Infection driven? | Arthritis Information

After reading many posts from people on AP, I'm curious what made you go that route? Was there something in your bloodwork, or did you just dislike the traditional methods of dealing with RA?3 weeks after having an absessed tooth pulled I went back to the periodontist and said "what did you do to me?" He said "not me" and sent me for a CAT scan of my salivary glands. CAT scan dude said "not a fish bone, come back and see me if you have any more autoimmune responses." I'm like "???". 6 months later I'm in the ER with an 'attack' that 2 shots of morphine didn't touch. The rest is history.

At that time, there were no PRA people doing AP. I felt I was stepping off a cliff. But I knew it was infection because of how I felt. I now don't believe in the 'autoimmune' theory at all. It's all infection driven - I just lucked out in that mine was close enough to the onset for me to tie it together.

Pip

Edited to change word to 'responses' because that's really what he said and I thought I typed that.

Edited again to change 'if' to 'of'.

Pip!2008-03-08 09:44:37

TheLa - before I was diagnosed after a horrific process of plain medical incompetence, I was begging to try a long term course of antibiotics as I noticed I always felt incredibly better for a time after a small course of ABX for say a sinus infection. No MD would do it as my WBC showed no infection.

I was abruptly diagnosed 6/6/6 :) and put on MTX, folic acid, Predisone, no other choices, and a pamphlet to the American Arthritis Foundation and shoved out the door, no discussion. It took about 8 months before I found this Board. After reading of failure after failure in here of conventional RA treatments and reading about the Road Back organization after Pip! and Go-Go and the others in here who kept offering it up as an alternative, my great new family practitioner visited the site, and said heck yes. She goes, you are 51, in pain, suffering, and why not? The diagnosing rheumy pitched a fit, so I fired him. I am doing great. I am now off the MTX, predisone and plaquenil, and I now realized how sick I was on those medications. The fired rheumy told me I would be on MTX the rest of my life and never offered me any other choices, which I knew from this Board is not true. The end :) CathyPip and justsaynoemore- even with Thyroid problems you don't believe in the connection? Did either one of you have any damage in Xrays? I might have some already, so I don't want to mess around.

I am actually feeling awesome right now (I know things can change) I tolerate all meds well. I don't have any plans to change, but I like to be as educated as possible.

TheLa2008-03-08 09:56:26

TheLa - Hashimoto's is a localized thryoid autoimmune disease - RA, etc. are systemic. I use the word "canary" for thyroid problems - it's a sign of what's to come. The sad part is the fight between endos and rheumies over our body parts and not working together for the patient. I am deeply suspicious that if I had been on antibiotics, I wouldn't have had a total thyroidectomy nor an infected, inflammed gall bladder removed. And everybody is different, if it's working for you, keep at it. Cathy

Also, there is a lot of research showing mycoplasmic infection of the HPA axis (thyroid) starting the whole process. Which came first? The chicken or the egg?

I have no damage. JSNM has damage from collapsed discs (OA?) and that's also been linked to mycoplasmic infection and is usually treated with doxy or minocycline too.

You might do some searching here and at Google. Being on these meds (biologics) do not mean it's not going to progress. It happens all the time. The question becomes, what can you do to maintain on the first line drugs longer? Will AP work after everything else has failed, yes, but it's a MUCH longer and harder road back to health. I figured I'd risk damage in the beginning rather than more damage later. It's a crap shoot.

That being said - there are people who've made it 25 years on AP. I intend to make it 40+. Unless I can get my cure.

:-)

Pip

No, I believe there is only one cause - microbes. Some microbes are nanobacteria, some are mycoplasma, some are parasites. Either way the body reaches a threshold and cannot fight back. Hence - 'insert disease name' here. Could be RA. Or Lupus. Or diabetes. Period. Just your weakest gene kicks on and that's what you get.

But are you asking about 'factors'? Yes, I believe multiple factors get these diseases running ramphant. Stress, Poor diet. Bad gut flora. Hormone issues. All are factors in your body not being able to fight back. Prior to that the microbes were held in check. Personally, I think it's 'gut related' but I know others that think it's 'HPA axis' started. LOL Now we're back to the chicken and the egg.

If you're asking if I think some of this is 'autoimmune' - no I do not. Infection theory was THE theory prior to the developement of cortisone.

And they don't have to 'cure' us if it's our bodies out of whack. If enough people are 'infection' then they'd be DEMANDING a cure.

