Feeling sorry for people here: Hi everyone. I try to... - NRAS

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Feeling sorry for people here

andyswarbs profile image
147 Replies

Hi everyone. I try to read the posts on this forum day in day out. But I find it very difficult. Everyone has problems but few seem to try to get to the heart of the problem and get a long term solution. I come away with the distinct impression that people here are unhappy with their drug regimes, some exceedingly unhappy but sadly content to stay that way.

As anyone knows from my posts I advocate dietary changes to help improve and fight RA. The approach I follow is the Paddison program, which is documented on this forum very extensively. (For anyone who does not know the Paddison Program leans heavily towards a very low-oil whole-food plant based diet.)

From where I stand, it is a plain fact that dairy and oils are very inflammatory and cause the gut problems, and dairy also causes osteoporosis.

I know not everyone agrees with my standpoint. Some people advocate an AIP or paleo-diet to help address RA issues which is almost at the other end of the spectrum from a whole-food plant based diet. But at least people doing a paleo diet are doing something about it!

Yes I know probably a lot of people here are actually trying to eat more healthily. Some have even tried eliminating foods that cause problems. But a key benefit of the paddison approach to elimination is its comprehensive nature. It gets to the heart of the problem rather than simply trying a "subtraction process". Oh, I gave up dairy and had no improvements...

I'd like to describe my concern with the "subtraction elimination diet" using a poor metaphor. Imagine you are flying in an aeroplane and it is very cloudy and foggy. You take one cloud away and rapidly other clouds fill that void. This void filling is not just other foods it is also particular drugs that actively damage the gut as part of the way they remove pain. The subtraction elimination process can work but also it can fail, and fail badly.

Also I am not saying give up the drugs, most definitely not.

What I am saying is there is a structured way to help remove pain via diet. Once pain and inflammation reduce then hard exercise becomes an option, and that also has very good anti-pain benefits.

I also follow other forums for people with RA. There a number of them on facebook, for instance. The posts by people on many of these forums are made by people trying to take ownership of the problem. RA is a horrible debilitating illness. I know because I have been down there & close to suicide because of it. I am crushing RA and also see plenty of other people on other forums improving their lives to a life reduced pain, reduced inflammation. So I implore people here to do try to find solutions that work for them. Getting out of the RA quagmire is possible. It needs determination, focus - and continually improving diet and exercise regimes - and I would suggest a forum where there is a stronger element of positivity towards crushing RA.

...With the best of intentions...

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andyswarbs
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147 Replies
Richgirl profile image
Richgirl

Hello Andyswarbs, could u let us know where to get on with the forums that are strong towards crushing RA? This will be a good thing for us all to get into. Thank you🌻

andyswarbs profile image
andyswarbs in reply to Richgirl

There are some very active groups on Facebook. Search for rheumatoid arthritis and you will come across them I am sure.

Also there are some that discuss turmeric for example. Just search for turmeric uk for one excellent group.

These are free and have no affiliation. Just an interest in fighting RA.

Richgirl profile image
Richgirl in reply to andyswarbs

Thank you Andyswards, I will be looking in to them today. I think it's great that we do all the research possible. How have you managed your pain & inflamation so far? 🌻

andyswarbs profile image
andyswarbs in reply to Richgirl

I do hot yoga as often as possible. As sceptical as I was before i started it has been amazing for my recovery. I have not been able to kneel for 40 years. Now I can get myself safely to and from the floor unaided and do some poses. Not very well but I do my best.

Richgirl profile image
Richgirl in reply to andyswarbs

That's great. Because I'm in a wheelchair I'm not going to be able to get on the floor. I'm going to look into Light Yoga to see & go from there. I did get my inflamation numbers down to normal through diet. But I'm trying to figure out some good exercises for me. So I'm just going to keep doing research. Happy to hear your doing well also.🌻

andyswarbs profile image
andyswarbs in reply to Richgirl

10 months ago I was in a wheelchair. My diet got me out of yhe wheelchair and 4 months ago I hobbled in pain into my first yoga class. It took 2 people to help me get to the floor and 2 people to get me up again.

Above all other yogas I cannot recommend bikram yoga highly enough. It is not cheap, costing me £99 a month. But it is totally effective.

Richgirl profile image
Richgirl in reply to andyswarbs

Wow!!! That brings me hope. My right knee is locked 80 degrees. i wonder if some how it could unlock naturally. The doctors say no. But I still have hope.🌻

andyswarbs profile image
andyswarbs in reply to Richgirl

My right elbow almost was 90deg. It is now 45deg. So yes there is hope.

Warning bikram yoga is not for the fainthearted. You go to work hard because that's what gets results.

Richgirl profile image
Richgirl in reply to andyswarbs

Yes it sound like it. hope I can do it. I'm going to look into it. But I may have to build strength up first.

andyswarbs profile image
andyswarbs in reply to Richgirl

Yes. I had wanted to start in September but I simply could not get out of the house without pain. That's when I stopped oils. A month later October 6th is a day etched in my brain: my first class.

I cried in that class. What was this elderly cripple doing here amidst lithe young women and men?

I said to myself I've done it once I can do it again.

Richgirl profile image
Richgirl in reply to andyswarbs

Oh wow. That had to have been hard. If it's not to tedious can u give me a one day example of your whole days diet?🌻

andyswarbs profile image
andyswarbs in reply to Richgirl

Yesterday I had porridge for breakfast. Left over lentil&veg stew. For dinner I had hummus and oatcakes with 3 very ripe pears.

Lentil & Veg stew: lentils, water, garlic, ginger, turmeric, black pepper, salt, mushrooms, sweetcorn, oh and some dried plums.

Hummus: chick peas, garlic, ginger, turmeric, black pepper, salt, cider vinegar, 1/2 lemon, tahini. Dressed with paprika & dash of olive oil.

nomoreheels profile image
nomoreheels in reply to andyswarbs

My h cooks his interpretation of the Spanish dish Lentejas. The ingredients are pardina lentils, chicken stock (he makes his own), carrots, potato (I don't respond negatively to them), leek, spicy chorizo (or hot paprika if we don't have one in), garlic, black pepper, a little olive oil & a bay leaf. Sound familiar? This is one of non-meat meals we include each week, from the Mediterranean diet you say is only fine for the average person. I'm one of many who are not an average person, I have RD & OA, diagnosed in a Mediterranean country eating a Mediterranean diet, I'm controlled, that is except for my feet, they're an enigma! So why does it work for me & others it's recommend for? The reason is because, to quote findings - Studies confirm that the ultimate arthritis diet is the Mediterranean Diet & that eating these foods can do the following -

Lower blood pressure.... protect against chronic conditions ranging from cancer to stroke....help arthritis by curbing inflammation....benefit your joints as well as your heart.... lead to weight loss which makes a huge difference in managing joint pain.

So please consider your sharing your opinion carefully when mentioning the one diet which has been proven to help arthritis & is recommended by medical professionals. Do bear in mind Clint promotes a diet because it happened to work for him & he must make a good living out of it. He's good at talking & it would seem good at convincing many to buy his plan, so much so he, to quote Clint himself directly, "has a lot of spare time", no doubt thanks to the income made from talking about & selling his programme (thanks to Hidden for that nugget of info). Bad business practice lets him down when it comes to refunding those for whom his plan hasn't worked, maybe this should also be added as a codicil when recommending his plan, if it doesn't work you may not receive a refund, if you consider honesty is the best policy.

andyswarbs profile image
andyswarbs in reply to nomoreheels

Hi nomoreheels , as someone else posted please can we have less of Hobby Horses on this forum. One day someone saying Mr Paddison is a con artist, another saying he is a comedian with derogatory overtones, another day not refunding... I could go on.

Clint Paddison makes a very good living as a keynote speaker. That allows him to spend all of his spare time on his project which is helping people recover from RA. When I say all of his spare time, I mean it. I am not saying he does not get an income out of his efforts, but I am saying he works extremely hard to earn every penny. This and other related background information is freely available for anyone who wants to know what drives him, much of it in his own words freely available on youtube.

