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Date: 23.05.2011
From: Patricia

Subject: Antibiotic Therapy

Hi everyone :-) Have any of you tried or heard about Antibiotic Therapy for treating RA type illness? I have come across this website and would like to know your thoughts.

I am currently taking Hydroychloroquine, Prednisolone and Celebrex plus Oramorph for pain relief. Unfortunately, this doesn't seem to be working completely and when I see my rheumatologist in September (seems an awful long time until then) I will need to discuss other treatments with him. I did mention the Antibiotic Therapy with him at my last appointment and his seemed willing to give it a go. I am soooooooooo lucky having him as my rheumy. He is forward thinking and happy to work with his patients. He really cares.

Anyway, enough rambling from me. Just in case anyone is interested here is the Roadback website.
http://www.roadback.org/forum/viewforum.php?f=1
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Date: 23.05.2011
From: bsk

Subject: Re: Antibiotic Therapy

there are loads of threads about this if you look back
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Date: 23.05.2011
From: Patricia

Subject: Re: Antibiotic Therapy

Thank you :-)
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Date: 24.05.2011
From: Linda

Subject: Re: Antibiotic Therapy

I wondered if you had read the book The New arthritis breakthrough. I found it very interesting although a lot of the medical stuff went over my head. However i did get the gist of it, that rheumatic diseases are caused by infections. It does seem so logical. Your so lucky that your rheumy is willing to try it. I can't work up the courage to ask mine.
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Date: 24.05.2011
From: Patricia

Subject: Re: Antibiotic Therapy

Hi Linda! I am just about to order this book which I found out about on the roadback website. I think I too will find it interesting and need to get 'clued up' about it for when I go back to see my rheumatologist in September.

The thing I like about AP is that we can still stay on our meds and add the antibiotic in.

I live in the North East. Perhaps if you live near you could swap to my rheumy!!!! He works some days at a teaching hospital and the other days at the hospital I attend. He seems to be open about trying different things if we suggest it. He encourages his patients to do research for themselves too, so I always feel as though I am at least trying to do something to help myself, cos this illness kind of makes us feel sooooo helpless don't you think. It takes us over!

If you don't mind me asking what drugs are you on now Linda? How are they suiting you? Please don't feel you have to tell me if you would rather not. If you are not getting 'back to normal' with the drugs you are on perhaps you could just ask your rheumy what his thoughts are on AP alongside your other meds. Worth a try.

Thanks for the info about the book. I appreciate it....x
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Date: 25.05.2011
From: Maz

Subject: Re: Antibiotic Therapy

Interesting you found the 'Roadback' yourself Patricia, good for you .. I have been on AP since Jun 08 & after a few hiccups getting the meds right can honestly say the last time I had an actual flare was over 12 months ago.

AP is not a quick fix & yes you need to tweak the dosages & meds every now & again, but if you stick with it there is a light at the end of it. Recently I had a friend in USA try AP as a 'last resort' & is now relatively pain free & mobile for the first time in a long time; she was previously house bound for a long time trying to raise 2 young active boys by herself. AP is the only thing that has given her any relief from the unrelenting pain she had & she is now an active member of The Roadback as well.

Research, research, research is the name of the game & yes initially you can continue to take your plaquenil and/or methatrexate so the antibiotics work side by side with your other meds.

Good luck in your journey,
Maz
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Date: 25.05.2011
From: Patricia

Subject: Re: Antibiotic Therapy

Hi Maz! Thank you for a very positive post. It is absolutely brilliant to hear your experience and hear that you are well again. You must feel good about that. Your friend in the USA must be ecstatic at being able to look after her family and have a life again. I am completely amazed that this treatment is not tried as standard.

I am looking forward to reading the book and contine to look through the posts on the Roadback. As you so rightly say research is the key. Not always easy though when we feel so awful.

Can I ask what pro/prebiotic you take with your antibiotics? That is my only 'worry' about the AP treatment. I know that I will need to protect myself but there are so many different types!!!

