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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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Subject: Re: ANTIBIOTIC PROTOCOL

NO LINDA,A DOCTOR IN THE SOUTH EAST.

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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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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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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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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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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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Subject: Re: ANTIBIOTIC PROTOCOL

Interesting read regarding antibiotics for back pain on nhs choices www.nhs.uk

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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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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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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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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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Subject: Re: ANTIBIOTIC PROTOCOL

what has staphylococcus got to do with RA?

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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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