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Date: 23.08.2013
From: holly

Subject: ANTIBIOTIC PROTOCOL

I want to go on antibiotic protocol instead of the standard drugs available.Anyone else on here ever tried this therapy?
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Date: 24.08.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Holly

You may already have seen this but the very best resource I know for information on antibiotics for arthritis is here - there are lots of studies and direction for physicians and how approach your doctor

http://www.roadback.org/

There are a lot of people that get relief and even some that say that they are in remission.

My take on it is that the protocol is eliminating one of the triggers of arthritis - as studied in this article

http://www.ncbi.nlm.nih.gov/pubmed/12404235?dopt=Abstract

And also limits intestinal permeability as studied here - bacterial presence in the gut is obviously normal but when recognised as a threat the body releases a protein (zonulin) that open the tight-junctions in the gut lining to flush out the baddie - :)

http://www.ncbi.nlm.nih.gov/pubmed/12404235?dopt=Abstract

Lastly the same reaction occurs to flush out dietary proteins that are not tolerated in some individuals - in the the case if gliadin (a wheat protein) -

http://www.ncbi.nlm.nih.gov/pubmed/16635908

It says - Based on our results, we concluded that gliadin activates zonulin signaling irrespective of the genetic expression of autoimmunity, leading to increased intestinal permeability to macromolecules.

So you don't have to be a celiac for the gut to become permeable after ingesting gliadin.

Because of this many on Roadback discuss diet modification also.
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Date: 24.08.2013
From: Linda

Subject: Re: ANTIBIOTIC PROTOCOL

I think there are some who have tried it on here holly, but I haven't heard anything from them for a long time. Like Sean I would suggest the Roadback website. There's lots of information on AP there.

I'd also love to try it, but it's seems very unlikely at present. We don't even have a rheumatologist at the moment as he left the country last year. My GP is lovely but he's not an expert on autoimmune diseases.
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Date: 24.08.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Linda my GP is great but I wouldn't expect them to know any detail on autoimmune disease - when I read some of the forum on Roadback yesterday they had discussed the Herxheimer effect - which is when there is a die off of bacteria causing a worsening of symptoms for a time - they also mentioned MSM and that some had gone through a bad few weeks with this before feeling better - and remembered your reaction to MSM.

Most were saying that a reaction was a good thing.
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Date: 25.08.2013
From: Linda

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Sean. Have read about the Herxheimer effect. I don't think though that's what happened to me. Because I do have Lupus, It was the sun that caused a massive flare. I now have to avoid the sun completely, and use SP50 sun cream when I go out.

Oddly though, when I looked at the side effects of the three drugs I was taking, they all said they could cause sun sensitivity. So I believe can antibiotics.
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Date: 26.08.2013
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Holly :-) I have been following the Antibiotic Protocol for nearly two years. Alongside that I have been taking prednisolone (steroids), celebrex and morphine. My rheumatologist prescribes for me but I have been very, very lucky because not all will agree to it. I agree with Sean the best place for you to find out any information you need to know is the Roadback Foundation. The reason I started AP is because I failed two dmards, Sulfasalazine and Hydroxychloroquine. I am not by any means in remission but my bloods are starting to show improvement and I am able to do much more than I could. My CRP has come down from mid to high twenties to six at the last test. I am waiting for my new blood results to come next week. I still have pain and swelling and need my conventional meds at the moment BUT I do believe the minocycline is keeping me stable not deteriorating. I don't have any joint damage that I am aware of. At my worst I was taking 30mg steroids and now I am on 7.5 mg daily. It is my intention to reduce again after my rheumy appointment next month. I don't believe the antibiotic can fully do it's job until I can reduce my steroids significantly. I am at the moment looking into my diet because I believe this is key - although I didn't think this at the beginning!!! Detoxing is also a must - loads of info about that on Roadback. I have just added in spirulina and will be adding chlorella in too. Two good supplements in my opinion.

The good thing about minocycline is you can take it alongside your conventional medication if needed. Then start reducing your meds, under supervision from your Doctor, when your bloods start to show improvement. It is not a quick fix Holly but for me I felt it was well worth a try and I don't regret it.

Please let me know if I can be of any more help.

Patricia xx

PS: Linda - hi :-) - minocycline can in rare cases cause drug induced lupus so would not be suitable for you but I think it is doxycycline that would be substituted.
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Date: 27.08.2013
From: Linda

Subject: Re: ANTIBIOTIC PROTOCOL

Great to hear from you Patricia. Yes I have read that minocycline can cause DILE, but I have had other antibiotics in the same class as minocycline, and have had no problem with them.

Glad your doing okay.
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Date: 27.08.2013
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

That's great to hear Linda :-) Funnily enough there is thread over on the Roadback Forum talking about sun sensitivity. Someone over there mentioned a lack of vitamin D3 can also cause this aswell as certain drugs as you mentioned. Oh dear - we all seem to take one step forward and many back at times don't we???? I wish you well......x
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Date: 29.08.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Patricia

It is great to hear that you are doing well on AP - my reading is that it takes longer because the immune system has already generated memory b cells against you that may have been triggered by past exposure to certain bacteria.

I found this research in to how Spirulina affects different bacteria - with the top inhibition for Proteus Mirabilis which is implicated as a main RA trigger -

http://www.apjtb.com/zz/2011s2/7.pdf

http://www.ncbi.nlm.nih.gov/pubmed/16603443

http://rheumatology.oxfordjournals.org/content/44/11/1433.short

Also if you look at the conclusion on this fairly recent study you will see the frustration of the author that AP was not being used more (I find the dietary advice a bit basic :)

http://www.ima.org.il/FilesUpload/IMAJ/0/60/30282.pdf
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Date: 30.08.2013
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Sean,

Great to hear from you and I would like to thank you very much for taking the time to get that information for me. Brilliant reading! There is so much to learn about this awful illness and it's cause. I have been poorly 'full on' for three years and have been in a flare for all that time. When I think back I had a mild version for many years beforehand, didn't feel quite right, used to go the the Doc but nothing significant showed up in my bloods. I still don't have the RA Factor or Anti CCP in my blood. Do you have RA Sean?? If you do how do you treat it? We all find our own way of coping I think.

I wish you well :-)
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Date: 30.08.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Patricia

Funny that you should mention anti-CCP because I was reading about that earlier today.

I read that citrullinated protein is almost the same process as deamination of gluten for celiac - in effect a part of the invader (bacteria or gluten) is modified by the immune system and leaves a self marker. For me this was mind blowing - that they discuss this stuff in conferences years ago -

https://acr.confex.com/acr/2007/webprogram/Paper8168.html

I have AS not RA but my diagnosis has a long history and I sometimes think that disease names are convenient labels - some of us fall in between - perhaps the multifactorial nature of disease means that some of us have elements of more than one type of arthritis. The best they could do when I was 19 was non-specific / undifferentiated - but my Dad has AS and my symptoms and onset were very similar.

I have tried hard to be totally gluten, totally corn free, mostly cow dairy free for over 20 years (now 47) - my disease changed radically when I changed my diet. The ongoing bacterial battle (klebsiella pneumoni is strongly implicated) is the other part that remains from time to time.This has led me to research bacteria processes such as motility, swarming, biofilms and quorum sensing - so I have recently been using occasional carb free and fasting, probiotic Sheeps milk yogurt and have found pure Pomegranate Juice (no sugar or sweeteners) and especially Kombucha very helpful earlier this year. I also think that is why some of the supplements including Magnesium help (klebsiella does not like an alkaline gut).

I do have the odd mild flare - but haven't had any major discomfort for about a year now.

Best of luck with you detox and diet :)!
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Date: 31.08.2013
From: Suz

Subject: Re: ANTIBIOTIC PROTOCOL

This Information is so interesting and makes so sense and the fact that diet plays a big role in dealing with these incurable disease makes such a difference.

Great stuff :)
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Date: 31.08.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Suz

Just to be clear - I don't think I am cured by any means. Controlled but not cured.

