I may have found a link to my RA | Arthritis Information

 

I have decided to visit Roadback.org to find out what my other options are. I have read all about the DMARDs and they all seem to have neverending side effects that I'm not sure I want.

I started reading testimonials on the site and one woman had parrot chlymidia which her doc believed had started her RA.

Well, I had two bouts of chylamydia pneumonia just prior to falling ill with this disease. I had no idea that this infection could be a cause.

Does anyone here have birds and may have come down with a bad pneumonia prior to the onset of your RA? This is so interesting.Never had a bird or pneumonia. I use to have a Love bird that died shortly before I was dx'ed.no birds, no pneumonia, no other sickness, nothingno- illness but was extremely stressedNo birds and no pneumonia.  I was a vegetarain, a runner, and had never had serious illness when I was diagnosed with RA. It's being studied:
http://clinicaltrials.gov/ct2/show/NCT00351273?recr=open&cond=%22Arthritis%22&rank=25

"The initial infection that causes reactive arthritis is caused by one of two bacteria: Chlamydia trachomatis, which is usually acquired through sexual contact, or Chlamydia pneumoniae, which can cause respiratory infections. Most people recover fully from the initial flare of arthritis symptoms. However, about 20% of people with reactive arthritis experience long-lasting symptoms. In these individuals, the Chlamydia bacteria exist in a persistent metabolically active state within the joint tissue, even years after the initial exposure. The bacteria produce heat shock proteins (HSPs), which are thought to play a key role in the chronic persistent state of Chlamydia and which may stimulate the immune inflammatory response seen in reactive arthritis. This indicates the need for antimicrobial therapy that can reduce Chlamydia's HSP production and block its metabolism. The purpose of this study is to determine the effectiveness of long-term combination antibiotic therapy in treating people with chronic reactive arthritis. The study will use two different combinations of common antibiotics: doxycycline paired with rifampin and azithromycin paired with rifampin."


The 'inclusion criteria' for the study doesn't mention pneumonia before onset, so the study might be looking more at the trachomatis kind. 
Suzanne2008-08-31 06:44:48Is there a specific test for this type of bacteria?  Is it a blood test?   [QUOTE=patandpaula]Is there a specific test for this type of bacteria?  Is it a blood test?   [/QUOTE]

They tested my daughter's blood for it, yes.  It was negative. But the description in this talks about it being in the tissues, so I don't if that shows up the same in bloodwork?  I guess if this study has a good outcome, we will learn more about screening?


that study is talking about reactive arthritis which is a seperate disease from rheumatoid arthritis [QUOTE=buckeye]that study is talking about reactive arthritis which is a seperate disease from rheumatoid arthritis[/QUOTE]

Doesn't it present the same?  My daughter's JRA did; they treated it as that until they couldn't prove the infection.
never had a bird... never had the illness described prior to DX..

Reactive arthritis is part of the spondylitis family. First, I'm pretty sure you do not have to get c. pneumonia from a bird, you can get it other ways.

Second, of course reactive arthritis is not RA.  But I see no reason why chronic reactive arthritis caused by c. pneumonia couldn't be misdiagnosed as RA. 

Good luck, Lorster!


The first link I posted has a link to this study:
http://www.ncbi.nlm.nih.gov/pubmed/15468362?dopt=Abstract

From the conclusion:
"This is the first study to demonstrate therapeutic benefit with antimicrobials to a chronic inflammatory arthritis possibly secondary to persistent Chlamydia."

Suzanne2008-08-31 10:26:09Interesting study Suzanne.  You get some good ones.Lorster-

This link has a reference to Chlamydia detected in some of a study group.

my daughter drug home two cockatiels and within a year, I had pneumonia twice. My internist determined it to be that from symptoms only so no real proof that is what I actually had. She demanded I get rid of the birds and I did and also cleaned my house, carpets, bedding and had the vent system cleaned. Never had more problems until the joint pain showed up. She treated the infection successfully with doxycycline. She told me that bird droppings get aerosolized when vacuuming. She told me you can get pneumonia from chlamydia as I thought it was a STD. I am going to look at all your links and I do appreciate them. I don't think any of us should stand for a remission. We need a cure. I for one am tired of aches and pains and I don't even have it nearly as bad as some of you. Lori - I am so happy you have found something to pin this on.  I was estactic after I put together my scarlet fever contagion and my RA fallout.  The relief in your mind is huge and healing. Lorster,

