I don't post here anymore, because everytime I post, I tend to get run out of town by the angry mob.
My wife is now in full remission and doing great. No pain, ever. We just got back from Rome where we walked an average of 20,000 steps per day. Remission is highly achievable with lifestyle changes if you take a detective approach to your individual circumstances and leave no stone un-turned.
Recently I have been researching a new supplement / medication available on the Gray Market called BPC-157. You can buy it in the UK and it doesn't cost much.
It is currently being used by Pro athletes to heal damaged muscles, tendons, cartilage, joints etc.
From my research I have found it to be very beneficial to people who have suffered physical damage from RA.
It also appears to work in a similar way to Cortisone injections, reducing inflammation in inflammed joints but without the nasty side effects.
At this stage it is very unlikely that your Doctor or Rheumatologist will have heard about this treatment. They are lightyears behind the bleeding edge of medical research.
Do your own research before taking anything. You can learn more about it here:
It is to do with a combination of things and a massive, massive, massive amount of research and trial and error. We have a really strict diet and take alot of supplements. Exercise and stress management is also huge.
Cutting out Gluten and dramatically reducing stress levels have had the biggest impact on how she feels. We would find that everytime she got close to remission, if something really stressful happened it would set her back bigtime and often leave her in agony.
When we started to lower stress levels we saw a massive difference in the way she feels.
There is a lot of science behind why stress has a big impact on the Pathogenesis of RA. I recommend reading the book below if you are interested in learning more:
Is there a particular site that you can recommend? One that you've tried or your wife has tried? I'd be wary of sites claiming to have a pure product, one just never knows.
I'm very pleased for your wife, she must be feeling super happy. I hope this is now a permanent state for her. Is she completely conventional drug free?
And yes alternative approaches do tend to get a strong reaction. Especially if put forward as a certainty. Those that propose them often don't seem to realise that many of us have tried them. Or have the empathy to understand that the subliminal message is that those who take conventional drugs are stupid, or that failure to take these approaches means that RA is our fault.
I would like there to be more discussion about them, but it needs both sides to be extra careful and sensitive in the way they express themselves.
I'm afraid I don't agree. I've been attacked by certain people in a really malicious way when I said I used Chinese herbal medicine and electro acupuncture. I did not remotely suggest anybody else should try it. It seemed to me from the posts that people did not really want to get better. Likewise, another poster who proposed a Vietnamese product.
Whatever you may say, lifestyle plays an important part in keeping RA under control - not completely but it most definitely makes a difference and this has been proven scientifically. It is unfortunate that many people are not willing to take that on board.
I was sceptical of conventional drugs but I gave them a fair trial. I have not taken conventional drugs since 2015. I get flare ups but I reduce them by lifestyle changes.
I am insulted by your comment "...that people did not really want to get better" Everyone has the freedom to try alternative therapies, and good luck to them, but there is sometimes a sense of gloating and elitism in the post of people who support such therapies, some of which are not researched, are scams, and many only make a positive difference to a just few; you could say such people haven't got RA but some psychosomatic disorder and this is why some such flimsy therapies work. As everyone on here knows and understands RA is a complex disease and there is not a one stop cure all magic bullet. I agree with Hellixhellix's comment "...message is that those who take conventional drugs are stupid, or that failure to take these approaches means that RA is our fault". When in fact the majority of RA suffers are on conventional medications and they are to some extent very effective, not as perhaps we would like, but for the majority it is all we have that works.
I've used electro acupuncture and Chinese herbal medicine which relieved it brilliantly and the improvement was shown on imaging. I had some success with one conventional drug.
Like your statement, I have had others on here who have alleged that the relief was brought about by a placebo effect. I could have taken offence but did not because it seemed to me those making the statements were involved in the pharmaceutical industry.
My post on here referred to lifestyle. There is conclusive proof that lifestyle does affect RA. I worked recently for six weeks, 9.30 to 6 pm full time, and was only able to get to the gym once per week. I completely seized up. I've been going to the gym every other day since and am nearly normal now without any drugs at all. There is proof that exercise improves RA. I appreciate it is difficult for some people to exercise but it is up to them - they really can't say it does not help because it has been proven conclusively that it does. It reduces inflammation dramatically, just as well as a lot of drugs.
