@mad1max wrote:

My otherwise very healthy 14 year old daughter was diagnosed with JIA on 5 Feb 2012. She has an RA factor of 118, Anti-CCP of >500, and normal CRP and ESG tests. She also has Raynaulds in her hands. I have a doctor willing to prescribe AT, and because she had an immediate adverse reaction to mino, we have her on Doxy MWF 2X100 daily for the past 5 weeks now. She is also taking Celebrex because she had joint pain in her right hand and both feet. The celebrex helps with the pain, but does nothing to help with the inflamation in her right thumb and index finger which are pretty swollen consistantly.

I am not sure if the Doxy is helping, if she is slight herxing because of the doxy, or if the RA is progressing. I know that for AT to work, inflamation must be kept at a minimum. I hate at this point to introduce a biologic, or MTX, because she is still moving around pretty good – but I would hate to see the RA progress and do joint damage to her hand because of the inflamation.

Any ideas out there as to how long AT takes for JRA, how to keep the swelling under control, and if maybe I should add a second antibiotic like Zithromax?

At this point – I am basically directing her AT therapy, as I do not have an AT Doc here in Tucson Az – and following the Dr. Brown protocol from what I have read in the book and this great forum. Any help/suggestions would be greatly appreciated, and if anyone has a teenage son/daughter who presented with similar symptoms I would love to hear from you…thank you…Max

Hi Max,

A warm welcome to you and glad you found us. We’ve had a few parents of JIAers through here in the past year or so who may see your post and chime in with support.

Have you had a chance to read the Henry Scammell book, The New Arthritis Breakthrough and see the Dr. Brown video listed at the top of this forum? If so, it should help to get some understanding of the rationale for this treatment, which is a very slow therapy. In some cases, folks with early, mild, seronegative disease may be quick responders (within weeks to months), but in most cases, folks normally see some signs of improvement at around the 6 to 8 month mark or longer. Early herxing can go on for several months, too, while in others it may be transient and pass fairly quickly. It’s a very individual thing. Labs may also worsen initially during this time. If you take a look at my Progress Thread (link in sig line) you will see a chart in one of my posts that clearly shows how my labs worsened significantly in the first few months and then began to drop. I had monstrous herxing in the first 3 months due to high doses of abx needed to treat my Lyme-induced RA.

It’s quite important to know that AP will not stop the intermittent flaring that occurs with rheumatic disease, because it is not immune-suppressive. Over times, though, flares should be becoming less frequent, less intense and shorter in duration. Having regular labs drawn can help to decipher some of this.

If a person isn’t seeing any improvements (in labs and/or symptoms) after about the 6-8 month mark, then it is about that time when you might want to consider going back to the drawing board. There are articles on the main site that can help to sift through various things that may be preventing progress:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

http://roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

Do you know what type of reaction your daughter had with minocycline? Was it a strong herx or a hypersensitivity reaction or some type?

There is a pretty good AP doc in Scottsdale, AZ, and one or two others in your state, if you’d like to have a list for further physician options? There is also an experienced AP doc in Iowa who trained under Dr. Brown (although semi-retired, many still travel to see him to begin AP with the 5-day IV clindamycin seriers) with whom your daughter’s prescribing doc can consult or with whom you can consult on her behalf. He is very kind to freely answer emails and phone calls.

My best lay guess, Max, is that if your daughter has a normal SED rate and CRP, this means she has a distinct lack of inflammation with her JIA and it is inflam that tends to cause the damage in RA. Have you had these labs drawn again since she began AP (antibiotic protocols)?

Unfortunately, we’re just patients here so can’t really offer advice on dosing or whether or not to use other rheumatologic drugs. This really has to be a personal decision made between patient and physician, but there are many folks here who have been on conventional drugs when starting out on AP who were later able to wean off them as their therapy began to kick in. I think the best fellow patient insight I can offer is to make sure to always read up on every drug before your daughter takes it in order to become familiarized with the up and down sides of each one. AP is relatively benign in comparison to other RA drugs, but in some cases, folks need to function (for school, work, looking after elderly relatives or children) and have no choice but to use another DMARD or a biologic while they wait till things are stabilized and can wean off the other drugs. which is generally the ultimate goal (of one adheres to infectious theory).