This site might be helpful:  www.cpnhelp.org

They have a section full of research articles.
I have 5 birds (3 of them parrots) but have never had phemonia. I knew I'd seen this and searched back until I found it again - I looked up MTCD - Mixed Connective Tissue Disease - for anyone like me who didn't know what it is.I had a bird but never had an infection from the bird that I know of....I have had mycoplasma pneumonia a couple of times, and chronic sinus infections blah, blah, blah. I also have a HUGE family history of RA, so who knows? Well Pip, something occurred to me about this whole situation. I was diagnosed with rheumatic fever at age 8. I took 1 million units of PennVK daily until I was 18 years old. I had to go off when i became pregnant with my first child and I never went back on it. A couple of years after she was born, I started getting the pain in my feet, ankles. I just thought is was because I weighed 148 lbs versus the 113 I had always weighed. I went to college and blamed it on stress of kids and college....there was always a reason. I wish I would have taken notice if the pain/stiffness subsided any time I was on antibiotics. I think there is an infection that is slow growing and now all of a sudden they symptoms are overwhelming my body. It took years and then I got the chylmidia infections and a couple more strep infections and the rest is history. I am looking into that doctor in Iowa as he lives 100 miles north of DesMoines which is where my daughter lives. I will fly out there and see him when I visit my daughter. I'm going to get a referral from my doctor. I found out yesterday that we are getting a rheumy in November but I'm not sure I even want to go that route now. This may be what I need to get over this. lori - I could feel this disease creeping through my whole body, slowly, but steadily.  It was something I couldn't get a doctor to understand.  My onset was so slow and my numbers are on the mild side, I luckily have been having tremendous success with long-term antibiotics.  Its a contagion, an infection, and can be treated.  What is this game that is being played on us to keep us misinformed and given poisons that fail?  Money, as usual.  I totally agree Cathy. I'm currently a bit frustrated with my internist. I think she has early stages of dementia and I'm very serious. I don't want to say anything to her but she does some stupid stuff lately. My mom goes to her and she is changing doctors. It is hard to change but something I must do for my health. I forgot to say no bird.  My c. pneumonia is just normal walking pneumonia.  I guess it shows up differently on Xrays. Hey Pip, he's not the only one who thinks probiotics don't work.  TM seems to be on the same page lately.  Are there any double blinds regarding probiotics? so what does he suggest when the good old yeast runs amuk.Oops - Wendy - get the book, The New Arthritis Breakthrough, by Henry Scammel available on Amazon or at some libraries.  Mycoplasma are what we're in a bunch about - they're the cell wall deficient critters we are talking about.  You had that AND RA - hmmmm. followed part of this but then got lost BUT i have done a little looking into roadback, and then i saw the word Chlamydia. I have PA, started as psoriasis and started about 7 days sfter initial sexual contact with what would become my wife.  it was initially treated as a rash, but later psoriasis, and now severe PA.  My wife since that time hs had a number of Dr visits with symtoms of Chlamydia.  Now i start thinking that she is responcible for all this, and maybe roadback is woth a try, as "i may have found my" reason, and it fits the pattern. [QUOTE=clufus]  Now i start thinking that she is responcible for all this, and maybe roadback is woth a try, as "i may have found my" reason, and it fits the pattern. Clufus - pip, i was not really blaming her, but since she did leave me 8 weeks ago because she couldn't handle all this disease stuff any longer she really does not deserve and sympathy.  i would be more interested in hearing how AP is working for you.  I am seriously thinking of trying it.The medical community states it is genetic with environmental factors. So you have a messed up gene. Sitting there doing its job like its supposed to when pow, pow, pow something hits it causing the defect to be revealed. It can be an infection, hormonal changes (pregnancy, menopause) or even a terrible stressful time. Its one of the reason the whole infection theory has been dismissed by most doctors. If it was an infection, you would take the antibiotics and it would go away. It does not go way when you do the AP, you have to take the antibiotics for ever just like MTX only the antibiotics are not as powerful as MTX, or the TNFs and is slow to work--if it does making it a poor choice for moderate to severe cases. Read Mayo or Johns Hopkins.

Testimonals are marketing, right? Its the internet, so are you really going to believe that or your doctor?Birdgirrl/Anna - [QUOTE=Bird Girrl] The medical community states it is genetic with environmental factors. So you have a messed up gene. Sitting there doing its job like its supposed to when pow, pow, pow something hits it causing the defect to be revealed. It can be an infection, hormonal changes (pregnancy, menopause) or even a terrible stressful time. Its one of the reason the whole infection theory has been dismissed by most doctors. If it was an infection, you would take the antibiotics and it would go away. It does not go way when you do the AP, you have to take the antibiotics for ever just like MTX only the antibiotics are not as powerful as MTX, or the TNFs and is slow to work--if it does making it a poor choice for moderate to severe cases. Read Mayo or Johns Hopkins.