Clint is not a perfect person but from what I know his heart is in the right place and he has clearly helped and continues to help a lot of people recover from RA with his deep, hard earned, well researched knowledge.

Of course if you just want to spread hearsay, that's your right, but don't expect nuggets to go unchallenged.

nomoreheels profile image
nomoreheels in reply to andyswarbs

I don't spread heresay, I'm saying nothing he hasn't either said himself or others who have had dealings with him or his Company have imparted here. I've never spoken to the man so your knowledge being in such close contact I can't dispute. Do you think though you'd ever have got to speak with him if you'd be challenging his ethics rather than buying into his theory, you have to appreciate that's the only reason you've had any access. It's clear you're passionate about this plan & I appreciate you consider him some kind of saviour of your health but as with any other situation everyone has a right to their views, in that vein I will also challenge. You won't convince me otherwise I'm afraid but you must agree it's heathy debate!

in reply to nomoreheels

Sorry to inform youAndy, Clint Paddison is a comedian. So should we take the advice of a doctor or comedian to "cure" RA?

youtube.com/watch?v=SG5FBfT...

andyswarbs profile image
andyswarbs in reply to

@suzannedale, Clint has also been (before RA kicked in) a top-grade athlete, a top-grade university student, a fibre-optic company high-flyer.

So what are you trying to prove. Are you saying that someone who has RA is not allowed to impart humour? Are you saying that someone with RA is not allowed to use their talents to earn a daily crust? Are you saying they are not allowed skills?

I just do not know what your argument is. The fact is he subsidises his RA work from his very highly paid work as a keynote speaker and comedian, is that somehow fraudulent?

Surely you should be singing his praises and saying thank you because as it is he does not need to "con" anyone. He is up-front about all his activities.

As a keynote speaker and comedian he often talks about his RA. He also does not hide from the RA community his other work.

So please exactly what is your point?

in reply to andyswarbs

I really do hope diet is helping you. I hope you reach remission. As for Clint, if he had found a cure for RA, then he should notify the World Heath Organization. He should recieve the Nobel Peace Prize for Medicine.

Please understand that I truly hope you reach remission. It doesn't matter how we reach it, just that we reach remission.

Please don't feel sorry for people who don't follow Clint. As I wont feel sorry for people that do.

dard profile image
dard in reply to andyswarbs

Amen, Andy. Let's hear it from the horse's mouth:

webcache.googleusercontent....

From this mechanic's POV, it's mind-numbing how some of us choose to ignore the obvious: crappy food results in disease,suffering& bottomless mega profits for the 'experts'. Lousy petrol does no engine good. People, what have you got to lose? Prove Andy wrong. You CAN'T ! Thirty years ago, my RA was banished c/o an 84 yr old customer who advocated rice&veg,with no meat,dairy,beer ,coffee...

it's not rocket science.BTW, all those allergies, asthma,skin conditions,ear infections,ie pHarma money-makers, also went poof.

Richgirl profile image
Richgirl in reply to andyswarbs

Sound wonderful. I'm going to try these things out. When u say u don't use oil, does that mean no avocados too Or just bottled oils? Thank you for those recipes too.🌻

andyswarbs profile image
andyswarbs in reply to Richgirl

I had avocados throughout, but Clint does not recommend them. He does not recommend nuts either - at least in the early stages.

For my money it is more about avoiding processed food stuffs, and by that I mean walnut oil, olive oil, coconut oil. But I have no evidence to back that up, just my own prejudice I guess.

Richgirl profile image
Richgirl in reply to andyswarbs

Yeah Because of so many foods that I had to give up, I got way under weight. Avocados is about the only thing I have left that can hopefully put some weight on me. I can't eat wheat, most grains, nuts, sugars, dairy, soy, to much fruits, any processed foods. If I eat these things I get congestion in my lungs. It's awful. I really can't figure out what to do.🌻

andyswarbs profile image
andyswarbs in reply to Richgirl

i wish I had an answer. The good news with Avocados is they have anti-inflammatory properties. I started taking them because they are about the best thing on the planet for the liver. And so at one stage I munched and munched my way through a lot of them to help get my liver in order.

Richgirl profile image
Richgirl in reply to andyswarbs

Yes that's excellent. Thank you🌻

Simba1992 profile image
Simba1992 in reply to Richgirl

This question of no fats or lots of good fats seems to divide opinions and experiences quite sharply. I am beginning to think that there really is an individual difference that is quite notable on this point. I am finding that I really do good on good fats, lots of raw leafy vegetables walnuts and almonds avocados, fruits and berries. My symptoms have notably decreased after leaving red meat and having only occasional fish and chicken. I guess trial and error is the only way.

Richgirl profile image
Richgirl in reply to Simba1992

Wow your diet sounds like mine! I was getting better, but then I started noticing a bit more little flares. The only thing I was doing different was vit C. I wonder if that could cause this?🌻

Simba1992 profile image
Simba1992 in reply to Richgirl

I am on AIP diet that does eliminate a lot of things on top of this take LDN and quite a few supplements. Finding what your triggers are is not easy but I don't think it's vit. C on the contrary high doses of C a good idea as is also high doses o f D3. Among other important supplements.

Richgirl profile image
Richgirl in reply to Simba1992

Yes I'm taking D3 as well. 10 thousand a day. Maybe these little flare ups are stress related. My brother is heavy into politics & he keeps telling us that our new president of the United States is going to cause a civil war, & maybe worst. It gets stressful to listen to this everyday.

Simba1992 profile image
Simba1992 in reply to Richgirl

I don't think you need to stress over your " toddler" president😊 There are so many sane adults around him that will keep him in place. He just makes a lot of noise.

But I am glad you have found dietary measures helpful, as I have😊

Richgirl profile image
Richgirl in reply to Simba1992

Thank you Zumba, yes I thought surely someone will stop this clown. I'll keep praying. Today I'm off to try the machine that was made for people to strengthen there bones. Osteostrong. This will be my first time. I'm not real sure yet if I will be able to do it. I'll let you know.🌻

Simba1992 profile image
Simba1992 in reply to Richgirl

Have you tried Boron, ever? Supposed to be very good for bones and also arthritis pain. Have been taking it for a while, but am not sure if it's doing anything for me. Good luck with your bone machine, never heard of before. Let us know if it helps😊

Richgirl profile image
Richgirl in reply to Simba1992

Yes I'll let you know. This man invented this machine in his garage for his wife who has Osteoporosis. There r 4 different exercises that u do on it that gently strengthens your bones. The whole thing takes 7 min once a week. A really nice person on here told me about this. Oh plus the man cured his mothers Osteoporosis which made scientist investigate. They highly recommend it for people with bone Weekness. Now a lot of doctors are recommending there patients to try it. I can't help but think that it would also have a good outcome for people with other diseases. Who knows. But it's worth the try. I wish I could think of the persons name on here that told me about this. Because she figured out how to make her own thing work at home. Maybe she will see this. Anyway wishing u all the best.🌻

Eiram50 profile image
Eiram50

Hi

A very informative post. I think it is great that youve managed to take ownership of your condition and I think you make very valid points that will offer a lot to some on this site.

However, I'm not sure how comfortable I am with the suggestion that those of do not adhere to the paddison or paleo programmes are somehow doing nothing to help themselves or failing to take ownership of their condition?

Like many in this site, i am very careful with what I eat and exercise as much as I can and I wouldn't accept that I don't have a positive attitude in terms of managing my condition. I would consider that I do "help" myself and that I do focus on longer terms solutions - I believe that most people do, wherever they are on their journey .

I also detect a note of this site maybe not being as focused or determined in relation to "crushing "RA - but maybe this is just how I hear it. However, I'd like to say that I find this site, informative, positive and extremely compassionate and understanding of people and their achievements and struggles.

Your intentions may well be good - I'm not so confident about the tone in which it is delivered .

