daughter with JRA

[John S]

My three year old daughter has come down with JRA. They have had her on Methotrexate for a month.

I have read Dr. Brown’s book and I have been trying to find a physician on Long Island who will do his treatment, but so far havne’t located one. How do I find a physician to do his treatment. I left my name and number with the foundation’s answering machine and have received no reply.

Thanks

[lynnie_sydney]

John – I am so very sorry to hear about your daughter, it must be heart breaking for you.One of the U.S. Volunteers will send you information on doctors. Also, a long time poster on this Forum, Suzanne, has a young daughter with JRA. I am sure she will be able to give you the benefit of her wisdom once she sees your post. Welcome and so very sorry that you had to seek us out. 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)

[Maz]

@John S wrote:

My three year old daughter has come down with JRA. They have had her on Methotrexate for a month.

I have read Dr. Brown’s book and I have been trying to find a physician on Long Island who will do his treatment, but so far havne’t located one. How do I find a physician to do his treatment. I left my name and number with the foundation’s answering machine and have received no reply.

Thanks

Hi John,

No worries, Cheryl Ferguson will get your message on the machine and will return your call as soon as she can get to it. She works full-time as well as heading up the foundation, but she is wonderful and you can be sure she will call you. 🙂

I have been in touch with another Mom of a toddler with JRA in southwestern, CT, and we worked hard to find her a physician to help with antibiotic therapy. Ultimately, we found a great doc in Rhinebeck, NY, with whom she is very pleased. He has a lot of pediatric experience and believes in infectious causes for rheumatoid and other chronic illnesses and is treating her child with antibiotic therapy. I’ll send you a private message with his contact info. To retrieve it, just click above where it will say in brackets (1 new message).

[Suzanne]

Hi John, I’m sorry you had to find us and hope your daughter is doing better soon. Hopefully it is getting easier to find an AP dr. for a young child (it really isn’t even easy to find a traditional ped rheum, is it?) My daughter was also on mtx at age three, so we have a bit of experience with that, too. Take care.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[John S]

Thanks for the information.

I tried to reply to your message Maz, but it said that I wasn’t here long enough for that privilege. Yes, please send me a list of the doctors.

I am trying to get my wife to read Dr. Brown’s book. She thinks the Methotrexate is working. I am trying to tell her that it may be temporarily masking the problem and really just making things worse.

It might be some time before I can get her to try this. I hope my daughter doesn’t suffer because of it.

I have Chronic Lyme, so I am an easy believer, for antibiotics work for me.

Thanks for all the replies.

[MINOCINMAN]

Hi John:

Very sorry for the diagnosis in such a small child. Please also stress to the wife, which i gather you have, the side effects of M can be very very serious, especially i would gather in someone at this age. You will also have to discuss same very carefully with the Doctor regarding AP. I am new to this forum, about a year, so i do not have enough background to comment for sure on either drug. I only know that Methotrexate does have very serious for adults, so i am sure this wiould apply to children using same.

I will pray for her. 🙂

ote=”John S”]Thanks for the information.

I tried to reply to your message Maz, but it said that I wasn’t here long enough for that privilege. Yes, please send me a list of the doctors.

I am trying to get my wife to read Dr. Brown’s book. She thinks the Methotrexate is working. I am trying to tell her that it may be temporarily masking the problem and really just making things worse.

It might be some time before I can get her to try this. I hope my daughter doesn’t suffer because of it.

I have Chronic Lyme, so I am an easy believer, for antibiotics work for me.

Thanks for all the replies.[/quote]

[MINOCINMAN]

@MINOCINMAN wrote:

Hi John:
When I stated M in prior post, I was referring to Methotrexate, as opposed to Minocin. Good luck.

Very sorry for the diagnosis in such a small child. Please also stress to the wife, which i gather you have, the side effects of M can be very very serious, especially i would gather in someone at this age. You will also have to discuss same very carefully with the Doctor regarding AP. I am new to this forum, about a year, so i do not have enough background to comment for sure on either drug. I only know that Methotrexate does have very serious for adults, so i am sure this wiould apply to children using same.

I will pray for her. 🙂

ote=”John S”]Thanks for the information.

I tried to reply to your message Maz, but it said that I wasn’t here long enough for that privilege. Yes, please send me a list of the doctors.

I am trying to get my wife to read Dr. Brown’s book. She thinks the Methotrexate is working. I am trying to tell her that it may be temporarily masking the problem and really just making things worse.