Testimonals are marketing, right? Its the internet, so are you really going to believe that or your doctor?[/QUOTE]

The medical community states genetics may be one of the factors, it's not the cause. The cause of RA is unknown.

Since you know this, because you've been told multiple times on this forum and others, it means you are purposely continuing to try to spread misinformation.

Has it ever occurred to you that you might be wrong about your attitude towards antibiotic protocol therapy and that your whole anti-AP agenda might be hurting people that could otherwise be helped? You could at least have some integrity by sticking to the facts to debate your point of view instead of PURPOSELY SPREADING MISINFORMATION of which YOU KNOW BETTER.

Furthermore, Brrd, if you had even scratched the surface of current mycoplasma research, which you obviously haven't (although that doesn't stop you from spouting off your ill-informed, erronous opinions at every opportunity) you would not be making simplistic leaps of logic such as " If it was an infection, you would take the antibiotics and it would go away."

Why don't you actually read some of the research around mycoplasma and mycoplasma infection before you try to steer people away from a therapy that can actually help them?

Having watched you in action the last year or so, with your multiple name changes (pretending to be not you----how sad!) and stubborn sticking to your lies, sadly, I know integrity, honesty, and self-respect are concepts which hold little or no value to you.

Why don't you collect a little self-esteem and until then get out of the way of people who are bringing something helpful and honest to the table?Gimpy-a-gogo2008-09-08 13:21:10PS---the infection theory has actually not been dismissed by doctors, and more and more often researchers are saying that infection is actually a key part of the puzzle.

Gimpy-a-gogo2008-09-08 13:20:16To Pip and all, patandpaula, some kind of tetracycline antibiotic is needed. I take 100mg minocin (brand name because it is pelleted for better absorbtion, twice a day 3 days a week, Monday, Wednesday, and Friday. I worked up to that dose slowly to avoid a serious Herxheimer reaction. PLUS, I take a serious quantity of probiotic supplement about 3 hours after each dose. But you should ask Pip because she has c. pneumonia and an AP doc.PIP, please tell me again what mg and what antiobiotic you are taking to get rid of the c pneumonia   THANK YOU! 

I'm on 200 MWF of the brand Minocin.  Make sure the doc writes DAW (dispense as written) on the form.

Paula, didn't you say you were on AP before?  What happened to make you stop?

Doxy is kind of a second choice - people use it if they have high Lupus levels or if Mino won't work for some reason.  Do you know if the doc tested you for Lupus?  There is a really rare herx of Minocin Induced Lupus - stop the drug, the Lupus goes away, and then switch to doxy.  But you should be tested to see what your levels are doing and to decide which med to use - ie - Mino or doxy.

Does this help?

Pip

Pip!2008-09-10 09:15:53Thanks Pip.  I noticed that you said you took a Z pack (at least I think thats what you said) to get rid of the c pneumonia.  Would you tell me if you did and what that is?  I had tried Mino before and it made me really sick.  I am back again using it on mon wed and fri but am only on 100mg.  It does still make me a little nauseous, but nothing too bad.  I just want to be sure Im doing the right thing for this pneumonia and my doc is not an AP doc but will try whatever I ask him to hes so nice.  There is a website specificall dedicated to C pneumonia, they recommend doxy, clarithomycin and ,flagyl, not started at same time.  That sure is a lot of antiobiotics and I am afraid to take all those.   That's the cpnhelp.org website.  They have a good rotation - their people end up with only having to go in for a few IV's a year when they hit remission.  They also use massive doses of D and the MPer's are 'no D' and I'm still on the fence between them.  I lean towards the MPers because I think it's easier to add in D later if it's a mistake than to try to get it out once it's been massively added in.  LOL Pip, sorry to keep asking you questions, but who are the MP'ers and is that "D" doxy? Is there any website I can go to read about it?  I have read the Cnp help   Yes I did get probiotics after you told me to.  Thanks Pip  Going to Dr in couple of hours, trying to figure out what to ask him for.  Thanks again The MPer's are the Marshall Protocol people and can be found at www.sarcinfo.com.   D is Vitamin D and they are rabidly opposed to D.  Rabidly.  They believe it functions like Predisone so yes, you feel better on it, but the microbes hide behind it and can multiply.  The CPN people use D and think it helps.  I'm on the fence because I haven't sat down and read the studies over and over to figure out which group is right.  The MPer's are the only people claiming a cure but haven't had anybody get thru the program yet.  You can claim all you want, but until you have built an army of cured folks, you shouldn't be saying cure IMHO.  Like me - I'm searching for, but haven't found, my cure.

