Some Words of Encouragement. Severe RA and No Meds. right now. The Benefits of a Healthier Microbiome

Hi All those with RA.

Many of you on this site have recently been diagnosed with Rheumatoid Arthritis and your Medics are yet to find something to control the disease activity levels. That stage is very painful and very scary. This post is not about recommending what is right for you, or to encourage anyone to ignore medical advice. It is about hope for the future.

My diagnosis came in 2006. Before 2009 was over I had had both hips and both knees replaced. In 2010 a surgeon was ready to start on a further 4 joint replacements on my shoulders and elbows. In those days I was on Leflunomide and each opp. required me to stop taking it for 7 weeks. My disease was more destructive than my surgeon had ever seen and in 7 weeks off my meds. I could destroy another couple of joints.

So how have I got to the point of not taking a single prescribed drug. I used to take 10 different prescription drugs at a time and my GP wanted me to add at least another 3 to the list!

Many drugs were tried, but nothing, which I could tolerate, brought the disease under control, until I started on infusions of Tocilizumab. My blood results delighted my Rheumatologist, but left my immune system suppressed to the point where I dare not go over my doorstep for 14 days after my 4 weekly infusion. In the other two weeks, especially in the Winter, when I had to go to my GP's for blood tests, or visit the Hospital, or even go food shopping, I took to wearing a face mask, because I was so prone to viral infections. The cold that took a normal person 7 days to get over took me typically 7 weeks to get over and as the Hospital would not administer my infusions when I had a viral infection, my infusions were rarely given at 4 weekly intervals because I was so rarely well enough.

Virtually every time I saw my young Grandsons and their friends I came down with yet another viral infection. My RA was under control for the first time in over a decade, but my quality of life was very poor.

Due to my elderly Mother being brought to death's door by a combination of prescription drugs and only improving when she was put on Palliative Care, given 2-4 weeks to live and taken off all her medication except pain relief, did I began to question if I really needed all my 10 drugs. Off her Meds. my Mother was free of leg ulcers for the first time in over a decade. Off the Meds. she recovered from septicemia and lived for a further 2 years.

In 2013/2014 I had some severe reactions to prescribed drugs and decided to try to figure out which drugs I really needed, as many of them had been prescribed to try to alleviate the side effects of something else. If I had agreed to take everything my GP was offering recommending and suggesting I would probably have been taking at least 13 different drugs at that point. Gradually over a period of 2 years I weaned myself off the medication. Some of the withdrawal symptoms were truly awful, but I kept going.

In many ways, I cannot claim that I am cured merely that there has been a dramatic improvement. I still have Chronic Fatigue and Fibromialgia, in addition to my RA and AS. but I am certainly no worse. My damaged joints still hurt, but usually less than when I took 5 Tramadol a day. The bonus is that without the side effects of my Medication I have no need of the Proto Pump Inhibitors or the tablets to reduce my blood pressure and I don't need the Statins either.

Without being told to do so by my Rheumatoid Consultant I would never have had the courage to stop the Tocilzumab infusions. In April this year when I went for my Infusion I had 3 longstanding infection which the Rheumatology department had chosen to ignore for over a year. A different nurse spoke to my Consultant and I was told I could not have any form of disease modifying , immuno-suppressant drugs until the infections cleared up. Basically go away and make an appointment for your next infusion once your infections have cleared up.

I am still waiting for the infections to clear and every 4 weeks I have bloods taken to monitor the level of disease activity. My last Tocilzumab infusion was on 28th February. I reckon that makes it 20 weeks since my last treatment. In the first few weeks after my cancelled infusion I was really very scared, but as the weeks have gone by and there is no sign of a flare up my sense of well being has just gone from strength to strength.

My energy levels have improved significantly. My Mental Health and general sense of well being are better than they have been since 2004. I used to regularly think my life was not worth living. I could no longer envisage a future I wanted. I had no idea just how ill my Tocilzumad was making me feel. Don't get me wrong if and when the flare up comes I will be very glad to have my infusion back, but right now I am just thankful to be feeling this good without meds.

Finally I have hope that my future can be better and I no longer see suicide as an attractive option!!! Yes it really was frequently that bad in recent years.

In the Spring of 2016 my infusion was delayed for about 2 months, because I had a viral infection. My ESR rose to 63. I had a Flare that cost me neck movement, spinal movement and I now have a thumb on my dominant hand that does not bend. Yes when my disease is active it is vicious.

So what has made the different between then and now? Why am I managing differently this year? Well I put it down to hearing one word on two very different BBC Radio 4 programs in about June 2016. The word is MICROBIOME. If you don't know it, I hope you too will choose to find out more, because I believe the research will revolutionize not only the treatment of RA and other auto-immune diseases, but that it will also have a positive impact on many of the modern Western World's chronic diseases. Yes I know it all sounds too good to be true.

Some say the associated medical treatments will take 30 years to filter through. Well I was too impatient to wait 30 years, after all I am already in my 60's. So I read a lot and did what I could afford to put it into practice. What have I done? Wait for the groan, well most of it is about changes in my diet. I have also invested in nutritional supplements.

Your Microbiome is all the bacteria, yeasts etc. which call the Human Body home and in the post 2nd World War era (i.e. in My Lifetime and probably yours too) we have really messed up what previously happily lived in out digestive tract for many thousands of years.

I have been trying to nurture a healthier version of my Microbiota, for a little over a year now and it appears to help. It is not easy. The biggest change I have made is to attempt to cut out sugar and sugar substitutes. I am not an angel. I still have a big slice of gluten free cake, but now only a couple of times a month. I try to eat less processed food and just like they keep telling you to, eat more veg and salad and I try to keep my fruit intake to a couple of fresh pieces daily. Usually an apple and a banana. My budget does not run to exotic fruits. Basically more Mediterainian Style.

It is more about the good stuff you include, rather than cutting out major food groups.

In the last 2-3 years literally thousands of research papers have been written on the subject of Microbiome and Mictobiota. Arthritis UK is pouring significant sums of money into this type of research and a good place to start is on Arthritis.org Gut Bacteria: A Potential Game Changer for Rheumatoid Arthritis. If you are looking for a more general starting place try bbc.co.uk/guides/zq7nj6f That should bring you to BBC i Wonder What Should I Eat For a Healthier Gut? If you prefer to listen put something like Healthy Gut or Leaky Gut into Youtube. Try Amazon UK Books . Put in something like Good Bugs, or Healthy Gut for popular stuff or Microbiome for a more Academic stance. You can read a lot and learn a lot on Amazon Books before parting with a penny.

If you are still here you deserve a prize. If you want me to suggest some more specific respected names of researchers, authors or book titles I am happy to do so.

There is massive research taking place, but this is a young field with loads yet to learn and Big Pharma and the Processed Food Industry have a lot to lose. The NHS and the whole of modern western medicine is a bit like a huge ship that has been going in one direction for the last 70 years or so and will need a lot of convincing that a new route and a new direction is needed. A lot of folk will still be at the point of just wanting to pop a pill rather than make lifestyle changes.

