S/E of antiboitic therapy? | Arthritis Information

I'm thinking about A/P. Does anyone know if long term antibiotic useage has any long term effects? What about yeast infections associated with antibiotic usage? What about building up a tolerance?

Here's the side effects from the American College of Rheumatology - which they've recently updated. I guess the kevetching about it causeing anorexia must have caused that! LOL

Speak of the woman and there she is..

What do you mean about minocycline causing anorexia? I didn't see anything on the link about that!

Lori

Ok, have to hit reply under the person who asked the question. Got it!

Hyperpigmentation (the supposed blue skin 'smurf' stuff) comes usually after years of being on treatment. Those on lower doses (pulsing MWF) don't usually have that problem. Me, I'd happily be a Smurf if it took the pain away. Your milage may vary. I'll say I'm in sunny LA and haven't turned blue yet and it's almost a year here. Darn! Maybe I'll just change the hair color.

Yeast infections - yep - it's a serious consideration. I forgot my probiotics for 6 weeks and got the yeast infection from hell in that my pain started coming back in my hands and feet. I upped my probiotic dosage and got all right again in about 4 - 6 weeks but...that told me I probably had an underlying yeast infection that really got out of control. What I never realized is that by the time we 'show' a womanly yeast infection we're probably systemic.

Now I'm working on 'healing the gut' and killing off yeast internally with Grapefruit Seed Extract, Oil of Oregano and apple cider vinegar. Supposedly the Aloe Vera I'm on to wean from the protonix also works as an anti-fungal. My AP doc would not give me any more diflucan as there is a heart reaction between that and Zithromax which he added in to kill more of the strep. So, I'm on a lot of antibiotics for now but should get off the Zith when I get to remission.

I'm not understanding the question about tolerance. You mean like the disease overruns the med? From my research, most people who fail AP around the 12 to 18 month mark are those who did not take their probiotics faithfully. The gut is seriously involved in these diseases and more we do to heal it, the better off we are.

To avoid AP failure - I suggest lurking on the Roadback. Seriously, you know what they are? Insurance. When we first get there we think we wandered into some bizarre sci-fi group of RA cultists that speak a completely different language. But after a while, it all starts making sense...and the stuff you read that made no sense now makes sense...and when you need the info...you have it in yourself already. When I forgot my probiotics and 'realized' just how involved my gut was, I knew go back there, run some searches, and figure out what to do to bring AP back on line. I did. It worked and I'm almost past the first failure point.

Next failure point is around year 6 - 7 - I'll go learn about rotating my antibiotics then. See how I know that...because I've seen post after post and know it will apply to me later. :-)

If you mean tolerance like resistance to MRSA or whatever...Minocin is a 3rd? generation tetracycline that's been around since the 60's. The chances that an antibiotic that diables the microbes by interfering with a protein so it can't reproduce is the only one that will save you is infintessimly (spelling) small. I am willing to risk it.

Hugs,

Pip

One of the lists of side effects that keeps getting posted by Anti-APers is pretty scary to look at...and one of the side effects is anorexia. Yeah, riiiight!

Pip

Pip,

I wonder if people are confused about the terms anorexia and anorexia nervosa. I use this as a "trick" question for my coding students.

Anorexia is a term that means "loss of appetite" dx code 783.0 a sign or a symptom
Anorexia nervosa is a mental disorder dx code 307.1

Terms related to Loss of Appetite (anorexia):

Abnormal Taste
Anorexia
Appetite, Loss of
Food Aversion
Poor Appetite

Loss of appetite, medically referred to as anorexia, can be caused by a variety of conditions and diseases. Some of the conditions can be temporary and reversible, such as loss of appetite from the effects of medications. Some of the conditions can be more serious, such as from the effects of underlying cancer. Any persisting loss of appetite should be evaluated by a healthcare professional.