Wishing you the best going forward.

andyswarbs profile image
andyswarbs in reply to Eiram50

You are right Eiram50 . It took me a lot of thinking to try to compose my post, and not sure if I ever would get the tone right. There are lots of people here who put in immense efforts to overcome and deal with their RA. I did not want to diminish at all those efforts.

It is the overall tone of the forum that I wanted to challenge. There are lots of "me too" and "sorry you are in this state". But a positive forum that is actively suggesting ways to improve life to every cry for help, that's what this forum should be about, surely?

I walk around now with so little pain, so little inflammation, so normally. I just want to see others heading in that same pathway - if they have the inclination. All the information is freely available on this forum. All of it. No charge.

But a WHOLLY positive forum encouraging people to improve with ideas other than "just take the drugs", that's my message. And if done right, then... Well I am living proof that RA can be crushed.

Eiram50 profile image
Eiram50 in reply to andyswarbs

I understand your point but I have to say I wholly disagree with the suggestion that this site is just a "poor me" forum. My experience is there are lots of suggestions about how to improve and build on quality of life, management of RA etc, including your suggestion re diet - certainly not the first time Ive come across the pros and cons of both programmes you mentioned in your post?

I agree, the time of your post did not sit well with me and I agree it may have been a challenge to write. However, I'm sure you're aware, there is a way of saying things that facilitates people being able to hear what is being said?

I also believe people on this forum have possibly been around a long time and have almost Certainly contributed and visited other forums and have chosen this one ( as intelligent people) as it maybe provides something more than the others?

Sometimes it's not just about what "needs" to be done but just about being heard when things are difficult and being held and supported whilst one copes with that.

Marie

Eiram50 profile image
Eiram50 in reply to Eiram50

The tone of your post-

Not the time - typo

janmary profile image
janmary in reply to Eiram50

Thank you Eiram 50 for your responses to Andyswarbs. I was wondering what to say and then you said it better than I could.

Positivism can take many forms.

I hope your back injury is improving - and Codeine type meds can cause lowering mood

Eiram50 profile image
Eiram50 in reply to janmary

Thanks for the support janmary. I wasn't sure that I wouldn't appear snippy ( which was never the intention ) but felt very strongly in terms of what this site and the good people on it offer. I know that I am more positive about managing my condition due to those who have consistently taken the time to respond, advise and offer an empathetic and understanding ear.

Back is still sore but nowhere as sore and Ive stopped taking the oxycodone and in myself, I feel better having done so.

Hoping things are well as can be, for you.

Marie

nomoreheels profile image
nomoreheels in reply to Eiram50

Thank you for saying just what was going through my mind Marie! You've spoken on behalf of those of us who choose to be here, who do well on our meds & support those who are having a blip shall we say? Also those who like to be here to be in contact with others with RD, who don't know anyone else with the disease & otherwise don't have anyone else to talk with about our shared disease, just chew the fat basically! I had just about given up & about to move on having seen how many responses there are (& not gone any further than yours!), & because you've written such a positive reply on behalf of all of us who are inappropriately thought to be poor me's. This forum wasn't set up for people to 'inform' us regularly about how diet improved their RD. Whilst I'm pleased those who do are happy with their results I don't agree with how they try to counsel the members here under the guise of support. We wouldn't recommend a drug because it works for us, that would be foolish because we know not everyone responds the same, we would if asked to share experiences, that's quite different, being invited. So why does this not apply to diet? What doesn't seem to be considered is the same could apply, for some changing their diet so radically could cause more problems than it may solve. I don't tell everyone I eat a Med Diet, I do if it's relative but not every post I write or respond to is all about diet, unlike some. Seems to me because the NRAS aren't complying (for good reason) by falling in line & recommending these plans the campaign continues here on the site. It makes me particularly uneasy when I see anyone, especially newer members, reading these posts (not understanding why they're not recommend by NICE, the FDA or any of the RD charities) & taking an interest thinking it will help. I shall stop now, I didn't intend to give my views, rather support your reply! Thanks again Marie.

Eiram50 profile image
Eiram50 in reply to nomoreheels

I couldn't agree more NMH.

In fact , having flitted through other sites, my view is that the essence and ethos of this site provides something so valuable to people who choose to be here - that I have not found on other sites.

You're right in that various things work for some and not others and in that some, changes can do more harm than good - the most Important thing in any of the points that you make now, and others here have made before, is its fundamentally an offer of the benefit Of Experience, Knowledge and suggestion and not a judgement based on nothing of evidence, delivered in a condescending manner?

Apologies, I just feel very strongly in terms of a basic respect for people and the benefits I have personally felt in being part of this forum.

Hope you and your husband are well this fine day.

Marie

nomoreheels profile image
nomoreheels in reply to Eiram50

We're singing from the same hymn sheet Marie, & we're not alone in feeling as we do that's the thing, certainly no need for apologies.

I'm full of a cold but thanks for asking! First one in I don't know how long. My h flew to Spain on Sunday leaving me his bugs & now he's enjoying 23°! He's still in the same amount of pain, that won't go away until he's operated on which hopefully if his sternum's regrown adequately enough should be in around a couple of months. His Pain Clinic doc prescribed Oramoph last week (just 10mg/5ml, so not a CD) but he wisely recommended not to take it until he returns. He also recommended he controls dosing himself starting with a couple of ml's & titering gently to try once more to see if he's going to tolerate it. I'm sort of dreading him trying it having been there before but he's in such pain & he's an awful colour, I guess that will be camouflaged by the time he comes home!

Eiram50 profile image
Eiram50 in reply to nomoreheels

It sounds a challenging time. I hope he gets what he needs soon.

Lovely to be somewhere warm. I'm taking the girls to Budapest in July and so looking forward to going!

I really hope you begin to feel better soon - one can feel miserable with a cold at the best of times.

Take care.

Marie

nomoreheels profile image
nomoreheels in reply to Eiram50

Oh lovely! Budapest has been on my wish list since seeing the pics from when my m-I-l went with her sister in the '70's, one city they visited on their independent trip to what's now Northern Europe, though like you I'd want to go in summer not as they did in winter! Can you imagine two women on their own doing that then? Well I hope you really enjoy it & do post a pic when you're back. Thank you for your good wishes. x

Eiram50 profile image
Eiram50 in reply to nomoreheels

What a fantastic experience that would have been then?!

I've taken the kids on holidays to all the regular places as this year, just wanted something a little different.

I aim on taking a million pictures as we never know what's ahead next year.

Marie

nomoreheels profile image
nomoreheels in reply to Eiram50

It was at a time when in Russia they would sell their mother for a pair of Levi's & were actually asked in a lift of a hotel if they had any they could buy! They got a bit fed up of dumplings & borscht though!

That's nice you're going somewhere away from the norm, a bit of culture rather than the beaches. I moved Geneva & Milan for that very reason & would go back to visit both happily. We'll look forward to seeing some pics but let's be positive, you'll be well enough next year to plan something special again & enjoy your pics of wherever your fancy takes you all. x

Eiram50 profile image
Eiram50 in reply to nomoreheels

Thanks NMH. Incidentally , at 21 years old I moved to Geneva ( to work ) and I absolutely loved it too.

Take care and have an easy night .

Marie

nomoreheels profile image
nomoreheels in reply to Eiram50

You lucky thing, wish I'd have been more adventurous with working abroad at that age! It's the time to do it,before settling down. Beautiful city isn't it.

You have a good night too. x

Oops, just read my previous post...moved should read loved, damned autocorrect!

Eiram50 profile image
Eiram50 in reply to nomoreheels

Haha - I got that! I have a brain that just adjusts words to make sense!!

in reply to Eiram50

You are absolutely right Marie... I have been on other sites - all of them here in the US, and this one, across our pond has been much better in my humble opinion, for allowing expression of everything from screaming to whispering to whimpering to exultation. And we all got there in different ways. I like this site for many many reasons, and even though I am on a totally different diet than Paddison (actually exactly the opposite - high fat, low carb,) I am doing wonderfully well with that. Thanks for the thoughtful comments

Eiram50 profile image
Eiram50 in reply to

Thanks Caeryl

I think the points Andy raised were valid and I fully respect that this diet works for him; and that's great.