If you are in the early stages of RA this probably sounds like too much hard work, especially if you are feeling as utterly exhausted as I felt for so long. For many years I spent about 16 hours a day in bed most days and the remaining 8 slumped in a chair often without enough concentration to watch TV. My carer came 2-3 times daily to make it possible for me to live in my own home. If a really severe case like mine can improve so can yours, it just might take longer than you would like. Your future can be better than it is now. That is the key message I hope you can take from my experience.

Merely suppressing symptoms with anti this and anti that has left many people crippled with chronic disease and Health Services Worldwide crippled by the cost. We need to be looking to getting to the root of the problem and helping our bodies to heal with natures nutrients where possible. So speaks the Medical Anthropologist.

Hope this helps and inspires.

AARA

80 Replies

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  • And to cut a long story short....Your sales pitch needs to be a little more concise.

  • But how can it be a "sales pitch" when the OP isn't selling anything? Personally, I really welcome advice like this. I'm not fond of all the chemicals doctors try to push onto us - if dietary and other changes can be made to make life more bearable then that's fine by me.

    Thanks @AARA for all that really useful information. I'm so glad this is working well for you.

  • Hi CarolineC57,

    I greatly appreciate your post. The only thing I was wanting to "sell" was a little hope. We all need to find what is right for us and when it is right. RA affects us all in different ways at different times.

    I hope you find the right combination of drugs, food and supplements to give you the best possible quality of life.

    AARA

  • Not a sales pitch just sound advice to TRY

  • Thank you for a very honest and to the point description of your disease process that must have been very hard to endure:( Unfortunately this is the dark side of RA meds, and less talked about, that they do not always work and can make your quality of life even worse. Like many doctors are saying who are no longer sure that the symptom oriented medicine they have been thought at medical school is working, that meds are infact making people more ill, in way too many cases.

    The more holistic way of looking at illness and health where nutrition and the role of microbiome is gaining ground with big steps and research. Hopefully in the future this will also be the strategy in treating AI.

  • Hi Simba1192

    Thank you for your kind words and encouraging reply. I feel that the NHS type system with Specialist Consultants is both a blessing and a curse. No one could expect a GP to have the detailed knowledge of a Specialist and yet the Human Mind and Body are an integrated whole.

    When I was a child and you went to see "The Doctor" it was always the same person in a single GP practice and I think that knowledge of both the individual patient and the Family had much to commend it.

    Wishing you well.

    AARA

  • It's interesting to read your update 3 months+ from when you reported needing to stop the infusions: healthunlocked.com/nras/pos...

    I'm so pleased to read that you're experiencing some relief from your aggressive deterioration and symptoms - long may it continue! :)

    I've been reading about the association of metabolic dysregulation that might contribute to some forms of inflammatory osteoarthritis or accompany it (not entirely clear at present). Do you think it's plausible that you had some metabolic disruption that has been helped by your changes and is showing through for you in diminished symptoms (whatever that means).

    Association of erosive OA and dyslipidemia: medpagetoday.com/rheumatolo...

    The research paper: ard.bmj.com/content/early/2...

    Some clinical research and publications seem to be moving towards the view that osteoarthritis can occur with inflammation and that there isn't a clear distinction between some of the OAs and inflammatory arthropathies but they might be a continuum with common underlying metabolic perturbances.

    I'll be very interested to read your progress and whether there are any changes in any of the blood work associated with metabolic syndrome, cholesterol, etc. etc.

  • Just to say that I can't agree with all of the OP: "NHS and the whole of modern western medicine is a bit like a huge ship that has been going in one direction for the last 70 years or so and will need a lot of convincing that a new route and a new direction is needed. A lot of folk will still be at the point of just wanting to pop a pill rather than make lifestyle changes."

    Forecasts about the cost of chronic illnesses and their frankly unaffordable treatments is a matter of deep concern to many countries and their healthcare symptoms. Plus, I don't know why some people are so ready to believe that others want a pill rather than a lifestyle change. Tho', tbh, it's a standing joke that given my complete lack of lifestyle risk factors, I've had both a surgeon and some GPs joke that I'm a strong argument *against* an active lifestyle, being a teetotal non-smoker, with a moderate diet :)

  • Life is a complex thing and we are all different folk at different stages. It is only now as I have made some improvement that I have the strength to be proactive and take some personal responsibility for my health.

    My Rheumatologist has been telling me for years that things might improve if only I could get my stress levels down.

    Somethings we have the option to try to change and others are more problematic.

    AARA

  • Dear AARA,

    Great to know that you are more stable right now. RA is really sickening. Like what you said, I did once thinking to end my life instead of continue to be in such a chronic pain every minute in my life.

    I do belief in eating healthy will make a big difference. But then I think it is just to dangerous to do without the modern medication.

    Amy

  • Hi Amy_Lee,

    I stuck with the modern medication for RA for close to a decade.

    Most aspect of my life just got worse and worse.

    After a combination of medication and medical advice nearly killed me, I decided to try to figure out which of my 10 medications I really needed and which I could manage without.

    I am not advocating that anyone goes against Medical Advice.

    The main message at the beginning of this thread was to offer hope. That no matter how ill anyone was right now, that maybe at sometime in their future, they would find their own route to better health.

    Thanks for your responses.

    AARA

  • Meds are not miracle makers just like diets are not. Every individual has her/his own disease process. Blind belief in the power of meds when you feel they are not helping is not in my view sensible. Listning to your body should never be excluded from the treatment strategy.

  • New research seem to point in this direction that RA in fact could be a metabolic disease.

    raypeatforum.com/community/...

  • Simba,

    You are very resourceful indeed. Good to share all the new recovery, at least we know there may be another option for us.

  • Hi

    Thanks for coming back to me. I think Metabolic Syndrome is something we are all going to be hearing a lot about.

    There also seems to be growing evidence that intestinal inflammation is at the root of many modern problems and that other factors like stress levels, genetics and epigenetics influence which disease goes on to manifest in any particular individual.

    Hope life is kind to you.

    AARA

  • Thank you. Very interesting. I am reading The Diet Myth at the moment and it mentions this reasoning. Many thanks again

  • Hi Parmak,

    I found the Diet Myth very helpful, when I read it last Summer.

    I hope you find a combination that works as well as possible for you.

    AARA

  • Another diet post, !!! Odd really I've just been told to continue to take Leflunomide as normal and am undergoing surgery shortly.

  • Hi medway-lady,

    I hope your surgery goes really well and that you make a speedy recovery. When I was taking Leflunomide prior to surgery I was told I had to stop the drug a minimum of 4 weeks prior to the surgery and that I had to stay off the Leflunomide for at least 3 weeks post surgery or until the external wound had completely healed if that took longer than 3 weeks.

    Times change and so does the advice and the risks various surgeons consider acceptable.

    Wishing you well.

    AARA

  • I've just recently had surgery and was told to continue with medication. Said it would take several weeks to get out of system. I had minor surgery so that may have been the reason for not stopping.

  • Thanks, an interesting post.

    Oddly (or not!) My blood panels were worse on dmards than off them!