Terms related to Anorexia Nervosa

Anorexia nervosa, commonly referred to simply as anorexia, is one type of eating disorder. More importantly, it is also a psychological disorder. Anorexia is a condition that goes beyond out-of-control dieting. A person with anorexia initially begins dieting to lose weight. Over time, the weight loss becomes a sign of mastery and control. The drive to become thinner is actually secondary to concerns about control and/or fears relating to one's body.

Ah ha! You are right Mary. I was confusing the two. I actually thought they were one in the same. Now I know. Thank you! Phats, first of all, good luck. I plunged into AP headlong and am feeling great. My symptoms aren't as bad as alot of people in here, so early intervention, eh? I feel the same way, I would always wondered why I didn't take charge and get myself prescribed in the right way for my health.

You have to read the two books first, then arm yourself with printouts under www.roadback.org. The doctor's starting protocols are all there, but it depends on your severity. I never needed an IV fusion, started out on way too high of a dosage, then cut down to pulsing. I feel great. It's not forever, but I don't feel SICK anymore. I just wanted some life restored for more than a few hours, its been great.

Good luck, keep us informed. Cathy
Pip-

Your article says Mino therapy is for mild RA. I have severe, does that mean it won't work for me?

PhatsPip-

Let me clarify about the building up tolerance. I have always heard (and taught my patients) that if you take abx too often, etc that you will "build up a tolerance", meaning that you will have to move on to bigger and stronger abx to cure the common ails. Is that a consideration?

JSNM-Thanks for the input. I need to read up more. My Rd is considering it in conjunction w/ Enbrel and Mtx. It may be something different, but he is considering it because I have very frequent infections on Enbrel. Somtimes this makes my head dizzy. I just want the pain to stop

Thanks for everyone's input.

Phats

Mary, thanks for the info - I too was taking it to be the later way.

In that case, it's really common to get stomach upset, bloating, gas etc when starting AP. I guess that for some people that could translate to a lack of appetite. Dr. Brown said that on AP, over time, people tend to have their weight normalize. If you're overweight you'll lose, if you're underweight you'll gain. I've lost about 25 lbs without trying...but have a lot more to go. :-) The key seems to be in the gut flora. Some people get dizzyness. It all usually goes away in the first 2 or 3 months. Also, the first thing to lift is usually any depression and or fatigue.

None of the studies have been done on severe. I AM severe Palindromic and it worked for me. KarinRA is severe RA and it worked for her. Most of the people on the Roadback are severe. I think, for the most part, by the time they find them they've been thru most of the other meds. There is a big difference in the tone of posts on the Roadback and here. We have more 'newer' RA peeps starting out on AP here and most show a dramatic improvement with a lot less 'herxing' than what I saw on the Roadback. Mind you, the Roadback was the only BB I'd ever been on when I was first diagnosed. The idea of herxing scared me to death. Here is a lot more mild. JMHO. So, I'm guessing the common idea that how long you been ill, what meds you were on, determines how well and how fast you get into remission. It can be a hard road...but it's definitely worth it.

Has anybody seen GoGo? She's doing the weaning thing. Last I heard, she's way down on the MTX and going to start weaning the Plaq next. AI has people on biologics and antibiotics but nobody yet has posted on how they intend to start weaning. So...I don't know how that would be done yet.

OK - about the tolerance. What's making you sick (IMO) are cell wall deficient bacteria called mycoplasma. Like strep. Everytime you take an antibiotic in your life you killed the strep that was causing your sore throat. But what nobody realized is that it only got the 'main' part of it - like the DNA strands and/or the little things you saw under the microscope in HS Biology. When the Darkfield microscope was invented and they looked at the strep under that super-dooper microscope, they said, "Whoa...what that?" That was strep 'outposts' that are able to reactivate under the right conditions. And they live in your body in your white blood cells, the very cells that are designed to help you fight off infection. It's kind of like your white blood cells have been co-opted by the enemy.

So...you already have the 'problem' of what happens when you don't completely kill off an infection.

And, no, you won't have to go up to bigger and better antibiotics.