I don't think there will be a cure until we can understand the immune system better - one area that I am really interested in and is the closest shot at a cure is EPD (Enzyme Potentiated Desensitisation) - which can reprogram the immune system to recognise the difference between friend and foe. It's been used for AS and RA - the same injection / mix is given for both AS and RA. My son has a peanut allergy so I will be following this with interest for him also!

Dr Sarah Myhill mentioned this treatment for RA and suggested a B Cell depletion drug to fully reset the immune system - before EPD

However as with all treatments I am sure there are risks!

http://www.naltd.co.uk/EPD.pdf

http://en.wikipedia.org/wiki/Enzyme_potentiated_desensitization

http://www.dma1.org/-rohrers/allergy/epd_faq.htm
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Date: 31.08.2013
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Wow Sean you are so well researched! I agree wholeheartedly about the disease names being convenient labels. When first 'diagnosed' my Rheumatologist was very reticent to give a label but knew he had to treat as Inflammatory Arthritis because something had gone very wrong with my immune system not only attacking my joints/soft tissue but also my liver. Amazingly at my last appointment the positive auto antibodies AMA and M2 (I think) predisposing me to primary biliary cirrhosis (oh dear) had cleared. This can only have been the minocycline!! I found that mind blowing actually. I hope the same happens with my recent blood test results.

Maz at the Roadback talks about biofilms a lot. She is very, very knowledgeable too. The guy from Kickas occasionally posts there. I would think you are a regular on his site too :-)

Jay Kordich, juicing chap from USA, always says chronic illness can't live in an alkaline body. The thing is it is extremely difficult to get alkaline and stay that way!!! It seems you have done your absolute best to manage your illness and that you are winning. You are to be commended for that. It can't have been easy to have had your illness from such a young age. I was fortunate that it didn't hit severely until I was mid fifties.

Well, I have given up meat although I still eat fish at the moment. My next elimination is dairy followed by gluten. I am doing one at a time eek. I have incorporated juicing into my everyday life and am sure this will help. Slow and steady steps really .

Keep spreading the word Sean. I am certain along the way you will help many with your experience and great research. We all travel different paths and it is good to help where we can :-)

Sending good wishes for continued good health.....x
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Date: 31.08.2013
From: Suz

Subject: Re: ANTIBIOTIC PROTOCOL

I'm aware your not cured Sean but this information on how Immune systems plays a role with diet in controlling auto immune diseases is something really worth while to look into, I do myself do a lot of research and reading and agree with most of the things you mention.

Patricia I was like you and slowing started removing certain foods from my diet, I definitely do not eat any red meat and avoid dairy cows milk too. Casein and Lactose in cows Milk are the culprits for inflammation.

I think its best to avoid things that affect us for better health in my opinion.

Take care guys
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Date: 31.08.2013
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Suz :-) Do you have RA?? I must admit I was convinced for a long time that diet didn't play a part with my arthritis but since starting to juice and doing a couple of juice 'fasts' where my pain did get slightly better in a short space of time I had to admit to myself that some foods were causing problems. It was easy for me to cut out all meat because I have always been a bit squeamish about eating it. When I think back to when I was younger milk and butter made me feel sick but I was told I needed it to keep me strong - old fashioned ways :-) Have you felt better since cutting these out of your diet?? I do agree with you that if we can gain better health by omitting certain things then it has to be worth it. Although living without chocolate will be very difficult although I have discovered Montezumas do vegan truffles hrmmmmmm

Thank you for the info Suz. You take care too.....x
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Date: 02.09.2013
From: Suz

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Patricia

I do have R.A for over 17 years. I feel the diet change has helped with me weight and therefore has helped some what tackle the inflammation too. I think because R.A can drain the body from some vital nutrients especially the from the joints good diets important.

There soo much alternative to chocolates now Patricia which is dairy free, gluten free and even sugar free and it tastes just like chocolate but not quite like Galaxy style which was my favourite!
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Date: 04.09.2013
From: Denise

Subject: Re: ANTIBIOTIC PROTOCOL

Morning all

Very interested in this Antibiotic Protocol and my logical mind tells me there may be some sense in it as my understanding is that RA is your own immune system attacking itself. I am not convinced on the traditional medication at present ... BUT ...with the current medical guidelines being that you should only take antibiotics if really necessary as it weakens your immune system how does this theory aline with AP?
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Date: 04.09.2013
From: cc

Subject: Re: ANTIBIOTIC PROTOCOL

Log into the Roadback website as there is plenty of information about AP therapy.
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Date: 04.09.2013
From: Colin W

Subject: Re: ANTIBIOTIC PROTOCOL

Denise , ANTIBIOTIC PROTOCOL is used as a Disease-modifying antirheumatic drugs (DMARDs) & not because of bugs like in antibiotics , its used the same way as Methotrexate , sulfasalazine , leflunomide & D-penicillamine so like Penicillamine is used as a form of immunosuppression to treat rheumatoid arthritis. these treatments are no longer the prefered way to treat RA in the UK
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Date: 04.09.2013
From: cc

Subject: Re: ANTIBIOTIC PROTOCOL

ANTIBIOTIC PROTOCOL IS NOT USED AS A DISEASE MODIFYING DRUG.PLEASE LOG INTO THE ROADBACK FOUNDATION WEBSITE. SOME BELIEVE RHEUMATOID ARTHRITIS IS CAUSED BY BACTERIA AND FOR SOME ANTIBIOTIC THERAPY HAS PUT MANY INTO REMISSION.
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Date: 04.09.2013
From: Colin W

Subject: Re: ANTIBIOTIC PROTOCOL

realy you saying the experts in rheumatiod arthritis in the UK & USA dont know what they are doing , if you are happy to use some quack website then its up to you , & if something works then thats good , This has been around for the last 60 years & if it was going to be the cure for RA we would know about it , the doctor who recommened it in the first place died over 20 years ago & retireed several years before that , its jus t more of the same old rubish

http://en.wikipedia.org/wiki/D-penicillamine

http://www.arthritistoday.org/about-arthritis/types-of-arthritis/rheumatoid-arthritis/treatment-plan/treatment-choices/ra-antibiotics.php
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Date: 04.09.2013
From: cc

Subject: Re: ANTIBIOTIC PROTOCOL

HAVE YOU TRIED THE AP YOURSELF COLIN ? I DIDNT SAY THE "EXPERTS" IN THE UK & US DONT KNOW WHAT THEY ARE DOING,WHERE DID YOU GET THAT FROM ? ANTIBIOTIC THERAPY IS JUST ANOTHER DIRECTION IN TREATMENT PEOPLE MAY LIKE TO LEARN ABOUT.ITS VERY POPULAR IN THE US AND AUSTRALIA.
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Date: 04.09.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Colin

I think the issue here is that although monocyline is termed as a DMARD in past usage as per wikipedia. It wasn't studied fully - or for long enough - your own link to arthritis today says

"The limited research that does exist suggests minocycline can provide some benefit for some people with RA, but minocycline has simply not been studied enough in people with RA to provide a full picture of its effectiveness and limitations, how it works, when it should be administered and in what dosages for optimal effects, and for whom it is best suited."

SO OFFICIALLY NOT STUDIED enough - and then out of patent - then along come new drugs. No point studying it any more then!

What is a DMARD anyway - for me its Pharma speak to say "no sure why its working". Anti-TNF is clear - antibiotic is clear but DMARD...mmmmm.

It's the same with Sulfa - the main 'non quack' sites say that its exact mode of operation is unknown. Even Methotrexate has some similar debates over how it works.

BTW - Roadback is by no means a quack website - I would do some homework before making disrespectful accusations.

Minocyline has been successfully studied to inhibit candida - and improve leaky gut - a phenomenon I wholeheartedly believe is the initiating trigger for autoimmune diseases and does perpetuate reinfection with complex proteins that test immune tolerance leaking through - your experts are talking about it too -

https://acr.confex.com/acr/2007/webprogram/Paper8168.html

The bottom line is results - my personal view is that there is a good element of non antibiotic / DMARD action of Monocyline also.