  • Thanks for this interesting post. Have you tried any fermented foods? I've just bought Wild Fermentation by Sandor Ellix Katz and am making my first batch of sauerkraut...

  • Hi Matilda7,

    So far I have focused on boosting my good bugs with various "Natural" Yogurts. I only buy the ones which tell me the specific variety of probiotic bacteria. I like the Greek Style ones and I have found a local independent shop selling Kefir. I have yet to identify the benefits of one variety of Bifidus and/or Acidophilus over another, as the research I have found thus far does not appear to make this clear yet. I am aiming for variety at this stage.

    Something I read recently recommended eating full fat versions, as the theory is that the fat helps the bacteria survive your stomach acid. I prefer the taste of the full fat milk varieties and I have always favored "Blue" top milk not just for the taste, but for the higher vitamin D content.

    For me, I find Vitamin D works as a very effective anti-inflamitory. I am also a great believer in the virtues of omega 3 in the form of Krill oil. I have never suffered from the classic morning stiffness and I attribute this to my Krill Oil.

    Perhaps it is time to get some fermented vegetables into my diet.

    Thanks for getting back to me.

    I would be interested to hear from anyone who has inexpensive tips for developing a Healthier Gut.

    I recently read Michael Mosley's The Clever Guts Diet, but I have yet to try the recipes. There is a supportive web site of the same name. One person commented on the web site that the recipes were far too expensive for anyone too ill to be working and living at Benefit level. From what I understand the typical person with RA is unlikely to be well enough to be still holding down paid employment 3 years after diagnosis. I had to give up paid work 2 year before I got an RA diagnosis, so I am well aware of the financial challenge of trying to live a healthy lifestyle on a limited income.

    Take care.

    AARA

  • It's very easy to make your own kefir. I love the stuff...much Better than shop bought.

  • Hi Nettac,

    I have tried to make my own Kefir, but I was unsuccessful. My starter was in a powdery format.

    Please can you recommend where I can buy suitable grains online and I will give it another go.

    AARA

  • Hi AARA

    Are you in the UK? Will send you some grains if you want...I've been making it for over 20 years. (Or you can buy them on eBay)

  • Hi StormySeas,

    I am in the UK and I would be delighted if you would send me some grains. Please do not take this the wrong way but I suspect for me to give my full contact details would brake some rules on this type of site and I am not comfortable broadcasting my contact details to all myself.

    I will seek advice and get back to you, if that is OK with you. I think there is probably a way to sent a message just to you via email, but I am not IT savvy enough to have figured that one out yet.

    Thanks for your kind offer.

    AARA

  • Dear AARA,

    Before I was sick, my breakfast was always, cheese with toast, oatmeal with full fat fresh milk, yogurt and fresh fruit. But then, I still diagnosed of RA. And I read that I should avoid all the dairy but my rheumy objected to that. However, I tried to eliminate and putting them back, I find no different to me to take them as usual. I am still taking cheese and milk but hardly any yogurt these day. May be I will put yogurt bad again.

    Therefore, I think there is more than just the diet in RA. Beside having a very healthy diet, I did a lot of exercises, I went to yoga classes 3 to 4 times a week and I went hiking during weekend. My lunch was just the normal mix rice and I had fruits for my dinner. Some said I had been taking too much of fruits and I should not take fruits at night. I am not very sure of this kind of assumption though.

    Any

  • Hi Amy_Lee,

    We are all different and as such different things help one person but not another. Likewise with so many chronic illnesses, many of us take very poor care of our bodies when we are younger and they keep working just fine. Until we come down with a chronic autoimmune disease, none of us can know if we are going to get one, or which one will strike first or predict when it is going to happen.

    Dis-ease is often due to a very complex set of factors over a long period of time. The final tipping point between health and illness can be a combination of many things. For example, too little rest. Too much stress. Too many changes over too short a period of time. Poor diet over a long period of time. Infections, medications, genetics, epigenetics. The list could go on and on.

    Some things we can change, some we are stuck with, but usually one of the things we do have some control over is what we choose to eat. It is partly that nutrition has such an important role, but often it is simply people try changing their diet because it is an option they do have open to them.

    The more I read about how diet affects our microbiome and our gut health, the more I realize, how the enormous changes we have made, especially in the western world, in our diet and our medications, (to name but two), appear to be part of the root cause of the epidemic of autoimmune diseases.

    When I was a child non of my school friends had allergies or was intolerant of food or had an autoimmune disease. We had lots of childhood diseases, like measles and mumps, but as far as I was aware we all made a full recovery. How times have changed in a mere half century?

    Wishing you well.

    AARA

  • In order to support your bodies normal functions optimally, I also believe you need dairy. If you are ill and your digestion does not work properly it's hard for your body to digest dairy. When metabolism optimal you usually can. This however does not seem to be the case with yougurt that does seem to be harder,it has been noted. Eating fruits gives you a lot of important nutrients and also carbs. To sleep well through the night, if you wake up and are hungry it is actually better to take something more substantial than fruit to get you through the night like warm milk with honey or cheese with fruit before going to bed.If you wake up hungry in the night it often helps to take apple juice or orange juice. You need to support your glucose metabolism otherwise your adrenals are activated and cortisol production increased with the result that energy taken from your tissues resulting in muscle waist and weight loss.

  • Simba,

    I had fruits for dinner long ago before I was sick. Back then I could sleep well though and I did not get up at night. Unfortunately, I stopped taking fruits at night because some said it could be the fruits dinner that was too cooling for me.

    RA was so painful hence I could not sleep at night. Now basically I have got used to wake up in the very early morning about 4 am. So I really would like to learn how to sleep soundly again I guess.

    Amy

  • Sleeping is a strain on our organism. Lots of repair and cleaning work to be done. This is why we need glucose storage in our livers to give us energy for all this. It seems that in RA our glucose metabolism does not work properly and we do not have the needed supply in our liver for the night, this is why we wake up hungry. The situation is often caused by hypothyroidism that is found in about 30% of RA patients.

    With a diet that you reach your optimal metabolic basal rate you can get better sleep. Here are some tips that you may find useful.

    functionalps.com/blog/2012/...

  • How do you know that Vit D works as an anti-inflammatory?

  • We ferment a lot of our food - it's very straightforward.

  • What do you recommend for a beginner?

  • Sauerkraut is a good choice - as are fermented carrot sticks (maybe with some dill in there) and some fermented hummus.

    There's a good UK fermentation group on FB where they share things like kefir grains in exchange for post and packing and will do plenty of handholding as you're starting out.

  • What is the Facebook group called?

  • AS below - UK Fermenting Friends.

  • This all sounds very interesting . Will have to look into further. The only good for me so far with working with a nutritionist is my cholesterol became low. Nothing else helped the RA. So will definitely look into the fermentation way

  • Hard to know what is what... so much conflcting info out there🤔Foun this quite interesting discussion on fermented foods.

    raypeatforum.com/community/...

  • Just remembered the name of the FB group - UK Fermenting Friends :) Lovely, helpful, supportive people.