I had the special strep test that told my AP doc that I had a strep myco. Strep is a really hard to kill bugger and responds best to penicillians. Hence the addition of Zithromax as my RF stalled on the way down and my strep titers were heading up. Minocin was taking care of one myco (probably c. pneumonia even tho I tested negative for it) but doing very little for the strep. Maybe that's why I was so severe...co-infections.

Anyway, once you get the microbial load down and hit remission, they start dropping the antibiotics to the least amount necessary to keep you there.

Making sense?

Hugs,

Pip

Phat, I have been on AP a little over a year now and I am doing great!!!!!!! I had been on Remicade, Enbrel, Humira, Orencia, MTX. Arava, and after all of them failing me and also causing me a few problems my rheumy contacted a doc at Mayo who recommended AP - at the time I started AP I had been on Arava, MTX and Pred so maybe that's why it worked so fast for me - In about 8 weeks I noticed an improvement and it has never let up since. I had the herx from hell at around 3 months and after tweaking the mino I have never looked back. At the time I started I was using a cane - and was only working a few hours a week if at all (hubby and I own our own business) but now I work 40 and more hours a week and we actually even went dancing not long ago ( we only danced slow dances but a few months ago I never thought I'd even do that). I take a probiotic and can't tell you how important that is - I have never had a yeast infection. Like all meds it works for some and not others but as far as I am concerned it's been my magic bullet. I am now holding my breath because the Remicade worked great for 18 months and then just quit working so as I get closer to the 18 month mark I am crossing my fingers and saying major prayers that the AP doesn't stop working. I can no longer take most of the traditional meds because of reactions and damages they caused so AP is my only med - I take Provigil for energy and alertness and some nights I take something to help sleep (like melatonin) I haven't had to take Ambien for ages. The AP has improved most everything that goes with RA. I have no skin or teeth discolorations and as far as getting use it - my doc says it's at sucha low dose not to worry about it and so I don't! Sorry this is so long. Hugs and good vibes.Hey Phats,

As an old war horse of RA and having tried everything under the sun here's my thoughts on AP. The most important key is your RA infection based? If so run to AP therapy. As far as severe RA again the key would be how long have you had RA. If you are just DX with RA and they label you severe then you are still in the early stages of the disease.

My RA was not infection based and when I tried AP in the early 90's it did not help me.

My RA was triggered by many stresses and a tramatic fall which injuried my spine and my RA started fierce and never stopped.

Any drug you take long term is going to have some kind of side effect but that is something the individual has to weigh. There are blood tests that can be run to see if you have certain infection based bugs.

You certainly don't have anything to lose by trying AP but be sure and montior your progress and make sure damage is still not occurring with x-rays. Your instincts will tell if over a certain period of time if AP Therapy is working.

Research, Research, Research :)

Good Luck

LuAnn

LuAnn~

I'm assuming by "infection" based, you mean did I have an infection that started my RA?

That is not the case with me. Mine was brought on when I bought my first house . I had been having minor sx for a couple of years, but nothing like this.

Thanks for the great information! I'm not sure which route he is going to go. All I know is that I'm continually sick w/ Enbrel. In fact, I just started it last week and I already have Strep. Of course, my little one brought it home from daycare, but I'm pretty sure I would be sick no matter what.

Thanks!

Phats

Phats,

It just dawned on me that since you are presently having infection problems due to meds suppressing your immune response that AP might be something to help right now. You should discuss this with your doctor as you have nothing to lose.

LuAnn:)

I think that is his line of thinking. I'm always sick on DMARDS so it is a double edge sword.

Pip~ can you explain more about how you believe the gut is involved?

PhatsOne more question...I think??

Tell me about these probotics? Is this Rx, OTC, what is it and where do you find it?

Phats

Phats - Just curious, how long have you had RA? How many different drugs have you been on for it? Do you have any joint damage?

LuAnn - I am curious about your forum name StemCell4Me. Is this something that you havve done to treat your RA? It seems I read somewhere about using stem cells to treat Severe RA...

There is so much to learn!