It has been studied to regulate the inflammatory pathways for MS, Asthma and other autoimmune dieases with good outcomes. This is when the immune system responds to antigens (including modified / citrullinated proteins from bacteria and food) - disease modifying there yes.
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Date: 04.09.2013
From: cc

Subject: Re: ANTIBIOTIC PROTOCOL

Well written Sean, but I think Colin may struggle with all that information to read, as his spelling is atrocious.
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Date: 04.09.2013
From: Colin W

Subject: Re: ANTIBIOTIC PROTOCOL

cc , I am dyslexic but it dont make anyone thick , in my school I was the best one at maths in my year even though my spelling is bad

I wont do the links because there is so much rubish writen on the internet & to believe everything writen & calling me thick

D-penicillamine was introduced in the 1970s and is not often used nowadays to treat patients with RA. Its mechanism of action is uncertain, it seems to damp down the immune system in a non-specific way. Minocycline monotherapy was recommended for patients without poor prognostic features with low disease activity and with short disease duration (less than 24 months). A very small group of people with RA fall into this category.

both are the same & well know to be not very effective with people with severe RA ,

you guys call me thick but seems like you cant add up because you seem to get 2 + 2 & make 5
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Date: 04.09.2013
From: Holly

Subject: Re: ANTIBIOTIC PROTOCOL

If you think its rubbish then why respond ? Why are you so angry ? My cousin is dyslexic and in the 1960s people didn't believe there was such a condition.Lucky for him and yourself a few open minded doctors proved it did.You are wrong to dismiss everything and Im sorry but you do come across as being thick,you said it !!
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Date: 04.09.2013
From: rhona

Subject: Re: ANTIBIOTIC PROTOCOL

Just a wee message for "cc" whoever that is. I think you are very ignorant to comment on something so trivial. Everyone is entitled to an opinion without it turning personal. I would also like to add that Colin has great knowledge on arthritis and has been most helpful to many on this site.
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Date: 04.09.2013
From: cc

Subject: Re: ANTIBIOTIC PROTOCOL

COLIN MAY HAVE A GREAT KNOWLEDGE OF ARTHRITIS AND IS ENTITLED TO HIS OPINION BUT SHOULD DO SO WITHOUT BEING DISRESPECTFUL OF OTHERS.
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Date: 04.09.2013
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Hi again :-) I feel I must defend the Roadback Forum. They are most definitely not a quack website. There are many people on there who have reached remission with the Antibiotic Protocol and many others who have found great relief. Maz one of the volunteers on there has so much knowledge. She is very well up on all new research and she is a gem. Maz was in an extremely bad way unable to walk and is now well and living an almost pain free life. This way of treating can and does work for many - but I agree not all. I myself take the minocycline and although I am by no means cured, still have pain and swelling, it has helped me to NOT deteriorate any further and prevent joint damage. I am most certainly not against the conventional ways. I take steroids, celebrex and morphine but I personally would prefer to take the minocylcine at the moment. Sulfasalazine is an antibiotic drug and this is given quite a lot for RA. My rheumatologist 'buys in' to the theory that Ra can be triggered by infection and this is the opinion of the Roadback. We all choose different paths and I know AP does have strong opinions for and against but in my opinion it isn't a quack treatment :-) It doesn't suit everyone but let's face it neither do the conventional drugs. Please let's all be at peace with each other :-) We have a shared condition and should be backing each other up with this debilitating illness. Best wishes to everyone xx
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Date: 04.09.2013
From: Bsk

Subject: Re: ANTIBIOTIC PROTOCOL

I don't know who you are cc but I think you are the one being disrespectful. Your post was awful and I think you should apologise to Colin. You too Holly. We can disagree on here, and we do, but to insult someone because they have dyslexia is simply not acceptable.
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Date: 04.09.2013
From: cc

Subject: Re: ANTIBIOTIC PROTOCOL

Another great read is the infection connection by Katherine Poehlmann.Its a very informative book written by a fellow RA sufferer.
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Date: 04.09.2013
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Thanks CC - just found an interview with her on youtube. Will watch it fully tomorrow. Looks really interesting. I have always believed that the long term stress I was dealing with (and hard exercise regime to counteract the stress) were the breeding ground for my immune system to go out of whack and at the beginning of the interview she mentions this! It will be a brilliant listen and the book will be a good read for me I am sure :-)
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Date: 05.09.2013
From: Denise

Subject: Re: ANTIBIOTIC PROTOCOL

Woops, sorry folks, didn't mean to open up a can of worms was just looking for a logical answer to my thoughts. But did look at the Roadback site and found a patient statement which puts in far better words than I could ever explain exactly how I feel. So that will be coming with me to my next GP and consultant apts. Doesn't mean to say though that I have formed any conclusive opinions on AP. Just trying to look at all avenues with an open mind.
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Date: 05.09.2013
From: Linda

Subject: Re: ANTIBIOTIC PROTOCOL

Didn't Dr Brown call his book Roadback which also the name of the website because of Lyme disease. Lyme disease if left untreated, can lead to allsorts of autoimmune diseases. Lyme disease is without doubt caused by bacteria via a bite from a tick. It's not such a leap of faith for me to believe that autoimmune diseases are caused by bacteria. Obviously there's more to it than that.

cc. The Infection Connection is great book. Katherine Poehlmann cured herself of RA. It came on after she fell down the stairs.
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Date: 05.09.2013
From: cc

Subject: Re: ANTIBIOTIC PROTOCOL

HI LINDA,THOMAS MCPHERSON BROWNS BOOK IS CALLED THE ROAD BACK.IT COVERS ALL FORMS OF ARTHRITIS BUT MAINLY RA.HE TREATED OVER TEN THOUSAND PEOPLE IN HIS LIFE TIME.THE NEWER UPDATED BOOK BY HENRY SCAMMELL "THE NEW ARTHRITIS BREAKTHROUGH" CONTAINS THE ROAD BACK BUT ALSO CASE HISTORIES OF PATIENTS WHO REGAINED THEIR LIVES WITH THE TREATMENT.
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Date: 05.09.2013
From: Linda

Subject: Re: ANTIBIOTIC PROTOCOL

Yes cc, It's the best book I've ever read about arthritis and I've got quite a few.

I believe Dr Brown called it Roadback because doctors originally thought arthritis was caused by infection. Then they discovered steroids. We all know what the outcome of that was. After Lyme disease was discovered, Dr Brown hoped they would return to the theory of infection being the cause of arthritis.
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Date: 06.09.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

More information on this subject -

Porphyromonas Gingivalis lives in the mouth and gut and is involved in the citrullination of proteins - firm mention for its involvement in RA

http://en.wikipedia.org/wiki/Porphyromonas_gingivalis

Minocyline is active against this bacteria -

http://www.ncbi.nlm.nih.gov/pubmed/14682662
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Date: 11.09.2013
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

Really don't know why people are questioning others??

Your preference for a treatment path is entirely your choice and it's my view you should go down whatever path you choose hand in hand with your medical team.

AP is yet another choice, it isn't the only choice people have.

I have been using AP for 5 years now & apart from a few little twinges now & again have been pain free - yes pain free - for about 3 yrs now; so for me AP is working.

Rheumatologists the world over are very quick to say that anything other than what they believe is quackery .. that in itself is a silly attitude & clearly they are ill-informed; surely all doctors would agree that if a treatment path works for their patient then that's a good thing.

The general medications given to RA patients & those suffering similar diseases only if you are lucky take away the pain - the disease itself still rages underneath it all.

There is no cure for RA; every opinion is worth listening to; make your own choice about your own treatment path.