  • I was diagnosed at 29 and retired at 60! Pretty healthy for most of that time. In fact I'm on stronger medication now than when I was younger.

    I'm taking Optibac probiotics...and find they work well, not sure yet about the sauerkraut. Time will tell.

  • I can recommend this fermented recipe - I used a 3.5% brine (if that means anything to you) and it was ready to eat within 5 days tho' some of the jars lasted a lot longer.

    curiouscuisiniere.com/giard...

    Do you like kimchi as that's very easy to make.

  • Big pharma can't make any money selling dietary changes and I believe that's why there is not enough research conducted on this subject. Can you imagine what would happen to the budgets of big pharma companies if a major research study concluded that a plant-based diet reduced inflammation! egads...How would they survive? ;)

  • Hi AbbeyRoad

    I consider that Big Pharma have a lot to answer for. They are so much more interested in discovering the next drug that relatively healthy people can be convinced they need to take every day for the rest of their lives. That is where the big bucks are.

    From an ecological point of view the planet certainly needs more people eating a plant-based diet. Sadly I don't have the will power to go vegetarian or vegan, but who knows what my future will bring. I could try using the excuse that my teeth classify me as an omnivore, but I don't expect any committed vegetarian to take that seriously.

    For the many out there who are in a challenging place with their RA just popping the pills and getting through today is hard enough and the prospect of lifestyle and dietary changes probably seems overwhelming. I felt like that for many years. I hope your overall health improves and that in the meantime you get the support you need.

    Wishing you well.

    AARA

  • I completely agree with your statement that it's difficult enough just getting through the day and diet changes add another layer of difficultty. I'm a reluctant vegan at best and will likely not follow a plant-based diet forever, but it's worth trying to see if it reduces inflammation. Take care.

  • Thank you AARA for taking the time to share your experiences and do so wish you well for the future.

    There is certainly a more enlightened understanding happening with auto immune diseases and as you say new research regarding bacterial and metabolic causation is slowly filtering through. I last week saw a new rheumatologist (my original doctor retired) and he is very interested in all things new whereas the previous chap only ever wanted to discuss medication. When I tried to gain information regarding digestive issues confusing the immune system etc this original chap threatened to sack me! The new guy is interested in spondyloarthritis particularly and told me that there is evidence that bacteria from the gut is a highly likely cause. As regards RA he said that bacteria from the lung is being investigated and warned me to be very careful to avoid gum disease i.e. gingivitis as this 'germ' is under suspicion too.

    I found this consultation really refreshing and see it as a sign that at long last the shoulder shrugging "there is no cure" and "you will have to take meds for the rest of your life" scenario is changing. Apart from that, he advised Methotrexate injections rather than the tablets I have been taking as, of course, injections bypass the digestive system and are much more effective. I have a 6 month return appointment and am going to try the Paddison Programme in that time to really get to grips with my digestive issues which I know are the predisposing cause in my case as I ruined my microbiome in my 20's with a codeine addiction. Payback time did not come until 3 years ago when I was 59. So thanks again AARA and to everyone who have offered links and books to explore! I feel inspired!

  • Hi Sandrajb,

    May they breed a new generation of Consultants with an attitude like yours very soon.

    My Rheumatiolgist has always been great, just in a traditional way.

    My Mother also had RA but it was only active for a short period of her life. Her consultant was a Prof. Haslock and he was the top man in my neck of the woods for a long time. When my Mum said anything about diet his response was something along the lines "Do you think I would have wasted my career trying to help patients if a cure was as simple as giving up tomatoes."

    The times they are changing. We are just going to try to be proactive in the meantime.

    Hope the changes help.

    AARA

  • I've a chum who's a spondy. He's about 65 and was on heavy-duty meds for most of his life. He gave up many food groups a few years ago and is now med-free. (Not completely symptom-free but then he wasn't symptom free on the meds either.) His diet is very restricted but he's a foodie and still manages to eat amazingly delicious food, though he can't really eat out at all.

    This approach is not for everybody, and it's much harder than you think, but it's certainly worked for him.

  • HI Stormy Seas,

    Thanks for your encouraging post. I understand why people turn to this site when things are tough, but it is just so great to hear about the positive stuff too.

    AARA

  • I found your post enlightening and very interesting, I don't suffer from RA even tho that was what I was diagnosed with in the beginning but later re diagnosed with AS and inflammatory arthritis in a number of of joints, during the last 12 years I have been prescribed virtually every treatment available with varying degrees of success ,but I have never received a treatment that has completely stabilised my condition, even the treatments that had the greatest effect didn't help for long, I understand everyone is different and it can be a case of trial and error but I did find a lot of the treatments actually made my symptoms worse, but the thing that I could never understand was why I was never tested to see if my symptoms were allergy related and why pump someone full of drugs before finding out if the symptoms I had were due to an intolerance to something I was eating or using,,surely it would make sense to do something like a basic allergy tests before prescribing expensive and extremely serious treatments to patients that may not actually require them, i really do think it's time more time and money went into researching why so many people are being affected by so many different types of arthritis instead of coming up with treatments that just mask the symptoms, I'm not saying that the majority of people are being misdiagnosed but I do believe some people are and if they don't carry out basic tests first how will they ever know who genuinely needs the arthritis treatments they are prescribing and who doesn't require them at all, I don't know if what I think is right or wrong just know every time they change my treatment to something they say will have better results I end up worse than I was, and I end up taking even more meds for the side effects of the new treatment that they have prescribed me, and even if it helps with the arthritis symptoms I usually end up suffering from constant viruses and infections so I end up suffering one way or another 😢😡just want to know for sure that I am suffering from what they think I have and not because of something as simple as an intolerance to something that could be easily treated 👍🏻😱😬❤️

  • Hi TKLOVE,

    Thank you for your reply. Many of your experiences with the medication are similar to mine. Whilst I fully appreciate that medication has come a long way in recent years. The basic premise of aiming to crush your whole immune system as the objective of the treatment still seems crude and at best imperfect.

    One of the Nurses in my Rheumatology Department passed comment that RA was a poor relation in terms of money for research, when. compared with Cancer. So many of the drugs used in Rheumatology were originally developed as cancer treatments.

    Not all of you will agree with my stance and I know the dosages involved are very different, but I consider I would find it easier to handle really bad side effects of chemotherapy type drugs if I only had to take them for a short period of time and the alternative was death. Taking drugs with life changing side-effects for life is daunting to say the very least.

    No wonder we need the site.

    Hope life improves

    AARA

  • I'm happy for you that you are in a much better place, but I just don't understand how people agree to taking so many drugs, knowing that some of them are to alleviate the problems caused by another drug.

    I think I would have changed my rheumatologist.

  • This thread is literally pulling together much of what the more enlightened have been thrusting towards for decades so thanks everyone for all of this information. I am not throwing out my Biologic just yet (!) but it feels like time to revisit my gut health - I feel in a good place to do this armed with all the various links supplied here.

