I hope you're feeling good today. If you don't feel good today, I hope you feel good tomorrow!
I haven't been on here as much as I'd like recently as I'm busy building a blog where I can write about my research relating to RA and share my findings in a lot more detail than I can do here. I'm conscious that these kinds of posts are not everyone's cup of tea, so I don't like to go into too much detail in my posts in case I scare anyone or overload them with information.
But on the flip side I do think it's extremely important that information like this gets shared on busy forums like this. Google search results are dominated by articles that talk too much about reduced life expectancy, dangerous medications and incurable disease. There is a lot of hope and solutions for people living with RA, but it is not easy to find. We need to try and find a way to get as many people to see this information as possible.
Over the last few months I've been banging the drum on here pretty hard about how there is now overwhelming Scientific research that shows that symptoms of RA are caused and driven by various environmental factors. The factors differ from person to person, but there's strong evidence to suggest that if you can identify your triggers, you can start to reverse the disease. How long it will take to see a noticeable improvement in symptoms is difficult to say, but it's getting to the point where it is pretty hard to deny that removing triggers results in greatly improved symptoms and massively reduced levels of pain. Figuring out the triggers is the most difficult part...
Anyway...
I listened to a podcast earlier today where a leading Biohacker was discussing the role that specific foods play in modern Disease with the former President of the American Heart Association.
They talk in great detail about Lectins, which are a type of protein found in many foods and I've read strong scientific research linking them to RA. Lectins appear to be Kryptonite for RA sufferers and yet many people with RA eat a diet very high in Lectins.
I've posted a bit on here before about how Lectins can aggravate RA, but this podcast does a much better job of explaining the Science behind it than I can.
I thought I'd share the podcast here for anyone that would like to listen. I found it fascinating.
We are embarking upon a very interesting time in our history where large organizations are no longer able to control the flow of information like they used to. 20 years ago it would be very difficult for people like Dr Gundry to share their knowledge and research on a mass scale, but now with the internet it is very easy easy.
I found the part where they talk about TnF levels rising in the blood after someone eats Lectins particularly fascinating. Could the Pharmaceutical industry have worked out the link between Lectin consumption and increased TnF levels many years ago which ultimately led to the development of Biologic drugs which block TnF production in the body?
Who knows. I'm not going to get into conspiracy theories, but the fact that we can influence our TnF levels with what we eat is extremely exciting.
Could removing Lectins from the diet be more effective at treating RA than taking Anti TnF Biologic drugs? Both strategies reduce TnF levels in the body, so it's definitely something interesting to think about.
Neither is it anything new. If it was then I'd prick my ears up & pay attention but it's another 'go gluten' when you're not coeliac. We're told not to eat meat yet now we're told we should. We're toId to not overcook veggies, now we're told we should. We're told to eat brown rice, now we should be eating white. Enough, we're not daft, we don't eat what doesn't agree with us, it's simple.
When my wife was first diagnosed with RA, we had no idea that food could have such a big impact on mood, energy levels and depression.
If you would have told me that certain foods could cause joints to hurt, I would have told you that you were crazy. But we now know through research that foods can trigger joint pain.
I think it's very hard for most people to connect the dots between food and pain in the body. Maybe me and my wife were ignorant in not knowing the connection, but I am guessing that most people are like us.
Because of this I think it is just as important that we discuss these issues as it is for us to discuss medications and emotional support for people living with RA.
If we would have let sceptics decide the fate of our healthcare system we'd all still be dieing of Smallpox and Tuberculosis.
In order to move forward and find solutions for treating RA we need to take the opinions of people like Dr Gundry seriously.
He has dedicated most of his life to this research so there has to be some truth to it.
You are right in that we have got a lot of dietary advice horribly wrong over the last 50 years, but that's life. We learn from our mistakes and we'll figure everything out eventually.
Technology is developing at a rapid rate, which enables us to understand the human body in ways that we could not just 5 years ago.
Did you know that a Tech company have managed to develop a camera using Hubble Telescope technology that can fit in the body and capture images of Bacteria and Cell Processes that no Camera technology was previously able to see because the Bacteria and Cell Processes were too small to be picked up by any Camera equipment that existed.
We can now use Hubble Telescope technology that was previously used to see stars millions of light years away to learn more about our bodies.
We can see how our Bacteria and Cells react to different kinds of foods.
To dismiss the significance of these findings is not a good idea.
If sharing that podcast helps even 1 person ease their RA symptoms then I think it is worth sharing.
" you can start to identify your triggers and start to reverse the disease"
To me there's always an underlying inference, an element of blame, or personal responsibility for having this disease in statements such as this? Neither do I feel them to be entirely accurate.
In my view, whilst environmental factors do impact and diet absolutely plays a part, I'm unaware of any definitive proof that either are the absolute 'cause' of RA and therefore it may not be totally within our control . Also , I don't see with diet or anything else, how one can reverse damage done through RA?
I agree, information should be shared and the better informed one is, the more in control one may feel but I also think pushing certain information can be misleading to certain groups of people ( newly diagnosed etc) and at some stages , perhaps isn't as helpful as you believe ?
People, generally, will do the best they can for themselves and make healthy choices around diet , exercise, meds and I find that pushing the same theme over and over a little counter productive, if honest.
Yours (& my) view is that of the scientists, not the natural health 'doctors' (who trade as doctors for one reason only in my view, yet aren't qualified to do so in the true sense & which we recognise only as a qualified medical doctor). Yes, please share info but I think it's been recognised it's too much, we're able & at liberty to research at will but this isn't helpful. It is as Postle has reiterated, conspiracy, nothing more & I agree, we don't need yet more supposition to addle our more susceptible member's thoughts, particularly those of our newer or newly diagnosed members. Grump over, sorry Marie.
I'm really sorry to hear about how you're feeling today Gnarli. I really hope you feel better tomorrow.
My wife is a real person. I don't lock her in the basement and she isn't a blow up doll either.
She's helping to share everything we are learning with people in a different kind of way. Forums aren't really her thing, but you can keep track of her journey by keeping an eye on her Instagram account:
She isn't as interested in the Science behind Autoimmune Diseases as I am. I have become fascinated by how all the processes in the body work and how they contribute to how we feel on a daily basis. I've even reversed Health issues that I have lived with my whole life by complete accident. I wasn't trying to Heal myself, but it just happened by following the same diet as my wife.
We kind of have a double pronged approach to tackling this.
I try to do as much research on the Scientific aspects of RA and Autoimmune Disease, whilst she focuses on research into how Exercise, Nutrition, Stress and Meditation.
I think that Autoimmune Diseases are way too deep and complex to try and figure them out alone. I don't know much know anywhere near as much as her about how Exercise, Nutrition, Stress and Meditation can impact RA and that's ok, together we're a team and we try to figure things out, but that's also the reason why I like to come to forums like this so that we can all share our knowledge and experience. We all have different perspectives on RA and this will help bring us closer to an ultimate solution that works for everybody. From what I've learned in such a short space of time I believe that the solution already exists, we just need more people to try the solution to absolutely prove that it works.
I also want to let you guys know that there and a lot of people out there on the same path as me and my wife.
Below are links to a couple of people on Youtube who have documented their journey of putting RA into remission without the use of any medications. One of them is seropositive and one of them is seronegative.
People are putting their RA into remission every day, and there's a lot of information out there that can steer us down the right path of how to do it.
I'm not trying to convince you that any of this works, I am just concerned that your negative reaction to my posts could make some people feel like there is no truth to any of this.
If you can find evidence to prove that everything I have said is not true, then please show me, until then please keep an open mind.
Thank you for sharing all this info! I can tell you spent a lot of time and energy trying to help others but unfortunately some don't appreciate it. I always learned if you don't agree to someone's opinion, no need to say anything negative, just move on! Well, I want to say I do appreciate you and your lovely wife for sharing...you have a caring heart!
Thank you for your information Allsopp. I have aggressive RA and qualified quite quickly for biologics. I am in pain everyday and have extensive joint damage. I struggle with a young family and some days I can't see any light at the end of tunnel so please keep posting. I have an intelligent and open mind and I want to read them.
