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Hi everyone. My daughter is 17 with JRA and has had major problems. Her major problem right now is nausea, diarrhea, and just not feeling well. She started Mino 100 mg twice daily every day 2 months ago, but can only take the medicine once a day as it makes her so sick. To be honest, she has only started it once daily every day recently because it makes her so sick. She had major stomach issues before starting this. She is also on Enbrel about every 2 weeks. Please help me know what to ask for when I take her to the doc. She has had upper GI with small bowel follow through, ultrasound, and endoscopy. they really did not show anything and doc said it could be yeast but that is about as far as it went. It is really bringing her down and making life so difficult for her. Im confused about everything I need to ask for, so any suggestions would be greatly appreciated. What do I need to ask for as far as tests to see how her RA is doing and also what tests for yeast, leaky gut, etc. Thanks in advance.
She might be better going onto a pluse dosing regime – ie. MWF. Do you have an AP doc to consult? L-Glutamine is great for healing the gut. A good probiotic twice a day is essential for those on an AP regime. However, that wont heal an already leaky gut, just help to replace the intestinal flora. You might also want to consult a good naturopath who uses electro-magnetic testing (eg with a VEGA machine) for food sensitivities and who could suggest an appropriate diet for your daughter. This may not only help to heal her gut but to address her joint pain. A really good website for learning alot about food sensivities is http://www.fedupwithfoodadditives.info I hope your daughter finds some relief soon. 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)[user=176]my3girls[/user] wrote:
What do I need to ask for as far as tests to see how her RA is doing and also what tests for yeast, leaky gut, etc.
Hi My3girls,
The tests that RBF suggests while on AP are outlined at this link, under the Education tab. You can click on this link, which is found by going to Education, then Physician's Packet, then Historical Protocol. It's near the end of the Historical Protocol page, along with lots of other great info that may help your daughter. In addition to these recommended tests, there is a newer test, called anti-CCP, which is now considered more specific to RA….not sure if they use this for JRA?
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638
You might also find this website interesting for candida and gut issues testing:
Do hope your daughter feels some relief very soon. As AP is a long term therapy, it may take some time for her to notice improvements in her JRA symptoms. The New Arthritis Breakthrough, by Henry Scammell is invaluable while on AP, explaining what to expect and all about the infectious mechanism of rheumatoid disease.
Hope this helps. As a Mom it must be a very concerning time for you, but hang in there. AP has done wonders for so many with RA and it just takes a lot of patience…easy to say and harder to do, especially where our children are concerned. My RA started very swiftly and severely last year…every joint affected and unable to move. I've been on abx only for the past 17 months and I'm at about the 85-90% improved mark. 🙂
Peace, Maz
M adult daughter started minocin at too high a dosage, daily. It made her so sick she could not continue. When she switched to 100mg a day, MWF, she had amazingly fast improvement of her RA symptoms. Two years later she continues this dosage and is very well.
Hi, my3girls:
I'm sorry that your daughter is going through this right now, but I don't understand a 17 year old with RA, although this is possible.
In fact, if there are digestive symptoms unrelated to drugs there could be something besides JRA going on in a person this young.
I would have the HLA B27 antigen status tested, instead of the mannitol/lactulose test for leaky gut. If she has AS instead of RA LGS is an absolute; the only difference between a genetically susceptible person with AS and another without AS is the status of the intestinal tract. And, IBS is common in AS an other similar ReAs (reactive arthritides).
The Enbrel is good, but it is important that other therapies be used in conjunction with this, especially those which could help extend the useful lifetime of this drug.
In another post, I described the “spittle test” for fungus, but this and LGS are just as easy to treat for as to diagnose.
A really good book to learn about how to treat candidiasis and arthritis in general is “Arthritis: An Alternative Medicine Definitive Guide,” by Zampieron, et al. THE BOOK, if she is B27 positive and for anyone with AS, is “The New IBS Low-Starch Diet,” by Carol Sinclair with foreword by Professor Alan Ebringer (available in UK edition only).
Best to You, and good luck to your daughter,
JohnYou will get diarrhea whilst on abx if you do not have enough probiotic in your system.
Many of us only take the Mino once a day anyway. I take the whole 200mg daily in one go. Lynns idea to drop back to pulsing might be a better idea, unless she feels she needs it daily like I do. Many of us need to do it gradually. Not easy when you are just starting. Eating some small thing also might help even though they prefer you not to. You just have to do what ever you need to do to get it down.
Did he give her something for the yeast? That definitely needs treating. She also needs to be on a systemic antifungal to get rid of the fungus from the abx. It could be causing the probem. It is a must or she will not be able to continue with the treatment down the track.
It would be a good idea go keep her off yeast products until you sort it out. I stay off them all the time. Cook her some boiled rice which has been soaked overnight and make sure you wash all the starch out of it. Don't over cook it. Eaten with some slithered almonds it is quite refreshing. Especially if she is feeling a bit off. I use the rice instead of bread. not everyones choice but it is the starch that is a problem for the RA. Hope this helps her. Just a suggestion.
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