However, as you and many others have pointed out, different things work for different people and we find our way there through time and help.

To me, that was one of the key things I viewed this forum as supporting - people's understanding of what's out there, other people's experience and knowledge of these things ,Freely shared with a huge dose of Compassion, empathy and genuine regard

Now views have been exchanged- onwards and upwards.

Hope you're well

Today!

Marie

8080 profile image
8080 in reply to

What region of the U.S. are you, CaerylUSA? I'm in the California desert.

in reply to 8080

Hi 8080 - I am in the east coast of Virginia

8080 profile image
8080 in reply to

Good to know we have some Americans here. We lived in London for a few years and I love all the terms from the Brits and Aussies ( and Canadians and everyone! ) I really appreciate your posts, CaerylUSA

in reply to 8080

Thanks so much for the kind words! I know - I love their terms too. They have much more color than our speech does...

Richgirl profile image
Richgirl in reply to 8080

Excuse me for coming right in. Im from Santa Barbara California.🌻

8080 profile image
8080 in reply to Richgirl

Santa Barbara is one of my favorite places! We used to spend a little time there every year! That is so great. I should have guessed when you mentioned avocados..lol

As for politics..I was heavily into pols for years, and maybe that is what brought on my last year of flares- I dunno, but now I pay NO attention to anything political. Its just the only way I could cut the stress.

Richgirl profile image
Richgirl in reply to 8080

Yes, I agree totally that stress plays a big part in this RA. I just wish the people around me would remember this. Anyway I'm always eating Avocadoes. I love them. I eat 3 avocados a day. Because of my food allergies I've had to stop eating so many things so I'm under weight, so I'm trying to put weight on.🌻

in reply to Richgirl

NICE!! It's nice to know that there are other US folks here. Santa Barbara is beautiful too!

Richgirl profile image
Richgirl in reply to

Hello caerylUSA, what part of California are u Living in? It's a small world.🌻

in reply to Richgirl

Hi Richgirl - I am actually from the East Coast in Virginia. I worked however, in San Francisco (while I lived in Virginia) for almost 8 years - Talk about a commute - ha ha

Richgirl profile image
Richgirl in reply to

Oh that's a beautiful area. I took a trip to the New England states with my mom about 20 years ago. We went in October when all the leaves were turning all those brilliant colors. I took a lot of leaves & pressed them into books. I loved being back there. I loved seeing all the old fashion houses with the Big porches. That was the best trip being able to spend time with my mom was the best.🌻

8080 profile image
8080 in reply to Eiram50

Marie, you are saying what I was thinking: " the benefit of experience, knowledge and suggestion" in a friendly,compassionate community. I mean, there are many medical sites, but this is a place ( I just recently found ) that is welcoming and a place to feel comfortable and not a " poor me" site, right?

Eiram50 profile image
Eiram50 in reply to 8080

Absolutely , 8080!

andyswarbs profile image
andyswarbs in reply to 8080

This is definitely not a "poor me" site. That's not what I said. This site is very welcoming and supportive, but does little to move people forward. Any attempt by myself or others to argue that it is possible to seriously improve one's condition is often met with seemingly outright hostility, with words like "shame you".

NRAS cannot endorse any serious improvements via dietary solutions since they have to go with gold-standard evidence. But in recent years the leaky gut theory has consistently gained credibility.

Dealing with a leaky gut (if it exists) is an uphill battle. Doctor's by and large argue "diet has no effect", ditto with the average rheumatologist. But then neither has had serious training in diet, so perhaps they are not speaking from hard studied knowledge. Also they then to only have a few minutes during a consultation to find a solution. Drugs can be prescribed in seconds.

On the other hand my research into dietary effects on RA has become an almost full time (unpaid) "job".

The plain fact is many people who have RA who are motivated and listen to their own body are finding that they can become symptom free. The paddison program is not the only route, many people do it by themselves, happenstance, cider vinegar or whatever.

All I ask is that anyone who is interested gets the opportunity to hear the potential and decide for themselves. I believe it is not a right for some vociferous people here to try to shut down all debate.

If anyone has a right to shut down dietary debate it is NRAS. It is their forum. End of story.

andyswarbs profile image
andyswarbs in reply to nomoreheels

thanks nomoreheels . I read your reply in detail, as I try to do as a matter of courtesy for everyone who takes such efforts. I don't think I need, or you want any specific comments. But I just want you to know I appreciate your sentiments.

nomoreheels profile image
nomoreheels in reply to andyswarbs

I agree re having the courtesy when you're the OP, & I have in fact read further despite what I said to Marie. I'm sure you can understand though that going over the same subject time & again can be somewhat wearing, particularly when members have expressed their concerns previously. Obviously newer members who may not have read any other posts on the subject can draw their own conclusions but I think it ought to be made clear that nothing is guaranteed even though you've had a positive response to a specific diet plan. Just as long as it's accepted we all have opinions & when there are those which don't mirror yours then so be it. I would just like to add now I have read further that your replies have been well considered but do please continue to have respect for other's opinions, the majority of whom have voiced they prefer not to go the road you've chosen. Thanks for replying.

Jacki08 profile image
Jacki08 in reply to nomoreheels

Well said NMH .😊

NanaFifi profile image
NanaFifi in reply to Eiram50

Very well said Eiram50 , I agree with you 100%!

Eiram50 profile image
Eiram50 in reply to NanaFifi

Thank you nanafifi 👍

Matilda7 profile image
Matilda7

Great to hear how well you are doing.

One of the problems that most of us have is with fatigue. Have you found your diet helps with this aspect too? Or is it mainly good for helping with pain?

andyswarbs profile image
andyswarbs in reply to Matilda7

Indeed it does - diet helps with fatigue as well. I remember weeks on end hardly being able to lift my leg onto the sofa.

It also helps with brain fog... Since I changed my diet I cannot remember a moment in my life when I have had clearer thought!

I have been vegetarian since 1979 and thought that it was a great diet. But when dealing with RA a great diet is simply not good enough. A focused diet on you as a person is totally critical, anything less and RA wins every time.

This is my argument against a Mediterranean diet. It is fine for the average person. No-one on this forum, absolutely no-one is average. We are fighting the most debilitating illness on the planet. It has got hold of us in a python-like stranglehold and it will not let go without the biggest fight of your life.

But it will be beaten. Some people may still need medication for the rest of their life, but hopefully at a much reduced level and certainly with a stable amount of much reduced pain and inflammation - and reduced fatigue and reduced brain fog.

What diet change cannot easily help with is serious bone damage. Though I do know of one person who takes comfrey like there is no tomorrow, and positively reports of the help in their joints! But that is just anecdotal evidence.

Simba1992 profile image
Simba1992 in reply to andyswarbs

Yes Andy, this is also my experience. Since I have been on my elimination diet, supplements and LDN I have not been bothered by fatigue or brain fog.

Clare-NRAS profile image
Clare-NRASPartnerNRAS

Hi Andy

As we discussed when you came to visit NRAS recently we are delighted that you have found a way of managing your RA that appears to work for you but thought it might be helpful for others here on HU to see what we did further to our conversation about this programme that you are advocating.

RA is a very individual disease and it is not a one size fits all solution therefore everyone must be respectful of each person's way of managing their condition and finding their own solutions to managing symptoms and disease progression. When someone feels passionately that something they have found works for them it is easy to try and advocate it for everyone else but that can be upsetting and distressing for others. I would recommend and encourage that careful consideration is used when posting and that the language used should be positive and encouraging and could not be perceived as judgmental or condescending. I doubt it was ever your intention Andy to cause offense.

As we promised we did some research to see if there was an robust evidence to support this Clint Paddison’s claims.

NRAS findings:

The programme is a commercial product and involves a monthly subscription to follow it.

NRAS made enquiries with senior people at NICE/RCP (Royal College of Physicians) that we have worked with on the NICE Guideline Review group. The expert response we received was as follows:

Thank you for passing on the information about the Paddison program.

