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Date: 23.01.2014
From: MARILYN

Subject: FORUM

IM ON AP THERAPY, CAN I JOIN THIS FORUM ? I HAVE RA.
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Date: 23.01.2014
From: bsk

Subject: Re: FORUM

Anyone can joint Marilyn. Welcome.
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Date: 23.01.2014
From: Patricia

Subject: Re: FORUM

I am also on AP therapy Marilyn :-) I don't post much but love to read everyone's comments and encouragement....x
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Date: 23.01.2014
From: Emm

Subject: Re: FORUM for Patricia

Hi Patricia, I have got an appointment with Dr Sudahka at Darlington in February.

Can you remember you mentioned him to me?

Will see how it goes and will report back to you.

Hope you are well.
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Date: 23.01.2014
From: Suz

Subject: Re: FORUM

Hi everyone

Does the AP therapy work for R.A? I tried to talk to my consultant about it but he didn't really want to agree with it
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Date: 24.01.2014
From: marlene

Subject: Re: FORUM

Hi Marilyn and welcome.
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Date: 25.01.2014
From: Patricia

Subject: Re: FORUM

Emm - that is brilliant news you have an appointment with Dr Sudahka so quickly :-) I so hope it goes well for you! I will look forward to hearing all about it! My very best wishes.....x
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Date: 25.01.2014
From: Patricia

Subject: Re: FORUM

Suz - hi :-) Check out the Roadback Foundation Forum - lots of information there about the Antibiotic Protocol - and very encouraging and supportive forum too. It doesn't work for everyone but neither do some of the other drugs. Seems that lots of Consultants are 'against' it but have a read of the Roadback - there is a pack there that you can download and print off that you can show your Doc :-)
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Date: 26.01.2014
From: Sean

Subject: Re: FORUM

This study explains why AP works for some with RA and also covers why it affects women more than men -

http://www.intechopen.com/download/get/type/pdfs/id/19322

Remember this not UTI it is asymptomatic UTI where there are no obvious symptoms of infection.
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Date: 26.01.2014
From: Patricia

Subject: Re: FORUM

Wow - that is interesting Sean!! I have been on AP for about 2 1/2 years now gradually increasing my dose. I have had to remain on steroids alongside but have managed to reduce my dose to 7.5mg daily - which is a quarter of what I was taking. It is a long slow process :-( I really must work on my diet now - along the way have you come across anything specifically that works best - diet wise - for inflammatory arthritis?? I am reading dairy and gluten are the culprits but not sure I am convinced yet - probably because I don't want to give them up lol!!! Juicing seems to benefit many - but my feeling is diet alone can't make us well.... Would be interested to read your thoughts :-)
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Date: 26.01.2014
From: Suz

Subject: Re: FORUM

Hi Patricia,

I have read the book and been on the website ROAD back foundation after reading the book it does make a lot of sense in how the immune system has gone haywire and is damaging joints due to bacterial infection within the joint tissue. I showed the book to my consultant but wasn't very interested.

How is it helping you patricia? if you are on the AP and on steroids as well, maybe cutting out wheat and dairy from your diet might help the AP treatment to be more affective and you can come off the steroids, as bacteria likes to thrive off cows milk and inflammation loves wheat.
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Date: 26.01.2014
From: Sean

Subject: Re: FORUM

Hi Patricia

I agree that diet alone cannot cure arthritis - and I think most of us once we have an autoimmune disease will always be compromised in some ways. This is my slightly technical take on it all - covering wheat and bacteria

I was better for ages (perhaps 4 years) on diet changes and high doses of supplements - Magnesium, zinc, manganese and selenium - but then I got slightly less better but not as bad as my arthritis was in my early 20's. That's when I found the bacterial literature on arthritis and am now aware that it is both dietary proteins and bacterial proteins when they get in you blood stream causes a cascade that eventually breaks "immune tolerance".

Wheat avoidance for autoimmune diseases goes beyond any allergy that we might have - it is to do with the way our gut linings reacts - it's really well acknowledged now in medical literature that the "tight junctions" in the gut open up when presented with the wheat protein gliadin in all people - and most importantly it is not just in Celiacs that this happens.

This gut reaction is the same as when a bacterial infection occurs and lets your "inside" immune system in to the gut to attack something it doesn't like - the trouble is your gut is temporarily "leaky" and other protein fragments can enter the blood stream.

