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Date: 17.05.2016
From: Gill Clague

Subject: Treatment

Blood test revealed CCP and rf raised 95/100 approximately) I'm just wondering does everybody who has rheumatoid arthritis confirmed even if mild have treatment. ? What are the normal levels of CCP and rf. Thank you for all previous comments
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Date: 18.05.2016
From: Lemons

Subject: Re: Treatment

Hello Gill,

I was diagnosed with RA a few years ago and I declined NHS treatment and found an alternative.
There are other options in the UK.

Have you had a look at the Road Back forum ?
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Date: 18.05.2016
From: Colin W

Subject: Re: Treatment

Gill , there is a lot of good & bad information on the internet , there are alot of people with very mild RA that dont need any treatment ,

personaly trust your consultants as you will need them over the years & they are the ones that can offer you control of your condition & be very careful which websites you look at , the main Rheumatoid charites in the link section above & NHS site is realy the only ones you should trust

Arthritis Care has its own forum & alot more controled that this one , the guys promoting roadback are banned from it & tells you everything
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Date: 19.05.2016
From: Lemons

Subject: Re: Treatment

Colin I appreciate that the NHS has helped you but there are other treatments,
Not everyone ,myself included, wishes to treat their illness with immune suppressants.
There are doctors and highly regarded ones too , that offer alternative treatments.
No body on the Road Back promotes any thing . Its a non profit making charity.
Some members on there, take conventional medicine, no one is blinkered & everyone respects the right of individual choice.
I am also a member of the arthritis care forum and I am not banned .
I believe everyone should have access to all the information out there, good or bad.
Gill asked if everyone has treatment. I answered her question.
I have had treatment , but not the mainstream treatment.
It has proved to work for me and many others in the UK. It doesn't work for everyone but I am glad I had the option to make that choice.
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Date: 19.05.2016
From: Colin W

Subject: Re: Treatment

Roadback tells people to stop taking their prescribed drugs like Methotrexate & either change their diet to gluten free or take antibiotics which you wont get prescribed in the UK

as for antibiotics , most will help in lowering the immune system & think you will find clarithromycin works far better than minocycline but here in the UK you wont get either on prescription

as for diet , I have found alot of foods that make my RA worse & nothing that inproves it which is what those on Roadback claim , if you have problems with gluten then its pretty obv it will help but most dont , we know there is a link between what we eat & how the body deals with it , there are claims that people who have Gastric Sleeve Surgery have found there RA has improved alot & in the same way people suffering from cancer found their RA improved after taking methotrexate

personaly I would try most things if I thought it would help but be very careful what you read on the internet & trust
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Date: 19.05.2016
From: Lemons

Subject: Re: Treatment

Colin , the Road Back does not tell people to stop taking their prescribed drugs. That is simply not true.
They also do not tell people to change their diet.
They don't "tell" people to do anything.
The charity offers support and information to those that want it.
Thanks to the forum, I was able to find doctors in this country, that do treat these diseases with antibiotics.
Personally , I have never embarked on a gluten free diet. I love bread too much.
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Date: 19.05.2016
From: Sean

Subject: Re: Treatment

The way I see it is that there is are unpublicised alternatives within the mainstream that you have to dig for to find.

As to why some alternatives get no press - I feel that vested interested are at play.

As good comparison is the use of Ketogenic or a V Low Carb diet for diabetes management (or blood pressure / obesity / epilepsy) - proven to work well for 1000's and administered by a growing number of GP's.

I find it a bit sinister that Arthritis Care would ban people for talking about Roadback (or diet changes for that matter). I would say this is more than policing the forum it is protecting profits of pharmaceutical companies.

BTW - Again a similarity to the diabetes forums and charities - where they simply perpetuate the 'food pyramid', 'low fat / balanced diet' that got us it to this mess in the first place. Yes - British Dietetic backs diabetes research and yes Kellogs, Unilever, Coca Cola all have reps on the board of the British (and US and Australian) Dietetic Association.

As to suggestions that 'very mild' conditions can respond to alternatives - I could give people a guided tour of my back, rib cage, feet - show the xrays of bone spurs - the pain I was in at times! Diet changes worked for me.

As Lemons says - we all need all the information to be public and for all our doctors to be versed in this information.