At the scoping stage for the update of the NICE rheumatoid arthritis guideline, no new evidence that would alter the existing recommendations relating to dietary modifications were identified. During stakeholder consultation, one stakeholder suggested that there may be some evidence relating to Vitamin D supplementation or Omega 3 and Omega 6 levels. A couple of small studies on Omega 3 and 6 had been identified in the surveillance review that informed the update, but the conclusion was that the sample size of the existing evidence was too small and more large studies were required. No comments were received relating to bacteria / acid secretion / acidosis etc. as referenced in the Paddison program document.

On review of the references provided, the majority of the studies may be informative epidemiology or background to inform research in the area, and may indicate a possible association between some of these factors. However, many are narrative reviews or comments in journals and are opinions on the area rather than primary research or systematic reviews.

None of the references included were aiming to assess the effectiveness of the Paddison program itself. In order to be considered within a systematic review to inform on the effectiveness of the programme, a randomised controlled trial of the programme would be required ideally. In the cases of dietary interventions, it may be that the control group does not receive a placebo. Although this would introduce bias to the results, a large well performed study with investigator blinding and objective outcomes reported where possible, would minimise the bias.

The two references that may contribute to an effectiveness review for a treatment are references 15 and 16 which look at alkaline and potassium supplementation respectively. Unfortunately these are each single references on each of the possible interventions and have relatively small sample sizes. Furthermore the trial on alkaline supplements does not have a placebo in the control group which would mean that this would be considered as high risk of bias. In isolation neither of these studies would be considered enough evidence for alkaline or potassium supplementation.

I hope this is of some assistance. National Guideline Centre| Care Quality Improvement Department | Royal College of Physicians

I hope everyone finds this helpful and I wish to reiterate that as a consequence of the above, being an evidence based organisation, NRAS will not be altering our current dietary information.

Eiram50 profile image
Eiram50 in reply to Clare-NRAS

Thank you clare, I think your response was very helpful.

Everyone is very different and everyone's approach to managing the impact of RA will be individual to them.

The one feature of this disease that flows across space and time is the need for emotional Support and I for one, am very greatful to this forum and the people on it, who offer this support so freely , respecting their fellow man.

Marie

andyswarbs profile image
andyswarbs

Hi Clare,

Everyone is different, I agree, however certain principles at least apply to the majority, for instance we all need basic nutrition.

Thanks for posting the results of your discovery process. I'm sure it will be much appreciated by all who take the time to digest it. Unfortunately the document to which it refers is not yet in the public domain rather it is accessible for anyone on the Paddison support forum. If I can get that released I will add it here for completeness.

Again many thanks.

Andy

My RA seems to be disappearing. I did not need to follow the comedian Clint Paddinson diet. Yes the comedian who happens to be making a lot of money on people suffering with Auto immune diseases. What a con. My RA seems to be disappearing because my endodontist is fixing 3 poorly done root canals.

The gut theory is just a theory and con men are cashing in on peoples hopes. Please don't blame people for causing their disease. I honestly believe you are not aware that you are being conned, but you have been advocating diet as a cure for a longtime AND you still are taking MTX. I got 2 of my 3 root canals redone and I am now only taking 2000mg sulfa. Once I get my 3rd root canal redone I hope to be be drugfree. When will your diet allow you to be drugfree?

I do wish you the best, but stop blaming people for not following the con of diet.

andyswarbs profile image
andyswarbs in reply to

Suzanne, As I said in my initial post ABSOLUTELY EVERYTHING from the paddison program (excluding anything in his private community & support forum) is available freely on this forum. So Clint Paddison does not make a single penny (or should I say cent) out of that. He never has done and never will do.

So asserting that it is somehow a "con" does your argument no favours.

I've been lowering my RA drugs and I hope to be drugfree by the end of March. Fingers crossed. When will your diet allow you to go drugfree? How long have you been "curing" yourself by the "gut" theory diet?

I am so sorry to sound harsh. It is just so wrong to claim diet is the cure for RA. You are still suffering and taking dmards. I do feel bad for being so harsh. I will now go and eat a piece of chocolate cake and enjoy being painfree.

andyswarbs profile image
andyswarbs

@suzannedale Don't worry about being harsh. Good debate is what is needed - that's my point. You are right, also that "gut theory" is simply a theory. Not too many years ago many UK Doctors recommended pregnant women should smoke. That was a theory, despite a huge amount of evidence that smoking kills and is equally bad for unborn babies. No disrespect, but had NICE been around at that time, smoking might even have been a NICE guideline!

Which is why Clare posted her contribution about the response from NICE, and the clarification that NRAS goes with NICE guidelines. The NRAS principle is that NICE guidelines are the ones for them to advocate.

I too have considered having my teeth done but have decided, with my dentist, to only replace the amalgam when a problem occurs. Changing your teeth might somehow give one remission from RA is yet another theory. In the same way that the Margaret Hills clinic assert that cider vinegar can help relieve RA symptoms.

Why I started this thread was to encourage good "healthy" debate. Those that want to stay with drugs 100%, fine that's their choice. Or rather it is a choice if they are fully informed of the alternative theories and then choose for themselves which theory to go with.

The only result we all want is good health away from RA. So please let's use this forum to make positive suggestions. NRAS cannot do it (perhaps a better phrase might be "not allowed to do it") but we "the patients" can encourage fellow patients to look at alternatives. Yes, with a very critical eye including being wary of "scammers looking for a fast buck".

But each person should be allowed to make up their own mind, not have their mind made up for them. That's choice a pinnacle of our society.

Simba1992 profile image
Simba1992 in reply to andyswarbs

Well said Andy😊

Eiram50 profile image
Eiram50 in reply to andyswarbs

I think you raise valid points Andy but I find it harder to give credit when instead of your post initiating "healthy debate" and promoting people's right to choose as stated later in this thread, What I've heard, strongly, was judgement from you in so far as you clearly suggested this sight didn't do enough to promote information sharing in relation to the "crushing" of RA and also that people who didn't try any of these programmes weren't actively Helping themselves?

I think the points Clare raised were extremely pertinent and no one should be here to judge and One should be very careful of language and tone when making such sweeping statements.

I hope that your journey continues to be positive and go from strength to strength .

Marie

andyswarbs profile image
andyswarbs in reply to Eiram50

Points noted and accepted.

in reply to andyswarbs

Changing my teeth or root canals cause RA is Not what I'm claiming. What I have been claiming is my dentist missed a canal when she did my root canal. This seems to have made my immune system wacky.Please don't extract your teeth or stop seeing your dentist.

I wish you well and to be painfree.

andyswarbs profile image
andyswarbs in reply to

understood and apologies for any misunderstanding on my part. Did you see the news article about teeth hygiene being a possible cause of RA?

in reply to andyswarbs

I didn't see the news article. I live in Canada. What paper was it in? That would be an interesting read. Thankyou

andyswarbs profile image
andyswarbs in reply to

Not sure if this is the one

twitter.com/BBCNews/status/...

in reply to andyswarbs

Wow. Thanks for the link. I was a stubborn child who hated brushing my teeth. All my dental work in my teenage years had to be upgraded...So I'm paying the price now for being stubborn.

Thank you so much for the link

AgedCrone profile image
AgedCrone

I wonder if you were a young single mother or an elderly person with other health problems diagnosed with RA you would have the time, energy, knowledge or money to start investigating alternative ways to deal with it?

In UK you are quite likely to wait months in pain for an appointment with a rheumatologist, then wait for test results, then be told you,are being prescribed drugs you have never heard of ...there is no time in a consultation to discuss ways to help yourself, you are just told to talk to the Rheumy nurse.....

There was a programme on TV recently on healthy diets. Of about 7 diets, the Paddison..........about which I admit I know nothing ......was the most expensive diet tested ......if followed to the letter would be beyond most people's means.

I am sure the majority of people in this site do all they can to help themselves ....yes we all have a good old moan sometimes.....& why not?

I find most people on this site deal with RA with courage & determination & often a sense of humour.....no matter how much pain they are in.

Don't we?