    A word though in defence of Big Pharma. I've worked with Pfizer and Lily and Abbvie and whilst there are undoubtedly shareholders and accountants only interested in profit, there are also dedicated medics and researchers who genuinely care about patient health and finding ways to improve quality of life and, of course, cures. Without Pharma we wouldn't have the drugs that save lives in ICU etc which I for one would be grateful for in extremis!

    And yes, bring on the new generation of Rheumatologists who aren't blinded by the conventional and resistant to change. Some of them are soooo patronising.

  • Hi Witness2,

    Thank you for your balanced response. I am sure there are many people in Pharma who are dedicated to improving patient health. Just as I consider anyone working in the NHS is dedicated to patient care. We need elements of the conventional approach, but I feel that over the years the conventional approach has become rather "blinkered". We need to metaphorically remove the blinkers to enable us to consider alternative approaches as well.

    There are Nutritional Specialists who abandoned the NHS over 30 years ago because the NHS was being so ineffective in areas like Chronic Fatigue Syndrome and the rising tide of auto-immune diseases. They were taking about Leaky Gut and probiotics way back then. When I had the luxury of Private Medical Insurance I found this approached very effective. I firmly believe that if the NHS could come to embrace what is now called Functional Medicine it could save the Tax Payer a fortune in the long term and more patients would benefit.

    It is sad that the GP who did the Doctor in the House series for the BBC feels it is necessary to set up in private practice to enable him to practice the style of medicine he has come to believe in.

    If it works why should it be exclusively for those who can afford to pay?

    Wishing you well.

    AARA

  • I couldn't agree more AARA. And yes, personally I keep well clear of those who hit upon a popular albeit genuine health idea yet move straight to exploiting its earning power without also (or first) attempting to submit the idea for peer review etc. However, having said that, I know how hard it is if you don't have a medical qualification, to persuade the medical profession to consider new information let alone subject it to clinical trials. Although RCTs are the current gold standard I think they ought not to be the only way to validate something. Evidence based practice should also allow for practice based evidence!

    Onwards and sideways...

  • I've just read your message and the way you felt mirrors so much the way I feel I had to reply,...The fact that you've overcome so much gives me hope,....I too feel that lifes not worth living if this is all the future holds and like you did I too see suicide as an option the only thing that stops me is my darling husband, I couldn't do that to him because I know he'd die too,...And there's my children I couldn't hurt them that much,....But your letter has given me hope,...I was diagnosed with rheumatoid arthritis 18 months ago but had had symptoms for quite a while before that and dismissed them as a frozen shoulder a stiff neck carpal tunnel syndrome etc,....Then almost overnight they overwhelmed me and I was in agony unable to wash, dress, feed myself,...I couldn't sleep because I couldn't lie down and if I did I couldn't get up or move at all,....I was prescribed methatrexate and prednisilone and at first it was like a miracle,....The pain had gone and I felt almost like my normal self.....Then slowly I began to experience what I think are side effects,.....Severe sweating....Breathlessness at the slightest exertion...Chronic fatigue, acute backache and so depressed I cry at the drop of a hat wondering if this is how it's always going to be,...Because she isn't sure of the reasons for this my Rheumatologist is trying a process of elimination and has taken me off the methatrexate,....I've only missed 2 doses so far and am told it could be 5-6 weeks or longer before it leaves my system and that it might not be the methatrexate but no alternative has been suggested and I totally agree with you in that no one seems interested other than prescribing medication that sometimes seems to do more harm than good,....I'm not prepared to take methatrexate again,...On it's own it doesn't work if I don't take prednisilone too the symptoms come back and i've been taking it for 16 months so what does that say,....I recently read of a way to manage diabetes without medication that seems to be 100% successful and as you said says big chem don't want us to know because it will affect the billions they make every year,.....There must be a solution for RA too and after reading your message i'm now determined to find it,....Any advice you can give me will be greatly appreciated i'm so glad I read your letter thank you

  • Hi Harimah,

    Your message really touched me. My primary reason for my post was to offer hope. I don't think any one person has all the answers, because we are all different and respond in different ways at different times. For over a decade I have taken lots of medication and the process of trying to reduce it has taken place over a period of years.

    Without the biological infusions, which finally brought the progress of my RA to a virtual halt I would not be where I am today, but the drug also left my immune system so depressed that I no sooner got over one virus and I picked up another one.

    I am realistic enough to know it is, in all probability, just a matter of time before the disease flares up again, but right now I am just enjoying the quality of life I have. Everyone has to find the right combination of conventional meds. and see if they can compliment and improve on that approach with things like lifestyle changes, diet, supplement and so on.

    I am currently reading The Keystone Approach Healing Arthritis and Psoriasis by Restoring the Microbiome by Rebecca Fett. I still like a paper copy, but if you are a fan of Kindle it is available for £2.99 from Amazon UK. No one book has all the answers and in places this contradicts some advice I have read elsewhere. That might be because it is new information, as it was just published earlier this year. Apparently it is a consolidation of information from over 400 Scientific Studies, so you cannot say the author has not done her research. There is a huge reference section at the back for those who want to check out any of the Scientific Papers themselves. I will be in a better position to comment when I have tried putting some of the recommendation into practice.

    This is the first book I have come across which is specifically aimed at Inflammatory Arthritis sufferers on the topic of Microbiome. To other readers out there. I would love to hear what anyone else who has read this makes of the advice, especially if you have tried out the recommendations and found it worked for you.

    I hope you find a better way forward that works for you soon.

    AARA

  • Thank you for the info on this book! Looked into it and really looks quite interesting. Think I will order it. Looking forward to sharing thoughts. xxSimba

  • Hi Simba

    Someone else has come back to me and asked about the books etc I have read. The one you have looked at might be right for you, but I am about to post a whole lot more resources so you might what to put a hold on your order at least until tomorrow.

    It will be on part of the same thread but I have yet to really understand why stuff comes up on which order.

    Wishing you well.

    AARA

  • Thank you, I'll wait😊

  • Hi Simba1992

    I have put up the new post about the books authors etc. It is very long. Once it comes through you might want to make yourself a cuppa before you begin reading!!

    Hope you find something which makes a positive difference over time. It took our bodies a long time to develop this disease, so the road back to health may take longer than we would like.

    AARA

  • Thank you AARA, It's a long and complicated journey to find out what works for you, lots of trial and error but always encouraging to be able to share the journey and experiences with those that believe that finding answers is an ongoing process. All the best to you and hope you will go on sharing on this forum.😊xx Simba

  • Hi Simba1992,

    Thank you for your kind and encouraging words. For so long I have missed having the strength and opportunity to feel I was making any worthwhile difference to anyone except my immediate family.

    AARA

  • Thanks for this informative post. I saw a very interesting BBC tv show about microbiomes that really made me think. It wasn't about RA but about why a child with a healthy life and diet had developed an unexplained health issue. The scientists they spoke with explained very well how the microbiome can affect so much and is only relatively recently being given more attention.

    Please do post specific authors and book info you found helpful as I am looking into this more.

    Thanks and glad to hear good news for you.