Lori

Ok, I can't prove this. I'm only hodge-podging a lot ofdifferent research together but...it looks to me like when we get sick it's multi-factor, a whole bunch of things happening at the same time that kind of brings the body down. The biggest link I've found is that it looks like things that were in the stomach and supposed to be killed by stomach acid and harmlessly expelled by the body manage to get into the blood stream.

An example would be h. pylori. That's the microbe implicated in ulcers. Yet, this thing that supposedly can live in only an acid environment, has been found in some of the heart plaque for those with heart disease. How did it get out of the stomach?

We've all heard stories about what's in our food and if we knew...we'd never eat again. Well, it's true. Our food is loaded with parasites, and microbes and all kind of things because, technically, it's dead and has been sitting on shelves in the store and they can load it with all kinds of pestacides, but, decay is still going on...

Also, if we actually pull our own charts and records - we're almost all of us - chronically low on essential minerals and vitamins. OK, no matter how bad our diet is, we (at least in America with added vitamins and nutrients to even junk food) are taking in these vitamins and nutrients but they are not getting to the cells. Instead, we're just expelling it with the rest of the junk. We can take vitamins til the cows come home - but if we're not processing our food right, what makes us think we're processing a vitamin capsule right?

Anyway, we process most of our vitamins and minerals in the stomach. I've seen stats saying as much as 75% of our immunity is in the gut. So, we eat our broccolic but...don't have enough good gut bacteria to process it...and the broccoli is expelled without taking the needed vitamin K out because...we didn't have enough good gut bacteria to process it. It's a vicious cycle.

Also, it seems these things called macrophages in the stomach help us defend against foreign invaders. No good macrophages...no defense against microbes running amok. I'm nowhere near figuring out how to build more of these....yet. :-)

Phats - Dr. Brown said that most of the things that got us sick were things we had in childhood. I had strep multiple times as a child and would pray every year that they yank my tonsils but they never did. I consider myself lucky as hell because of that tooth infection that I tied in my own head as being the inciting incident in starting this disease process. Because it happened so close to the onset...I thought it was the trigger. It really wasn't. It's more like the strep was there, hanging out in my mouth, and lying in wait for a way to come back. And, combined with poor diet, no good gut bacteria (I'd been on 3 Zith packs with no doc telling me to take probiotics), stress to the Nth degree (roiling stomach acid) and WHAM - PRA!

If you're constantly getting strep...then you have the strep myco. Can't NOT have it. So, I truly think AP will work for you. The thing you have to understand it...as you kill off the myco's the strep will reactivate under AP too. It did for me. And my c.pneumonia did too. Got a case of walking pneumonia around my 6th month I was sure my local rheumy was going to try to pull me off the Minocin by calling it 'Minocin-Induced-Pneumonitis". But, my research convinced me it was only a 'herx' and I wanted to kill off any buggers able to reactivate. My intention was to reduce my Minocin dose and cough my lungs out until the herx went away. Instead, both AP and regular rheumy said "Zithromax" - took a course - and then back on the Mino. Phewww! No problems since because I took out a huge batch of the buggers then.

AP works by lowering the microbial load enough so that your body can help maintain balance.

Probiotics are available at most stores. I use Solaray Multidophilus 12 from the refrigerated section of Whole Foods because for some reason, that thing works best for my body. It doesn't have to be that. Look for as many live cultures as possible and as many strains as possible. Whole Foods pushes Jarrow with FOS - but it did nothing for me...and you can tell when its working right. Ah...you become regular. You'll get gassy, bloating etc. as the probiotics start doing their job. Start with one cap a day and slowly work up. I take 4 caps a day now and it really works. There was a traditional meds person here on AI who started and posted that it really worked for her. The links are there...we have to take them.

Hugs,

Pip

Phats - don't forget the fizzle baths, it's the best part. I fizzled on Sunday - took about 20 minutes in the tub, and I suddenly had both feet and hands just humming. Never had this reaction before and could not see anything, but something was going on. :) Cathy
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