Cathy777 profile image
Cathy777 in reply to AgedCrone

Well said!!

andyswarbs profile image
andyswarbs in reply to AgedCrone

Hi Agedcrone. There are certainly a lot of supportive comments on this forum and I applaud every ounce of effort contributors make, almost all learnt with hard experience.

You do however make my point very eloquently, that there is an almost unquestioning acceptance of recommendations from a doctor. You also imply the point that those most vulnerable are at greatest risk.

As I have already posted, trying to argue that the paddison program is somehow expensive when it is free to people here and has been for a long time seems a bit odd.

AgedCrone profile image
AgedCrone in reply to andyswarbs

Hello.............you don't get it do you?

Not everyone has the burning interest you appear to have in trying to outdo the medical profession .....as far as I know doctors...in this case rheumatologists.........are the chosen specialist to treat RA.....not a person selling an unproven, clinically untested, eating regime . You have a perfect right to your chosen path of dealing with whatever ails you. However, patronising people on this site is not appreciated & will not be tolerated.

If you know of anywhere on the NHS, where RA patients can have unlimited consultations to discuss treatment regimes with a consultant rheumatologist I'm sure we'd all like to know where this person works. Until such a facility exists we all see our Rheumy nurses & consultants as often as we possibly can & on the whole appreciate their help.

Thankfully I am retired, but many on this site have demanding jobs & family responsibilities & don't have enough hours in the day to research alternative diets.

By all means write & say what is available, but do not accuse us of " almost unquestioning acceptance" of suggestions from medical doctors. I am sure the majority of us are very grateful for the treatment we receive & have the intelligence to ask for a change of drug if we feel we have given it a fair chance but with no improvement in symptoms. Drugs for RA are complicated & not to be meddled with lightly.

As for the Paddison diet being free....sure we can read what it is ....but where do we find the money to buy the ingredients ?( Please don't answer that)!

Over the 18 years I have been diagnosed with RA , I have spoken with many consultant rheumatology professors. both here & in USA & none of them advocate any particular diet for RA. Their joint considered opinion seems that what you eat has so far never been clinically proven to alleviate RA symptoms on a permanent basis.

Good luck with the Paddison regime...I truly hope it helps you, but please don't continue suggesting if we don't adopt it we are wrong.

andyswarbs profile image
andyswarbs in reply to AgedCrone

Sorry again if anyone is upset and I am not diminishing rheumatologist contributions. Nor am I saying you are wrong.

However I can recommend a book by dr gail Darlington, rheumatologist at Epsom hospital called diet and arthritis. She does not advocate paddison but does advocate diet.

I will answer your point on Ingredients. any supermarket where you normally shop. Just head for the vegetable aisle and that would meet most needs. Very cheap living.

Eiram50 profile image
Eiram50 in reply to AgedCrone

Bravo! Well said agedcrone. I would absolutely support

All that you have said.

Marie

Ali_H profile image
Ali_H

Hi,

I find your post very offensive on several fronts:

1: I don't need you or anyone else to feel sorry for me as it implies a stance of superiority on your part and attempts to put me in a victim role.

2: I do own my RA, along with my depression (diagnosed some 7yrs before my RA) and my blepharospasm (that's 'spasm' not 'itis' - I'll let you look that one up!) thank you very much.

3: my replies to others have invariably been reflections of my own experiences that I have found useful and that may, or may not, be useful to the individual posting.

4: I find most posts and their replies informative and helpful in some ways - without this site I would not know about the ins and outs of many, many things RA related.

Oh! And I work full time as a special needs teacher and I am the school's teacher-governor - what job do you do?

Ali

andyswarbs profile image
andyswarbs

Hi ali. Thanks for your heartfelt comments and apologise if I have upset you in my attempt to stimulate debate herein.

I think if you look back through my posts I have already stated my job etc.

Witness2 profile image
Witness2 in reply to andyswarbs

Hi Andy

You certainly lit the blue touchpaper with this thread! I recognise your sincere desire to spread your good news and that you sound frustrated with those you think sound content to do nothing about their condition. However, I think the replies have shown that you made a sweeping assumption about that.

Many of us have fought hard to explore alternative solutions to conventional treatments which we know carry risk and side effects. Having done that, in my case for decades, I have reached a place of acceptance. I think this is possibly what you confuse with passivity. I am delighted that a particular diet has worked for you. I also thought I had discovered a solution to my RA and came off drugs for 10 years. It wasn't perfect but I did feel more mobile and less fatigued, eventually. But now I know that experiment cost me dearly. I have significant bone damage incurred during that time. I have been involved in international research into RA and have met and worked with many of the leading medics and researchers (who made Biologics possible incidentally) and they would be on to these diets in a heartbeat if they thought they could help a typical RA patient. As would the Pharmaceutical industry.

Looking back, I suspect that my massive improvement during those 10 years without drugs was partly psychological, due to taking control of my predicament, so we agree on that at least. What needs to be said I think is that none of us can know what is right for the other. What's good for me isn't necessarily right for you etc. So let's be very aware when we post info and passionate thoughts, that we affect people who are trying very hard to live useful and contented lives despite RA, who may have made huge efforts to overcome it, and who have reached a place where 'fighting the enemy within' is futile. These people have reached the time when acceptance is the healthier option. And acceptance doesn't mean you are resigned to something. It means you acknowledge what is happening.

andyswarbs profile image
andyswarbs in reply to Witness2

In the words someone else has already used on this thread, "well said."

lilyak profile image
lilyak

Diet doesn't work for everyone. I have done the Paddinson Program. Didn't do a thing for me, (and I didn't get a refund either). I did AIP as well and lots of other things, supplements, yoga, exercise. Diet and lifestyle is not the answer for me. I know your intentions may be good but I found your post very insulting. Just because it worked for you, but not for me, does not make me negative, or lazy, or in any way content with my severe disease. You're just luckier than me - you've found a solution. I've tried everything, quite possibly worked harder than you. This disease is different for everyone. I'm glad you found your solution. Don't disrespect people who aren't so lucky or assume they are weaker than you, or that they haven't tried!

andyswarbs profile image
andyswarbs in reply to lilyak

lilyak If you are interested (and probably from your tone you are not) I will take up your case and see if I can find out why you did not get a refund. Similarly I would be very interested to hear why the paddison approach did not work for you. We could do this on the forum or by email, your choice. mine is andyswarbs at gmail dot com.

Equally I would dearly love to hear from anyone else who has had a similar experience. Such contributions are so totally important, imo.

lilyak profile image
lilyak in reply to andyswarbs

thanks andyswarbs that is very kind of you. But I don't know why. I followed the program, and I didn't improve. It was several years ago now. But when I follow a program/diet plan, I follow it to the letter. I now have multiple food allergies (Eosinophilic Eosophagitis) and follow a very restricted diet. No grains, no dairy, which are everyone's favourite culprits. Along with corn, soy, nuts, seafood, eggs (not allowed). So I eat some select fruits and veg, and chicken. Have had to eat this way for over a year, and no improvement. For a time I was on an elemental diet, a liquid diet containing only essential proteins. No improvement then either. Diet changes have had no impact. I have also had periods where I have had to challenge foods. For example, challenge diary for a month. That means eating a lot of dairy, to see if I'm allergic. Food challenges didn't cause a worsening of my RA either, which you would expect it would, were food part of the problem in my case.

Simba1992 profile image
Simba1992 in reply to lilyak

Sorry to hear that your work with diet modifications did not work. Unfortunately this is the case with some but usually the modifications, if the triggers are found, do result in some kind of relief. The functional medicine doctors when connecting the dots do not only look at allergens but also on deficiencies and lifestyle. To get relief all these aspects must be in place. Not an easy venture 😕

AgedCrone profile image
AgedCrone in reply to Simba1992

But read Witness2 post...coming off Dmards meant she appeared to be in remission ...but all that time RA was eating away at her joints. Of course W2 may have had this joint damage anyway, but personally I wouldn't want to take the chance.

andyswarbs profile image
andyswarbs in reply to AgedCrone

So important to get to the source of the RA problem.