  • Hi BlightyFiveStar,

    I have had a request for more details of more books and authors regarding

    Microbiome

    Microbiota

    Health Gut

    Leaky Gut

    Gut-Brain AXIS

    Probiotics Prepiotics Dysbiosis

    It is all really about the bacteria which have lived happily in our digestive tracks for thousands if not millions of years and which we have really mucked up in the last 70 or so years.

    First I will list what I have read. Then what I would have read if time and finances permitted and then what I am aware of but which has not even been published yet!! The explosion in this field of research has been at least 30 years coming and now stuff is being published by masses of University academics on the one hand and in an easy to understand format mainly by Doctors and Nutritionists etc.

    You can learn a massive amount without spending any money just google Amazon Books. For many of the authors you can listen to them on YouTube, just type in their name or one of the words in the above list. On bad days I have the energy to listen when I do not have the energy to read.

    Most of it is written in America because they just seem to have produced more books. If it comes from a British Author I will try to remember to mention it.

    I am including lots of stuff about Gut Brain Axis and Depression because a very significant proportion of folk with RA and other Auto-immune diseases also suffer with depression, as I have. RA is enough to get anyone down, but it appears this has a biochemical basis as well as life just being challenging.

    I hope along the way you get inspired and at least a little more hopeful. Here goes.

    1. Missing Microbes. How Overuse of Antibiotics is Fueling our Modern Plagues

    Martin J Blaser MD

    A classic based on over 30 years of research. Great for those who ask why and are interested in an over view. Will not tell you how to heal you though in a.

    2. A Mind of Your Own. The Truth About Depression and How Women Can Heal

    their Bodies and Reclaim their lives.

    Kelly Brogan MD

    An alternative approach to SSRI and why the anti-depressants are often

    ineffective.

    3. The Clever Guts Diet. How to revolutionize your body from the inside out.

    Dr. Micheal Mosley. He is often on the BBC. Trust Me I'm a Doctor etc.

    An easy read. Lots of expensive recipes for which he has been criticized.

    Before you buy the book try the web site of the same name to get a feel for if it

    is right for you. I think the recipes look easier to follow than some of the

    American versions, simply because he's a Brit, but I have yet to try them

    Just finished reading this one.

    4. The Gut Makeover. 4 weeks to Nourish Your Gut, Revolutionize You Health

    and Lose Weight

    Also Gut Makeover Recipe Book

    Jeanette Hyde Nutritional Therapist

    Great theory, but for me up North on a limited budget and no local Super

    Market which stocks half the required ingredients not perfect. However these

    were the first couple of book giving practical dietary solutions I read and some

    of the principals I have put into practice, which I think have helped came from

    here. Just trying to tell you how it has been for me.

    5. The Keystone Approach. Healing Arthritis and Psoriasis by Restoring the

    Microbiome.

    Rebecca Fett

    She has read over 400 scientific papers as part of her research for this and it is

    new 2017. Some of her advice contradics what I have read elsewhere. This may

    be just a different stance. It may be because it is more recent than some of

    what I have read or it could be because it is more specifically about Arthritis

    than any other book I have read. This is the newest book in my "library" and I

    have not even finished it yet let alone started putting what is in there into

    practice.

    6. FOLLOW YOUR GUT. How the bacteria in Your Stomach Steer Your Health,

    Mood and More.

    ROB KNIGHT

    Another CLASSIC. Short easy read. Great place to start if you are new to all

    this. Co-Founder of the American Gut Project. See the web sites for both the

    British Gut Project and the American Gut Project. Listen to Rob Knight on You

    Tube before you pay for the book.

    7. The Gut Health Diet Plan. Recipes to Improve Digestive Health and Boost

    Wellbeing.

    Christine Bailey UK Based Nutritional Therapist. Lovely book lots of pictures, if

    am remembering it right. Currently on loan. Again if I am being critical, too

    sophisticated for my local shops and my budget. I was diagnosed as wheat

    intolerant over 30 years ago. I have probably not used a new recipe book in 30

    years, except for trying to use the ones on this list and I have not followed a

    weight loss diet for about 30 years. Lots of exclusion diets over the years. So

    all you out there may adapt to this following new recipes lark far more easily.

    8. GUT The Inside Story of you body's most under rated organ.

    Giulia Enders

    Short Easy Popular Read. Great biology lesson for those not familiar with their

    digestive tract.

    9. The Diet Myth. The Real Science Behind What We Eat.

    Prof. Tim Spector. British Academic. Involved with the British Gut Project.

    Another CLASSIC another good place to start. The style of writing makes is

    accessible to the vast majority.

    This next lot are mainly in my "Save for Later" section on my Amazon Account. I either have not got around to ordering them yet, or they are way beyond my budget, or perhaps I would need a Bio Chemistry Degree to really appreciate them. They may be right for some of you Medics reading this. Anyway it will give you a feel for just how much stuff at different levels is out there. Remember Amazon let you open the book and read a lot before you buy. That is how I got started.

    10. Gut Balance Revolution. Boost Your Metabolism. Restore Your Inner Ecology

    and Lose Weight for Good.

    Gerard E Mullins MD

    Just published 13 Aug. 2017

    11. The Vitamin Cure for Digestive Disease. How to Treat and Eliminate Digestive

    Problems Using Nutrition and Vitamin Supplements.

    Damien Downing MD

    This guy is a former NHS GP British. He has been doing this stuff for over 30

    years. He was talking about Leaky Guts, Probiotics and Elimination diets in the

    1980's. From 1987 until 1995 at least (when I had private Medical Insurance) he

    was my Nutritional Specialist. I had been ill for years and he got me back to

    health. If I had been able to continue to afford to follow his recommendation

    the last decade might just have been a much healthier time for me.

    12. Probiotics, Prebiotics and Symbiotics Bioactive Foods in Health Promotion.

    Ronald Ross Watson Oct. 2015 Price £77.22

    13. The Autoimmune Solution. Prevent and Reverse the Full Spectrum of

    Inflammatory Disease.

    Amy Myers.

    14. The Microbiota in Gastrointestinal Pathophyiology. Implications for Human

    Health Prebiotics, Probiotics and Dysbiosis

    Martin H. Floch Dec 2016 Price £98.63

    15. Brain Maker. The Power of Gut Microbiomes to Heal and Protect Your Brain

    for Life.

    David Perlmutter. Popular Functional Medicine Doctor. You will find loads on

    YouTube. I think I listened to an entire volume of a previous book on youtube

    for free.

    16. The Gut-Mind Connection. How the Hidden Conversation within our Bodies

    Impacts our Mood our Choices and our Overall Health

    Emeran Myers Aug. 2016

    17. The Gut-Brain Axis. Dietary Probiotics and Prebiotics. Interventions on the

    Microbiota.

    Niall Hyland and Catherine Stanton Pub. June 2016 Price £86.28

    18. Clinical Experiences of IBS. Brain-Gut Axis V Gut-Brain Axis

    Maria Esposito Pub. June 2017 London Based.

    19. The Psychobiotic Revolution. Mood Food and the New Scinece of the Gut-

    Brain Connection.