If I see 100's of articles in medical journals that suggest that diet changes can work for arthritis for some people - and then the powers that be say don't bother trying.

Regarding diet - The most telling thing in recent years was an appeal from very senior mainstream practitioners as part of a Commons / Parliamentary Select Committee - it makes interesting reading as it highlights that even with this type of evidence from such senior medical figures they are left discussing whether to allow it to become 'mainstream'. Link below for the whole discussion - the end point is pretty useless and frustrating, I imagine a bunch of toffs haw-haw-ing.

www.fhf.org.uk/files/index2.php?id=6&download=true


The above article states these actual words from the Senior Rheumatologist and Senior Professor of Immunology, just a few years ago!

"We do not treat patients well. We give them anti-inflammatory medicine which is expensive, only partially successful and which has side effects. We could help a lot of people by suggesting they try an elimination diet and, if it does not help them, they could try the drugs."

The background was -

"Gail Darlington conducted a double-blind placebo study in which one group of patients were given a special tablet (the placebo) and one group were subject to a dietary intervention. Some 20%-30% of the group taking the placebo felt better: a strong placebo effect; while 70% of the patients on the diet felt better. There was no doubt that some foods were implicated, including some which had not been suspected, such as wheat. It took cumulative amounts of quite large quantities of the implicated foods for them to have an effect. In later studies, the results have shown smaller, but still significant, changes.

There is no doubt in Professor Brostoff‚s mind that food intolerance is associated with an exacerbation of RA in a proportion of patients.

RA is one of many conditions that can be exacerbated by some foods......

RA is one of a number of diseases that responds well to an elimination diet if you can be bothered to follow it; others include migraine, Crohn‚s Disease, asthma and eczema."

In this article linked above the 2 telling reason as to why they wont tell you are

"Is intervention useful if it is a great hassle to make the dietary changes required? .... You need to balance the challenges of a new diet against the reason for adopting it the severity of your symptoms"


1) DOCTORS ARE NOT TRAINED TO KNOW THIS STUFF
2) THEY DON'T TRUST PEOPLE TO HELP THEMSELVES
3) VESTED INTERESTS

Lastly - you cot just stop bread for a few weeks and say that diet did not work, it is part of a huge effort of elimination, testing and listening to your body.


When you are on drugs you cannot listen because the volume has been turned down.
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Date: 19.05.2016
From: Lemons

Subject: Re: Treatment

Sean, I am going to get a pen and write down the links. That was such an interesting post.
Shame you cant just click onto the links on this forum.
I have done an elimination diet. It was SO boring, but well worth it.
The food group that causes me problems is dairy.
I think this is quite common and I was relieved it wasn't potatoes as, crisps are my vice !
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Date: 19.05.2016
From: Sean

Subject: Re: Treatment

Lemons - here are few more good links if you are interested in this area -

This review -

www.altmedrev.com/publications/3/2/90.pdf

it lists the following foods as main allergens and cites other studies in to RA and diet - so doing an elimination could start with these and just eat everything else

dairy products
wheat
eggs
corn
chocolate
tea
coffee
sugar
yeast
soy
citrus fruits
pork
rye
beef
tomato
peanuts
barley
nuts
seafood

One fascinating link shows that they have been on track of this in some medical circles for about 100 years -

http://www.nejm.org/doi/pdf/10.1056/NEJM192409041911003

The medical journal entry from 1924 said - "It has been known for a long time that some foods can trigger arthritis in some people"

The same doctor went on 20 years later and did this study - titled "Study of one hundred and twenty-seven cases of arthritis (with notes on gastro-intestinal features)"

http://link.springer.com/article/10.1007/BF03011637

He noted in his study the following -

"The cutaneous tests for protein sensitization permit the selection of a diet which in most cases will relieve an arthritic patient of all or the greater part of his symptoms. This therapy is so simple and so readily carried out, requiring nothing more than a little self-denial on the patient‚s part that it deserves a trial in every case presenting arthritic symptoms."

So what Brostoff and Darlington did was not ground breaking - they are just reviving medical knowledge that is buried under drug treatment of disease systems - rather than research in to disease causes.
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Date: 24.05.2016
From: gill clague

Subject: Re: Treatment

Hi If you right click and highlight the www. web page then select copy > open new page on internet and paste into address bar this will takeevant web pages . hope this is useful
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