I'm so sorry that you're in so much pain at the moment but I also want to fill you with hope that you're in the best possible position to start trying to reverse your RA.
A lot of people talk about the dangers of Biologic drugs, but these drugs are also great because the way they work means that they do not cause any long term harm that cannot be reversed.
All they do is block the production of T and F regulatory cells produced by the immune system. T and F regulatory cells are very important, but when you stop taking Biologics, the body starts to produce them at normal levels again.
It would take longer for someone to heal themselves up taking Oral Methotrexate, Sulfasalazine, Prednisone and Anti Inflammatories, because all these medications go into our Gut and disrupt our Microbiome's.
The great thing about Biologics being injectible, is that they bypass the Gut, so you could potentially start to see improvements in your pain much faster than someone else who was taking more Oral medications.
Injectible medications are often thought of as being scarier than Oral medications, but it is the other way around. People have got it wrong. Needles are scary, but they are far less harmful to our health than the stuff we put in our mouth.
This is why people that take injectible Methotrexate often experience far less side effects than taking oral Methotrexate.
If you're looking for some success stories, here are a couple of people who have documented their journey with reversing RA without medications:
Both of those women went Vegan to reverse their Rheumatoid Arthritis, but this is not necessary. All the research I've read points towards a Paleo diet being the optimum diet for RA. This is great news because it means we can still eat almost any kind of Meat, Fruit or Vegetable as long as it's not deep fried or coated in sugar, or gluten containing marinades etc.
It's really annoying because Health Unlocked won't let me link to specific Youtube videos, but here are a few more pieces of inspiration...
Go to Youtube and search for:
"Terry Wahls Ted Talk" - watch her Ted Talk on "Minding your Mitochondria" it's amazing...
Then search for
"Dr Terry Wahls discusses her Multiple Sclerosis Protocol" - look for the video where she talks to Dr Rhonda Patrick for about 20 minutes.
Another really cool presentation on Youtube can be found if you search for:
"How I Reversed Multiple Sclerosis - Palmer Kippola (Dec 2016)" - Try to find her presentation from the Silicon Valley Health Institute, it lasts for about 30 minutes.
And also never, ever resign yourself to the fact that your RA is down to Genetics or bad luck.
Scientists have recently discovered that Genetics don't dictate what diseases we get, instead a Bacteria called Mitochondria that live in every cell determine what Diseases we develop [including Cancer].
Mitochondria are responsible for controlling how our Genes work. Disease is caused by faulty Genes and damaged DNA. If Mitochondria work optimally, Genes also work optimally.
Scientists have recently discovered a completely new layer of sophistication in the body called Epigenetics, which shows that we can even alter our DNA and Genetics based on lifestyle choices and Environmental factors. We can damage our DNA and Genes with the wrong lifestyle choices which ultimately leads to Disease, but we can also alter them in a way that reverses Disease and prevents future illness.
It is fascinating!!!
Next time you have an appointment with your GP or Rheumatologist, ask them how much they know about Epigenetics. I'm guessing they won't know very much!
If you go to the TED Talk Youtube channel and do some searches for "Epigenetics" there are a lot of really interesting presentations:
When my wife first experienced joint pain, I'll never forget in her first appointment with the GP they asked her if her parents or Grandparents had ever had RA.
I know the GPs mean well, but they just don't get it!!!
Genetics only play a small part in the development of Disease.
I really believe with all my heart that there's a way for you to make your pain go away or at the very least dramatically reduce it.
We are honestly not that complicated. Our bodies perform optimally based on a series of chemical reactions. When the chemical reactions start to fall down, bad things start to happen. If we can figure out what chemical processes are falling down and rebuild them, Disease and illness should go away.
Also try not to be too scared by excessive joint damage. Broken bones can fuse back together.
The inflammed Synovial fluid around your joints is making it hard for your joints to repair themselves, but when you reduce inflammation you can also start to work on repairing your joints.
Try to eat as many Collagen rich foods as possible. Collagen is what your body uses to repair damaged bone and joint tissue.
You can buy Bone Marrow bones from Butchers and they even sell them in Waitrose for very cheap. You can buy a nice big, thick Beef Bone Marrow bone for just £1. Boil them down and turn the stocks into Soups. The liquid Collagen taken from the Bone Marrow is excellent at helping the body rebuild damaged bone and joint tissue.
Another good source of Collagen is Organ Meat.
I know it's disgusting, but Organ Meat is very high in Collagen.
Throughout history our ancestors ate a lot of Organ Meat, but it has disappeared from the Western diet in recent years.
The importance of eating Organ Meat is deep rooted in nature. The head of the pack in Wolves will always get the first opportunity to feed on any animal that the pack has killed. The leader of the pack will always feast on the Organs first, leaving the Muscle meat for the Wolves lower down in pack order.
This is because Organs contain so many more nutrients than Muscle Meat. Animals know what is best for them, but somewhere along the line we have lost sight of the fact that we are still animals.
Evolutionary trends show us that we should be eating more Organ meat, than Muscle meat. This is just another example of how the modern world has got everything wrong.
I really struggle to eat Organ Meat myself because the texture is tough to deal with, so if you can't stomach Organ Meat you could try and eat more Meat that comes from legs and bones.
For example, Chicken Legs and Thighs are far more rich in nutrients than Chicken Breasts.
People think that lean Breast Meat is what is good for us, but it's actually the darker, greasier cheaper cuts from the Thighs and Legs that are more nutrient dense.
And don't worry about putting on weight from eating more fatty cuts of Meat. This is a total myth.
Good quality fats actually fuel your body, they don't make you fat. Healthy fats actually fuel your Mitochondria and give you energy. This science is actually now making it into the mainstream.
The US Government recently revised their dietary guidelines this year to state that Healthy fats have no negative impact on Health, Cholesterol or Weight Gain. Unfortunately the British Heart Foundation hasn't caught up with this yet. Most of the information on their website is out of date.
A really good podcast which explains the importance of good quality fats in our diet is this one:
WOW. Thank you for your time. I shall get stuck into all that info. I am running out of options at the moment. I am in my fourth year of diagnosis , three failed dmards , one failed biologic and I have been told I need two total knee replacements. My current biologic isn't great and is topped up with diclofenac , codeine and sulfasalasine which gives me nausea. So , I appreciate some sensible information to help me try a new approach ,alongside the drugs of course. My brother was the only other family member with RA and sadly he died from complications directly related to the disease despite taking his drugs. When I ask my medical team why my drugs are failing I get offered Prozac ! !! Thank you again Allsopp. Best wishes to you and your wife. It will be a while but I will keep you posted of any progress I make . Please keep me posted on your progress.
Be kind to yourself today, rest up & enjoy the warmth. x
You seem to be confusing disease control with symptom control. The drugs that can control the disease and slow down progression do not necessarily stop pain completely. I think that lifestyle changes can do a lot to limit pain and fatigue but that requires consideration and common sense and the changes themselves have to be sustainable.
Over the last few months since I've been posting here I've seen a few people try to share information like this and they've been shot down and driven out by an angry mob.
When my wife was first diagnosed with RA back in February I came on here everyday and often had tears in my eyes whilst reading people's posts. I am a very emotional person and it was tough for me to read post after post after post about people struggling with Chronic Pain whilst trying to battle with the serious side effects from medications.
I had started to do research back then and all I could find were articles by the NHS, WedMD and Arthritis Research UK that talked about no cure, no hope, deadly medications and reduced life expectancy.
My wife is only 30 years old. We had just bought a house and we were planning to have another child. She went from being perfectly healthy to not being able to walk in about 2 months. We were both terrified for our future.
I am shocked and upset that some people thought I came here to sell something. It is a dangerous attitude to think that anyone that tries to offer help is doing it for selfish reasons or to try and sell something. You need to be more open minded. People are inherently good. If they try to offer help you should be grateful that they took time out of their day to help. You shouldn't shoot them down. I have spent hundreds of hours over the last 6 months researching the causes of Rheumatoid Arthritis and how to reverse it. I could keep all that information to myself, but instead I want to try and share what I've learned with as many people as possible because I have seen first hand how this Disease can destroy people's lives.
