?'s For the Insanely Knowlegable APers here

[pb4ugo]

I began viewing this board many years ago when i first came down with RA. I just happened to be lucky enough that my family doc immediatly put me in Minocin and mobic,  and then sent me to a rheumy. At the time i had no idea how rare it was for a doc to prescribe mino for RA until after my rheumy basically chastised me for using it. Since using methotrexate and other harsh drugs for the past 3-4 years i came to the realization that 1- the drugs were losing their effectiveness. 2- They were destroying my gut. and  3-  I felt better back when i was on the mino for a year and mobic.

          So i decided to become dedicated to AP protocol after reading all the knowledgable posts the past 6 months.  Since my family doc has only limited knowledge of the Ap protocol i needed to find one. Thanks to Maz i found a great one here in utah. Dr. R was just what i needed. I am sure as most of you know how great it is to finally here a dr. say we can get rid of this, there is a cause, and we won't stop till we find it,:roll-laugh: instead of you have RA , there's no cure, no treatment, and your an idiot for trying to cure it. :headbang: 

         Sorry about the long winded explanation. Annyway Dr. R prescribed Doxycycline 100mg bid  and flagyl 200mg day. I am wondering when is the best time to take these and with what foods if any.  He also ran tests for food sensativity and put me on a candida cleanse/ diet. He also ran a blood draw for Lyme disease. He also did an electro dermal screening that showed i was reacting to 3 different mycoplasmas, and babesia and something else that had to do with lyme.

Can I take xylitol as a sugar substitute or will that still effect my candida?

Does anyone on this board have experience with Dr. R in utah, that could give me a heads up on his protocol, and how he does things?

Any ways thanks for all the informative posts, and i really appreciate any information i can get.

 

[swollen]

I don't know about the questions you have about your doctor and when to take your antibiotic but I think they say to take them without food, I didn't research it but you can try doing a search at the top of the screen.  I take mine when I remember, usually in the afternoon, I am not very organized with this.  I also want to say that I don't know why rheumi(spelled wrong probably) don't view this treatment as a possibility for RA- like yours chastised you for trying.  Many  who are using the AP treatment are feeling better so how can these doctors ignore this – I don't get it.  Also when I first started reading and finding the road back and the books, I was amazed at the stories of people getting better.  In my own case, I still have some hard days but nothing like it was, couldn't hardly walk down stairs, turn door knobs and I can remember hardly being able to comb my hair. I hope you find your answers here.  

[swollen]

Oh, I forgot to ask in my first reply, what kind of candida cleanse are you doing?  Because once I asked my HMO doctor to prescribe the drug for candida but I was unable to try it and the doctor didn't even test me for it either, just said no she didn't think I needed it.  The only reason I asked her was that I was reading different posts on this web site so if I have – I don't know.  How does one know they have it?

[Kim]

Hi pb4ugo,

Your doctor sure sounds like he's on top of his game, lucky you.  Now, if he's using Igenex Labs for the Lyme testing, you've really landed on your feet. 😉

The general rule is to take the tetras (Mino/Doxy) 2 hrs away from anything else (preferably on an empty stomach unless you have any upset), but mainly avoid anything with calcium because it binds to the abx rendering it less effective.

I also try to avoid all sugar, but use xylitol and stevia with no problems.  It was very surprising to find I too had food sensitivities that were never a problem before I got sick………chicken or the egg, who knows? 😕

Please share the results of your testing when you get them.

Love the picture, you have a lovely family. 🙂

Take care…..kim

[Kim]

[user=546]swollen[/user] wrote:

Oh, I forgot to ask in my first reply, what kind of candida cleanse are you doing?  Because once I asked my HMO doctor to prescribe the drug for candida but I was unable to try it and the doctor didn't even test me for it either, just said no she didn't think I needed it.  The only reason I asked her was that I was reading different posts on this web site so if I have – I don't know.  How does one know they have it?