Please stop infighting it doesn't help !!!
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Date: 11.09.2013
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

Forgot to add

Have we all forgotten a nurse who discovered a better way for patients to be treated whilst they were waiting for relief / cure/ vaccines

Dr's the world over called her method quackery
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Date: 11.09.2013
From: ALICE

Subject: Re: ANTIBIOTIC PROTOCOL

I WAS DIAGNOSED WITH SERO NEGATIVE RA IN JUNE.THE MEDICATION ON OFFER IS JUST NOT FOR ME, SO BEGAN AP THERAPY YESTERDAY.IVE BEEN WARNED IT WILL TAKE SOME TIME, I MAY GET WORSE BEFORE I SEE IMPROVEMENTS BUT I FEEL THIS IS THE RIGHT CHOICE FOR ME.
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Date: 11.09.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Maz -

I hope you dont mind me asking if you do other things beside AP - such as diet, supplements etc?

All - Citrullination by periodontopathic bacteria

I have AS and fully buy-in to the Klebsiella (and other bugs) link to my diease and from that had seen it had been studied for RA also. But for me the diet side is as important as the bug side.

I have seen that they discuss a lot of detailed and technical stuff on the Roadback website and have a question as to whether anyone have seen recent research for the links for RA to peridontal diease and gingivitis. Plaque on teeth / gums is a bacterial biofilm.

Recently I have been reading a lot (too much!) about immune tolerance and citrullination of proteins. I have read that multiple proteins (and parts of proteins) can be modified by an Enzyme called PAD1 that exists in some bacteria (gingivitis being one). This process leads to something they call "epitope spreading" which causes cross reactivity to other and self proteins.

Here is a recent study suggesting gingivitis bacteria as the initiator of RA -

http://onlinelibrary.wiley.com/doi/10.1002/art.27552/pdf

Apparently it is similar to how TTG works to create Celiac disease. Where we know that the removal of the antigen (gluten) halts the disease!

This is interesting - 100 years between these two articles!

1) Peridontal Therapy reduces the severity of RA - very recent

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2884010/

2) Fascinating 1918 record of treatment of RA with extensive Peridontal Therapy

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2066488/pdf/procrsmed01157-0118.pdf
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Date: 12.09.2013
From: Linda

Subject: Re: ANTIBIOTIC PROTOCOL

Good luck Alice.

Who was the nurse Maz?
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Date: 12.09.2013
From: ALICE

Subject: Re: ANTIBIOTIC PROTOCOL

NO LINDA,A DOCTOR IN THE SOUTH EAST.
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Date: 13.09.2013
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Linda,

Elizabeth Kenny (20 September 1880 30 November 1952) was an unaccredited Australian nurse who promoted a controversial new approach to the treatment of poliomyelitis in the era before mass vaccination eradicated the disease in most countries. Her findings ran counter to conventional medical wisdom; they demonstrated the need to exercise muscles affected by polio instead of immobilizing them. Kenny's principles of muscle rehabilitation became the foundation of physical therapy, or physiotherapy

At the time every doctor called her a quack!

Amazing how her treatment started the foundation for physical therapy.
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Date: 13.09.2013
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Sean,

Yes diet plays a big part in RA & similar diseases in particular

dairy, sugar, wheat, gluten & nightshade vegetables

I happen to love a glass of milk & although I gave all of the above away some time ago one day I just fancied a plain ordinary glass of milk; the result was excruciating pain within 2 hrs of drinking the milk ... I won't ever make that mistake again.

Apart from AP I watch my diet & don't take any supplements.

There is a lot of information from a variety of rheumatologists and others who advocate watching your diet - I suggest you check out some of the websites.

Good luck M
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Date: 13.09.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Thanks Maz

I have seen your posts on roadback for a long time - and thought that you used diet change as well as AP.

Quick question - is AP a forever treatment or do some people ever eradicate the bugs to the point that they can stop treatment?

I've been gluten free for twenty years - I avoid wheat & corn like the plague (even glucose syrup) - my body tolerated 100% rye and oats for about 5 years and 15 years respectively. Cows milk effects me too - with my other restrictions I allow myself some milk chocolate and sometimes a dash of cream on deserts - too much and I get skin flare ups / eczema behind my knees and especially on my eyes with horrible flaky dry eyes / lids for about a week. I take some supplements regularly.
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Date: 13.09.2013
From: rhona

Subject: Re: ANTIBIOTIC PROTOCOL

This question is mainly for Sean & Maz - can I ask when you first decided to try diet and AP to treat your diseases? Did you try conventional treatments before deciding on it? and also how bad were you?

I think if diet and the AP works for you then that is fantastic but I am wondering if you just had mild symtoms of the disease? I do not mean to be disrespectful - just curious.
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Date: 13.09.2013
From: Linda

Subject: Re: ANTIBIOTIC PROTOCOL

Thanks Maz.

I am also gluten free. It has helped no end with IBS. I find it much harder to be dairy free although I try to avoid it as much as possible.

I also take LDN which I have to get prescribed by a private doctor. It balances out the immune system. It has also helped a lot. It's certainly not a cure, but I have been taking it for a few years and haven't had to see a doctor for anything other than routine appointments since starting it. Some of my symptoms have subsided.

There's a very good article in the Daily Mail today Sean about gut bacteria. I know it's the DM and it's mostly about mental health issues, but it's still quite a good article.
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Date: 13.09.2013
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Rhona - I think I am one of the lucky ones where my disease modified enough from a diet change to not need any drugs or AP.
I'm a really sceptical and cautious person and at about age 19 when I went to the Burghwood Clinic in Surrey I wasn't ready to try and resolve my pain by this unorthodox approach.
Soldiered on for some years - stiff and sore back, hips - limping, migraines, burstitus, feet pain, incredible lethargy in a denial state where I had known the brief benefit I had got at 19 but was not mature enough to invest in it . I used to come home from work and sleep and needed to lie on my front to alleviate the pain and the gradual stoop from the stiff back (my dad lost 4 inches in height with his AS, 2 hip replacements, ruined skin from radiation treatment) - when your 5ft 8 to start with I didn't want a permanent stoop. I did sauna , massage, pain killers, exercise but no other meds.
At about 26 whilst still going up and down - but gradually down I went to a naturopath in Canterbury - I was reminded of what I had already been told years before and given a stern talking to by an incredible lady that had been a nurse! No sugar, no coffee, no red wine , no wheat, no milk, no corn - she gave me Magesium, Zinc, calcium, selenium an Manganese.
Within a month of being strict - I was almost in a state of remission with just residual damage and stiffness - inflammation had gone on holiday. In the last 20 years I would say I've had only 1 or 2 short bad spells where something's gone awry. I am not cured but my disease is very much under control. Have stopped taking ibuprofen for any headaches (or hangovers!) to keep my stomach in tact.
Sorry for the long post but that is why I'm a believer - proper sites like Roadback, NASS, KickAS has so many others like me and have reinforced what I do and have led to me wanting to know the detailed mechanisms behind the healing and disease.
BTW - if anyone wants a really good understanding then there is an amazing website by a vet called Dr. John Symes (Dogtorj.com - food intolerance in pets and there owners)
No judgement to anyone that has tried and not found benefit from diet change or needs drugs for pain - I am fully aware of what pain some people with arthritis are feeling. As Maz said very eloquently we don't need to argue the rights or wrongs if any treatment, let's help eachother. With so much confusion we look to authority - our rheumatologists and their knowledge. Which again is understandable.
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Date: 13.09.2013
From: rhona

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Sean, I must say, I do admire your determination and willpower with the success you have had with the diet. I have had many ailments in the past, where I have chosen homeopathic treatments over conventional ones and they have often worked well. I also realise the big pharmaceutical companies are making a fortune with drugs for arthritis etc but I honestly don't know where I would be without some of the drugs as my pain at times has been so bad.

It is good to have discussions on the various treatments and to hear the success some are having with the diet and antibiotic treatment. As far as I know Sulphasalazine has a combination of antibiotic and aspirin in it so antibiotic therapy may well be successful for some.

I am twelve years down the road with RA and I think it would be foolish of me the discard my treatments, that seem to be working well at the moment, albeit they are not ideal.