We know for a fact that Rheumatoid Arthritis is more difficult to reverse or put into remission the longer you have it, so I believe websites like NRAS should have big, bright, pink banners on the top of every page linking to information like this, so that people who are newly diagnosed can start experimenting on themselves, removing triggers and healing the underlying causes of their health issues. I believe one of the reasons why my wife has had so much success reducing her symptoms is because we jumped in straight away. We didn't sit on the fence.
This is how I looked at things before we went on this journey...
It is absolutely possible that all the research out there is a load of rubbish and not true. But by the same token it is also possible that all the research could be 100% correct. The truth is probably somewhere in the middle. I think it's much better that we try to use the latest medical research to heal ourselves rather than sit and wait for something to happen.
Because really what are our options?
We could try to reverse our RA using the latest Science and if it doesn't work, what have we really lost? Nothing ventured, nothing gained. If there's even a 1% chance that this stuff works, surely it has to be worth the gamble? All you have to do is eat different foods and take some supplements. It's not like I'm coming here asking you to pay £800 a month for a new Biologic drug!
If 8 tiny little Methotrexate Pills can destroy your Liver, surely platefuls of food can have the same profound impact in both good ways and bad? Call me crazy, but it seems quite logical to me...
In the interest of transparency I want to show you that I have no links to Bulletproof Radio, Dave Asprey, Dr Gundry or any of the other Scientists, Researchers, Biohackers or Doctors that I have mentioned in my posts over the last few months.
I am a real person that lives in a small town in Wales called Newport. I have an 8 year old son and a Shih Tzu called Cesar.
As you can see my name is the same as my username on this Forum.
My wife is also a real person who has been living with Rheumatoid Arthritis for around 8 months. At first she was super sceptical about all the Science, but now that she has seen the benefits herself, she is trying to help others start to reverse their RA in her own way. You can follow her journey here:
4 months ago my wife couldn't walk in the mornings without crying from the pain. We even spent 4 days in hospital with a severe flare in her Hip / Thigh area that the Rheumatologist believes to be Bursitis, which is a complication of RA in some people.
My wife tested positive for RF Factor and had high Anti CCP levels.
After 4 months of self experimentation, a lot of research and a hell of a lot of trial and error my wife would now describe her RA symptoms as "minor niggles".
We are able to control my wife's symptoms on a day to day basis. If she eats bread today, she won't be able to walk tomorrow. But if she goes cold turkey on Dairy, Gluten, Wheat, Sugar and Nightshades her pain will virtually disappear within 3 to 4 days after flaring up from eating the wrong thing.
This is all Anectodal Evidence and you don't have to believe me, but this is something that I live with and see with my own eyes everyday. What we have experienced is backed up by mountains of Scientific research that skeptics choose to ignore.
Skeptics will say that RA is an unpredictable disease that comes and goes, but people with high Anti-CCP levels typically experience very few breaks in their symptoms and tend to have a more aggressive disease course and poor prognosis. My wife has experienced very minimal pain over the last two months and she hasn't taken a single Steroid or Anti Inflammatory drug for RA ever. She does not take the Sulfasalazine that was prescribed to her because we have read a lot of research that suggests it could do more harm than good. She started taking 15mg of Methotrexate 2 weeks ago. Our strategy is to use the Methotrexate to keep inflammation levels as low as possible whilst we work hard to heal the underlying cause of her RA. We are hoping that she won't have to take Methotrexate for too long. Based on some of the research I've read and the current state of her health and symptoms, we expect to be able to come off Methotrexate permanently sometime within the next 6 to 8 months.
Her body will probably always produce RF Factor and Anti CCP antibodies if triggers are introduced to her environment, but eventually we should see those antibodies disappear from the blood completely as time moves further and further away from her being exposed to the environmental factors that trigger the release of these antibodies by the Immune System.
I really don't like confrontation, so I will never post on HealthUnlocked again, but before I go I want to share a few Scientific studies with you, so that you can make your own mind up about the stuff I have been talking about over the last few months...
Science has proven that 90% of our Immune System is controlled by our Gut. They teach this in medical school. It is undeniable. Here is a study that concludes that Inflammation in the Gut results in joint inflammation in Mice:
Gut Dysbiosis [SIBO - Small Intestinal Bacterial Overgrowth] is a medical condition recognised and treated by the NHS. You can heal / cure / reverse SIBO. People with RA that heal / cure / reverse their SIBO often see a DRAMATIC reduction in symptoms. If the NHS recognise SIBO as an actual medical condition and Scientific research has proven beyond all reasonable doubt that people with RA suffer from SIBO, why isn't treatment for SIBO a first line treatment in Rheumatoid Arthritis?
These studies are not isolated studies. There are literally thousands of studies like these out there. If you want to learn more go to pubmed.gov and start searching. Scientists have cracked the RA code, but it hasn't hit mainstream medicine yet and it probably won't hit mainstream medicine for a long time.
I read a study the other day [and I can't for the life of me find it now], that tested 80 people newly diagnosed with RA for SIBO. 90% of them tested positive for SIBO.
Instead of throwing Prednisone, Methotrexate, Biologics and Sulfasalazine at people, why don't we start healing SIBO and see what impact that might have on symptoms and levels of inflammation in the blood? There's overwhelming Scientific research that suggests healing SIBO could put RA into remission.
When I discuss these things with people it's almost like that scene in the Matrix between Neo and Morpheus.
Take the Red pill and accept that there is no cure and wait around for the next 20 years until the NHS eventually catchup to the latest Science.
Or take the Blue pill and start to learn about how RA develops, how it can be managed and how we can make lifestyle choices that can start to reverse it.
Another good example of how mainstream science is way behind modern science is when a Rheumatologist will tell you that tendon, joint and bone damage in RA is irreversible, but again we know that this is not true. It is indisputable that this is only the case because Inflammed Synovial fluid surrounding the joints makes it hard for them to heal. If we reduce inflammation around the joints and supplement with Collagen we can heal Tendon damage, joint damage and bone erosions!!!
This isn't Pseudoscience, it's FACT!!! How do you think broken bones fuse back together???
Leonardo Da Vinci once said that there are two types of people in this world.
1. Those who see.
2. Those who do not see.
I guess it's ironic that Da Vinci dedicated his life to Science, Technology, Geology and Art. I am guessing that he also faced a lot of scepticism back in the 15th century when he tried to build Airplanes and harness Solar Energy. They were stupid ideas. There's no way we could ever fly through the sky in metal objects or harness power from the sun, right?
Do you guys see what I am saying?
The same people who shoot down the science and solutions to "incurable" Autoimmune Diseases today are the same people that told Da Vinci that we'd never be able to fly or harness energy from the Sun.
These people slow down progress. You must ignore them.
I know that this post will upset some people, but that's ok because if my post even helps one person ease the pain of RA then it's worth it.
Please, please, please, please, please do your own research. The answers are out there and you can start reversing your RA today.
Go to pubmed.gov and start searching for things like "Gut Microbiota Rheumatoid Arthritis" and "Gut Dysbiosis Rheumatoid". Also look into the correlations between the different Autoimmune Diseases. Diabetes, Multiple Sclerosis, Rheumatoid Arthritis, Celiac Disease, Ankylosing Spondylitis, Crohns, Graves, Psoriasis are all so similar. You can often learn a lot about RA from reading Scientific studies on other Autoimmune Diseases and then connecting the dots back to how they behave in relation to how RA behaves.
Good luck in the future. Please have faith. I would not be taking the time to write these posts if I did not wholeheartedly believe in the research I have read.
Never listen to sceptics. They are often blinded by their own ignorance. Always do your own research and make your own mind up.
I won't be posting here anymore, but I hope with all my heart that you take the time to go down the rabbit hole of solving your RA puzzle.
I promise you that the answers are out there, you just have to keep looking.