    Scott C. Anderson Publication Date set for Nov. 201

    20. Understanding Gut Microbiota.

    Gerald W. Tannock Pub. Feb 2017 Price £104.00

    21. The Human Microbiota and Chronic Disease. Dysbiosis as a Cause of Human

    Pathology.

    Luigi Nibali and Brian Henderson Pub. Sept 2016 Price £120.00

    22. Gut Microbiota. Interactive Effects of Nutrition and Health

    Edward Ishiguro and Natasa Haskey Publication date set Jan 2018

    Price £78.95

    23. The Human Super Organism. How the Microbiome is Revolutionizing the

    Pursuit of a Healthy Life.

    Rodney. R. Dietert. Pub. Jul 2016

    24. I Contain Multitudes. The Microbes Within Us and a Grander View of Life.

    Ed. Young Pub. Sept 2017 £6.29

    25. The Symbiont Factor. How the Gut Microbiome Redefines Health, Disease

    and Humanity.

    Richard A. Matthews Pub. 2014

    26. The Secret Life of Your Microbiome, Why Nature and Biodiversity are

    Essential for Health and Happiness.

    Susan Prescott and Alan Logan Pub. Sept 2017 Price 17.99

    27. The Whole Brain. The Micribiome Solution to Beat Depression, Anxiety and

    Mental Fog Without Prescription Drugs.

    Raphael Kellman Pub Sept. 2017 Price £17.99

    28. Cultured How Ancient Foods Can Feed Our Microbiome.

    Katherine Harmon Courage Pub. Due April 2018 Price £20.9

    29. Rewild Your 99% Microbes. It's time you started eating like it.

    Jeff. D. Leach Pub. Aug. 2015 Co-founder American Gut Project.

    30. The Essential Handbook to a Healthy Gut. Hoe a Leaky Gut Impacts your

    Entire Body and Hoe to Make it Healthy Once Again

    Evelyn Carmicheal Published June 2017 Price £6.70

    I did say there was a lot going on in this area. If you have got this far you deserve a prize for your time and persistence. If any of you find the time, money and energy to learn anything helpful from all this lot please post your feedback, not merely for my benefit but for everyone else on the site.

    This approach is not for all. If your are in a bad place right now the traditional approach may well be the only route you feel well enough to pursue.

    With so much going on and with so much potential to help so many sick folk improve and for so many others to retain their health, I believe our understanding of of the importance of the relationship between Health and Disease and between the drugs we take and the food we eat is embarking on a new era.

    We cannot turn back the clock of the last 70 years or so, but we can hope for better health and well being both for ourselves and our friends and families in the future.

    Sorry for the bad spelling and the typos. I am Dyslexic after all.

    Just hope this helps and encourages.

    AARA

  • Wow! That was really a list. I think the Keystone Approach..would complent best my recent research😊Thank you for this, looking forward to exhange of thoughts. Simba

  • Hi AARA! I am following your post with interest, because this group is so much larger than the ones dealing with Crohn's disease, but we often take the same medications. After being in remission for 15+ years my Crohn's is active again, and for the first time my doctor has put me on what I consider a "scary" drug: Azathioprine. I am very interested in learning more about dietary changes. However, due to already losing more than 75% of my intestines, I often find that probiotics, etc. seem to exacerbate my symptoms (bloating, stomachache, etc.)

  • Hi viajera,

    I do hope you soon find a way to get your Crohn's back into remission. I have a very good friend who has Crohn's and she has suffered badly. She finds juicing helps her, but I do wish she would accept that some of what I have been trying might be of benefit to her also.

    She has been the classic person who has followed all the Government advice about low sugar, high starchy carbs and as little fat as possible type of diet. She has been yo yoing on some diet or other, for most of the last 20 years. losing weight very successfully, only to put it all back, plus a whole lot more besides. Unsurprisingly she has Type 2 Diabetes and under active thyroid as well as the Crohn's

    I am still weighting for the NHS to wake up to the fact that this well worn path just appears to lead many to chronic illness. Well to be fair, I have only just really begun to wake up to some of the revised thinking about diet in the last year and a bit.

    AARA

  • Hi AARA- Sorry, just saw your reply! Thank you again for sharing such great information-I will be checking things out online to start! Thanks again for your words of encouragement !

  • Hi AARA,

    Hope you're having a good day.

    Thank you so much for sharing your inspirational story, I really appreciate it.

    My wife was diagnosed with sero positive RA in February of this year.

    I am a very inquisitive person by nature, so I wasn't buying it when the Rheumatologist told us that there was no cure and that we'd have to live with it for the rest of our lives.

    When I learned that millions of people suffer from RA worldwide I knew that we could find a solution because large numbers of people living with this disease meant that we'd be able to find trends and causation and I was willing to go to the end of the earth to find answers that would help my wife.

    When we know the cause of something, we can reverse engineer a solution and I believe that this has already happened with pretty much every disease on earth, it just hasn't hit mainstream medicine yet like you mentioned in some of your posts.

    Whilst searching for answers I found a cartoon produced by the American Arthritis Foundation produced back in 1968 that even back then hinted that Diet plays a part in Rheumatoid Arthritis. The fact is that medical science have known about the links between RA and diet for almost 50 years but they haven't done anything about it.

    After my wife's diagnosis, I went deep down the rabbit hole of learning as much as I could about Autoimmune Diseases and how they work. From there I went even deeper down the Rabbit hole and learned as much as I could about the Microbiome, Mitochondria and Epigenetics.

    From everything I've learned I know with 100% certainty that you can reverse RA relatively quickly in people who have not been suffering Arthritis symptoms for too long, but until now I was unsure as to whether it could be done with people who have lived with the disease for a long time and taken a lot of medication. I was worried that decades of Gut Dysbiosis and Mitochondrial Dysfunction would take too long to reverse.

    Your story has given me new hope. It proves that the body is incredibly resilient and whilst there is still breath in our lungs we can reverse most diseases as long as we have the time and knowledge.

    I am fortunate enough that over the years I have built some successful businesses but I've learned the hard way that money does not mean anything whilst there are still people suffering in this world with these horrible diseases. I've now made it my life's goal to bring this knowledge to the forefront of medical treatment for RA. I am currently working on some projects that aim to integrate this knowledge into the treatment of RA. I am hoping to do this with the help of the NHS, but if they won't come on board I'll do it myself and I have a few ideas on how we can bypass the NHS and get this information to people who are suffering from RA. It will cost a lot of money but we can do it. I've already put together a strong team of researchers and medical professionals who are on board with these projects. Many of them suffer from Autoimmune Diseases themselves so they've experienced the benefits of the correct Diet and Supplementation first hand.

    Would you mind sending me your email address so that I can keep in touch with you? I don't want to take up any of your time, but I feel like people who have achieved what you have achieved can help us put together a treatment plan that could help anyone reverse RA.

    I believe we've already put together a solid treatment plan for making RA completely disappear in people who are newly diagnosed, but the real magic would be to put together a treatment plan that can help people reverse RA who have lived with it for decades.