It might be some time before I can get her to try this. I hope my daughter doesn’t suffer because of it.

I have Chronic Lyme, so I am an easy believer, for antibiotics work for me.

Thanks for all the replies.

[/quote]

[evalon]

Hi!!! I am one of the Moms with a toddler with JRA (aka LYME!)!!! Hi Maz!!!! Hi Suzanne!!! Sorry we haven;t been on,….as MOST of you know..once they get BETTER we don’t come around much..too busy enjoying what we have back! We visited 13 doctors before we found the doc in Rhinebeck…and he told us what we knew from, reading Dr Browns’ book- “she has jra, and whatever the cause..lyme, mycoplasma, candida, etc…the cause is infectious!!!!”…Shelby was unable to even STAND up for a year…now she walks and runs once again….although very slowly….we refused methotrexate and enbrel..but fought for antibiotics and prednisone…(she started on 1 ml a day of pred in May..now is down to a .4 ml..along with zithromax and amoxixillin….She gets better every day! We saw a great pediatrician in Northport LI…he told us about Igenex and got us on the right track (3 rheumies all dismissed lyme as the Quest test “only” showed band 41 as positive!)..Can we still PM people here??? I’m not used to the new board!!! You are welcome to contact me..call me..anytime…..Good for you for finding this board an these spectacular people!!!!!! I DON”T KNOW THAT IT WOULD GHAVE HAD THE COURAGE TO STARE DOWN SO MANY DOCS WITHOUT THE KNOWLEDGE, SUPPORT, KINDNESS AND LOVE SHOWN BYT THIS GROUP!!! Contat me anytime, yvette (evy)

[John S]

I can’t send private messages yet evy, please let me know the name of the doctor in Northport LI.

Thanks.

[evalon]

hi John!!!! send me an email to my aol account and we can talk….. evalon@aol.com the doc in Northport is all holistic… he set us on the course..but wouldn’t do the antibiotics…..did work on diet…but….time was wasted whenm she needed the abx..BUT..he might be a good go between the get a spuse on board…email me …yvette

[Maz]

@John S wrote:

Thanks for the information.

I tried to reply to your message Maz, but it said that I wasn’t here long enough for that privilege. Yes, please send me a list of the doctors.

Hi John,

I’m sorry you haven’t been able to access the private message I sent with the doc contact info. I think I saw your email come in to the apdoctors email, so will send you an email with this info in a moment. Evalon is such a wonderful lady and I know she will share her experience of the Rhinebeck, NY, doc with you who is helping her young one with antibiotic therapy for her JRA.

As Suzanne mentioned, there are not many docs on the list willing to treat pediatric patients, because in essence, we’re asking them to treat beyond the current ACR standards of care. While minocycline is approved by the ACR for RA in adults, no studies have been conducted yet for children, likely because the tetracyclines have not been approved for use in under 8s (due to teeth staining and bone growth issues). However, the docs who will treat pediatric cases usually do believe strongly in infectious causes and will extend themselves to treat with alternative antibiotics that are safe for pediatric use. This is usually one of the main reasons that they “fly under the insurance radar” and will be out-of-pocket. As a chronic Lymie, yourself, you will understand the politics of all this “standard of care” stuff, I’m sure. 😉

We want to ensure that everyone is getting proper access to this new software we’ve just installed and we’re still working out the kinks (Lynnie_Sydney, RBF’s Australian volunteer, is primarily doing the trouble-shooting on this and working hard to resolve tech issues with the webmaster). So, if you post on the thread “Post Technical Issues With New Forum Here” about your inability to access your private messages, she should be able to pass on this message to the webmaster to sort it out. This is the direct link, if you’re having trouble finding it:

viewtopic.php?f=1&t=5232

Again, a warm welcome to you and, if there is anything we can do to support you that is within our ability to do, please let us know.

[lynnie_sydney]

@John S wrote:

Thanks for the information.

I tried to reply to your message Maz, but it said that I wasn’t here long enough for that privilege. .

John – were you registered when you tried to send the PM? If yes, then perhaps you need to set your preferences in the User Control Panel (above left). Board Preferences will give you some boxes to check inc re PM’s. If this isnt the problem, let me know and I will try and figure it out or forward to our webmaster if I cant. If you post in the Technical Issues thread that would be good – so others can read the questions and answers. 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)

[John S]

I was registered

[lynnie_sydney]

@John S wrote:

I was registered

Okay. Have you tried setting the preferences in the User Control panel? 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)

[John S]

It works now.

Thanks.

[Author]

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