At 5 weeks, though, this is still very early days and it could be some months before your daughter notices any tangible improvement. The Dr. Brown video, while dated, is pretty interesting, because he shows bone scans of one of his RA patients over the course of 3 years and it clearly demonstrates the “slow” nature of the therapy to reverse the disease.

Is your daughter also on good quality daily probiotics, spaced at least 2 hours apart from her abx doses? So very important to maintain gut health while on long-term abx.

Hope something here helps and do hope other parents of JIAers will see your post to offer support. 🙂

@mad1max wrote:

The reaction my daughter had with minocycline, came about 15 minutes after taking her first pill – she felt light headed, dizzy, and felt like there might be some swelling in her throat, so taking no chances, we took her to emergency where they gave her benedryl and a course of prednesone. I’m still not sure if it was an allergic reaction, or that she just did not tolerate mino well the first time, and we should have started her off at a lower dose (we started with a 100mg capsule), but she has no problem with the 100mg Doxy so we are staying with Doxy for now – even though I would eventually like to try the Mino again, as I know from reading this forum that mino works better in most cases.

My daughter is on good quality probiotics, as I do understand that AT takes it toll on the stomach. I did get a list of AP doctors in AZ, and actually visited the Doctor in Scottsdale last week, but really did not get a lot of good information from him – kind of just told me to keep doing what I was doing and see how things progressed. I was hoping for a more detailed discussion on AP, dosages, and schedule. He did say that he prefers a daily dose of antibiotics vs. the pulsed method (MWF), but everything i have read says that pulsing is the way to go.

If you can provide me with the contact information for the Dr. in Iowa,- I would appreciate it very much.

Hi Max,

Was it Dr. F, in Scottsdale, that your daughter saw? There are a couple docs in Scottsdale, so just wondering, because Dr. F. is pretty good in terms of figuring out infectious causes, offering dietary advice and employing combination abx. I don’t think he uses IV clindamycin, however.

The dizziness from mino can be an early symptom of this abx until the body adjusts. Some folks get these vestibular symptoms (like car sickness with dizziness and nausea), but they generally pass after a few months. Usually, if a person is allergic to one tetracycline, they are allergic to all in the same class, so as she’s doing okay with doxy, it’s more than likely it was just this early side-effect. One way people get around this is to take their mino in the evening, around 8pm a couple hours after dinner and well before going to bed, so that the dizziness isn’t as much of a problem when asleep. Sometimes, too, folks will get swollen glands in the neck, which can be a result of herxing. One way that can help distinguish between drug side-effects, herxing and an allergic reaction is that esoinophils can be elevated if there is an allergic reaction to a tetracycline:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

“3. A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.”

I don’t know if this info is helpful or not, but it could be (in future) if your daughter isn’t getting as swift a response as you’d like to see or she needs to do an abx rotation (after about 5 years).

In terms of candida prevention, if your daughter can eliminate all sugar from her diet, this will help enormously. Not only is sugar inflammatory, it also feeds yeasts in the gut. This may be quite critical to her success, because of the hormone angle during teen years and these creating an environment that can also promote candida (the BCP is renowned for promoting candida).

I’ll send you a PM (private message) with Dr. S’s contact info. To retrieve this message, just click up top beside your User Control Panel where it will say (1 new message).

@mad1max wrote:

Thanks Maz…yes it was Dr. F in Scottsdale. I did like him and he seemed very conscientious and ask a lot of pertinant questions. He also seemd to belive that RA could be caused by protozoa – and his lab would test for protazoa ($495) not covered by insurance. I’m not sure exactly how that blood test fits in with the AP therapy or if it would change the type of antibiotic used if she tests positive for certain protazoa types – still so much to learn. Dr F. did order some standard blood tests which we will get this week and I do plan to follow up with him.