Simba1992 profile image
Simba1992 in reply to AgedCrone

See my latest reply. Yes diet and other alternative measures should have the same followup as with meds.If it's not working then you have to think again. Sadly inspite of the Dmards progression often goes on, as well😕

lilyak profile image
lilyak in reply to Simba1992

Very true. And I haven't had much relief from any DMARDs and biologicals either. Prednisone is brilliant, but the best I've had is a 30-40% response to medication. When you are critically ill and bedridden, that's a lot though. Just very far from remission or a normal life.

Simba1992 profile image
Simba1992 in reply to lilyak

I am so sorry, you must really have had a hard time. Take care and I hope you will find something that will help:)

lilyak profile image
lilyak in reply to Simba1992

I've seen two functional doctors. Cost me a lot of money on all sorts of testing and supplements which proved completely unhelpful. Just expensive.

andyswarbs profile image
andyswarbs in reply to lilyak

yep. Whenever possible spending lots of money is to be avoided.

andyswarbs profile image
andyswarbs in reply to lilyak

lilyak have you read selfhacked.com/2014/05/04/e...

and

youtube.com/watch?v=AWRkR5f...

No idea if it is helpful, but might be interesting.

lilyak profile image
lilyak in reply to andyswarbs

I have excluded lectins previously and currently. My diet consists of most fruits, veg and some chicken as state, and as recommended by Dr Gundry in the link. Thanks though.

8080 profile image
8080 in reply to andyswarbs

I have been to Dr. Gundry. He does a 20 vial blood- pull which, in my case, showed I had parathyroid tumors ( he said ), high inflammation, a real bevy of problems that his ONLY solution for, is a nearly impossible-to-follow plant based diet. He does NOT refer you to anybody ( for instance, someone to remove my parathyroid tumors). He also recommends a huge shopping bag full of supplements ( which made me sick), and then, of course, he has his own supplements, which, after making a ONE TIME purchase ( I always emphasize that I do NOT want a subscription! ), found that I was receiving them monthly, with the money being taken automatically from my credit card. I put an immediate "forever" cancellation on those.

Yes, I tried the diet. I spent a fortune on all his listed "yes" ingredients: everything coconut, products only from goats and sheep, OMG..I can't even think of the other specialty foods. ( one page of "yes" foods.)......NO lentils...crap, my brain fog is kicking in........ANYWAY.. Dr. Gundry was a world-renown heart surgeon turned "wellness doctor".. He is very charismatic, and does not actually claim that his diet "cures" everything, but you come away thinking that it will. I did not go back. The diet did nothing ( for me ), but my friend's husband has lost around 60 pounds ( in 2+ years ). The diet kind of evolves into Atkins diet for weight loss ( which I was on strictly for years and I always lost weight ). What I'm trying to say, is.....Dr. Gundry is a cutie, but the plant- based diet did nothing for me and it is (only my theory) that he is making tons of money based on his past fame as a heart surgeon.

janmary profile image
janmary in reply to andyswarbs

This reply sounds like you have more than a 'programme follower' connection to the Paddison programme. Do you?

andyswarbs profile image
andyswarbs in reply to janmary

See my full reply to MajesticMo below.

nomoreheels profile image
nomoreheels in reply to andyswarbs

lilyak isn't alone as I'm sure you realise Andy, we've learnt from other members here that Clint Paddison is shall we say reluctant to give refunds, someone else mentioned it again relatively recently. If you do have some influence I'm pretty sure others who have attempted to ask for refunds to no avail would be pleased if you would also act on their behalf, take up their cases & see if you can find out why they also didn't get a refund.

andyswarbs profile image
andyswarbs in reply to nomoreheels

Please let anyone who has any complaints have my email address or message me directly here. No promises. There are two sides to any debate! But I will at least take up any issues.

nomoreheels profile image
nomoreheels in reply to andyswarbs

Ok thank you, I can't remember who it was mentioned it recently but I'll have a scan through, I'm sure they'd appreciate anything even a reason why they didn't receive a refund.

MajesticMo profile image
MajesticMo

Are you a representative of th P Diet and do you get paid for such praise of it ?

Simba1992 profile image
Simba1992 in reply to MajesticMo

Unkind remarks like this seems to be ok when posting about alternative treatments whereas pushing for toxic meds in every situation, even when diagnosis still unclear, even when doctors uncertain, even when the patient is still grappeling with treatment options. RA has so many different forms and faces that there certainly is not a treatment that fits all😊

AgedCrone profile image
AgedCrone in reply to Simba1992

What you say is true...but Dmards do have a long track record of success ....the P diet doesn't.

I know we have all suffered horrid effects from Dmards, but a lot of us have had long periods of near normal lifestyle....on the marvellous Mtx, Super Ssz, Lovely Leflunomide etc....so let's not throw the baby out with the bath water in our haste to rely on a diet!

andyswarbs profile image
andyswarbs in reply to AgedCrone

Never the baby with the bathwater, as I think I have posted rigorously to keep clear.

Simba1992 profile image
Simba1992 in reply to AgedCrone

Diet and supportive measures can always be combined with Dmards, in case one is interested to try. Dmards are effective for a limited time and mtx works for 50-60% these are also facts that may help patients to try alternatives together with Dmards or without them. Like with meds it is cruical to do followup and take MRI to check the situation. This I have done and and for a year everything has been ok,hoping at least that I will prolong the time without meds.

andyswarbs profile image
andyswarbs in reply to MajesticMo

MajesticMo

Thank you for the question. A very important one.

I am not paid in any way shape or form for talking about the P diet. I am not a representative. I paid the full price for the program in the first place and I pay more to gain extra support. I do this because I know that getting rid of RA is the biggest challenge of my life & I need every ounce of support I can muster.

This "challenge" becomes even more true when on forums like this one people throw the word "con" around like confettii and especially because doctors, rheumies and related charities will try to dissuade you because they rely, imo, on flawed advice.

Similarly I am not paid to promote Bikram Yoga and am in no way affiliated to that practice. Equally I pay money out of my own pocket to use it regularly.

Also I wonder had I asked for advice about doing Bikram Yoga hereabouts would I have been told, "hmm, no don't do that. That's for healthy people, not for people very recently in a wheelchair who cannot walk to the end of the road."

MajesticMo profile image
MajesticMo in reply to andyswarbs

I only asked because you offered to " look into it " for a previous remark about not getting a refund.

andyswarbs profile image
andyswarbs in reply to MajesticMo

I talk to Clint Paddison over his forum on a regular basis. Not a problem.

Karen77 profile image
Karen77

I just want to point out that the Paddison program and Paleo or Paleo AIP are *ONLY* different in so far as Paleo & AIP are both omnivore diets. They are all whole foods-based diets, which is how you describe the Paddison program. Paleo AIP is actually very focused on nutrient density, and so it doesn't actually say "eat bacon and only bacon as much as you can as often as you can," rather it focuses much more on coldwater wild fish and organ meats from pasture raised ruminants (cows, sheep, etc) which have many nutrients that we often don't get on a regular basis. Paleo AIP in particular encourages variety. Another good source for understanding why we should be eating certain meats is The Perfect Health Diet by Paul Jaminet. He takes a very scientific/hyper-nerd approach to understanding why certain foods are better than others. I think the Paddison program is probably a good start, but I never felt better, after being a vegetarian for 12 years, than when I reintroduced meat to my diet. The Wahls Protocol was created to describe how Dr Terry Wahls overcame her MS, but I think it would be a good start for people with RA as it is also nutrient-dense with a heavy focus on whole plant foods (i.e. you should eat 9 cups of leafy greens per day). The biggest difference between the Wahls Protocol and Paleo/AIP is that Wahls does not advocate against nightshade vegetables (tomatoes, eggplant, peppers/capsicums, white potatoes), where there is some evidence that these can cause/exacerbate inflammation in those with RA.

andyswarbs profile image
andyswarbs in reply to Karen77

Thank you Karen77 . I have seen other reports of people feeling better after starting to eat meat on a Paleo, very interesting. On the total other end of the spectrum I have had reports of people feeling bad after starting the paddison program. There are probably a mix of reactions throughout. Oh, to quantify this objectively!