We don't wish you to leave necessarily, rather accept some of us have also done our research, even tried what you promote & choose to continue on traditional meds, because they work for us. What we do wish is that we're not spoken to in a similar manner to others who have done research along the same lines & become almost evangelical in their approach & who in a nutshell say don't listen to your Rheumy. Who, basically is the person who has dedicated his/her adult life to the specialty, the one who doesn't tell us not to take meds but do care for our wellbeing, who know through various complications of unmedicated RD that it can affect essential organs & shorten lives, or at best riddle through our joints. I asked my Consultant, a highly regarded Professor in a University Teaching Hospital, to be frank with me, to not dance around difficult areas of the disease & I'm pleased to say he didn't, rather as well as answering my many questions gave me the 'homework' I requested in the form of access to reputable sites, including professional ones. I also have access to others here in the UK having been an employee of a GP Practice right up to emigrating abroad, I use each of them regularly, as well as keeping up to date with the latest thinking from an alternative perspective. These have all helped me tremendously, also my GP who has a scientific standpoint & who will take time to explain to me what I don't fully grasp straightaway. This has been more help than hindrance in being aware of the many non medical options out there. She believes there is something in the gut theory but until it's fully known how or why advises me to stick with what works, her words not mine, & so I shall & would recommend others do too & that they don't give up on their meds too hastily, especially if they're working. The use of them concomitantly appeals but without my medical professional's agreement I shall continue my current meds, they're working generally, could do with a little tweaking though I rarely flare except in times of great stress, I find that pretty acceptable. OA is another matter but we're working on that.
The links you provided aren't new, I've read them before though I would add that PubMed is a reliable source so am pleased you also use it.
I do hope your wife does well, with or without MTX, though it does beg the question why has she started it if she shows promise & has "very minimal pain" & I presume believes in all you've endeavoured to teach her? I do hope you allow her to make some decisions, I appreciate you'd do all within your power to help her, in a similar way my husband does, but it's her disease... it's ultimately her choice so I do hope she has a say in how she chooses to treat her RD, & her Rheumy of course. I also had high Rheumatoid Factor & through the roof anti-CCP at diagnosis, with the only obvious joint involvement being my foot joints yet was controlled within 4 months on traditional meds. HCQ was chosen because of minimal joint involvement & very prompt symptom to diagnosis. I was already eating well because I lived in the Med, no processed foods whatsoever. Yet through genetics I had RD. It was one of the first questions asked of me at my diagnostic appointment, was there any family history?
Anyway, maybe if you provided interesting/appropriate links & don't quote historical figures, less do as I say, then those doubters amongst us will listen, it's this which gets our goat, we've been there before & it's not appreciated. My thoughts of course but I speak as I see being a northern lass so you'll have to appreciate that I'm afraid!
Sincerely, stay around if you wish to, as long as you understand there will always be the med only brigade as much as you don't seem to understand that. Again, I hope your wife continues to be well, updates would be very much appreciated.
I would never want anyone to stop medication that works for them. It would be stupid and irresponsible of me to do that.
I also don't mean to sound like I'm being harsh on Doctors and Rheumatologists. These people are the salt of the Earth. They dedicated their lives to helping people. I wish I would have gone into medicine or done something more meaningful with my life.
Whilst I was out being selfish. running around in my younger days trying to make money and enjoy myself, Doctors and Rheumatologists were probably broke, over worked and under paid in medical school.
I never want to play down how great these people are and from reading my post back I can see that it sounded like I was.
My problem is that I think these people are being run into the ground and don't have the time or energy to keep up with the times.
We have built up a good relationship with my wife's Rheumatologist. At her last appointment he showed us a list of patients he had to see that day. Between 9:00am and 1:00pm he was scheduled to see around 30 different people in just 4 hours. He looked run down and in despair.
I know that these people want to help, but I don't think that they can help with the amount of pressure that they are under. So instead they do the best that they can in the time they have and prescribe medications to try and help ease symptoms.
Before picking up RA symptoms we had not been to the Doctors in several years. Our GP surgery is right in the middle of a big City and I could not believe what I saw the first time we went there. It was like something out of a Sci Fi movie. The place was packed. You could only get an appointment by queueing up for when the GP surgery opened at 8:45am and by 8:30am there had to be more than 50 people queueing up outside waiting to see a Doctor.
How is a small team of GP's supposed to help these people?
I think Rheumatologists and GPs are doing their best to help us with the limited tools that they have, but they're fighting a losing battle.
This is why I don't buy into the theory that "if reversing Chronic Disease was so easy, the NHS would be doing it". Yes, Chronic Disease costs the NHS hundreds of Millions of pounds a year in medications and treatments, but they would need a massive logistical overhaul of their service in terms of retraining and resource allocation to change the way they provide healthcare for Autoimmune Diseases. It would be extremely difficult for them to change and it would also take a very long time to implement. It could also open a huge can of worms in terms of lawsuits because there are so many things that the NHS have been doing wrong for so long now when it comes to treating Autoimmune Disease that I am guessing some hotshot Lawyers could potentially make the NHS look neglectful and start to sue them. I think that Diet will form the foundation for medicine in the future, but looking at the current state of the NHS I think it is going to take us a very, very, very long time to get to where we need to be. The changes are starting to creep in. You see the odds poster mentioning diet dotted around Hospitals and a team of Nurses regularly visit my son's school to take about Diabetes and the importance of eating healthy foods, but they are nowhere near where they need to be. It's coming in slowly, but it's going to be a very long, slow process before the NHS are able to optimize their treatment for Autoimmune Disease.
But I also don't buy into conspiracy theories that the NHS want to keep us sick...
The fact is that 20% of the population now suffer from an Autoimmune Disease, the actual number is probably much higher because a lot of people living with Autoimmune Diseases don't even know that they have them. By 2035 [17 years from now], the American Centre for Disease Control estimate that 60% of Americans will have an Autoimmune Disease and this number is likely to be similar in the UK. This is reaching epidemic levels and the cost of healthcare to treat these people will cripple and destroy the NHS. This is a ticking time bomb, unless they can dramatically reduce the cost of medications. For that reason I think that the NHS will have to change, I just do not know how long it will take. They've got 17 years and the clock is ticking...
For my wife, the reason why we chose to continue taking Methotrexate was because we've read a lot of stuff about Joints and Tendons still suffering damage even when there appears to be no RA symptoms at all. We learned that high levels of Anti CCP antibodies in the blood are highly erosive for Bone Tissue, so even though right now her symptoms are minimal, her high Anti CCP test results probably indicate that damage is still being done. We are taking the Methotrexate to try and calm the Immune System down as much as possible to try and minimise the amount of damage done to her Joints, whilst we try and figure out what is causing her Immune System to produce so many Anti CCP antibodies.
I am a Healthy sceptic in that I won't dismiss anything as being possible, but I do want to measure whether what we are doing is working or not. This month my Wife is going on a course where she will learn how to take samples of her own blood. From there we are going to be using a Private Laboratory based in Cambridge called Armin Labs to test various blood markers on a monthly basis. Here is their website:
Armin Labs offer the full bloodwork testing that your GP can order, but you can do it yourself without having to get your GP involved. It costs £32.78 to do an Anti CCP test. You just order the test, they send you the testing kit [needles, bottles etc etc], then you have to courier the sample back to them using a specialist courier and they'll send you your Anti CCP test results from the blood sample. You can test yourself for virtually anything and it doesn't cost that much.
Our plan is to get her Anti CCP test done every month to see how we can influence her Anti CCP levels. This data should help us to determine what is working and what is not working. We'll also be testing her Folate levels which cost £18.22 per test.
Having normal Folate levels usually means that you don't get very many side effects from medications. People that experience bad side effects from medications are usually Folate deficient, so this is something that we want to keep an eye on whilst she takes Methotrexate. It's also worth throwing out there that the Folic Acid prescribed by Rheumatologists to take alongside Methotrexate is not effective at boosting Folate levels because Synthetic Folic acid is not very bio available, so most of it gets destroyed by Stomach acids. I recommend taking Folate supplements that are more Bio Available and work much better at helping the body deal with something as powerful as Methotrexate. Here are some links from different suppliers of the supplement I recommend. I've included a few different links so that nobody thinks I am trying to sell anything. That best type of Folate supplement you can buy for keeping Methotrexate side effects to a minimum is called Methyl Folate. Here are some varieties:
She has experienced virtually no side effects whilst taking Methotrexate. She feels slightly sick about 1 hour after taking them, but this soon passes and she doesn't experience any fatigue or any of the other nasty stuff that people have to go through. We also eat a lot of leafy greens on her Methotrexate day. As you probably know Leafy greens are high in Folate because the latin word for Folic is Foliage. Foliage = Leaves. Leaves are high in naturally occuring Bio Available Folate, so having a diet high in Leafy Greens should, in theory minimize any nasty side effects experienced from taxing oral Methotrexate.