Max, I had the Protomyxzoa rheumatica labs done and was found to have this bug in my bloodstream, holed up in bio-film. As with most protozoan infections, they should respond to the tetracyclines, plaquenil, azoles, artemisinin, ivermectin, etc. A combination of two or three of these together (I use doxy, artemisinin and ivermectin currently) work even better. Btw, if the new rheumy wants to put your daughter on something else, plaquenil (an anti-malarial – malaria is also a protozoan!) is classed as an RA DMARD and works effectively as an anti-inflammatory. I wonder if Dr. F. was considering seeing how your daughter responded, first, to doxy, as to add too much at once can elicit strong herxing. Have you listened to Dr. F’s radio interview on the topic yet? If not, you’ll find it here at this link (he speaks about 10 mins in):

http://www.blogtalkradio.com/pamcrane/2011/05/19/1-step-blood-test-discovers-protozoa-under-biofilm-structure

http://www.betterhealthguy.com/joomla/blog/243-dr-stephen-fry-on-fl1953

Anyway, we also have an appointment with a Rheumatologist this Wednesday – she is highly regarded and the only one in Tucson who sees children. My wife and I will try to get her on board with AP therapy – although I know that she is not an AP advocate and will most likely want to go the DMARD/Biologic route, since an ultrasound of my daughter’s hands showed significant swelling in some of the joints – though no joint erosion yet. My hope is that we can convice her to help us with the AP therapy, and offer some solutions to keep the swelling down while we continue with the AP therapy, as Dr F, wanted us to know that he was not a practicing Rheumatologist and that it might be advisable to have a rheumatologist for additional advice.

If this rheumy doesn’t work out for you and you would like to consult with an AP-friendly rheumy who is highly experienced in the treatment and sees children, then there is one in Riverside, CA. I’d be happy to also send this doc’s contact info to you. It’s a hike from AZ, but some folks feel it’s worth having a one-stop doc who is both rheumy and experienced in AP.

All the best to you and your daughter in all your decision-making, Max. You must be a great Dad to be going all out to figure out how best to help your girl. 🙂 Please let us know how you get on.

@mad1max wrote:

As a father of a daughter who’s passion is sports, it is so disheartening to see RA rob her of that joy – and of course, i would like to see quick progress – but I have read Scammells book and watched Dr. Brown’s video and read the amazing stories here on the road back so I am aware that AT takes time and that results aren’t immediate.

Hi Max, I just wanted to say that JRA does not have to rob your daughter of anything. We are eight years into this journey, and my daughter ran another 5K Saturday – not something ped rheums at three med schools said would happen; they said she would be in a wheelchair if we didn’t put her on Enbrel. She will never be a gymnast (and neither is anyone else in our family), but she has participated in dance, swim, running, and basketball consistently. She asks to play soccer and take more dance classes, but we can’t fit it all in!

@mad1max wrote:

I am courious as to why you have been on Zithromax and Cipro vs. Doxycycline or tetracycline? Is it because of the age of your daughter? Or some other reason.

So we are going to a ped rheumy tomorrow…my daughter still has a swollen thumb and index finger on right hand and swollen finger on left hand that have been swollen for the better part of two months now ( we have been on Doxy MWF for that duration). We would like to get the swelling down as we continue on with the antibiotic therapy – (Celebrx is not helping with the swelling though it stops the pain) – so we are not sure what the best way ahead will be (Prednesone – MTX – biologic). I read your daughter was on plaquenil – but that it did not help that much. What I would like to ask you is knowing what you know now about your daughters case – what did you find that worked and what would you stay away from. I’m looking for any insight you have that might be helpful to consider as we continue down the road back….best…Max

Yes, it is because of her age that we have never been able to try doxy or mino. When she turned 8, I thought that was the magic number, but they all say it is still too young.

Prednisone made my daughter worse. It is supposed to work so great, but it didn’t for her. When she was first dx’d, no one was using was pred for JRA anymore, they thought Enbrel was the answer; now they are back to using pred as a “bridge” until mtx or Enbrel “kicks in”. You could ask the rheum to try a low dose, as a bridge for now, and also some people consider it a good test to see if it is RA/JRA, by the reponse.

MTX – again made her worse, but the second time we tried it, the AP dr. had said it was an excellent anti-inflammatory at a low dose, low enough that it wasn’t immune-suppressing. When she took 5 mgs (I think that is how it comes, it’s been awhile), she tolerated it fine and it lowered her CRP. When she went to 7.5, she got super sick again. Most ped rheums don’t think that low a dose works, but a big part of me thinks if we left her at 5, it might have helped. She probably weighed around 50 lbs. when she was on 5 mgs.

Plaquenil – I think if you can combo it with mino or doxy, it is a better mix. I see people do well with that.

Sulfasalizine is another DMARD out there, but my daughter is allergic to sulfa.