A year ago I posted after a horrendous episode of Listeria, a stomach bug. It particularly affects the musculo skeletal system and the pain in my neck, collar bone, upper spine, upper arms and knees was horrendous. I would have gone to A&E if I had passed by, but was too ill to make the special journey. I posted on here advising caution about eating cold smoked salmon if you have RA. I received an absolute torrent of abuse in response from people saying they did not want to watch their diet. Cold smoked salmon is not cooked and carries Listeria, whereas hot smoked salmon is cooked and does not. It does not seem to me to be much of an adjustment to diet to either omit smoked salmon or make sure you only eat hot smoked salmon, but there is no need to be abusive if you don't want to.
The effects of Listeria are awful - I was shivering and wearing two fleeces when the temperature was 25 deg C and I drank gallons to relieve the thirst it caused. I still have the LIsteria. I have a stomach ulcer and gastritis (caused by Quinoric) and I need to take Omeprazole to reduce stomach acid. That sets the Listeria off and I have tried for over 12 months - it is dwindling but it has been an awful experience. I thought I was helping people by offering the advice.
I don't know why you are insulted. I was not referring to any individual. My comment was a fair one. Acupuncture and Chinese Herbal medicine is not a scam: it has been used for 3,000 years by billions of people for arthritis and rheumatoid arthritis. I have never suggested anybody use it - just posted my own experience. I would be dead without but I was not able to carry on. I had a particularly severe and sudden onset of RA and I am still trying to find out why.
Anyway, I have better things to do than try to help people who take offence at such help.
I repeat I was insulted by your comment "...that people did not really want to get better".
The inference being that unless RA sufferers make a real effort to try alternative therapies it evidences they don't want to get better, which of course is utter rubbish.
Again you are free to try any treatment you feel will help and it is brilliant if it works and some cases there are very positive results, but it is not the case for the majority.
I'm sorry if you do not like being challenged but if you make sweeping statements you should expect this and be prepared for such reactions, as it appears have happened in the past.
I am glad you have better things to do and wish you well
There was no such inference only one that you chose to draw.
I was replyng to another poster in a completely general sense eg people do not want to change their lifestyle and gave examples. You know perfectly well that I was not saying people don't want to get better because they "don't make a real effort to try alternative therapies" but it is be the case that they are not willing to try anything including exercise and diet selection. There's plenty of proof on here.
I have made no sweeping statements but referred to previous posts. No, I don't think saying acupuncture worked is a sweeping statement or the response that it is a placebo is a normal reaction. Maybe you could elucidate your alleged "sweeping statements" because they are extremely insulting which is not what this website is intended for. I've explained mine.
I am a big advocate of paying attention to lifestyle issues, so don't quite understand why you suggest I am not ("whatever you may say"....)? What I am cautious about is anything that is proposed as a one-size-fits all solution - whether conventional or alternative treatments.
I'm also not sure it is you are not agreeing to? You don't agree that this is an emotive subject that means we have to be extra careful how we write? You don't agree that sometimes posts can have unfortunate subliminal messages that run people up the wrong way?
I'm afraid I don't agree either. I've seen many people (including myself) put forward alternative treatment ideas in a respectful manner, only to be shot down. I left this forum myself at one point because of this very situaton. I certainly didn't tell anyone that they were stupid for taking conventional drugs. Nor did I say i was in full remission on alternative treatment. I did state that they had given me improvement though. I agree with DelicateInput , I also only suggested people look into it. I wasn't forcing anyone to try it.
I'm really happy that you have posted Allsopp . It's wonderful that your wife is improving. Thanks for reporting back to us anything that has helped her. It is incredibly useful. I've discovered that not only did i have nutritional deficiencies and allergies but also 7 toxic metals out of range. I have had some improvement correcting deficiencies and doing an anti allergy diet but Im still very ill and i need to start detoxing the heavy metals. I'm sure these are what has kept me from not going into proper remission.
It may be controversial to some but I have only discovered the causes of my chronic illnesss with the help of a functional Dr.
Good luck to everyone, no matter what route they decide to go on!