This is why I am so passionate about this stuff. Because this is not information that is given to people by GPs or Rheumatologists. The NHS obviously recognises the importance of Folate levels in the severity of Methotrexate side effects, because they prescribe synthetic Folic Acid, but we know that synthetic Folic Acid doesn't work very well! A bottle of 100 high quality Methyl Folate pills costs just £13.99. Can the NHS really not stretch that little bit further and prescribe people a Folate supplement that actually works!
This is why I am concerned that the threat of litigation may be holding back the progress of the NHS. Research has shown that synthetic Folic Acid is not very effective at boosting Folate Levels. Methyl Folate is very cheap and we know that it is much more effective at boosting Folate levels than synthetic Folic Acid. Is this negligence by the NHS to ignore this data? And could people sue the NHS for neglect if this information came to light? One thing I've learned over the last 6 months is not all supplements are created equal and you get what you pay for.
And don't even get me started on the Vitamin D pills they prescribe that also get destroyed by stomach acids...
If someone is experiencing severe sickness, fatigue, hair loss or signs of Liver damage when taking Methotrexate, they are taken off the medication and put onto something else. There's absolutely no discussion around Methyl Folate or if that person has good quality, Organic Leafy greens in their diet.
When I criticize the NHS, I don't mean to criticize the Rheumatologists and GPs that have dedicated their lives to helping people, but I am super sceptical as to whether they understand the intricacies of how diet and the correct supplements can impact symptoms of Disease and side effects of medications. There are probably some Rheumatologists and GPs who know a lot, but I am guessing that the vast majority of them are way behind the times because they are stretched so thin that they simply don't have enough time to keep up to speed on all the latest advancements in Science.
The speed at which Rheumatologists and GPs turn to Genetics as a reason for developing these Diseases is also something that I find very frustrating. We know for a fact that people with certain genes are susceptible to different kinds of health problems.
But to me this is also a big kop out...
We know that the Mitochondria that live in every cell in the body have a massive influence on how effectively our genes work. You could have the Gene that puts you at extra risk of developing Multiple Sclerosis, but you will most likely never develop Multiple Sclerosis if the Mitochondria in your cells continue to perform optimally. Children should not be developing Autoimmune Diseases. Autoimmune Diseases should only occur much later on in life when cell processes start to naturally malfunction due to age. Cells should not malfunction in children because their cells should be young and full of energy. Genes have a role to play in all Disease, but Genes do not malfunction and lead to Disease until the Mitochondria that control them start to malfunction. If we look after our Mitochondria we should not develop Disease until late on in life and if we do develop Disease, we should theoretically be able to reverse almost anything if we can get our Mitochondria performing optimally again.
Research has shown that Sugar kills Mitochondria, whilst the right kinds of fats help fuel Mitochondria and help them perform optimally. It has been proven that a high fat, Ketogenic diet is Kryptonite for Cancer because Cancer can only develop when Mitochondria start to malfunction. A high fat, Ketogenic diet makes it almost impossible for Cancer to develop because a high fat diet enables Mitochondria to thrive. Problem is, you'd be hard pushed to find an Oncologist talking about any of this stuff!
Would a person who has Genes that makes them genetically susceptible to developing Breast Cancer, ever go on to develop Breast Cancer if they ate a high fat, Ketogenic diet? The latest Scientific research suggest that they would not. Genes only seem to play a partial role in the development of Disease. In order for most Diseases to develop, it appears that there needs to be a perfect storm:
Mitochondrial Dysfunction + Genetic Predisposition + Environmental Triggers = Development of Disease.
When you take any of these three factors out of the equation, it becomes much more difficult for Diseases to develop.
The main reason why I feel soooooooooooooo passionately about this stuff is because it kills me to read about how much people are suffering on here. Take a look at a screenshot of the NRAS Health Unlocked page:
One thread is from a lady who has degeneration in her bones and spine, as well as Inflammatory Eye Disease and complaining that she feels fobbed off by her Rheumatologist.
Then we have two more posts titled "Worried" and "Struggling"
Imagine how someone newly diagnosed with RA would feel reading these posts and imagine how the people are feeling who are writing them.
It KILLS me to read things like this. Because I've seen the pain RA causes my wife and if there's anything I can do to try and help people get relief like she has, then I want to do it.
Some people think I am sat here with an agenda to push quack nonsense or sell books, but the truth is I am sat here feeling angry and frustrated because I strongly believe that these people are suffering unnecessarily. But it's so hard for them to turn things around because the odds are overwhelmingly stacked against them. It's so hard to find solutions to their health problems because Rheumatologists and GPs don't have time to explore this stuff in enough detail. Instead they just prescribe medications to put a plaster on the symptoms and keep prescribing more medications which just keep creating more problems. It's a vicious circle.
Let me give you some examples of how we are managing to control RA with diet...
About 1 month ago my wife had a bad flare up after eating a Chicken salad. We were in despair because we had been doing so good with the diet and we had made no mistakes for several weeks. How could she be having a flare when we had been eating so clean? Then I noticed that we were eating Pickled Beetroot as part of the salad. I then looked at the list of ingredients on the jar only to find that they preserve the Beetroot using an ingredient called Barley. I didn't know what Barley was, so I Googled it, and Bingo. It's another type of Wheat / Gluten / Grain.
Her symptoms calmed down after 3 - 4 days of eating clean. Then we ate the same Chicken Salad without the Beetroot and there was no flare. It's ASTONISHING to see.
It's so hard for people to do this because trace amounts of these allergens are put in almost all modern food. The odds are overwhelmingly stacked against people who try to cut them out of their diet. We used to love eating out, but it is almost impossible to do this now because Wheat, Barley, Rye, Gluten or Sugar is in pretty much everything and she reacts badly to all of them. She is literally like a Canary down a coal mine. She eats something with even a trace of these ingredients and BANG, within 1 hour she experiences joint pain.
I know it's Anecdotal but it is so, so, so, so real. I wish we could get a Rheumatologist to come and live with us for a couple of weeks so that they could see this for themselves.
So what I'm saying is...
It KILLS me to read posts on Health Unlocked about people that are struggling, because they might eat a harmless Sandwhich everyday for lunch that is causing them Chronic Pain. Or they may try to eat Healthy by having Ryvita crackers, which are perceived to be a healthy choice, but are actually one of the worst possible foods you can eat if you have a sensitivity to Gluten, Wheat, Barley etc. Someone might try to use diet to Reverse their RA, but they eat the odd Salad with Tomatoes and Peppers, which are Vegetables high in Lectins and again this sets them back. It's a minefield and the only way people can navigate the minefield successfully is through self experimentation and trial and error.
Unless you are totally committed to this lifestyle change it will not work because even trace amounts of these foods can cause problems. But it is soooooooo hard to commit to this lifestyle change because they put Wheat, Rye, Barley, Gluten, Sugar and Dairy in EVERYTHING the we have grown up eating. We know that Gluten can stimulate the Immune System for upto 3 months after consumption, so even having these foods just once a month can make it very difficult to Reverse RA and relieve joint pain.
I know that this all sounds extreme, but someone with a Peanut allergy cannot eat Peanuts every once in a while. It has to be all or nothing. It has to be cold Turkey to see any long term benefit. Trust me, we've learned this the hard way.
I also don't want to ever sound like I have all the answers, because I don't, but I do know that we are on the right path...
Another example...
We went to Costco on Saturday and they have a delicious Bakery full of Cakes, Bread and Muffins. We both used to eat a lot of these foods and we both missed them so bad for so long, but over the months since we have gone Cold Turkey the cravings have got less and less intense to the point where we don't have cravings so much anymore. Out of sight, out of mind... But our trip to Costco changed everything. Surrounded by these delicious foods that smelled amazing we wanted to cheat so bad, but we knew we couldn't.
