JRA plus Uveitis

[nikitasahney]

@Suzanne wrote:

@nikitasahney wrote:

Thanks Suzanne for replying in detail. I will stay in touch and maybe ask a zillion questions more……

One question I have is, how often does your daughter have to personally visit the AP doctor. As I will probably be able to come down twice a year and coordinate the rest from here in India. Your reply would help me to work out the economics, whether its cheaper to stay there for some time or to travel to and fro.

Ask away, I’m happy to answer!

She was much younger when she started AP, and the first dr. we traveled to wanted monthly phone calls and would order more frequent labs, which we had done locally and sent the results to him. After he retired, we had to travel even farther but she also already had the history of doing well on AP. We see her current AP dr. twice a year, and in between she sees her ped rheum, ped opth, and pediatrician, so she is well-monitored. Anything adverse as far as AP would have been caught long ago, I can assure you.

Thanks Suzanne….I am in the process of getting the act together to see an AP doc in the US and to plan a trip. My choices are Dr. S in Iowa, Dr. T and Dr B at NY. I am confused to make a decision. And I also feel that since we are coming all the way maybe we should see 2 AP Docs. What do you think and what would you recommend?

Thanks again

[Maz]

@nikitasahney wrote:

I am in the process of getting the act together to see an AP doc in the US and to plan a trip. My choices are Dr. S in Iowa, Dr. T and Dr B at NY. I am confused to make a decision. And I also feel that since we are coming all the way maybe we should see 2 AP Docs. What do you think and what would you recommend?

Hi Nikita,

As far as we are aware, Dr. T in Boston is no longer treating pediatric cases under 15. Your best bets would be Dr. S. in Iowa and Dr. B in NYC, both of whom treat little people. 😉

I know you asked this of Suzanne, so forgive me for sticking my nose in here. Suzanne may also have some alternative AP doc suggestions for you.

[Suzanne]

I replied, but I don’t know where it went!

In addition to making sure your choices will treat a young child at all, I would also speak with the office to make sure they are willing treat a very young child long distance. After you have confirmed they will treat your child, I think in your situation I would want the dr. with the most uveitis experience.

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

[evalon]

Hi Nikita!! Hi Suzanne! Hi Maz!!!! Evalon here…thanks for belated birthday wishes!!!! Yes..Shelby has been on zithromax, amoxicillin and nystatin (for yeast control) since May..she also started on 1 ml daily of prednisone..then September we took it down to half..and then in December to one fourth…….mid January her abx were reduced from 7 days a week to 3 days…no ill effects…and come March we will wean her off the pred completely…..She used to have to see doc (Dr B in NY)…every 4 weeks..tehn every 6 weeks..then every 8…now we saw him in Jan and go back in April! She was indeterminate on some key lyme bands thru igenex….and the doc ran the C4a test when he first saw her (it was over 21,000!!! when 2800 is the max!)…which is an imflammation marker..he repeated the test in September…she’s down to 3200!!! He also did the CD57 test..she scored 63 back in May..we are awaiting new results from the Jan repeat now……We knew she was better as there is no more pain and swelling…..Please, email me and we can talk over the phone….You’re absollutely following the right path…give abx a chance to work…!!!!!!!! Look forward to hearing from you… evalon@aol.com

[Maz]

Evalon, it always brings such a smile to hear how your beautiful Shelby is doing so well! Thanks so much for your updates and WELL DONE, Mom! You moved heaven and earth to find solutions for your baby girl and you are such an inspiration! 🙂

[evalon]

Maz- you are such a beautiful person. I could not have done it without your support and encouragement and wisdom- you and all of the wonderful folks here….made me brave when I was so afraid. It will never be forgotten..and it is a pleasure to pay it forward as newcomers arrive here. ev (yvette)

[nikitasahney]

Just to keep you all updated…..:)

My husband and I have come to an understanding that he will listen to me if I don’t get too emotional about Antibiotic Protocol. He is saying lets analyse both approaches. If I need his support then will have to follow the plan: The Plan is we see Dr. F who is a popular eye doctor in Boston (Reya’s eye doctor here is his student and wants us to see him.) We see a ped rheum Dr W who is is associated with Dr. F. Understand from them what the pros and cons are about the treatment they recommend.

Then we see Dr S in Iowa since he is one of the most well experienced. The idea to meet him is to understand in detail about AP. And see what he recommends.

We will even meet Dr. B and weigh out the comfort levels in terms of relationship established, economics, accomodation, etc will start the treatment. Evalon, I will connect with you to find out if Dr. B will treat long distance. I can convince a pediatrician locally to follow the treatment and monitor my daughter. If required, I can stay in the US for 6 months at a time as our visa permits us to. Once my daughter requires to come more infrequently then I can move back home.

Maz…..please feel free to butt in…..I am more than happy to hear your suggestions.

Our biggest concern are my daughter’s eyes as 18 months ago she had chronic uveitis. We need to get her off methotrexate and need to find a substitute course of treatment that can help her eyes as well.

Suzanne/evalon – I wanted to know if either of your children are on any special diet while following AP.
Do let me know – Thanks

[Suzanne]

@nikitasahney wrote:

Suzanne/evalon – I wanted to know if either of your children are on any special diet while following AP.
Do let me know – Thanks

No special diet. We had her tested for food allergies and it was all negative. I don’t put 100% faith in any testing, because we know dairy makes our other child very sick yet she was also negative for food allergies. (She was dx’d with an intolerance, despite having allergic symptoms such as eczema.) We have never seen a pattern to anything our JRA daughter eats and her symptoms, so we haven’t tried diet changes. She doesn’t eat much meat, but that is just her preference.

If we ever do try a diet, it would be gluten-free. I have seen the most people post positive results from going gluten-free, so I think that would be our choice – once she is old enough to police herself! They share too much food at school, and right now all of my efforts would be wasted by a Goldfish cracker at snack time!