Thanks for your reply. I was actually very careful about what i said before on this forum. I've never been disrespectful to anyone on any group. Its not my nature. It just really annoyed some members when I spoke about alternative treatments. Sadly, you can be polite and try to be helpful but still get grief on the internet. I'll never understand it....
As you have discovered any approach towards treating RA that is not ‘standard’ tends to be met with a lot of resistance and disbelief on here.
It doesn’t seem to matter how politely and respectfully you put across your message there has become a standard response from some and it almost always descends into an argument.
Not sure if you remember a former poster called Kai--, one of the most respectful and considerate posters on any board I’ve ever posted on? He was hounded off here by certain members (you know who you are) who repeatedly reported his posts purely because they didn’t agree with the message being put across. This ultimately led to him being (unbelievably) banned from the NRAS site as it seems those that make the decisions had got bored of dealing with all of the petty arguments and instead of dealing with the real issue (which was the clique of posters that kept causing the arguments) they decided to take the easy route and ban Kai--. A shame as he had spent a lot of time gathering and presenting information (for those that were interested), was always respectful of others, repeatedly pointed out the false dichotomy of meds vs diet (why not both?) and never shamed anybody.
This was a wake-up call for me and is the reason that I rarely post on this board, and I’m pretty certain there are many others who have found the hostile responses and inappropriate moderation to be off putting also. You will find censorship is a central tenant of the site’s moderation approach also - rather than allowing opposing points of view to be aired and debated in a grown-up manner. Sorry if that sounds a little ‘tin-hat’ but I have seen it with my own eyes.
Funnily enough I wouldn’t say I was on either ‘side’ in the debate on the effects of diet / lifestyle but I am at least prepared to listen to different points of view respectfully and I understand why (contrary to what a lot of posters seem to think) just because ‘the NHS doesn’t give out veggie boxes’ (yes that has been said) is not proof that diet has no impact on RA.
Anyway, personally I think your posts are very carefully and clearly worded with no room for misunderstanding or offence to be taken, and if you also found that you got the same treatment then this just backs up what I said above.
It’s always the same ones that seem to take offence as well, go figure.
Interestingly there seems to be no moderation when folks give out advice on medication, even though that really is the domain of medically qualified professionals.
I'm not sure Kai has been banned Ade. I don't fully understand how it works but I think if a member is banned then then either all previous posts are deleted (as per Andyswarbs?) or all previous posts have a "Hidden" & a grey avatar, unsure which but would think the former. As Kai's posts are still active (available to see though there will be no recent activity) I think would mean that he/she has had a warning & activity on the site has been suspended for a period of time, again not sure how long that is or even if it differs according to the reason why the member has been suspended.
Again I'm not sure because I have no personal experience of any of this but I think admin would be obliged to issue warnings prior to suspending or banning a member & that if those warnings were ignored then suspension or having their account removed would apply?
According to Kai-- he has been banned from NRAS but not HU.
Admin did mention ‘the difficult decision they’d had to make’ in a post where they explained why they’d deleted yet another thread they didn’t like that was discussing that very thing.
Given that his posts are still available I’d love it if someone could actually find any eveidence of anything remotely offensive or against the rules that Kai-- had ever posted. I’ll wait...
Edit: no doubt this will go the same way soon as I’m sure ‘the reporters’ will be on the case soon.
Oh, right, well if you've heard it from Kai then ignore me. I have evidence (as does at least one other member) but there you go, as it's not just me I'm not at liberty to divulge it.
Please post it, if it was posted on a public forum and is still available for anyone to see them you are perfectly at liberty to repost it - if it isn’t on a public forum then, it’s not evidence.
Thank you for posting this information I is worthwhile doing some research into these things. I am really pleased your wife is doing so much better. Keep us upto date with your findings
Thanks Allsopp - really interesting stuff, and I am really pleased for your wife and her continued improvement. I recently tried to direct message you about the research you've been doing. Not sure if you got it, but is there a way to get in touch ?