Hence the people that think Minocin is 'immunomodulatory'. Give me a break. It's an antibiotic and it's killing something. Something that's implicated in starting the inflammatory process.

Yet...reactive arthritis and Lyme are 'treatable' and the rest is your body going 'haywire'.

Again, give me a break!

Pip who is off the soapbox now!

Hmmm... I had Hashimoto's for 3 years before RA. I also have 4 nodules on my thyroid. I personally didn't have any health issues pertaining to infection before the onset of either. It's all very interesting. Do they have any test that can show a link?I think I'll start a thread for people who firmly disagree with AP. I'm curious what their reasons would be.You could have had strep throat as a child, or have been infected with chlamydia pneumonia, or something else, and have had a slow burning mycoplasma infection from it:

"Today, over 100 documented species of mycoplasmas have been recorded to cause various diseases in humans, animals, and plants. Mycoplasma pneumonia as well as at least 7 other mycoplasma species have now been linked as a direct cause or significant co-factor to many chronic diseases including, rheumatoid arthritis, Alzheimer's, multiple sclerosis, fibromyalgia, chronic fatigue, diabetes, Crohn's Disease, ALS, nongonoccal urethritis, asthma, lupus, infertility, AIDS and certain cancers and leukemia, just to name a few.(1-6) In 1997, the National Center for Infectious Diseases, Centers for Disease Control and Prevention's journal, Emerging Infectious Diseases, published the article, Mycoplasmas: Sophisticated, Reemerging, and Burdened by Their Notoriety, by Drs. Baseman and Tully who stated:

"Nonetheless, mycoplasmas by themselves can cause acute and chronic diseases at multiple sites with wide-ranging complications and have been implicated as cofactors in disease. Recently, mycoplasmas have been linked as a cofactor to AIDS pathogenesis and to malignant transformation, chromosomal aberrations, the Gulf War Syndrome, and other unexplained and complex illnesses, including chronic fatigue syndrome, Crohn's disease, and various arthritides."

From Mycoplasmas: Stealth PathogensTheLa, maybe instead of starting such a thread you could first do a search on old AP threads on this forum because that debate has certainly been ongoing! I don't know if there's a lot new for people to say. So would I! LOL I'm sure some will say 'damage' but again, look at the posts here and see how many still got damage even tho they were on biologics. The posts don't lie.

We have a standard joke. "They take a vial of blood and you hope one of the beasties swims in". The tests for this are garbage. Just like the diagnostics tests for RA. Look how many of us are seronegative.

I tested positive for strep - and negative for c. pneumonia. Which I know I have as I had atypical pneumonia multiple times prior to PRA. Some AP docs say 'just start AP' as you know something is wrong. The earlier the starting of AP the MUCH greater chance of getting the 'cure'. Of course, worst case scenario, you're on 6 pills a week for the rest of your life and off just about everything else except the probiotics.

JMHO - don't let anybody take out your thyroid without starting AP first. You may be able to save it. JSNM says pretty much the same thing.

Pip

P.S. Happy Birthday, Cathy!

P.S.S. AP docs have tests they can run. It goes to specialized labs. I think you can't be on any meds but definately no antibiotics.

Pip!2008-03-08 10:48:00Happy Birthday, Cathy? This calls for a NEW THREAD!Yes, it does but it's not until tomorrow! If you get here before me...

Hugs,

Pip

Well Sorry I did start the thread before your post. If it's going to bother you don't look.Now you tell me...well, I already started the thread and I'm keepin' it!It's not going to bother me....and you're perfectly free to post whatever you want. We do get visited by one or two diehard AP haters who like to spread misinformation, though, but I'm sure you can sort that out (it gets kind of tiring posting the same info over and over only to have them completely ignore the facts in favour of their "mantras). In the end you will have to make your own decisions anyway.

Cool-thanks. It does crack me up when people get so fired up though. Can't we all just get along! Tee hee!Really? Are you posting the thread to try and stir up controversy? GoGo hope you don't consider me a AP hater. I tried it and it did not work for me but I always tell people it is worth a try, especially if infection based.

I do question one thing about AP and that is why does the treatment never end? My mind says once you kill the infection what is the purpose of staying on treatment and why when people go off AP the disease returns??? If AP puts the body in a yeast state (acid) then in my thinking that can't be good.

My personal approach is RA is very individualized and it involves mental state (stresses, negative emotions etc.) diet and the last 1/3 of the equation is finding out what set off the RA and finding a treatment that works for the individual. My individual treatment plan put me into NO DRUGS period. My feeling is the best state for my body would be drug free and thats where I got to after 15+ years of trying everything under the sun while the damage was progressing.