Instead we looked up a recipe online for Paleo Blueberry Muffins and on the way home we went to Tesco to buy all the ingredients.
The foundation for the recipe was Ground Almonds as a substitute for Flour. We made the Muffins, my wife ate them and sure enough within about 1 hour of eating one she had intense pain in her feet. I Google the Chemical structure of each of the ingredients and it turns out Almonds are high in Lectins.
We go totally clean for a couple of days and today she is now travelling to Birmingham on the train with work, lugging a heavy suitcase around and walking around the City with virtually no pain. We have found that removing these trigger foods has a massive impact on her pain levels.
It's REMARKABLE and I wish there was some way that we could help everyone with RA at least try what we've been doing, but it's so hard. I don't have the time to write a book and there are so many intricacies to what we're doing that I wouldn't even know where to begin even if I could write a book. That's why I share these links to all the things that have helped us, because I hope that there will be people out there who connect the dots and start to manage their RA like we seem to be able to do.
I also want to say that the average medication is constructed from very simple Chemical Compounds, often no more than 5 Compounds per medication. Plants, Fruits and Vegetables are made up of Thousands of Chemical compounds. They are so much more complex than the medications we take. They are so complex that we just do not understand how all of their processes work yet.
One thing we do know is that Plants are a lot more sophisticated than most people think. Dolphins communicate telepathically and we don't fully understand how that works yet and there are a lot of things we don't understand about Plants either. Somehow Plants appear to be able to sense, feel and communicate in different ways. We don't fully understand how it all works yet, but we know that it happens. Here are some interesting articles on the topic:
We know that all life exists on earth with the primary goal of reproducing and in most cases, but not all, survival. We also know that the fruits and vegetables in Biological terms are the Children of Plant Species. Most living species will fight to the death to protect the survival of their children...
We know that eating certain berries and plants can make us very sick or even kill us very quickly. For example the Thunder Root Vine grown in China can kill us if we consume it:
Is it too crazy to assume that Lectins might be an Evolutionary process that certain Plant species have developed in order to make us sick and try to kill us so that we stop eating their babies? [babies = nuts, wheat, seeds, grains, certain fruits and vegetables]
I KNOW THIS SOUNDS CRAZY...
BUT...
This line of thinking ties in perfectly with how nature works. We also have to remember that Plants have been around a lot longer than Humans, so they've had a lot longer to Evolve these complex processes, than we have had to evolve defences against them.
Feed a dog Chocolate and it will die. Feed a shark Vegetables and it will die. When we screw with the diet that mother nature intended for a species of animal, really bad things start to happen. Our bodies are not designed to digest Lectins, Gluten, Wheat, Barley, Rye etc.
Think of a Tomato Plant as a living thing. It does not care about us. It only cares about reproducing and survival. It only exists to protect it's Tomato fruit, so that they can drop to the ground and grow into other Tomato Plants. Many Animal species will fight to the death to defend their offspring, why would Plants be any different?
Again, I know it sounds crazy. But there's research out there suggesting that this is happening right now with certain plant species, such as Nightshade Vegetables and Grains derived from grass which include Wheat, Barley, Gluten, Rye etc etc.
The BBC even published an article today that talks about how life expectancy has stopped rising:
Could this be due to the increase in Sugar, Gluten, Wheat, Rye, Barley and Dairy in our Diets?
People in the modern world have always consumed these foods, but our parents did not have a diet high in genetically modified Wheat or High Fructose Corn Syrup like we have today.
The recommended daily allowance for an adult is 24 grams of Sugar per day. The average 3 year old in the UK consumes more than 50 grams of Sugar a day. Twice the recommended daily allowance of an adult.
We know for a fact that Sugar causes Mitochondria to malfunction, which ultimately leads to Disease. So why isn't there a much bigger push in the NHS to cut these foods out of our diet and see what happens? Wholemeal bread is Kryptonite for someone with a Gluten / Wheat / Rye / Barley intolerance and yet the packaging promotes Wholemeal Bread as a health food that is great for the Heart. What are people supposed to believe. It's estimated that it takes on average 13 years to be diagnosed with Celiac Disease and upto 90% of the population could be Gluten / Wheat intolerant. Why are companies allowed to market these foods as being good for the Heart, when we know that they are extremely damaging to the Digestive System.
I am really tempted to do an Anti CCP antibody test on my wife after eating clean for a few weeks and then get her to eat a piece of Wholemeal bread and do the test again the same day and compare the results from both samples. We know that Wholemeal bread can spike Blood Sugar levels to higher degrees than almost anything else [including Coca Cola], so I am wondering if it also has a similar impact on Anti CCP levels?
Who knows, in the next few months my wife's RA could spiral out of control and she could get bad flares and her health could deteriorate, but from everything I've learned and from the progress we're seeing, I just cannot see that happening. It would defy Science. We as humans are just made up of Chemical processes, we have an enormous amount of control over how those processes work. I believe it is so statistically likely that she will continue to get better, I am just praying that her monthly Anti-CCP test results prove that the stuff we are doing works.
Obviously the Methotrexate will also have an impact on Anti-CCP levels, but we plan on combating that by slowly tapering off the drug and seeing if the Anti-CCP levels rise, stabilise or fall, as we start to gradually reduce the doses of the medication.
Thankyou for reading this. I know I sound like a crazy person, but I believe it's far crazier that we are told that there is no cure for Rheumatoid Arthritis. With enough time and brain power we can solve any problem.
If we can put people on the moon, we can sure as hell get our Immune Systems to function the way that it is supposed to function.
If 8 tiny little Methotrexate pills formulated from very basic Chemical Compound structures can suppress the Immune system and damage Livers, I am absolutely 110% positive that platefuls of food made up of thousands of highly complex Chemical Compound Structures can have an equally profound effect in both good ways and bad.
Take care. I hope you feel good today!
I need to stop harping on or my keyboard is going to catch fire!!!
I for one encourage debate and believe open discussions help us learn. As long as the person who opened the discussion doesn't run away or shy away from providing more information when asked and concedes that they, too, are on a path of discovery and don't have all the answers....we need more counter arguments to your posts devoid of as much emotion as possible to learn from each other which is often hard to do on an RA forum when most active members are in the throws of some degree of despair.
At any rate....
Two things. One, I'm not sure you're aware but MTX will not generally change the level of anti CCP. It usually hovers around the same which is why it is often not redone. However, my Rheumatologist is a professor and often redoes the test as he has some people ( very few, but mostly those without bone erosions, who's anti CCP will drop--I repeat. Very few). He also records if they changed their diet or lifestyle in anyway.
I'm very interested in lifestyle choices and asked him if those who's anti CCP dropped indeed excluded the normal known inflammatory foods (gluten, dairy, sugar, etc). The answer was no.
I'm very keen to see what happens with your wife's anti CCP so please keep us informed. Unfortunately, you have to be aware that it could drop on its own. bummer.
Mine didn't drop while excluding the above mentioned foods. I am also a competitive endurance athlete and can now manage quite a lot of training again so diet and exercise are indeed covered and while in remission my anti CCP sadly remains the same.
Second point concerns one of the links you provided about microbiome and RA. In it was the following:
."These observations confirm a recent study that showed that dysbiosis in the gut microbiome in RA patients is restored partially after treatment with MTX"
So they believe treatment with MTX can help the gut of those with RA become more diverse and in essence help healing??! ( hmm, MTX is toxic, no? And many who have posted have said that MTX messes with the microbiome in a negative way.
Thank you so much for letting me know that Methotrexate does not effect Anti-CCP levels. I did wonder why my wife doesn't have to have her Anti-CCP levels tested every two weeks like all the other bloodwork she has to get done like CRP etc.
This also poses another question, which I need to learn more about. The question is...
We know that having high levels of Anti CCP in the blood leads to more aggressive disease course and more joint damage, but we also know that Methotrexate can slow down and prevent joint damage...
So if Anti CCP levels are not effected by Methotrexate. How the hell is Methotrexate able to slow down and prevent joint damage?