Hi swollen,

You asked why rheumy's don't “get it” when they refuse to prescribe antibiotics, that's the question we ALL want answered. :headbang:

This link has symptoms for candida: http://www.holistichelp.net/candida.html

It's hard to get rid of once it takes hold, so really worth trying to prevent it in the first place. 😕

Take care…..kim

[Eva Holloway]

Kim,

Dolores told me that she asked a rheumatologist if he would treat her with antibiotics and he told her that she could not do it or they would loose  their certification as a rheumatologist, not the licenses as a doctor but the certification. He send her to an infectiuos(?) decease doctor. But I think they hurting themself because eventually the people have to go someplace else or else………

Eva:D

Eva Holloway

[Maz]

[user=236]Eva Holloway[/user] wrote:

Dolores told me that she asked a rheumatologist if he would treat her with antibiotics and he told her that she could not do it or they would loose  their certification as a rheumatologist, not the licenses as a doctor but the certification. He send her to an infectiuos(?) decease doctor. But I think they hurting themself because eventually the people have to go someplace else or else………

 

Hi Eva,

The irony is that this shouldn't be the case, because any physician is qualified to prescribe antibiotics and many drugs are used off-label all the time – methotrexate is one of them (originally designed for cancer) and plaquenil is another (originally designed for malaria). Also, the America College of Rheumatology has approved minocycline for off-label use in RA and lists it as a DMARD. 🙂

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

The other side of this is that folk on immune-suppressive drugs are often dealing with opportunistic infections of all kinds and so rheumies must be able to identify and treat such infections, as first responders (before referral to Infectious Disease docs in more complicated cases), because infections just go with the territory when immune function is down. Lyme patients with arthritis manifestations get referred to rheumies who treat CDC positive Lyme patients with a one-month course of doxy all the time – it's often not enough once it's in the joints, but they do prescribe short-courses of antibiotics. A friend of mine here in CT got dx'd with Lyme arthritis by a rheumy and he was actually enlightened enough to also test for babesia, so he treated her for the standard month for both. It wasn't enough and she had to go on to see an LLMD, but he did treat her Lyme arthritis. Rheumies also treat reactive arthritides caused, for instance by chlamydia trachomatis…again, it is a first-line treatment and they don't usually do it longterm, as they move onto other drugs, like mtx, but they will treat arthritides commonly acknowledged to have an infectious cause. They're usually just not in it for the longterm, like some of the AP rheumies on RBF's list. 🙁

With minocycline listed as an ACR DMARD, it sounds as if the rheumy may have been stringing her a bit of a line? I wonder if the rheumy said this to Dolores, if she was asking for combination therapy, because he just didn't believe in longterm therapy for infectious causes? It doesn't make sense, because there are quite a few rheumies who do use combination AP longterm and IVs and it's not like they fly under the radar about it, either…some have websites advertising their philosophies for infectious causes. 😕

I think the trouble is that the political climate is so steeped in prescribed standards of care, which we're now seeing can be warped by medical societies rife with conflicts of interests, that physicians are just too afraid to step out of these standards. They're being targeted, usually by their own peers, which is atrocious. Physicians are qualified to use their clinical judgment in exercising their knowledge to treat their patients according to the hypocratic oath of, “First, do no harm.” Yet, medical societies (who often design treatment guidelines with panels who very often don't actually treat patients) weild so much power today that physicians are running scared. And, these panels are often manned by researchers with their own vested interests to ensure funding for their own research! This article in the Washington Post a few days ago probably says it all:

http://www.washingtonpost.com/wp-dyn/content/article/2010/05/20/AR2010052003038.html

Peace, Maz

 

[pb4ugo]

Thanks for the info. For those of you on flagyl when is the best time to take it and with what foods. I've never taken flagyl before.

[pb4ugo]

The candida cleanse he has me on is a strict no sugar, (not even fruit) no yeast, and no processed flour for phase 1. plus the flagyl and probiotics. Phase 2 i can start adding some fruits back.

[Merla]

[user=2037]pb4ugo[/user] wrote:

Does anyone on this board have experience with Dr. R in utah, that could give me a heads up on his protocol, and how he does things?

