle,” but another excellent book, now dubbed the new Lyme bible is, “Cure Unknown,” by Pamela Weintraub, who is a medical editor for Discover Magazine. She has two sons and lived in Westchester County, NY state, when the whole family was struck by Lyme….one son was fortunate and tested positive almost immediately, but the other son took years to be diagnosed correctly. The standard tests for Lyme are notoriously inaccurate, missing 50% of cases:
http://www.amazon.com/Widening-Circle-Disease-Pioneer-Tells/dp/0312140681 (click on book to read first few chapters).
As Parisa already mentioned, the labs most commonly used here for Lyme testing are IGeneX labs in CA (http://www.IGeneX.com). One just calls the lab to have them mail a testing kit to your home. The tests need a physician’s signature and results will be returned to the ordering physician. Most docs have no idea how to read the results and a negative test does not necessarily mean the test is negative, if very specific antibody bands for borreliosis show up (can be due to nothing else). These can provide strong clues as to its involvement. The basic western blot test comes in two parts: IgM and IgG (test numbers 188 and 189) and costs around $200. A regular lab can draw the blood (early in week so blood doesn’t degrade in mail) and then will spin and pack it in the packing materials provided in the kit, which are then mailed back to the lab with the forms and check for payment. Results take about 2 to 3 weeks to be returned and getting a hard copy is very important. We have links to help with interpretation of these results when you need them. This basic test does not look for coinfections of Lyme (ticks pass many types of infections), but Lyme doctors will assess and treat for these if a clinical work-up is done and Lyme suspected, so most people don’t bother with the coinfection labs, which are very costly and also not 100% accurate.
Mycoplasma is a common coinfection of Lyme (e.g. mycoplasma fermentens) and there are so many strains of mycoplasma, it’s usually not worth testing for these, as negative results don’t mean much and most of the world’s population will have some strain or another of mycoplasma. The important thing is that abx therapy will cover this corner anyway. Dr. Brown tended to use mycoplasma testing on a regular basis for patients to watch the titers coming down over time, but these are pretty expensive to do repeatedly, today. The lab he used was TARCI and Millie Coker-Vann who worked alongside Brown still heads up this lab. It is the lab that Dr. S. in Iowa uses (Judy mentioned above). If people are seeking IV clindamycin therapy, he will get these labs run to code them for infection for insurance purposes, as this is not considered an approved standard of care in rheumatology (although it was studied in 2006 in UK with good results in a pilot study – http://www.jrheum.com/abstracts/abstracts06/224.html):
If you need a list of physicians open to treating pediatric cases with abx therapy, let us know and we’ll do our best to find one closest to you. Determining if Lyme is in the mix would be a good first step, however, as this would require a different type of physician (called LLMD or Lyme Literate MD).
Jason, I will send you a PM (private message) with the story of a lady who visits here occasionally, Spacehoppa (Ruth), who was diagnosed with JRA as a teen, while living in GA. She is British and lives in UK and was treated with conventional meds for her JRA for 22 years. She got tested for Lyme, started treatment, and within 10 months she was getting normal inflammation numbers. Her story is quite phenomenal and worth the read. Just look to top of page where it will say (1 new message) and click there to open this message to you.
Of course, we are just fellow patients here, so please only take what resonates with you, as a parent. 😉
Btw, here is a recent discussion thread you may also find of interest!
Sorry for the delay in responding – we were at an arthritis event over the weekend called the JAM (Juvenile Arthritis March) at the Mall of America near Minneapolis, MN. It was a lot of fun and a great event. The volunteers at these events give until it hurts. Yet something in my gut tells me this isn’t the best way for these kids to live… somehow there must be a better answer for them.
Thanks so much to those who responded and for the kind words about my son. Every chance I get I rub it in to my wife that he looks like me
hehe. Except those big brown eyes. They are an exact replica of the eyes that managed to melt this otherwise sturdy firefighter before he was born. Now I am powerless against Star Wars purchases and “book-time” as well as “take me out to eat” and “but it was on sale”!I have read and re-read through your posts as they contain so much vital information.
Judy – Thank you for your ideas! Traveling isn’t an issue for me – like you we also have traveled hundreds of miles to speak with “specialists”. I spoke with Dr. S. in Iowa last week and I have 1 week mid March blocked off on my calendar (per his request), but am actively looking for a local physician he can work with so we don’t have to be gone that long.
Lynnie – Thanks for the links. I will be contacting the mom in this thread as soon as I figure out why I can’t send her a PM!
Parissa – Thanks for the lab info. Ingenix looks like an excellent start for us. Aidan was tested for Lyme years ago with a standard test and it wasn’t until I found this board that I knew that test wasn’t comprehensive. I’ll read through the website tonight.
Maz – This information is excellent and exactly what I need to get started. I will call Ingenix tomorrow morning after familiarizing myself with the testing kits and procedures. Thanks also for the thread links. I am soaking up every ounce of information possible.
It’s time for me to turn off the power to myself! My brain is overheated from reading and processing. I have off tomorrow so I should be able to make some real headway tomorrow. Thanks again to everyone.
I will be contacting the mom in this thread as soon as I figure out why I can’t send her a PM!
Have you set your Board Preferences (in User Control Panel above) to allow Private Messages? Meantime, I will send you a test PM and see if you receive it. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Lynnie – Yes, I have the Board Preferences set to allow PM. Also I did receive your message, but am unable to respond or compose any new message. Instead, I receive the following error:
We are sorry, but you are not authorised to use this feature. You may have just registered here and may need to participate more to be able to use this feature.
Should I post this in the tech forum?
Thanks,
JasonJason – this is a bit of a mystery as admin settings are enabled to allow all registered users to send PM’s. I will refer this back to our webmaster and see what we can do – and will revert. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Jason,
Welcome to the RBF. Your son is adorable. I’m heartfelt sorry to hear that he’s not well. Maz took the words right out of my mouth. I have not much else to add, except that I have a child w/Lyme and co-infs., and have been going at it for 10 yrs. He was born w/LD, breastfed (positive breast milk culture for Bb), and was bitten twice, one at the age of 17 months and somewhere around 2 1/2 yrs. old. Diagnosed at 3 yrs. old.
Please PM me and ask away at any questions you need answered. I’ve been through the whole nine yards with pediatric LD.
Eileen
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