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

[nhoose]

Hello,
I am new to this web-site. I have a daughter who just turned 8. She has had Uveitis for the past 4 years w/ prednisolone eye drops needed daily. Now for the last year has had inflammation in her joints and had the dx in march of JRA. The ped. rheum. protocol is mtx. We DO NOT WANT TO GO DOWN THAT ROAD! I have considered the AP after trying many other alternative therapies (acupuncture, homeopathy, diet, herbs, many different supplements). I am stuck between a rock and a hard place. I cannot believe there is only one JRA Dr in the northeast! DR. B charges $850 for the first visit not including labs etc. We have seen Dr. F from Boston in the past and he recommended mtx if the Uveitis became chronic. Our pediatrician last time we met said she would not prescribe antibiotics but I will see her again next week with hopefully more information and a better approach.
Meanwhile my daughter seems to be getting worse and is starting 2nd grade soon.
Thanks for all your postings as it makes me realize I am not the only one going through all this.
Be well,
Nancy

[Krys]

@nhoose wrote:

Hello,
I am new to this web-site. I have a daughter ….has had Uveitis for the past 4 years w/ prednisolone eye drops needed daily. Now for the last year has had inflammation in her joints and had the dx in march of JRA. ….I have considered the AP after trying many other alternative therapies (acupuncture, homeopathy, diet, herbs, many different supplements). I am stuck between a rock and a hard place.
Nancy

Hi Nancy,
Warm welcome to RBF!
I think you will benefit more if you start your own thread.
Uveitis according to Chinese medicine signifies problems with liver as the eye is at the end of the liver meridian. But as you have already tried acupuncture and it did not help, maybe learning about the connection of uveitis to Ankylosing Spondylitis, of which it is a persistent symptom, will provide you with some missing links. Hopefully Dragon Slayer (John) notices your post and will give you his knowledgeable input. You can search his posts, and within them you can search “uveitis”. You will find a lot there. You may go to John’s web site http://www.kickas.org/ and check on the connection of uveitis to Ankylosing Spondylitis.
You may also find some good info on htp://gapsdiet.com/ on how leaky gut and undesirable gut bacteria are responsible for a multitude of symptoms and how it can be reversed. After reading this site a lot of things just start making sense.

I hope you find AP physician close to you (you may request a list of AP docs) and that your daughter will start her road back to recovery asap.

I’ve had uveitis for 2 years now and AP has greatly diminished it (my eye is barely yellow now, never red any more). I’ve been taking last 2,5 months Stephania Tetrandra specific for eye problems (with Lyme disease), Vinpocetine 10mg, Vit.C (effervecent salts) and Zinc, 40 mg. But that is an additional protocol (additional to core herbal protocol for Lyme and AP) for ocular Lyme manifestations and even though the dosage is mentioned, it was given for grown ups. I have no idea if those herbs / supplements would be useful on their own for uveitis unrelated to Lyme. I’m mentioning them just in case you come up in your research that they may be helpful, too and an AP doc that will treat your daughter will OK the additional usage of any of them.
I keep my fingers crossed that you find a solution that will completely heal your daughter. Warm wishes, Krys

[A Friend]

nikitasahney

I developed sudden-onset uveitis about 1999, and had been doing much research in connection with Dr. Brown’s work, and the updates to his books with controlled studies since Dr. Brown’s original Road Back book. Fortunately, at the time of onset, I already was aware of probably the most outstanding ophthalmologist in the country, as far as safe treatment for children with JRA and Uveitis, as well as for adults. In fact, this ophthalmologist (now deceased from a sudden aneurysm) was head of the Uveitis Department and one of the research departments, this work and his practice connected with Harkness Eye Center/Columbia Presbyterian Hospital in New York City. Dr. Emil Wirostko was his name, and if you do searches on the internet about his research, you will not only find scientific findings by him, but along with two of his grown children who are also ophthalmologists — both of which are now involved in medical research.

When I saw Dr. W in his office in NJ (thought that was easier than accessing the NYC office), this lovely man shared with me that his dream was to be able to get enough research together to solve these problems. I’d call him a real champion for children with JRA and Uveitis, and adults as well. He was a real advocate of Dr. Brown’s work, and spoke at one of the regional conferences conducted in Los Angeles, just prior to the period of time when I first developed Uveitis. A local retinal specialist told me he wouldn’t treat me if I didn’t take a couple of medications from a local rheumatologist (medicines that I’d learned enough about to be frightened of … especially with my eyes involved. It felt like I was: “damned if I do, and damned if I don’t.” Anyway, Dr. W said immediately after he had re-run the tests in his office that he wanted me off of the two drugs, he put me on his preferred program for me, and told me to keep taking AP; and a very fine local ophthalmologist told me he would be happy to follow my eye condition for Dr. W, and would consider it a privilege to learn from someone of his stature.

The above is not trying to convince you or your family of anything. It is to report, as straight-forward as I can, what happened when my then-AP-local doctor thought my question/suggestion about seeing Dr. W for a 2nd opinion was a good idea. It turned out to be a great idea for me. The inflammation decreased and I (knock on wood!) have not had a recurrence of that problem.

I’m surprised that you didn’t find uveitis information doing a search on the site. Don’t search on the window under this Discussion Topic, but go to General Discussion, and then type in Uveitis and/or JRA in the window next to it. I’m hoping some posts will show up. If not, I’m sure I can find some old files on my PC to share with you.

[lynnie_sydney]

AF is correct – there are 9 pages of past posts for uveitis and 29 for JRA. Just go back to the General Discussion front page where all the topics are listed and use the search box there. If you do it from this page, only this thread’s posts will come up. 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)

[Author]

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