This would suggest that Anti CCP isn't directly responsible for joint damage at all, and that there is something else that causes joint damage that Methotrexate does have an impact on?
Could high levels of Anti CCP in the blood do something to the composition of the synovial fluid which causes joint damage? But then that wouldn't make sense because how can Methotrexate have no impact on Anti CCP levels, but influence the erosiveness of Synovial fluid?
This has absolutely stumped me I have no idea. This is definitely something I need to add to my list to learn more about.
I don't want to bang the drum and go to war on here. I want us all to work together to figure things out and find solutions. Everyone has difference experience and knowledge that we can draw on.
I am a total newbie to this, but I already feel like I've learned so much in a short space of time. Imagine how much collective learning we could do if we all worked together. It's something that excites me.
The fact that you are a Competitive Endurance Athlete literally blows my mind. You are already defying what should be possible.
If we believed everything that conventional medicine told us about RA, there's no way that you'd be able to take part in high impact exercise after testing positive for Anti CCP.
It's pretty amazing stuff. I am sat here with a huge smile on my face because you are living proof that anything is possible.
I also agree with oral Methotrexate will likely wreak havoc on the Gut Microbiome. I'm guessing maybe the Scientific study was talking about injectable Methotrexate, which would bypass the Gut Microbiome? Either way it's a huge oversight on the researchers part not to be more specific about the type of Methotrexate observed in the study. I am tempted to contact some of the people involved in the study to see if they can confirm if it was Oral Methotrexate or Injectible Methotrexate, or a combination of both.
If they did use Oral Methotrexate then I have no idea what's going on there.
I was wondering if you use any meditation, Yoga or breathing techniques as part of your training? Recently I've been looking into the work of Wim Hof.
It seems implausible at first, until I started to look into the Science behind what he was doing. A University in Holland have started to measure what's going in his body whilst he is doing these breathing exercises and he seems to be able to dramatically influence some of the systems in our body.
That's why I do get excited about this kind of stuff. 20 years ago Wim Hof would be branded as a Snake Oil salesman or a nutjob, but now we can take people like this into a Laboratory and measure them to see if what they are saying is true or not.
It appears Wim Hof has learned how to influence the way his Immune System works with breathing techniques and meditation.
I've been following the progress of a girl online called Josephine. She worked really hard at putting her RA into remission without medication. It took her just over 2 years but she got there in the end. She says that the Wim Hof method was one of the key strategies she used to put her RA into remission.
You should check out her Youtube channel. Her story is quite inspirational. A few of her videos have brought me to tears!
Her Youtube Channel [linked below] is also super interesting because I've watched her food videos and she still consumes a lot of foods high in Lectins, which does suggest that Lectins aren't the whole part of the problem. I've been tempted to contact her to find out why she has chosen to keep Lectins in her diet, because she seems to have done a ton of research on how to put RA into remission without medication and so far it seems to be working.
Anti-CCP is an antibody. You have loads of different antibodies, which are generally produced as the body's reaction to a virus, bacteria etc etc. The anti-CCP antibody in synovial fluid isn't the only thing that causes erosion, there's a host of other things including cytokines and other miniscule things. As far as I'm aware there's little work been done on the relative importance of each of these in erosion. Anti-CCP is used as a marker as easy to test rather than it being the most critical I believe.
I've been in remission for the last 5 years (mostly). When I moved countries my new rheumy retested my anti-CCP - it hadn't budged and still in mid 200's. I have lower than normal inflammation markers, even when I do flare and have many obviously swollen joints. So these things are guides rather than being absolutes.
The fact that I'm a competitive endurance athlete only proves that RA has no prejudice on who it attacks. Whether I define what you or others deem possible isn't really the point as you will eventually see.
I stopped racing Ironman triathlons and Cycling stage races- some seven days long- after my symptoms became too unbearable. It took close to 18 months for me to go into remission and the only way I got there was with MTX and a Biologic. I'm grateful for what they do for me and I'm now back training again.
I believe that everyone has inordinate unfounded fears of what may happen (eg side effects) instead of expecting the certainty of benefits (effective Rx)
With all that said, I still try to find other ways to help manage my disease through diet and lifestyle changes. I would love to stop the meds. ALL OF US WOULD so I like discussions about alternative treatments.
What I've learned is that this disease has so many different variables and presents so differently in everyone that nailing down why it is that way is pretty close to impossible.
What I think you must understand is that some people will spontaneously have their RA go into remission(few), some people are diagnosed with RA when in fact it is something different or evolves into something different, some people have mild symptoms and stay that way for the duration of their disease, some people have a very slow progressing disease and some a very fast one. Some have erosive RA and others don't.
What I'm saying is that some of the people you follow on you tube may be one of the lucky ones but you can't assume that it works that way for everyone. And although they may look like they had the most horrendously bad RA and got better it is because all inflammation looks really bad! Even a sprained ankle in a normal person looks 'really bad'. You have no idea what's going on under their inflammation. There are over 100 different inflammatory arthritis syndromes that are often lumped under the umbrella of RA.
When you put up a link and explain in your very eloquent ways that there is an explanation to RA and there is a way out it's a tad bit misleading and will have loads of people believing you as it all sounds so good. But there is always another side to the picture which is why discussion needs to be open.
There are a lot of people on this site that have gone down the rabbit hole you speak of and came out the other end with more damage and destroyed joints and there are others who have come out with something that works for them.
Claiming that there is a way out for everyone without meds is being foolish. However, sharing experiences and questioning treatment methods is healthy and beneficial as it may lead to better treatment options in the future.
I want to hear of alternative ways to try to manage RA but without the ability to find specific similarities in blood work or specific genetic similarities or specific metabolic similarities then one size will never fit all and trial and error is the best we've got at the moment.
In the future they may reach a point to have designer treatments that fit the individuals genetic and metabolic pathways but we are not there yet.
You speak of Wim Hof and the vagus nerve. I have not tried that yet but there is a small device that someone developed that implants under the skin to regulate the vagus nerve much like Wim Hof does with breathing and cold water.
There are many new things on the horizon and there really are clinical trials going on with diet and the like but it takes time. Sometimes too much time which is why it's always nice for me to see people posting information on here and keeping it open for discussion rather than proclamation.
Oh my, I started reading this but my morning me takes time to digest such a long reply (nothing to do with my conditions, I've never been a morning person, always been a night owl). I'm sorry it'll be some while before I respond.
Did you know that Insomnia or being a nightowl is one of the contributing factors to developing an Autoimmune Disease?
In one of my posts in this thread I mentioned that I had solved some of my own Health Issues by complete accident just by eating the same foods as my wife.
One of the things I managed to make disappear was Insomnia.
Like you, I've always been a nightowl and I am useless in the mornings. Since a teenager I always found it very difficult to go to sleep at night, very difficult to wake up and it would take me until at least lunch time to get going.
I was envious of my friends who could wake up early and hit the ground running.
When I was younger and I used to go on holiday with my friends to Spain, we'd come home from a night out and they'd go to bed and fall asleep, whilst I'd be up till 4am - 5am unable to switch off.
They would then wake up bright eyed and bushy tailed in the morning and I'd have to physically drag myself out of bed.
This has led to a lot of frustrating things in my life. I've always been late for stuff in the mornings and I always felt tired in the mornings no matter how long I managed to sleep the night before.
In the last few months something crazy has happened...
Now every night my body starts to feel relaxed and ready for bed at around 9pm - 10pm. I can't put the feeling into words yet because it's hard to describe the feeling. It's not a feeling of tiredness, it's more like being content, but I have never experienced this feeling in my life so at the moment it is tough for me to put into words.
If I tried to go to bed and sleep at 9pm - 10pm 5 months ago, I'd have to lie in bed for 2 - 3 hours staring at the ceiling before I drifted off to sleep, but now I go off to sleep very quickly.
What's even more amazing...
Now I wake up every morning at roughly 6am - 7am automatically, without the need for an alarm clock. And I can jump out of bed full of energy. No brain fog, no groginess.
It's so strange.
This transformation happened in less than a month.
So I started to look into the Science of what was happening to me...