Thanks for the clarification on nightshades between Whals & Paleo/AIP. I am not too interested in them per se, but the nightshades question is very relevant to me.

Karen77 profile image
Karen77 in reply to andyswarbs

It really does seem quite individual. And of course, no one is in another person's kitchen monitoring what they're eating. Someone could say they are following Paddison and eat only celery, while another could say they are paleo because they like steak and apples. lol

andyswarbs profile image
andyswarbs in reply to Karen77

One thing Clint Paddison is extremely strong on is emphasising eating just according to his plan in the early days, except when those base foods cause reactions. But you are right, what someone says they are doing may be different to what they actually do. C'est la vie.

in reply to Karen77

Hi Karen - Actually, after being vegetarian for more than 20 years, and vegan for another 10 almost, I did the same thing - re-introduced meat. And while is was and is still hard sometimes, like you I feel much better. But as you said, organic, pasture raised, preferably humanely treated, etc. is all we really get most of the time.

8080 profile image
8080 in reply to Karen77

Nightshades have a definite negative response for me ( again, that's just me.) I think we should all be aware of the healthy foods that exist, and just see how we each, as individuals, respond to them?

hi andyswarbs, Just one thought from me. Please keep in mind that many of the folk with that tenor to their notes are either newly diagnosed and terrified, or they are in a major flare, they are struggling with work and expressing their fear, or in many cases they just can't get the meds right. Not one solution works for everyone. I was on something almost identical to Paddison when I got RA and it didn't help me at all. So to each body their own. Peace.

andyswarbs profile image
andyswarbs in reply to

peace

penelopejane profile image
penelopejane

I was upset by the original post from Andyswarbs. Condescending at the very least. I was pleased to see a reply from NRAS. The only reply I read. Full of information an excellent balanced response. This forum is helpful to so many of us. Not the place for hobby horses.

andyswarbs profile image
andyswarbs in reply to penelopejane

penelopejane My apologies for any condescending or other tones - my words, and all my fault. Not my intention to be so interpreted, but that's the way it came across to you, obviously. I won't expand on what my intention was, since that will only inflame...

If you have any interest in taking the time to read other posts I hope you will see that, although perhaps it started badly, the debate has actually helped some people move forward. Not you, obviously. But some people have decided they gained by the ensuing discussions.

I have already posted this, but each one of us has the opportunity to simply ignore any posts that are not to our taste.

ragdoll1_ profile image
ragdoll1_

I am the wife of hubby who has RA for 3years. He tried all dmards & takes mthx weekly & a biological inj drug fourtnightly. His RA is managed well & he works in a fairly physical job, decorating. We are very positive about his long term condition & strive to ensure he looks after his joints & he can manage his life well. He recently had his 1st flare after a bad virus/sepsis & hospitalised - he had to go back onto steroids short term which he is reducing & back to work after 3weeks off sick. We follow advise of rheumatology team, we are in an area easy to access nurse specialist & pull an appt with consultant if needed. We follow a balanced healthy diet but do not feel the special dietary measures andyswarbs takes are necessary- it's important to live a life & enjoy it & get the right balance. Hope u happy in your life andyswarbs & wish u luck

andyswarbs profile image
andyswarbs in reply to ragdoll1_

ditto ragdoll1_ wish you & your hubby well.

Jan101 profile image
Jan101

Hi andyswarbs

Do you know if this diet would help ulcerated colitic ? I have had colitis for around 12 years now and would love to go into remission. I also had a really bad flare of diverticulitis last year and was rushed into hospital. I have had several flares of diverticulitis and the last one really scared me. Look forward to hearing from you. Jan xxx

Simba1992 profile image
Simba1992 in reply to Jan101

You might be interested to look into LDN. Very good results, also scientific evidence of efficacy. Here you find all the info you need.wwwldnresearchtrust.org and ldnscience.org. Good luck😊

Simba1992 profile image
Simba1992 in reply to Simba1992

ldnresearchtrust.org

andyswarbs profile image
andyswarbs in reply to Jan101

Jan101 , I have no personal knowledge of colitis. Is that related to Chrohn's disease? My gut feeling (no pun intended) is that a lot of auto-immune illnesses will benefit from looking into dietary modifications.

The paddison program is focused most intensely on RA. I just search the paddison forum for colitis and certainly some people on Clint's forum seem to recommend it. If you want me to ask him me an email at andyswarbs at gmail dot com and I will forward it to him.

I do know that Clint has helped a number of JIA people. He does not give such advice easily, since his program is aimed clearly at adults. But when you are in a tough place....

One child started with JIA aged 10. The parents pressed Clint to help. The whole family started the program. Within 4 weeks the child's inflammation began to drop. After 12 weeks the child's symptoms stopped improving as if the program was failing. The mother reviewed everything the child was eating and stopped nuts. 4 weeks later was the last that child ever saw of JIA.

I think I have the above facts right. You can watch the video and hear Christine, the mother's own words at youtube.com/watch?v=K-fMrCm...

Jan101 profile image
Jan101

Thank you I will do that now. I truly hope that you are feeling as well as you can. Jan xx

andyswarbs profile image
andyswarbs

Thanks for the contribution Hidden though having a "dig" at someone just because they are earning a living does your argument no favours.

Ignoring that I come from the position that homoeostasis does not always work properly. Yes, in a normal human being under normal circumstances - fine. However in someone with RA an imbalance disrupts the bodies ability to maintain a normal PH, and yes in the worst case this can be very life threatening. Let's take liver problems...

To start here is a PubMed document reviewing homoeostatis and liver problems. ncbi.nlm.nih.gov/pmc/articl...

Now I had very serious liver problems when my RA was flaring around Nov2015. And I mean serious! This was triggered (so both my doctor and rheumy say) by the diclofenac tablets I was a-popping to try to get relief from RA. I fixed my liver by a) stopping the tablets and b) eating avocados like there was no tomorrow.

Another aspect of homoeostasis is the lack of a bodies ability to maintain normal body temperature. In my darkest days I distinctly remember not being able to keep warm on some occasions and on others being too hot. It got so bad my wife slept in another bed because I could not control my body temperature. Even wearing a thick jumper did not help- and with the heating on. This became an especial problem in the car. My wife argued "we need to buy a car with separate temperature controls." She would sit there in a blouse, and I would sit with jumper and jacket on.

I wonder how many other people with out-of-control RA have had problems being too warm or too cold - as a persistent problem?

Whatever, the doctor's solution was take the MTX. If that didn't work the next solution is to up the anti on the MTX. If that did not work try another DMARD or go straight to biologics. It certainly wasn't to stick a thermometer under my armpit.

Again thank you for the contribution to the debate. Very interesting.

Simba1992 profile image
Simba1992 in reply to andyswarbs

Interesting Andy, the problems with temperature regulation seem to be so common in Ra. I am beginning to believe that the cause is thyroid dysfunction which new research also points to. As much as over 36% of RA sufferers have TD and the thyroid gland controls body temp. I was always cold and shivering before my diet modification and also supplementing with iodine, three drops a day.

An other thing I have been wondering about is the use of Ndsaids when on mtx on this site as it is. a medical fact that taking these pain killers with mtx highers the risk for liver damage considerably, like you experienced with diclofenac.

I find that I get an upset acid stomach a lot either since the start of the arthritis or the nsaids I was originally prescibed. I combat this with watermelon, cucumber etc and it seems to work. For me , regardless of my body's PH ,as I would not know how to measure that, eating alkaline foods benefits me.

in reply to

Needless to say I no longer take the nsaids.

frechfield profile image
frechfield

Thankyou..you have made me think.

Chrissycl profile image
Chrissycl

Please don't feel sorry for me,I manage My RA very well ,non of us on here moan we just look for a little support from time to time or maybe some advice. Not lectures on what we eat or do not eat .

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