My Rheumatologist seems to have knowledge of this treatment but from what I can gather usually goes down the normal route of plaquenil/sulfasalazine/methatraxate. I can't take meth because of liver problems. He seems very open to try different things though. I will just need to do my 'homework' so I know what he is giving me is right. Plaquenil has worked to a point but I still have lots of pain in all joints. It never goes away. Hence, why I want to try AP because the next step will be the anti tnf drugs.

I don't mind it not being a quick fix. I am willing to be patient if I feel I am going to get better. I was diagnosed well over a year ago (and had symptoms for many years before that) and was very poorly then so what's another year!!!!

Thank you Maz. Lovely to hear from you. I appreciate your support.

Take care...x
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Date: 25.05.2011
From: Maz

Subject: Re: Antibiotic Therapy

You are welcome Pat,it is a breath of fresh air to not be slammed about using AP, so thanks for that!

I just got home & need to have a quick cuppa before I head off to College to do a night class but will respond to your post tomorrow when I get in to work.

I can put you in touch with Eileen if you want some first hand knowledge from someone??
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Date: 25.05.2011
From: Patricia

Subject: Re: Antibiotic Therapy

Thank you so much Maz. Enjoy your night class :-). Would love to be in touch with Eileen...x
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Date: 26.05.2011
From: Maz

Subject: Re: Antibiotic Therapy

Funny group last night, all women & all with a lovely sense of humour, it was a very nice class to teach!

There is no doubt that if you are contemplating/using/want to know about AP the website to be a part of is 'The Roadback' if for no other reason than everyone there is using AP, the volunteers are very informed about AP & the other members are so helpful & supportive; you will need all of that if you start AP, the learning process takes time.

Even little things like needing the inflammation to have calmed down before you start to wean off the regular meds & yes even that can take time, coupled with learning about herxes, what they are & how long they can last if you ever get one, how the antibiotics actually work in your system, what you can do to help cut the pain etc etc.

My work email address is marilyn.m@southernprecast.com.au
if you contact me asap I will put you in touch with Eileen directly.

Cheers,
Maz
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Date: 26.05.2011
From: Sue

Subject: Re: Antibiotic Therapy

I was chatting to a friend last week who is a nutritionist. He's just come back from lecturing in the States and he sat in on a lecture about RA being triggered by Proteus urinary tract infection. The consultant is from the school of Biomedical and Health Sciences, Kings College London.

He treates people by testing their urine for this particular urine infection. They are then given antibiotics in conjunction with their current meds and they are advised to drink cranberry juice and lots of water. His results are meant to be fantastic.

I'm going to show his study paper to my rheumy and ask if my urine can be sent to his college to be tested for Proteus and if I'm positive I would to follow it with the antibiotics to give it a go. Nothing ventured and all that......

If you want to google it the names are Alan Ebringer & Taha Rashid, Infection & Immunity Group, School of Biomedical and Health Sciences, Kings College London, Stamford Street, London, SE1 9NN, tel: 020 7848 4302.

His paper states:

RA is a chronic disabling polyarthritic disease, which affects mainly women in middle and old age. Extensive evidence based on the results of various microbial, immunological and molecular studies from different parts of the world show that a strong link exists between Proteus mirabilis microbes and RA. We propose that sub-clinical Protuse urinary tract infections are the main triggering factors and that the presence of molecular mimicry and cross reactivity between these bacterial and RA targeted tissue antigens assist in the perpetuation of the disease process through production of cytopathic auto-antibodies.

Patients with RA especially during the early stages of the disease could benefit from Proteus anti-bacterial measures involving the use of antibiotics, vegetarian diets and high intake of water and fruit juices such as cranberry juice in addition to the currently employed treatments.

Its worth a google

Sue
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Date: 26.05.2011
From: Patricia

Subject: Re: Antibiotic Therapy

WOW! That sounds really interesting. I will indeed google it and have a good read. The more research we can do the better.