Hope this makes sense

Anyone on the RA journey should follow their instincts and do mucho research. One size does not fit all.

LuAnn:)

LuAnn, I don't think of you as an AP hater at all.

I think that the treatment never ends because it's very hard to eradicate all the mycoplasma. Tetracycline antibiotics don't kill mycoplasma, they just make it harder for them to reproduce and slowly "starve" them. Some people do go off all drugs and are okay for up to 5 years or so but by then the remaining mycoplasma have regrouped and come back.

So many people feel great but stay on AP. Many of them are at VERY low doses (like 50mg or even 25mg, 3 times a week).

I think anyone would agree that med free is the best, but you were able to achieve that with a very new experimental procedure most don't have access to. For me, getting off all meds except AP is a goal that is attainable, so that's the one I'm going for.Gimpy-I couldn't tell if you were joking. I had already posted the thread. Like I said just looking for info. Not interested in infighting. Thanks again.hi there, "I for one would love to hear your whole story from RA onset til now.Please consider it. thankssorry my post was meant for stemcell4me.JJ54-who are you referring to?Oh, LuAnn, you're one of our heroes and you know that! LOL

And I agree with your 'thirds' altho in my case it's more 'fifths'. LOL

OK, let me run something by you for input. I don't think it's AP that takes a body acidic so much as it's something that is in a huge percentage of us prior to the onset of the disease of choice. I don't think we'd have gotten sick if the PH wasn't so off balance. Microbes need a hospitable envirnoment to grow - and that's acidic.

What worries me is people on AP and not probiotics. Those people, if they have underlying yeast, will definitely have AP fail because nothing is holding the yeast in check. And they're killing off what minimal defense they have with the antibiotics.

The reason for this thinking is some of the posts Susanita made on AF. They were case studies of people that died of 'rare' conditions on enteracept. I don't remember which biologic that is. Anyway, one was a benign myco that turned deadly. Another were people who died of 'yeast'. So, they had it...and it was suppressed and killed them and nobody caught it in enough time. I wonder how many of the biologics quit because of yeast? Hence my pushing probiotics - it might buy them time. Or at least a fighting chance.

As for the 'why be on AP for life?' - why be on MTX, or Plaq, or a biologic for life. The answer is in the nature of the cell wall deficient bacteria. Kill one phase and the other 2 can reactivate. For more info visit www.sarcinfo.com or www.cpnhelp.org. (I think the last one is org). They have pictures!

Pip

sorry,it was for stemcell4meP.S. LuAnn - what's your link to your story again?

P.S.S. GoGo - 2 years to regroup. Only one post I've seen so far is somebody relapsing at 5 years post AP.

Pip, I stand corrected. I think I was just hoping for all those people they got 5 good years.

But THERE IS Diana Mirkin: AP cured and off drugs for what? 18 years or something?

Lot of docs become AP docs when they're curing a family member. I guess, until they get there, they don't really look at the possibities.

I'm getting to 5 years - someday. First have to get remission!

Pip

Don't you think the basis for the body supporting infectious environment is diet?

"Our body is made up of many atomic elements. Except for accidents, all the repair and regeneration of our body must come from within. The body is out of balance when the blood stream cells, tissues, organs, glands and the rest of the body do not contain these elements in proper proportion or are deficient. The results is a condition that is just plain poisonous. It is called toxemia." Hence the inportance of diet.

So very had to do but change of diet always helps. If anyone is looking for a marked improvement in the way they feel, I recommend Juicing. A wonderful book is "Fresh vegetable and fruit juices" by N.W. Walker

As far as my stem cell journey, I chose that as I had run out of options. I feel the negative of the procedure was the CHEMO. In fact, I wish science would come up with something a little less brutal than CHEMO. My personal choice would be Hydrogen Peroxide, dream on hehe.....

My story is www.caringbridge.org

insert site name - LuAnn

LuAnn -

Chicken vs. egg. Something like 61% of all people have myco's but not all of them are sick. So...something tipped over the apple cart. I think more leaky guy than diet because while an acidic environment gives them a place to 'live' - how did they get out of the gut in the first place? Plus, that HPA axis thing I've been studying - myco femantes (spelling) AMPS the cellular changes with hormones etc. It's like it sends out a signal to make everything 'badder'.

I hate these things. Seriously - they're smarter than we are!

Pip