    My email address is allsoppa@googlemail.com

    I'd love to keep in touch. I think that your place in humanity can not be underestimated. You have solved a complex problem that millions of people and billions of dollars could not solve. There is a lot of power to that. You have achieved something truly incredible. You are an amazing person and I'd love to be able to contact you and ask you some questions. If anything, I'd love to just keep in touch and pick your brain from time to time.

    Thanks in advance for your help, I really appreciate it!

  • Hi Allsopp,

    Has anyone told you recently that you have made their day. Well your kind thoughts words, determination and enthusiasm have sure made mine. Your Wife is a very lucky woman. Unlucky to have got RA, but lucky to have you doing your best to make a positive difference.

    I have just put up another very lengthy post about books, authors and other ways to access more info. on various topics associated with Diet Microbiome etc. You may well have covered the areas I have actually read about, but there are about 20 books which I have listed, but which I have not yet read, either because they have just recently been published, have not yet been published, are out of my price range or need a degree in Bio Chemistry to appreciate them.

    You might find something of interest. With so much going on in this area it is hard to know until the text is in front of you if you have already come across it before or when you are going to find a gem of info. which for you is really significant.

    Thanks for the email address. I will make contact with you.

    AARA

  • AARA and Allsopp BOTH - Bless you both! I have read it all, shouting 'YES 'Yes' 'yes' .. a bit like Harry met Sally... I am on the same journey, suffering from RA [they tell me] and like Stephen Fry , insatiable curiosity. Typing may deteriorate from fat fingers here and the bottle of cava I opened on finding like minds... Nearly 75, diagnosed RA 2 yrs ago, lungs wrecked by MTX[methotrexate ] but out of wheelchair, lungs repaired by 5/7 swimming and singing and brain fog gone x B12. Busy reading, researching, went to conference at QUB on microbiome, leaky gut etc - hooked and fascinated. Apparently IBS went thru roof from 50s on ... maybe inc'd no. of fridges, freezers, readymeals...Cut back meds to half dose of sufasalazine, dumped all plastics, using SS and china / glass and eco products. cut grains,legumes, dairy , increased fresh / org veg, little meat [lamb/venison only and rarely as grass fed] . Result for me - minimal pain, ESR down from 106 to 27, crp from 76 to 1.2. Still stff in mornings, hands cramp on steering wheel, ankles swell but doing not bad.. Salads, eggs, bhajis for breakfast suit me well. No painkillers at all. ThAi kick boxer anklets, support mittens ... so far so good. Now worried 'pride comes b4 a fall' but impelled to share . Merci aussi a Simba. Agree stress also a poss. factor, but if you can't remove the cause, uou have to change your attitude/response to it, I guess.

    ps refused a 'pain injection' for ankle so relegated to annual checkup but so far so good, anyway. Best wishes and minimal pain to all.

  • Hi GranAmie,

    Thank you for your kind word of encouragement. I read your reply with very mixed feelings. Saddened by what life has thrown at you, but overjoyed and up lifted by your attitude and determination.

    You truly deserve to be getting a good outcome. I think you are further along this road in many ways than I am and putting in far more effort about your diet and exercise.

    Finally I am gaining confidence that my future may well be better, or at least not worse. When you have had over a decade of you entire life just disintegrating around you, it is all too easy to get into the habit of expecting more of the same or worse. Especially with GP's who say things like you have a systemic, progressive, degenerative disease, what do you expect? His words might have a lot of truth to them but it does not make them welcome or easy to hear and come to terms with.

    May the right path for you be made very clear.

    AARA

  • another P.S 4u AARA. Ididn't explain why no plastics, non stick pans, did I?.

    The argument put forward at the conference was that our microbiome is affectd by our diet, by stress, by environment [ fumes, air fresheners, chemically based hair/beauty/cleaning ] products and by effects ofcontainers etc on foods. For years I said that many foods tasted plastic to me but didn't relate that to processing / packaging / cooking in micro etc. Cooking in tinfoil is bad as this changes chemically when heated. same re nonstick pans etc. so it's not just abt diet. hope this makes my approach a bit clearer - it seems to work 4me - at the mo. best wishes xx

  • Hi GranAmie,

    A lot of what you have just said about food containers, pans, air fresheners etc. reminds me of the stance taken by an American Doctor who, about 30 years ago, was the go to guru when it came to what was known as Intestinal Canaidiosis, or Yeast overgrowth. His book called the Yeast Connection was pretty much about leaky gut and dysbiosis in the context in which it was known back then.

    They knew that when you killed the good bugs in your gut with anti-biotics that some people were prone to getting an overgrowth of the yeast Candida Albicans more commonly known as Thrush. They were barking up the tree of good gut health, but they knew far less than we have discovered in the last few year.

    The Yeast Connection focused quite a bit on moulds and problems with mouldy soil in house plants, and fumes of chemicals in paints, cleaning products, air fresheners and so on. Basically what might today be refered to as environmental toxins and about how some people were more sensitive than others and that once you had got your leaky gut sorted you would be less prone to allergies of many kinds.

    Feel really sorry for the few Doctors who have been banging on about this since the 1980's. They were treated, by the mainstream, as having totally lost the plot. Finally the scientific research has caught up with them, but the mainstream NHS still appears to mainly be determined to keep its' head firmly buried in the sand.

    Things will change I am sure. I just cannot wait for it to take another 30 years, as there is a good statistical probability that I will be six feet under by then. Will just have to live in hope.

    The fact that what you have learnt and put into practice is working for you is really what matters. Keep up the good work and if there is any justice in the world you will continue to reap a healthier rewards.

    Take care. Wishing you well.

    AARA

  • I wish you the very best on your journey, too! Swimming helps me to relax - imagine they turtles swim in the Aegean... slow, stately, looking round . Cool water helps too. Being sent for a heartscan soon, wish they'd do hands / feet instead to see if I am in remission. Low bp, low cholesterol and I know my heart is strong so waste of money, NHS. I do eat fish regularly say 3-4 weekly, and drink water... the cava was a 'breakout' and did me no good.. but so far, so good. Rude gestures to w/chair sitting in corner here. Now I'm looking forward to a new batch of reading as listed by Allsopp, as research is my thing. Just had shakshuka for brekkie [ peppers, onions, leeks, cress fried in ghee with a beaten egg mixed in. take care - you in UK? xx

  • This is an admirably comprehensive and excellently written article. (You should save it to explain yourself if necessary to any future medic.) Thank you for taking the trouble to make this contribution. Good luck and God bless.

  • Hi Hobbledehoy,

    Between the lot of us we have far more wisdom and encouragement then anyone of us could accumulate in a single lifetime. That is why there is just so much untapped potential in this type of forum.

    Thank you for your kind words and good wishes. May you be blessed likewise.

    AARA

  • Thank you for your inspiring Blog. I started 22 months ago after a flu jab would you believe! I have changed my diet read No Grain No Pain book which helped. I have drug allergies and am coping with steroids at present. Had two biologics and about to try half dose Cimzia but wish I could do without it . I also starting taking prebiotic/probiotic combined hoping it will help. I never eat anything processed have reduced dairy and Gluten though not completely .

    I know if eat processed food I will have an upset tummy which proves it's no good to me.

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