Oh my gosh, there is so much info, it gets really overwhelming doesnt it?  Thank you for the link and advice Pip, I am thinking of just using the one antiobiotic and see how it goes. because I am so afraid of all those pills.  Thanks again for all the help. 

Interesting stuff Pip. I did try the Mino (generic form) but had massive heart palapitations, so the Dr took me off. I did have a pretty severe case of walking pneumonia a few years before the RA. I hadd no idea I was sick, so I did not go to the Dr until I was so short of breath I could barely get out a full sentence! TheX-rays showed both lungs almost completely white. There was maybe 1/4 of each lung not affected. So...maybe that is my answer!
Right now, the RD just started me on MTX as well as all my other crap. My hubby is so upset about all the drugs I am putting in my body. My RD is not an AP Dr, but he did ask me if I had tried the Mino, so I know he is open to just about anything. My inflammation levels refuse to drop, and so he said we need to take an aggressive approach to get this all under control.
Unlike a lot of you, I do not have severe pain, but without the nsaids, it is pretty bad.

So...anyone? Any ideas what could help? How bad is the MTX? I started it last night. 6 2.5 mg tablets.

It is really confusing at first and seems like a lot of information but once you get the basics down it's not as much to keep track of as you think. The thing with AP is for most people it works really slowly. Start at a lower dose and slowly work up to one you can tolerate, and then be patient. I've been at it for a year and a half and have gone from 20mg mtx to 7.5, and I feel way better than I ever did before any AP. I just spent 4 months living in a van and driving half of 25,000 kilometres! That would have been impossible for me to do a year ago.

Just keep on truckin'.... Gimpy...what is your DX? Do you have RA?

So, you take MTX and Plaquenil, and what AP therapy?
I need to get the inflammation down per my RD.

GrammaKathy2008-09-13 11:12:45I have RA and I take 7.5mg mtx weekly, 400mg plaquenil daily, and 100mg minocin twice a day 3 times a week, as well as probiotics, fish oil, and marijuana. But I haven't been taking my fish oil lately because it hasn't been needed. My plan is to get off mtx and plaquenil completely, but I wanted to do it with as little pain and joint damage as possible so I slowly weaned onto minocin and slowly am weaning off the other drugs. It's taken longer than I thought but it's working. My sed rate is 2.My last sed rate was 41 in mid June. The others have been 35-45 every 3 months. This is all very interesting....it is funny, I had a breast abcess in June and was put on antibiotics, I cant remember the name of the antibiotic but I remember that in that time period I felt better.  There have been other times when I have taken antibiotics in the last 18 years that I have felt better, I always have felt my RA was brought on by some type of an infection. I've been around a number of parrots. I do not think they ever gave me virus or infection. I have had some AI scince the beginning of time. Allergies and infections and bad teeth scince I was a born. Some on and off swelling even as a child. I had strep always it seemed. Always strange and exagerated symtems. I had scarletina at age sixteen. But I  was worried about Reumatic fever at age 12. I have strep now and came down with it on day 17 of Cipro. Which came first the chicken or the egg? GrammaKathy - hey girl, glad to see you back with us.  For you, with the heart palpitations, you need a doc to monitor you.  Some of these cell wall deficient bacteria have been found in heart plaque and you want to kill them off too - not just the ones in your joints.  Why get better just to die with heart disease - and I have heart disease all over my family, so I know what for I speak.  LOL  What I would do (MO) is just start on the AP again at a MUCH lower dose until the heart palpitations stop - then up the dose and keep on going. 

I have the book, it is at my house in Zadar, I have to ask someone to send it to me.  Believe it or not I bought it about 6-7 years ago

Yes, it's easier on the body because pulsing gives you some break from toxin die off.  I actually started with 50mg twice a week, and then slowly built up to 200mg 3 times a week over the course of about 6 months. If you are herxing or having side effects don't fret about easing in more slowly.That is the main thing I am worried about, the herxing because I am a teacher and it is going to get very busy at school and I have early morning classes.  I have been speaking to someone else who has had success with AP and she didnt herx at all!  In fact she had relief after 2 weeks Not herxing is really really rare.  Mostly the Scleroderma people.  Basically, you have to herx to get better - which is kind of like reversing the disease, which until you go thru it, seems like some sort of bizarre 'group think'.  From my 'trends' I noticed on the RB - there are 2 types of herxers - those who fall to the ground almost immediately (stop the med, lower the dose big time and start again much slooooower) or the I feel great but then get hit at the 3 month, 6 months, 12 month and then 18 month points but are then 'free' until the 6 - 7 year mark.  That was me.  I'm now at just over 2 years.  Pip!2008-09-16 09:29:49
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