I do wish you well and hope that you stay in good health and pain free.
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Date: 19.09.2013
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

Hi again,
Must say to those who follow 'roadback' please don't confuse me with Maz who is the very knowledgeable volunteer on the Roadback .. which is why when I am on there I sign Maz.aust so people know who is who.

In answer to the quesion, I decided not to use any of the traditional medications(even though I had scripts for them)-- I wanted to find something that I considered to be a litle less likely to destroy my own immune system which is why I researched & finally found the 'roadback' & AP. This journey took me 4 mths. Then I had to find an AP dr here in Oz and lucky for me the best in the country happened to be 10 min from home. After 4 weeks of testing I finally started on AP. It was my AP Dr who initially told me of the value of diet and how it played in the treatment.


I cut out dairy, sugar & gluten straight away & my AP a few weeks later. Slowly the pain eased and lessened & finally 2 yrs later I was pain free.

I can't say it is an easy road to take but it is certainly worthwhile for those of us who chose to try it.

There is no rush with choosing a treatment path, RA doesn't disappear, you can take your time to research & finally make an informed decision.

What I personally found interesting is that my other Dr who didn't think AP would work but tracked my progress now offers AP to his new patients - all because of my persistance & progress. Isn't that great!! a Dr who gives his patients 2 kinds of treatment paths & lets the patients make their own choice.

I can honestly say I well remember those days & nights of continuing excruciating pain that even morphine didn't ease .. I don't want to ever be in that situation again.

Not that I want to but if I have to take AP for the rest of my life it's ok - I am after all pain free!

Good for you Sean in bringing AP into discussion again.

Cheers, M
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Date: 19.09.2013
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

ps - no offence taken Rhona

The rotten disease had taken my life, I had to give up work, driving etc etc & when I flared which was when the disease decided to flare & not by a calendar I was in excruciating agony for 3-5 days & nights 24/7 & even morphine didn't ease the pain .. I just rocked & cried & wished I was dead (not seriously dead though.lol)

So yes I had a problem & needed to find an answer I could deal with .. I started out just wanting to get rid of the pain & actually found a treatment path I could deal with. I am very lucky!
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Date: 19.09.2013
From: Kerry

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Maz, Ive just started AP and have been prescribed 100mg of Minocin M/W/F. What protocol are you on and how long have you been on it ?
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Date: 26.09.2013
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Kerry,

100mg mino M/W/F is the general protocol used by most.

I am in Oz & firsly the mino we get here is not the same as you get there & my AP Dr (as I call her) believes there are co-infections & treats us a little differently.

eg I am currently taking 5ml Amoxil forte syrup, 150mg Dalacin C, 250mg Klacid & 250mg Biasig M/W/F ..

It took quite a long time to get the meds & doses right for me because my body becomes accustomed to meds quite quickly as well as getting rid of toxins as soon as it can .. so every 3 months we had to tweak either the med or the dose because the meds were not working at the optimum effect; eg I find for me if I forget to take my penicillin I soon know about it.

It would be nice to just be taking mino - you are so lucky!

I have been on AP since Jun 2008
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Date: 17.10.2013
From: Kerry

Subject: Re: ANTIBIOTIC PROTOCOL

Interesting read regarding antibiotics for back pain on nhs choices www.nhs.uk
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Date: 06.12.2014
From: burba

Subject: Re: ANTIBIOTIC PROTOCOL

Does anyone know what has happened to road back? It has disappeared.
burba
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Date: 06.12.2014
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Oh not sure burba :-( I was on the site the other day and everything was okay. Maybe a technical hitch for the moment - think this did happen once before if I remember rightly. Hopefully, will be back up and running very soon. Best wishes xx
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Date: 08.12.2014
From: Jackie

Subject: Re: ANTIBIOTIC PROTOCOL

They are in the process of launching a new website. Should be up and running shortly.
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Date: 08.12.2014
From: Caz

Subject: Re: ANTIBIOTIC PROTOCOL

Roadback now up and running again. I think it was just a glitch but I do know a new forum is on its way.
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Date: 08.12.2014
From: Patricia

Subject: Re: ANTIBIOTIC PROTOCOL

Brilliant - thank you Jackie and Caz :-)
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Date: 09.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

It is an undertreated infection. Marfams lupus RA reuynards pandas scleraderma!!! ALL INFECTIONS. THEY PLAN TO MANAGE NOT CURE. PENICILLIN VK VIA I.V. IS THE ONLY WAY TO PENETRATE THE BONE. MINOCYLINE WAS DR BROWNS WAY OF 'SELLING' HIS THEORY SO AS TO GET HIS TREATMENT OUT THERE WITHOUT CURE. NOT BROWNS FAULT JUST THE $30 Billion PLUS THAT THEY MAKE OR WOULD LOSE WITH A CURE. I HAVE TONS OF EVIDENCE DATING BACK TO 1928. ALL THESE DISEASES ARE THE MODERN EQUIVALENTS TO SCARLET FEVER, WHICH DISSAPPEARED????! 'ITIS'=inflamation. Why? Dont believe what they say about 'resister' or 'Zombie' cells. This is a mask so they can 'pave the way' for 'control' 'manage' the 'dis-ease'. If they wont give the high doses it requires or wrong or short courses of antibiotics it will appear that they resist. It has more than occured to me that it is not the use if antibiotics that creates resistance INSTEAD it is the inadequate doses they are planning to use.
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Date: 09.03.2015
From: NAT

Subject: Re: ANTIBIOTIC PROTOCOL

What on earth are you talking about ? I happen to have reached remission from RA on Minocin alone, and am now completely drug free, thanks to a 12 month course. Penicillin VK is not the correct antibiotic to use on this protocol.
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Date: 09.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

....and do use. Macular disease tooooo. Bacteria causing the inflamation in the blood vessels. Vascul'itis'. Macular Disease? Another incurable? No. Please people spread THE CORRECT VERSION of this dark issue. I AM DESPETATE TO SHARE WHAT I KNOW. BUT HOW MANY OF US WILL GET OUR HANDS ON I.V. ANTIBIOTICS TO IRRADICATE THE BACTERIA AND/OR MYCOPLASMA.
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Date: 09.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

Thats wonderful!!! Minocin (ledrele) thats as good as it gets and that's the only one for best penetration that they will allow us. MONEY TO BE MADE. LONGER TREATMENT PLANS ARE THE PLAN. MONEY. PLEASE PLEASE.... WHERE HAVE YOU MANAGED TO GET MINOCIN FROM? UK? RHEUMATOLOGIST? Please I dont wish to offend but I have been studying all of these above deseases with respect to stretococcos b staphylococcus and mycoplasma. They cannot lose the billions and commerce created by rheumatic disease. We are stronger than we used to be. Scarlet fever? Where did it go? What was it?
Please where are you getting minocin from??? X
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Date: 09.03.2015
From: Julie

Subject: Re: ANTIBIOTIC PROTOCOL

what has staphylococcus got to do with RA?
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Date: 09.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

Its one of the many bacteria that are responsible for the assault on your immune system X
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Date: 09.03.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

I've leaned something new - just reading up a bit, Staph bacteria also has binding capability to HLA-DR2 gene - so I believe that RA could be caused by Staph as well as the usual Mycobacterium, Proteus Mirabilis suspects for molecular mimicry.

https://books.google.co.uk/books?id=lo4NU5-tDP8C&pg=PA28&lpg=PA28&dq=staphylococcus+aureus+mimicry&source=bl&ots=QpYJb2cVB0&sig=6EPq0yRVShrodzNSjFcdbNaTYsw&hl=en&sa=X&ei=zA3-VPKJHcSBUbivhPgH&ved=0CEMQ6AEwCQ#v=onepage&q=staphylococcus%20aureus%20mimicry&f=false

I know how nasty and stubborn Staph can be after having a skin infection many years ago - but have just read that it is one of those infections that can lay dormant - seemingly subclinical.