I have just been on rheumatic.org and there is some good practical advice on there for us to discuss with our Rheumatologists treatment wise.

The thing I like about this antibiotic protocol is that we can stay on our current meds for the time being. At the moment I couldn't do without mine and I have to say I have been grateful for them. However, I would prefer not to go on to the 'stronger drugs' if there is an alternative option that works.

Thank you Sue for that very informative post. I hope that you get a positive reaction from your Rheumy. If not a visit to Kings College I think!!!

Take care :-)...x
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Date: 27.05.2011
From: Maz

Subject: Re: Antibiotic Therapy

Great find Sue, I find it gets more & more interesting with the researchers in that they are all really looking into the possibility that arthritic diseases are infectious based!! (same with those currently researching cancer)

Pat,
You need to remember that although you are able to stay on your current meds whilst starting AP & yes that can be for quite a while, however when you stabilise you need to start weaning yourself off the other drugs, but ever so slowly, a little bit at a time. There are quite a few members on the Roadback doing exactly that at the minute, so you won't be alone.
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Date: 27.05.2011
From: shiffy

Subject: Re: Antibiotic Therapy

I have just been reading and Im so proud people are looking for alternatives for this disease. Any new research and findings are always giving us hope and keep our chin up for successful treatment.

Thank you Sue, Patricia, and Maz!
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Date: 27.05.2011
From: Patricia

Subject: Re: Antibiotic Therapy

Thank you Shiffy :-)

As Maz says it is not a quick fix therapy but we can run it alongside the meds we are already taking and then start weaning off them as we start to feel better.

It is so important that we all do what we are comfortable with. For some that will be the Dmard/Biologics route (I am taking Dmards at the mo) and for others not.

I would just like to give the AP a go. The Roadback site is full of information as is Maz :-).

If you decide to try it let me know how you get along.

Take care....x
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Date: 29.05.2011
From: Linda

Subject: Re: Antibiotic Therapy

Hi Patricia, sorry i didn,t respond, i've been away. I,m taking plaquenil and more recently low dose prednisolone. At the moment i don,t feel too bad.
I live in the midlands and my rhuemy is quite abrupt, so i would never have the confidence to approach him about AP.
I came across the roadback website a few years ago and was pretty gobsmacked. My late mother became severly disabled with RA, and my late sister had Lupus. I have combination the two.
I have also heard of Professor Alan Ebringer. His website Kickas.org has a lot of information on it athough mostly about AS. There is also an RA thread on there.
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Date: 29.05.2011
From: patricia

Subject: Re: Antibiotic Therapy

Hi Linda. Hope you had a nice time away. Sometimes it does us good to get away from our 'normal routine'. I haven't been anywhere, can't face it, since the dreaded illness struck!!!

I am really sorry to hear about your rheumy and his attitude, especially since you have been so proactive in finding information on different treatment methods. I am now on my second Dmard and have been taking prednisolone for over a year now. At high doses too. This has caused Osteopenia. I am not completely against conventional meds. I do feel there are times they have a place. I have been very grateful for them. I would just like to try the AP. As many say on the Roadback we have nothing to lose and perhaps something to gain - our health back.

I emailed the Roadback website and got a reply about a couple of clinics in the UK that work with AP. Not sure if I can post them on here but there is one in Surrey and one in Hertfordshire. It may be worth going for an initial diagnosis???

I will look on the website of Prof Ebringer. It is all interesting stuff.

Hope you continue to improve :-)
Patricia x
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Date: 29.05.2011
From: Linda

Subject: Re: Antibiotic Therapy

Patricia, i had a bad lupus flare last year and was taking high dose prednisolone, i am now down to a very low dose. It seems to be keeping the lupus at bay.
I'm not against traditional meds either, they have their place, but i would like to achieve a remission which i have never had. All they could offer me besides prednisolone was an immusupressant drug which i do not want to take.
let us know how you get on. If push comes to shove, i will definately seek out this treatment myself.
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