I really think that the NRAS should look at these posts so many not posted for ages ? with unfamiliar names could be just a couple of people using psuedo names. I agree Helhelix moreover it is a definate claim that requires proof. So if I was to read this as a paper published by the BMA I'd believe it in the event that its not well the mind is a strong tool and cure is very different from remission plus was teh diagnosis made by a GP or on the internet. Sorry if this offends but I don't take mediications because I like the taste but because I need to. I went to a local meeting last night am am one of the lucky ones. To imply those who sufer so much, do it because they don't take some sort of snake oil cure or follow the right diet is just offensive.
You said you would believe the science. However, the editor of the lancet medical journal questions the reliability of studies. I remember a Doctor once said to me that science isn't science anymore. After reading this I understand why she said that....
Therefore, I do put more value on patient success stories. As long as I believe them to be genuine.
I personally would like to hear any treatments that have given people even the slightest bit of improvement. If it works for them and not myself I'm absolutely fine with that. Chronic disease can stem from a variety of different factors(Toxins,nutritional deficiencies, infections, hormones etc). We arent all the same. Hence, why some treatments work for some and not others. People are just trying to help. I personally have had several health problems and need a combined alternative approach, one isn't enough. I posted about this above.
But you are not medically qualified to judge these things it frightens me that your promoting it would appear somthing on the Grey Internet. Thats just wrong and the NRAS should say that these posts are encouraging purchase of items which may be dangerous. IE If on Warferin some foodstuffs even are banned and you cannot say when your dead "Oh I did.nt know it had Grapefruit in it, you're not supposed to take that with Warefin" as the build up of toxins may over time build up. I'm now ignoring your post as it is not research, at all just stuff gleaned off the Interernet. Research involves proper clinical trails and tests before such claims as you make are valid. By the way I went to Rome last year 20,000 steps ? do me a favour, in Rome really ? you spend more time queing than walking. It's so busy that you'd need to be an athlete with a unimpeded road ahead. I walked to St Peters and did that one day, next day to the Emporers palace etc. Its too hot to much more and so many people. So I'm not going to say anymore I have my thoughts and clearly your speaking on behalf of you wife so why is she not saying this.
In some parts of the World they still do, and unfortuanetly they tend to die very much younger than we due in the normal course of events. Disease and RA is one its not a lifestyle choice.
Apart from the fact that that is just not true once you take into account infant-mortality, accidents, death from fighting and infectious diseases etc. Hunter-gatherers tend to have lives without a lot of the diseases of the western world (like heart-disease, many cancers, diabetes and RA) but are more likely to die in childbirth / as an infant, in an accident or from an infectious disease (that was likely spread initially by colonial invaders and for which they therefore had little immunity).
So western medicine (vaccines and antibiotics largely) have driven up life-expectancy in our societies but western lifestyles have introduced a different set of problems, this isn’t really a contentious point and feel free to read up on it.
I’m pretty sure that there are several alternative approaches that can help with the RA symptoms and wouldn’t say no to any of them. What works for each individual can be quite different. Personally, I know that the fewer grains and processed foods I eat, the better I will feel. It doesn’t remove the RA but it does decrease the inflammation. I would not expect that to be the case for everyone though because I know that others have tried diet changes with no luck at all. RA presents itself differently in each of us. I’m glad you found what works for your wife.
You sometimes have to stick to a healthy diet for a long time, especially if you are obese and have eaten rubbish for a long time. I've almost never eaten red meat or fried food, which are both inflammatory. It would take a long time to get these out of your system if you have lived on them. There's plenty of medical and scientific evidence of this. Unfortunately, people do not want to accept this. It is not the most educated site I have been on. Almost all other health sites are quite open to this but the level of education appears to be far higher. People on here can't even spell or punctuate a simple sentence so it is hard to get through to them without them taking offence.
It's the internet! a letter from the Consultant saying the lady is "cured' would be amazing as it is these posts are not qualified by anything other then words typed out on a computer. Me I'm 6 feet tall, 25 years old, slim and blonde own a Porsche and a Chateau in the Dordoyne. As if ??? and thats my point.
At last, some interesting posts about how different approaches can and do work for different people. I'm now inspired to do more than just accept the 10 min annual consultation with my consultant. I really want to take responsibility for myself.
Great debate
Thanks
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