I don't agree that bacterial antibiotic resistance is directly linked to auto-immunity - but I can see that bad use of antibiotics can cause resistance.
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Date: 09.03.2015
From: Colin W

Subject: Re: ANTIBIOTIC PROTOCOL

Sean , think you are a lot closer to thinking its something to do with stomach problems

I think mine is something to do with cadmium paint causing a autoimmune reaction , there is research into Lead & other metals in Sweden causing RA , somehow in all these conditions our autoimmune has been compromised ,
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Date: 09.03.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Hey Colin

Found this -I think it's like a domino effect - "Chronic exposure to cadmium alters gut immune homeostasis" - from 2014 !

http://www.jimmunol.org/content/192/1_Supplement/198.11

Cadmium ruins the gut bacteria and leaves you prone increased intestinal permeability

They suggest Cadmium ruins the gut bacteria and leaves you prone to increased intestinal permeability.
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Date: 09.03.2015
From: NAT

Subject: Re: ANTIBIOTIC PROTOCOL

I got the Minocin from a consultant at a private clinic in the UK. The clinic also provides and administers IV antibiotics if required. There are several clinics in the UK that provide this treatment. My doctor, like many others in the UK believes that bacteria is behind the majority of these diseases. May I suggest " us " that you take a look at the Roadback forum , there you will find a list of doctors and information on this subject.
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Date: 09.03.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Here is the full study -

http://www.biomedcentral.com/content/pdf/2050-6511-14-62.pdf

I also read that the anti oxidant Selenium has a protective effect against cadmium. I takes selenium and zinc supplement regularly to combat lead and mercury.

Food high in selenium are Brazil nuts.
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Date: 10.03.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Correction to my earlier post...

HLA-DR2 is a lower risk for RA - but both HLA-DR2 and infection with Staphylococcus are associated with autoimmune disease - with MS being the main disease studied in respect of these 2 factors.
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Date: 10.03.2015
From: Colin W

Subject: Re: ANTIBIOTIC PROTOCOL

Sean , that is very interesting , dont understand totaly what they are on about but will stick mosty to the conclusions they give ,

my problems started in 1989 & had problem with cadmium paint & having a allergic reaction , had couple weeks off hols & when went back developed Occupational Asthma , had a lung capacity test done the year before & was 25% above normal , we did use a lot of resins ie: phenol , formaldehyde , Urea , Isocyanates & Colophony/Rosin , in the Foundry we cast Irons , Steels & Bronze , very little Lead & sometimes Aluminium .

I was away from the work place for a year but was forced to return , part legal reasons & because of my qualifications but started to develop RA 4 years later , just think alot of us got reasons to think what has started our problems with our immune system
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Date: 10.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Nat. Oh yes. Ive just recieved my copy of the road back. My huge stack of pubmed and many more had a more dramatic effect on my usual gp. Produced the book to a less favourite gp yesterday. They sniggered. I nearly lumped her with it. Not really. To quote the book on page 90..'Tom Brown's original insights into the mechanism and treatment of this disease are reproduced in this edition 'as well, exactly' as they first appeared. I wish I didnt ask so many questions. But being a 37 year old vegetarian with zero arthritis or macular disease in the family, 10 years post hospital infection, a doctor made a joke to me about my two 'age related' diseases, and the humongous penny dropped! Every question I asked in my research after that? Bingo. My gp is refusing to refer me dispite Birmingham, Queens Unit saying get referred to us. If it wasnt for the macular disease I probably wouldnt have been so determined to find the answers in documents before I discovered the dear Dr Brown. 50% of the population will get macular disease in 50 years time. Another 'manageable' incurable? disease. God the medicine industry is sick!
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Date: 10.03.2015
From: sleekfox

Subject: Re: ANTIBIOTIC PROTOCOL

Colin, I used cadmium paint for years, buckets full of it. I'm pretty convinced it is the cause of my RA, particularly because I am sero -ve. Doctors don't really know so are reluctant to discuss with me.
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Date: 11.03.2015
From: sean

Subject: Re: ANTIBIOTIC PROTOCOL

I saw a program on TV last night about Narcolepsy in children - and as usual before the outcome was saying that it was probably gut infection or autoimmunity related.

They are now sure that the vaccine for Swine Flu caused these children to develop autoimmunity against their own brain. So a dead non live "infection" also caused an antibody response that lead to autoimmunity.

We delayed our sons MMR to age 3 based on the 1998 scares - I think that some of Andrew Wakefield's concern on Autism and MMR vaccination will one day be be proven!

Not as the ultimate cause but along with specific genes a contributing factor - 80% of Autistic children have gut dybyosis / and or Crohns!
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Date: 11.03.2015
From: Colin W

Subject: Re: ANTIBIOTIC PROTOCOL

Sean ,
my son had the MMR at secondary school when he was 11 , within a few months they gave the kids TB vaccination , within a month of this he became ill & developed fibromyalgia

as for Andrew Wakefield's research , why did those kids have measles vaccine living in there gut , there was research in Japan & USA to back this up , the british goverment answers was to ban parents getting the single vaccine & forced to have the MMR

sleekfox I remember before you said you worked with cadmium paint , dont think we can ever prove it & given up trying but think there has to be a link ,
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Date: 11.03.2015
From: sf

Subject: Re: ANTIBIOTIC PROTOCOL

Sorry I forgot I'd mentioned it before :)
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Date: 11.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

seronegative... if you don't have Rh factor (your not genetically pre-disposed to Rh (apparently, but remember they know nothing they say). If we do have the Rh factor we are more likely to be fobbed off. From what I understand being seronegative points us even more directly to the true cause. Depression, repressed immune system, bacteria gain access.
People may want to have a little looksy at the Vegas Nerve. Fascinating read. If we do not breathe deep and long enough this cranial nerve in the top of the abdomen simply will NOT be stimulated. Without this our electric circuit (essential to trigger our immune system) is completely unable to send out the cytokines (healing ability). I am sure so many of us are bad breathers and have been during harsh times, I know that i have had a habit for probably most of my life, I too often hold by breath when stressed/depressed overloaded subconsciously reckoning that i may be able to stop time or my troubles and make it go away in some way for a moment. Then I found out about the Vagas Nerve when i was looking at 'What triggers the immune system?'.
I add this to this forum because I think you all could benefit straight away from this. Send the right signals to trigger our immune system As a result I am trying to break the habit, and have found it an amazing (apparently healing! Read up..) tool to aid sleep. Breathe........ a propper inhalation should take 5 seconds.....
Best to you all X
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Date: 12.03.2015
From: NAT

Subject: Re: ANTIBIOTIC PROTOCOL

Candida Doyle, the keyboard player in the band Pulp has rheumatoid arthritis. She claims that a breathing technique called Buteyko helps her.
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Date: 12.03.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

My personal view on AP - is that AP works by two mechanisms

1) It will change the balance of gut bacteria allowing certain species to thrive and others to wane

2) It can also remove some species of gut bacteria to which the body has developed anti-bodies to - such as mycobacterium or proteus mirabilis. It can also limit species that disrupt immune regulation such as prevotella copris - and gingivitis (which causes protein citrullination)

The body will not stop attacking itself though until the memory b-cells that were trained by the immune system are deactivated by the lack of the original antigen.

Ultimately though AP does not resolve the cause - it removes the antigen to which the immune system is overreacting to - a bit like removing a food allergen.

The cause itself was the leaky gut - which in turn is caused ironically by antibiotic overuse in out mothers, limiting our own gut flora when we were born (cesarean birth!), then further antibiotics as children, bad diets which then lead to further bacterial dysbiosis and lead to an influx of microbial fragments and citrullinated proteins through our unregulated leaky gut wall.

Anyone undertaking AP that is lucky enough to achieve remission - but does not address the original cause and reseed their gut to balance their immune system will probably risk relapse.

My diet limits my leaky gut - but we cannot make it 100% non leaky as pathogens, unknown food sensitivity and as "US" said stress through the vagus nerve can also trigger gut changes that are harder to control - I like the deep breathing idea!