 

Hi pb4ugo,

Dr. R is such a great doctor! I'm glad you found him. I've been going to him for about 3 years. He put me back on my feet and I can even say I'm better now. I still take the doxy and an antifungal and I avoid sugar and processed foods. I don't sweeten much of anything but when I do I use stevia. I also use the nasal moisturizer with xylitol every day. I also did the yeast control diet, lyme tests and allergy tests. He is very thorough.

Merla

[Eva Holloway]

Maz,

I know what you are talking about but my rheumy was so against antibiotics even when I had the severe sinus infections and when my pulmonary doctor gave me the Biaxin she almost came undone. To me that was not very professional. If minocylin is down as a last resort why did she not give it to me when I was so sick. She wanted me to go on another DMARD at the time. It just doesn't make sense.

Eva:D

Eva Holloway

[Kim]

[user=236]Eva Holloway[/user] wrote:

Kim,

Dolores told me that she asked a rheumatologist if he would treat her with antibiotics and he told her that she could not do it or they would loose  their certification as a rheumatologist, not the licenses as a doctor but the certification. He send her to an infectiuos(?) decease doctor. But I think they hurting themself because eventually the people have to go someplace else or else………

Eva:D

Eva,

I don't understand this.  It seems to me that every doctor in every specialty would have valid reasons to prescribe antibiotics to a patient for any number of reasons, without being questioned. 

My, then rheumy, refused my request for abx to treat Scleroderma, stating “they don't work.”  There ARE rheumys out there that DO use abx in treatment for rheumatic patients so that part about losing certification doesn't add up.  Maybe something lost in the interpretation, or more likely, a lame excuse from that particular doctor?

This is so frustrating to all of us here that have benefited from antibiotic protocol when all else failed. :headbang:

Take care…….kim

Oh, p.s.  I tried the Udi's gluten free bread the last time I was in Chicago and have to agree………it's good!  Thank you, thank you! :blush:

[Eva Holloway]

Kim,

that could be true, just a lame excuse, but still even my rheumy wouldn't give me antibiotics, that's why I went to see Dr.K.

you are more than welcome about the bread, I hope you enjoyed it. We are going to California in a month and I will take a loaf of bread with me if my sister-in-law can not find it.

Eva:D

Eva Holloway

[Maz]

[user=236]Eva Holloway[/user] wrote:

I know what you are talking about but my rheumy was so against antibiotics even when I had the severe sinus infections and when my pulmonary doctor gave me the Biaxin she almost came undone. To me that was not very professional. If minocylin is down as a last resort why did she not give it to me when I was so sick. She wanted me to go on another DMARD at the time. It just doesn't make sense.

Hi Eva,

Yes, this is very strange and I can't fathom why she was against antibiotics when you were suffering from a sinus infection….unless there was something you were also taking that may have interacted and there would have been a better choice for that infection? I dunno… Nearly “coming undone” in front of a patient is unprofessional. To put a patient on further immune-suppression when they clearly have an infection is not just unprofessional….it's malpractice. 🙁 

Thank goodness you have your head screwed on right, Eva!

Peace, Maz

[A Friend]

[user=40]Kim[/user] wrote:

….I also try to avoid all sugar, but use xylitol and stevia with no problems. …..kim

Kim, All,

An interesting tidbit I read in Dr. Mercola's newsletter this morning, May 25, 2010.  (I posted the link to this whole article and other new information/research findings replying to Spacehoppa) included Mercola's recommendations on sugar substitutes.  The last oriental-sounding one, I had not heard of before, and am curious. 

AF

Dr. M's quotes about these sweeteners:

[*]Use regular stevia in moderation, but avoid stevia-based sweeteners like Truvia and PureVia because they have undergone more processing. My favorites are the liquid stevias that are flavored with English Toffee or French Vanilla.  Remember, in the US it is illegal to advertise stevia as a sweetener so you will need to look for it in the supplement section where it is legal to sell. [/*]
[*]Lo Han is another excellent natural herbal sweetener. [/*]

[Author]

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