The immune system then has to deal with all the new stuff that comes through - and it's a chaotic lottery of what leaks in and our own genetics as to whether we eventually react to those things. In AS it is Klebsiella, RA Proteus, PsA Strep has been implicated.

I think i read that the RA marker for ACCA can be present 20 years before the disease starts - the immune system tolerates a lot leaking through but eventually cannot deal with the clearance of "apoptotic cells" and then bang! cross reaction. (The immune systems always makes some cells that recognise self - but are supposed to go through a process of cell death - apoptosis)

I reckon these proteins leak through in everybody - but some people either -

1) don't have the genetics to react to the proteins that are modified (well not straight away at least)
2) have a less genetically leaky gut reaction to gliadin or stress
3) have a gut bacterial balance that is protective ( again a lottery - as to genetics, exposure and antibiotics)
4) across all of the above is our immune system governed mostly by gut bacteria - which process and even make our minerals and vitamins

So a long way of saying what helps in diet - and it depends on genetics. But wheat is another matter when you are autoimmune :(

http://www.ncbi.nlm.nih.gov/m/pubmed/21794776/

http://m.gut.bmj.com/content/49/2/159.full

https://healthunlocked.com/glutenfreeguerrillas/posts/518018/the-battle-our-body-has-with-gluten-is-weakened-by-zonulin

http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=260902&page=1

BTW - you don't need to go without - my 12 year old daughter has made me fantastic chocolate cupcakes with rice flour this week - and I make fruit scones
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Date: 27.01.2014
From: Patricia

Subject: Re: FORUM

Wow Sean - thank you so much for your detailed reply - I really appreciate it :-) I have read many times about leaky gut and I know the natural health practioners always treat this with auto immune illness. Guess I am just going to have to try this to see if I can improve my health. I don't have any RA Factor in my blood or Anti Ccp but I do have auto antibodies to my liver and before the minocycline treatment raised crp and esr. The mini must be doing something because my crp at my last test was down to 4 (unheard of for me) and my esr was 22 (almost at my 'normal' of 20 before steroids). I still experience lots of pain and swelling in knees/ankles but I am guessing this could well be down to the diet now you have explained it - I also have osteoporosis/osteopenia because of the steroids so this could be causing problems. Are you saying there is a need to be wheat free or gluten free Sean?? How are you feeling these days?? I have to agree that we must be realistic - there will always be an element of illness because the auto immune switch has been triggered but it would be nice to be able to cut right down on the medications. Thank you once again for your time and patience. Very best wishes to you xx
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Date: 27.01.2014
From: Patricia

Subject: Re: FORUM

Hi Suz :-) Lovely to hear from you... In answer to your question I am still not well BUT I have been extremely unwell and my steroid dose is down to 7.5mg daily from 30 mg daily which in itself is a bonus! The minocycline is definitely doing something because I am able to drive/walk/meet friends again now which I couldn't do for quite a long time. I still have pain and swelling in knees/ankles - I take morphine for my pain levels - the minimum I can get away with. I did try two Dmards - sulfasalazine and Hydroxychloroquine but didn't get away with either of them and then came across the Roadback website. I am really sorry your Consultant wouldn't give it a chance for you because it can be taken alongside the more traditional meds too :-) I don't believe any of the other drugs would have helped me any better than the mino - that is just my thoughts for me - because I know only too well some people do benefit greatly from the more traditional route. How do you feel Suz?? Do you get any relief from your treatment plan?? Are you looked after well by your rheumatologist? I am very fortunate indeed to have a rheumatologist who will listen and he is very kind. With best wishes for you xx
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Date: 28.01.2014
From: Sean

Subject: Re: FORUM

Hi Patricia

If you were gluten sensitive.... Which of course you may not be but might be worth getting tested

I believe that Gluten Sensitivity apart from Celiac is linked to liver disease and liver failure. The malabsorption that arises is part of the osteoporosis link too.

http://www.theguardian.com/lifeandstyle/2002/sep/17/healthandwellbeing.health

Both osteoporosis and live failure linked to gluten sensitivity -

http://en.wikipedia.org/wiki/Gluten-sensitive_enteropathy_associated_conditions

This study questions that they should check anyone with liver diseases for Celiac -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309630/

The test required is anti-TTG antibodies and anti-gliadin

My initial diagnosis at about age 19 was a "doctor sitting on the fence" non specific, poly arthritis with signs of osteoarthritis in my spine! I used to come home from my work in my mid 20's with horrible pains in my back, hips and rib cage, with no energy and just curl up and sleep at 5.30.