My advice is -

- Fix what you can
- Limit the causes
- Hope that that reduces the symptoms
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Date: 12.03.2015
From: NAT

Subject: Re: ANTIBIOTIC PROTOCOL

Sean I agree with what you say and after reaching remission on Minocycline alone, I am now focusing on my diet. My doctor is an allergy specialist, and he too believes that diet is at the forefront of these diseases. I suffered as a child with many bouts of Strep throat, I think there is a connection there too. My Doctor has many patients on his books that have reached remission and have maintained it for many years. He believes the disease can be permanently switched off.
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Date: 12.03.2015
From: Anne

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Sean, I am very impressed by what you say even although I don't understand it all. I wish they would tell people more about diet and some of the things that can attribute to auto immune diseases. I also think there is a genetic factor and then it takes something to trigger it. If there was a straight forward diet I could follow then I would gladly do it to get off some of the drugs I am on. I do believe the B cells are important in these diseases. How do we deplete them with diet?
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Date: 12.03.2015
From: Anne

Subject: Re: ANTIBIOTIC PROTOCOL

Perhaps I should have asked how we deactivate the b cells rather than deplete them.
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Date: 14.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Nat... is it possible to mention to me the name of your doctor, and where he practices? Doctors like that seem to be 'hens teeth' within the NHS. Being an NHS patient I'm aware that I have to make this a 'Patient lead' pursuit! And have made this clear to my GP (though he is still digging his heals in. I would not want to bother your doctor whatsoever directly but I would love the name of a doctor for my GP to refer to, who believes as you say 'It can be permanently switched off'. I would only want it for this purpose.
Bless you all, best wishes, US xxx
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Date: 15.03.2015
From: NAT

Subject: Re: ANTIBIOTIC PROTOCOL

Hello us, the list of doctors can be found on the Roadback forum. I doubt your doctor will refer you as this treatment is controversial and the NHS and N.I.C.E haven't approved it, although the American college of rheumatology after the M.I.R.A studies do. All the information you need is on the Roadback forum. If you choose to treat this disease with AP you have to be very well informed and dedicated to sticking with it as it isn't easy, but it is well worth it in the end.
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Date: 16.03.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Anne

There are different types of B cells - there are those that were created by our immune systems in response to the "original antigen" in the case of Celiac the original antigen is gliadin in wheat - in AS (my disease it is Klebsiella bacteria) - In RA is is almost certainly bacteria also.

Then there are "cloned b cells" that are made to seek our the original antigen and also will bind to tissue that share the same amino acid DNA sequences as the original antigen.

Remove the original antigen and the body does stop creating cross reactive antibodies - hence remission from Gut issues, brain ataxia and skin conditions and even arthritis all that exist in Celiac due to Gliadin!

This is called Molecular Mimicry. This is explained in RA as the most similar tissue to proteus mirabilis bacteria in those with the genes for RA is the connective tissue in the hands.

There is also a phenomenon called Epitope Drift - which is where the B Cells clone to attack similar Amino Acid DNA sequences.

The Thymus should eventually be capable of weeding out the Cloned B Cells that have an affinity to attack our own tissues - this is called "Clonal Deletion".

So there are two aspects related to diet -

1) Diet and keeping gut permeability as low as possible can stop entry of the original antigen (bacteria in RA such as Proteus Mirabilis, E Coli). Gliadin in wheat cause permeability for everyone.

2) Nutritional status (Vitamin D, Zinc etc) can enhance the Thymus ensure that it performs its role - Wheat germ aglutinnin WGA also binds to Thymus and can weaken the immune system

Remission is removal of the original antigen for long enough to allow the cloned B cells to get deleted as they are no longer required - as the request for cloning only comes from a high stimulation of the original antigen.

The SUPER memory B Cell in relation to the original antigen will always be there unless it is killed by drugs like Ritixummab - or reprogrammed using immunotherapy.

In this respect thee diseases are otherwise incurable.

This above explains why AP therapy works and why No Starch works to remove Klebsiella in Ankylosing Spondylitis.

BTW the gradual build up of CCP is a further load on the immune system - again these can be linked to dietary entry through intestinal permeability.

NSAIDs - get rid of pain (sometimes) - BUT make the gut more permeable in the long run
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Date: 16.03.2015
From: Anne

Subject: Re: ANTIBIOTIC PROTOCOL

Thanks for all that information Sean. I didn't know that we had different types of B cells, that is very interesting.

It would make sense for the doctors to try us on AP Therapy and diet at the beginning to see how effective it would be for us and so much cheaper than all the drugs.
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Date: 16.03.2015
From: Suz

Subject: Re: ANTIBIOTIC PROTOCOL

This is excellent information from Sean, I always tried explaining it like that to my consultant but never could get the right words. At least they are closer to getting to the cause by making a drug like Rutuximab.

Anne, Rosehip extract a fruit has had reports stating it gets rid of some white blood cells which are infact some b cells that irritate the joint tissues they come in caps or tablets.
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Date: 17.03.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Thanks Anne / Sue - I enjoy research and part of my life now, we think my daughter has gut problems and she has regular back pain :( so this is for her too... We saw our GP this evening and waiting for a referral to a Paediatrician


Just in case people want the detail.... here's some external references to cover what I have written above -

Paper on the shelf life of B cells (very technical, but in short it's the original antigen for which memory is held)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783194/


Type of collagen in small joints ie. fingers - where people carry certain genes for RA - cross reacts to certain bacteria - published in 1995, then again in 2014 - reviewed in detail in 2012

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005559/pdf/annrheumd00503-0060.pdf

http://www.townsendletter.com/June2012/autoimmune0612.html


A really good write up on bacterial cross reactivity in RA and relationship to dietary proteins - and two papers on RA and Proteus Mirabilis bacteria

http://gluten-free.org/hoggan/ra.txt

http://www.ncbi.nlm.nih.gov/pubmed/10342649

http://www.ncbi.nlm.nih.gov/pubmed/23992372


Link to a truly excellent article on Klebsiella, AS and permeability from grains - leading to link a theory on the fall of the Egyptians (this vetinary Dr. cured himself with a high protein, low carb diet)

http://high-fat-nutrition.blogspot.co.uk/2008/10/hla-b27-and-ebringer.html

An impassioned article from an Italian doctor (published in a medical journal in 1997) - this doesn't just relate to celiac - this is about HLA genes - "HLA system, the gluten peptide as a tolerable item, but, because of the similarity of some sequences of gliadin peptides with several pathogenic viruses".

http://www.enabling.org/ia/celiac/cul-wht.html


Wheat Germ Agglutinin (Thymus) - "Not without risks to man... leading to Thymus atrophy" -

http://www.ncbi.nlm.nih.gov/pubmed/8399111


This study says - ", the administration of NSAIDs may lead to loss of intestinal integrity, thus facilitating antigenic absorption and perhaps contributing to persistence of the disease (RA)." CAN YOU BELIEVE THAT THE FIRST DRUG THEY GIVE US DOES THIS - They are prepared to question the conflict here as it goes against the "first do no harm" medical code

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783194/http://www.ncbi.nlm.nih.gov/pubmed/6150232
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Date: 17.03.2015
From: Anne

Subject: Re: ANTIBIOTIC PROTOCOL

Thanks again Sean & Suz, I hope your daughter doesn't have any gut problems Sean but if she does then I'm sure she will be helped by all the great knowledge that you have about these things.

Have you ever thought of writing a book Sean? It would be good for people just being diagnosed to know that they don't always have to go down the route of harsh drugs and learning about diet changes and supplements could help a lot of people.
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Date: 17.03.2015
From: lois (marlene)

Subject: Re: ANTIBIOTIC PROTOCOL

Sean, sorry to hear about your daughter. I hope the outcome is good for her. I am sure being so well read you will give her all the best advice possible.