Biologics – I’ve followed children on other boards ever since my daughter was dx’d. Most have ended up on biologics, some start them right away. I’ve yet to see anything that makes me regret our decisions. Many of those children are in wheelchairs at Disney, on field trips, etc. I see their moms write it all the time. If your child needs a biologic to have a good quality of life, then it is the right choice to make; however, if the decision made out of fear alone, based on The Wheelchair Speech, then you should know there is no guarantee with these diseases no matter what a ped rheum thinks. I would want to give mtx a try before even considering a biologic. You usually take a biologic with mtx anyway.

Good luck tomorrow! You are starting this journey with an older (verbal!) child, which I think gives you a huge advantage. We probably missed some opportunities in the beginning when my daughter could not communicate how she was feeling, etc. We may have stuck with some things too long and others not long enough, it is hard to know.

@mad1max wrote:

Maz, thanks for the info on the labs you did – it is definitely something I will consider doing. I will also listen to Dr. F’s radio interview to get some more insight. From surfing the web, I actually came across Dr. F’s in Riverside Ca web sight and gave his office a call. Unfortunately, they don’t take my insurance – I believe the initial work-up is $3500.00. I hoped to get a phone consultation with Dr F…and would gladly pay for that, but his office never contacted my back after leaving 3 messages. It may be something I look into in the future. However, at my appointment with Dr F in Scottsdale, he did mention to me that the Arthritis Center in Monterray, Mexico had an 80 per cent success rate for rheumatic diseases for inpatients (1 week) at their clinic in mexico. When I googled them at their website – I believe their cost was initially $4500.00 and then just over $240 for required monthly booster shots. Just being new to all this, I’m not sure what their protocol is – have you or anyone else heard of this facility?

Hi Max,

I did a little checking around and found the clinic in Monterrey, Mexico. It seems that this clinic has a similar bent as Dr. F. in Scottsdale, believing that RA is caused by an “amoeba” (a protozoan). This is very similar to the philosophy of the Arthritis Trust folks:

The Center for Advanced Medicine in Monterrey, Mexico:

http://www.arthritiscured.com/index.php

The Arthritis Trust of America:

http://arthritistrust.org/

Both advocate for similar anti-amoeba protocols that also include supportive measures, such as biological dentistry to remove mercury amalgams. The abx pulses described seem to be a little dissimilar, but the Monterrey clinic doesn’t go into much depth on this…just stating that short courses of treatment need to be done every 6 months for “cure.”

I’m always a little leery about when any site says that they have found “the cure.” There is much hope that folks can attain remission, but “cure” is a strong word. Interesting, too, that the clinic in Mexico claims an 80% success rate as this was similar to Brown’s results. I think I’d want to know a bit more about the actual abx protocol being used down in Mexico, so if you discover anything, please do share it with us. If Dr. Fry approves of the Mexican clinic, he must have good reason for this (as his own scientific findings mirror this clinic’s statements) , although I’d be interested to know what the variations are between Dr. F’s protocol and this other clinic’s may be…e.g. as far as I know, Dr. F. advocates for a fat-free diet along with his protocol, but the Mexican clinic makes no mention of special diet. Would also be interesting to compare their protocols to the Arthritis Trust ones.

All in all, I guess it matters little whether a doc or clinic believes it’s an amoeba/protozoan, mycoplasma, or other bug, because many of the anti-microbials used are the same (tetras, macrolides and nitroimidazoles)! It’s really just the doses and pulses that will vary and this can make a huge difference in response for some folks. Some people do better in low, pulsed dosing schedules, some with higher dosing, some in long pulses. I have tried longer pulsing with Lyme protocols (i.e. two weeks on and one week off) and while my labs improved, the hypersensitivity that Brown describes was building and intolerable. What does seem important for most folks is what they do in terms of supportive therapies – detoxification (including things like mercury amalgam removals as mercury and other heavy metals not only produce toxic vapors, but when leaking into the body are said to contribute to bio-film formation and, hence, bug persistence).