I'm not cured but feel under control and have a handle on controlling any flare ups - and can usually link the flare to something such as overeating carbs (like too many home made mince pies at Xmas⛄) or stress or other triggers for me - foods like cows milk - excess sugar. My hips or lower back are always first to show any pain as happened just after Xmas - but I woke one morning after Xmas with less pain again and did a few miles run. Then my knees hurt a bit :0)

On the osteoporosis thing I saw on another forum that Strontium Ranelate may be limited or stopped in future due to side effects - I take a similar mineral Manganese that is supposed to assist bone formation and density and also enzyme function - so again back to the gut and absorption - there is a danger that a "silent" atypical gluten intolerance could prevent vital minerals from being processed. Even if your not gluten sensitive - we know that "gluey" gluten coats the walls of the intestine and prevents proper absorption.

What do the docs tend to do for bone density - they gave my wife's grandfather (95) calcium carbonate - chalk!

This is of course all theory - Take care, sean
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Date: 28.01.2014
From: Linda

Subject: Re: FORUM

I have osteopenia of the spine and hip. Osteopenia as I have learned, is a non disease as anyone over a certain age will have it. I was put under a lot of pressure, plus scare tactics from a hospital nurse and doctor to take a drug which will prevent osteoporosis. Having read the side effects of this drug, which are horrendous, I refused it.

Oddly enough my GP wasn't so keen for me to take these drugs either. He said they were controversial. I'd rather take my chances with diet and exercise.
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Date: 28.01.2014
From: Patricia

Subject: Re: FORUM

Thanks again Sean for all the information and links :-) I do genuinely appreciate you taking the time to do that. I will definitely go gluten free and dairy free - one at a time - to see what develops :-) It is certainly worth a try. I have eliminated all meat but do eat fish - I am also reading a heavy plant based diet is beneficial so looks like a complete re think for me lol. I have been reading also about the Strontium Ranelate and stopping these meds because of heart problems associated I think - although not all agree on this. I have just discovered a supplement called AlgaeCal Plus and a Strontium Citrate supplement that apparently promotes bone growth so I have just ordered a three month supply of the AlgaeCal Plus to see if that helps me. I will order the Strontium Citrate at a later date if I get along with the AlgaeCal. It seems to get good reviews and has had a study done with good results.

It must have been absolutely awful for you at such a young age to be so debilitated and in so much pain. It is very difficult for the Doctors sometimes I think if we are not showing much in our bloods to make a diagnosis - this is what also happened to me - but I also think that some 'alternative therapists' can rip us off - maybe not intentionally - I am sure at the time they genuinely believe they can help us but I have spent a lot of money visiting alternative therapists and not been any further forward. I do think doing our own research is the best way forward and sharing what we have learned, as you do, to help others :-)

It is good to hear that you have your health under control. That must feel good. It can't have been easy for you - when you feel ill the last thing you have the energy for is changing diet/research etc but you have done just that and I admire you for it.

Thank you again for everything. Take great care

Patricia xx
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Date: 28.01.2014
From: Patricia

Subject: Re: FORUM

Hi Linda :-) Yes, the drugs are very powerful. Unfortunately, because of the osteoporosis in my hip I have had to have an infusion called Aclasta which is a Biphosphonate. Thankfully my rheumatologist stepped in and I didn't have to take the Biphosphonate tablets because I am already taking enough meds!!! When I was osteopenic my rheumatologist didn't advise any medication either. Try to get a good bone supplement to help you. I have just discovered AlgaeCal - it is expensive and shipping is expensive but I am going to give it a try. They have a website and Facebook page you may want to look at. Alongside this they have a supplement called Strontium Citrate which is also apparently helpful. The reading of them both sounds good but I won't know how good until I get another bone scan which is in FIVE years time!!! Even if you don't want to take this supplement from what I have read it is Algae type calcium supplements that are more beneficial for us.

Take care

Patricia xx
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Date: 29.01.2014
From: Linda

Subject: Re: FORUM

Thanks Patricia. Will look it up x
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