Take care x
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Date: 27.03.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

Sean, this subject is massive, covering so many labeled diseases. But that is all they are, labels stuck over the truth. I am so glad you are on here. I want to speak to younger than say 50 year olds (well below the 'age-related' excuse!) who suffer with any kind of rheumatic disease AND macular disease. They predict 50% of the population will have macular disease in 50 years. Sadly the link and research has been done and the same result was found. Inflamation caused by infection. I told my gp stright yesterday that the theory of zombie or resister cells is utter nonsense and a concept to derail the truth, to quote him, 'I couldn't deny that'. !?
Hi Nat, I am delighted to say I have 'instructed' my G.P. to refer me to the Queens building, Birmingham (a new facility specialising in 'Rheumatology' with the intent to identify and potentially treat an infection. I did ring Queens before I asked to be referred. Queens said, based on my seronegative symptoms I had every right to be referred. Great. I also read that they can't deny my request for infection investigation with possible antibiotic treatment if it is 'patient lead'. I informed my doctor that I knew this, assured my doctor that 'indeed I will be driving this and HEY PRESTO he smiled and said righto, ok! And then I thanked him for going on this journey with me. I hope and pray I do get to see an AP Rheumy with a passion for this subject. Blind and crippled ? No Thank You.
Bless you all, and PLEASE any one know anyone with dry macular disease under 50 who also suffers from apparent rheumatism?????????

Also..? Someone needs to speak to the Scleraderma community... I'm a bit slow (tired) these days, took me this long to think to look on a Scleraderma forum to see if antibiotics have been mentioned? It was heartbreaking! I came away shocked. (I lost my childrens Grandmother to Scleraderma 3 years ago, before this revalation) The only mention of antibiotics was scoffing at the idea. So I didnt dare. But what seemed so sad was there were so many current posts relating to members who had passed away having only had the disease for such a relatively short and agonising time! They were so scared and traumatised I couldnt see how 'me' with my diseases, could dare to tell them there was a cure for it! I believe so strongly about this subject as I came to my conclusions without the aid of the internet due to the sudden onset of two devastating 'UNLINKED'?? age-related diseases at the age of 35 after a terrible hospital staphylococcas infection. THEN I started asking questions and it was all 'out there'.
BLESS DOCTOR BROWN & the many many studies, statistics and testimonials (including the macular disease research heading to the same conclusion, but trying to 'manage' not cure a damn thing.
Does anyone feel brave enough to tell the scleraderma sufferers about doctor brown without coming accross as Quackers!??
Macular disease & Rheumatic disease anyone????
Love you all x
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Date: 22.04.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

Where has everyone gone??
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Date: 22.04.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Hi there us... as you say it's a big subject

You might be interested in this -

http://www.sclero.org/medical/symptoms/associated/celiac-disease/a-to-z.html

based on this it looks as though the official Sclero website is possibly ahead of the arthritis community in some respects.

It says..

"Gluten sensitivity and Celiac disease are a known cause of scleroderma and dozens of other autoimmune diseases."

Not something you will read on most "official" arthritis websites.

This slideshow also talks a lot about combined approach to scleroderma - and it mentions use of SCD (Specific Carbohydrate Diet) to counter SIBO.. but says that many will need antibiotics initially. It is fully referenced at the end :)

http://www.slideshare.net/maushard/sibo-and-scleroderma-handout
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Date: 07.05.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Found this on my travels around the web... food for thought

Minocycline in Rheumatoid Arthritis: A 48-Week, Double-Blind, Placebo-Controlled Trial

http://annals.org/article.aspx?articleid=708353

It says.... "reduced RF levels" so they must have been sero-positive and it concludes

"Minocycline was safe and effective for patients with mild to moderate rheumatoid arthritis. Its mechanisms of action remain to be determined."

"...it's mechanisms of action remain to be determine"!!!! - who cares if it works and it's safe and has few side effects? Lets have a guess - it killed some bugs in their guts and it helped reduce RA symptoms.

But you wonder if other antibiotics have a better / quicker effect - we have had anecdotal evidence from people posting on here before and I found this -

Antibiotic sensitivity Proteus mirabilis strains associated with rheumatoid arthritis.

http://www.ncbi.nlm.nih.gov/pubmed/9542782

This paper summarises as - Minocylcine being less effective; mmmmmmm?

"The P. mirabilis isolates from both RA patients and healthy controls were highly susceptible to norfloxacin, ciprofloxacin and trimethoprim, but less to minocycline. The urine of RA patients contained fewer different types of P. mirabilis strains than those isolated from healthy controls. ....... The presence of such strains provides evidence of a sub-clinical upper urinary tract infection with P. mirabilis in some RA patients. Therapeutic intervention in RA with relevant antibiotics requires evaluation"

Note sub-clinical - so no symptoms to treat. Proteus bacteria are know to be highly motile and can migrate from the Urinary Tract (and due to physiology this happens easier for ladies!) to the gut also - and form colonies there!

Independent researchers (not Professor Ebringer) followed up 2 years later with this very thorough study -

http://www.ncbi.nlm.nih.gov/pubmed/10342649

CONCLUSION:the results confirm that RA patients have raised levels of antibody to P. mirabilis not only in blood but also in urine and suggest that this arises because RA patients have an asymptomatic, non-significant P. mirabilis bacteriuria more frequently or more prolonged than control patients. This may be the trigger for their RA condition.

So perhaps they should not be using Minocyline for RA... but should be using norfloxacin, ciprofloxacin and trimethoprim
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Date: 07.05.2015
From: Kerry

Subject: Re: ANTIBIOTIC PROTOCOL

Sean its been posted before but Redhill Biopharma in Isreal are working on a triple antibiotic RHB104 to treat RA. I reached and have sustained remission on AP and that was on Minocin MR alone. I am now drug free but do take Astaxanthin , salmon oil and turmeric daily, plus Ive cut out red wine and bread.
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Date: 11.05.2015
From: Sean

Subject: Re: ANTIBIOTIC PROTOCOL

Just sharing... Read this -

Two classical clinical diseases associated with high titer RF (rheumatoid factor) are subacute endocarditis and RA. In subacute bacterial endocarditis the culprit is frequently a Streptococcus. Once the offending agent is removed (endocarditis) with successful antibiotic therapy, the RF disappears...
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Date: 22.06.2015
From: us

Subject: Re: ANTIBIOTIC PROTOCOL

Hi Everyone.. long time no GP play ball! Hey ho. They know all these diseases are triggered and caused by bacteria. Good one Isreal for treating their people instead of using their pain as a commodity. Minocycline. And they know it and we know it. Umbrella antibiotic that creates no resistance!!!!
Hope you are all getting somewhere in the getting hold of 3 years worth of Minocycline. Despite all my effort and research my GP is still finding humour in not being able to prescribe Minocin/Minocycline, quoting the 'must not cause harm before good' oath, while I continue to lose my sight with macular disease and become more crippled as my two young girls have to cope with me!
Go Go Go bacteria-mycoplasma-minocycline-bicarbonate of soda-borax.....!
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Date: 05.07.2015
From: Maz

Subject: Re: ANTIBIOTIC PROTOCOL

Hi all,

Long long time away from all forums,

I have been on AP now for 8 yrs and just recently saw yet another rheumy and after a couple of trials of mtx & arava (which I had a severe allergic reaction to) he actually advised me to go back onto AP---- yep what a great doctor, so unexpected!!!!

I only tried mtx & arava this year to try for the first time to stop any erosion (although I am for the main pain free most of the year)-- why I tried is a long story I won't bother you with.

Suffice to say I haven't felt better since resuming my AP meds.

The Roadback is a great website -- full of information & informed people just like all of us, I agree you should have a gander.

BTW: I have osteo and palindromic & a little rheumatoid arthritis and yep you can throw in there a little bit of lyme & fibro too.

No matter what you decide to do we will all support your decision.

Don't forget that sugar, dairy & gluten are the big 3 to stay away from as well, so look at your diet!
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Date: 11.06.2016
From: kellie rose

Subject: HOW I GOT CURED FROM MY LUPUS

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Date: 11.06.2016
From: zzzzzzzzz

Subject: Re: ANTIBIOTIC PROTOCOL

I googled this man he is amazing. He just about does everything. I believe in miracoils. (snores loudly).
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