Max, if this is any help, at all, while I did have the P. rheumatica labs run through Dr. F’s labs, I’m not sure I would do it again. Although it can provide evidence of infection and it’s kind of neat to receive a digital pic of the bug holed up in biofilm in your blood, it won’t change the protocol that Dr. F. would prescribe. And, other AP doctors are using the same anti-microbials anyway. Personally, I’d save my money for treatments (including supportive treatments). He will tell you that he believes that P. rheumatica – a protozoan – is the primary pathogen that causes inflammatory AI diseases and he may be right, but as his research has not yet been replicated by other researchers and lone researchers are generally reviled by the wider scientific community (no one can make profit on already patented science), as a patient dealing with a long-term chronic illness, I’d keep my money for pursuing the treatment of my choice. It’s kind of like mycoplasma testing. Some folks need it to prove infection for IV clindamycin, but it’s not necessary to know if you have a myco infection to begin treatment. Minocycline is already approved by the American College of Rheumatology as a DMARD for RA.

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

Max, if you do any research on the Mexican clinic and find out anything else can you send let us know? E.g. what is involved with the required monthly booster shots? Are they abx shots? Does the initial outlay of $4500 include all biological dentistry costs as part of their protocol? All sounds very interesting, at any rate.

Thanks for sharing!

PS I lived in Monterrey, Mexico when I was 11/12 and it was a beautiful city back in the early 70s. I was told recently, though, that Monterrey is a little over-run these days with criminal elements. 🙁

@mad1max wrote:

For now we will continue with the Doxy, 2 times per day, MWF and see how she progresses. If there are thoughts as to a better antibiotic, dosage or schedule, or mixture of antibiotics, I would appreciated those insights.

Max, what wonderful news that the ped rheum is supportive of your treatment choice for your daughter! That can often be half the battle!!! If you would pass me her contact info in a PM, I would like to add her to the list as just an “open” ped rheum for local support (not necessarily rxing AP). This could really help others in a similar predicament in your state…i.e. wanting local rheum support for AP treatment rx’d by another doc.

I haven’t gone for local cortisone shots, myself, but understand that one shouldn’t exceed two or three (max) per year, as these can really cause bone destruction, in and of themselves, and may only be temporarily palliative. However, if I’m recalling correctly, Brown used intra-articular shots of abx that also included small amounts of cortisone to reduce inflammation and allow better tissue penetration of the abx, so it may be a helpful short-term measure in some cases. At one stage, I asked my Lyme doc if he’d consider injecting my knees directly with abx, but he was dead against it, saying there would be too much antigen release in the joint that would cause explosive joint degeneration. We didn’t discuss cortisone, at all, because it’s contraindicated for Lyme (just allows proliferation of bugs). It’ll probably be important for your daughter not to risk injury to her affected joints (especially if she plays sports) until she reaches a stable remission state, as this can precipitate flaring in the injured joint, too.

As your daughter has just recently begun doxy and doing okay on her current dosing schedule, it’s not a bad idea to stick with this routine for a bit, because playing “switcheroo” with dosing and adding/subtracting abx too early can really muddy the picture of what is working and what isn’t. Hopefully, within a few months (after cortisone shot effectiveness wears off), she’ll be noticing some improvements in fatigue and general malaise levels that often accompany rheumatic diseases and also some spans of days where her joints feel better. No doubt, if you continue to see Dr. F., he will be watching her progress and will add other complementary abx to her protocol, as needed. I spoke to him at the ILADs Lyme conference in Boston, last Oct, and he was really interested in the fact that my doc had added liposomal artemisin (an herbal anti-malarial) to my protocol and wanted to know how it was working out for me and what herxing I’d experienced, as it is also being used for P. rheumatica by some docs.

It can be a bit of a three step fwd and two step back dance all the way to remission (Brown often quoted 2 to 5 years on average) and fluctuating hormones can play a big part in when women feel more or less disease activity. It’s not uncommon for more joint pain to be experienced when hormones crash at certain points in the monthly cycle (hormones offer some natural anti-inflammatory steroidal protection), so she may notice a pattern evolve with this, too, though teen hormones can be all over the place until adulthood is reached. It’s for this reason that the contraceptive pill and bio-identical hormone therapy can sometimes be a helpful palliative support (to keep hormones level) for some adult women, but critical to be fully aware that the BCP cannot be relied upon for protection from pregnancy while on some classes of abx, including the tetracyclines!

Please stay in touch, Max, and let us know how your daughter gets on or if you have any info to share about this clinic in Mexico. RBF’s physician referral lists are strongly reliant upon patient feedback and only as current as the info volunteers receive from those who see these docs. Thanks and wishing you and your daughter all the best as she begins this journey! Great job, Dad! 🙂