I won't go into it here because it's very deep, but look into something called Circadian Rhythm if you can.
It turns out that eating Sugar and exposure at the wrong times of day to certain types of light can wreak havoc with the way our bodies work. Like everything, some of us are more susceptible to these factors than others.
Night shift workers have an increased risk of developing Autoimmune Diseases for this reason.
I managed to turn my sleep issues and morning groginess around in about 2 - 3 weeks after cutting Sugar out of my diet completely.
It's not something I consciously tried to do, it just happened by accident which eating the same diet as my wife.
Thanks for thinking about me but I know all about Circadian Rhythm, I'm no different now to when I was a child when my parents gave up on reasonable bed times. Neither does winter or summer make a difference in sleep pattern so it's not relevant to me. The only time I was unable to sleep (I'm not an insomniac) was before my OA was medicated as it was purely down to pain disrupting my sleep, once appropriately medicated the sleep issue was solved.
So I'm afraid you'll just have to understand that it's not a condition, there is no reason, it's not that I can't switch off, it's just as I am! I'm not like you.... I'm a night owl. Evenings out in Spain suited me, dinner at 10pm, home by silly o'clock!
I'm sorry you felt you needed to leave, When I was diagnosed 10 years ago, my naturopath started me down this path. Until reading up a bit after seeing your post, I didn't realize it was essentially the same path--I thought that quite intriguing to say the least! I eliminated a lot of foods back then, though I still struggle with inflammation, I can personally attest to the fact that certain foods DEFINATELY flare up my RA.
I appreciate the links and information you offered. As someone with this disease, I'm very interested in the science that's coming out. Science is always evolving and I'm personally inquisitive. I'm not comfortable with blindly accepting anything--be it pharmaceuticals or a fad diet. I believe it's my responsibility to find what's right for me and be willing to do the research. So thank you for sharing.
I also understand people not wanting to hear it. We tend to get hammered with suggestions for every fad cure all potion that hits the internet. Pain and misery does lead to desperation, so as a group we are a vulnerable. I have tired of being preyed upon in that way as well. People that are well meaning can sometimes suggest the darndest things.
That being said, a properly constructed, legitimate scientific study, published in legitimate journals of medicine and science, aren't the source of suggestions for managing RA I'm going to ignore. The suggestions may not cure the disease, but if they help us manage it better, then all the better. It is a chronic illness. It will always need to be managed. And if removing some foods and adding others can help me, which I've learned it does, I'm all for learning more. But I recognize we each have to approach our bodies in our own way.
Am I healed, no. But I am better off than I would be if I hadn't learned 10 years ago that certain foods make life with RA worse for me. I wouldn't hazard to say that's the case for everyone. It is a trigger for my disease, but that doesn't mean it is for the next person.
There is some very interesting info here, I looked at old threads because his wife has gone into remission, the proof is in the pudding so to speak
I have myself noticed that if I stick to a diet veg, fish, salads I am a lot better than I am when I slip, and its the frustration of not being able to slip that gets me down,when we live in a world of fast food.
plus I am not happy about the thought of giving up sugar in my tea
anyway I have brought this thread back to the top as its very interesting
As I understand it, your wife was just diagnosed with RA a few months ago and you did a lot of research on the internet.....and now you choose to bless us with your knowledge??? uhm.... why not "cure" your wife first? or is it she is tired of listening to your "self proclaimed" knowledge on how to cure diseases?
I struggle with "we" are dealing with it, "we chose to take methotrexate "- but hear nothing from this person who is actually dealing with the disease? Seems odd that the husband is the person spending so much time trying to convince?
I'm so fed up with these posts, RA is not a disease I bought on myself by diet nor am I stupid. RA is not curable it's controllable. If the diet helps it is perhaps because losing weight is good if a person is overweight as there is less strain on the joints.
Please don't be offended but I've had enough.The NHS is reliable and is impartial for advice as is the NRAS no doctor is trying to push medications on anyone but RA is not just about obvious symptoms. I'm off for lung tests tomorrow as RA affects my lungs, and might have killed me three years ago with embolisms, so forgive me for disagreeing but its rubbish. If your wife is prepared to take the chance that diet will cure her then great but to me it's hilarious. Going your route I'd be laughing all the way to the graveyard.
I'm really sorry about the problems you've faced. It sounds terrible and I really hope that you feel better soon.
If you read back through my posts you'll see that I never use the word Cure ever. Cure implies that you can make something go away.
There will most likely never be a Cure for Autoimmune Diseases, but they can be prevented and reversed.
Reversing them is not a cure because if the triggers are reintroduced to the environment, antibody production and inflammation in the blood will most likely start again.
Reversing is not a cure. Reversing means identifying triggers and eliminating them from your life. The tough part is trying to figure out what is causing your Immune System to produce antibodies that attack the joints. This is the part of Autoimmune Disease which makes it incredibly difficult for the NHS to treat effectively. It appears that there are so many different triggers that differ from person to person that it would be very difficult for the NHS to put together a treatment programme that could ultimately determine how to reverse Rheumatoid Arthritis for everyone.
The only way I could think that they could do this would be for every newly diagnosed person to go into hospital for 6 months and then be closely monitored with blood tests on a daily basis to see how antibody production changed after exposure to different environmental factors.
690,000 people in the UK have Rheumatoid Arthritis, so this would be impossible for the NHS to do. Please don't think I am dismissing the efforts of the NHS to help people, I am simply pointing out that they don't have the resources required to identify triggers and help people reverse RA.
For that reason I do believe that you can do it yourself with self-experimentation and trial and error.
A much more simple way of looking at things is a Peanut allergy.
You can't cure a Peanut allergy, but you can stop it from doing any damage by removing the trigger. If someone with a Peanut allergy stops eating Peanuts, they get no allergic reaction.
Research over the last 5 years has shown very strong Scientific evidence that Autoimmune Diseases are more like slow burning, complex allergies.
You can find out more information by searching the Public Medical Records website:
Like you I have done a lot of research. What I have understood that the latest studies are bringing forth RA as a metabolic diesease, more specifically about a dysfunction of glucose metabolism. All the facts you have gathered actually come together here. I would very much like to hear your thoughts about this link.
Whew--not sure which parts of this I want to respond to. In the interest of keeping it brief I'll jump around....
You're a bit hard to follow, @Allsopp, as earlier on this thread you mention that doctors should target healing SIBO rather than hand out BIOLOGICS and other DMARDS and now you're touting their praises?
Both oral and injectable MTX can cause side effects. Injectables just happen to be less nauseating as it bypasses the stomach but injectable MTX can also produce side effects like raised liver enzymes, hair thinning, dry skin etc. The way people combat side effects with either of them is tweaking the folic acid dosage and/or lowering the dose or switching to a different DMARD.
The women who do well on a vegan diet you dismiss as not being necessary. It's working for them so how is that not necessary? I think what you want to say is in your opinion you feel the paleo diet is the best one to try. You also may want to add that the research you did isn't the only research on diet as you'll find loads of different people who find different diets working for them with very small research or anecdotal evidence backing it up you just happened to believe the ones you chose to read.
Genetics--mitochondrial DNA is inherited from your mother, so there's that. Also the Shared epitope is notably in most people with RA it's just not the cause as there must be a trigger but if you didn't have SE environmental factors wouldn't necessarily cause RA to break out.
Scientist don't know the complete degree that genetics play but to say that GP's are wrong to ask about history is losing out on the chance to have specific tests run and to be brushed off and told to come back if it gets worse.
Parents with RA can keep an eye on their kids and have them checked out earlier and possibly halt full blown RA from breaking out. ( in the future I believe they will be able to stop it from turning into full blown RA-they're working on it. )
Hi Allsop--thx for posting the lectin post--I have no idea what lectins are but I'm sure the blog will explain it--many people with RA also have low thyroid so I started reading about thyroid issues too--I finally got tested for leaky gut syndrome and see that I have that--this thyroid expert Dr. Isabella Wentz says that leaky gut is one of the triggers for RA-- and when you resolve your leaky gut issues your RA improves--and wheat--gluten in the wheat is a big trigger for leaky gut--so many can stop wheat and see how they feel--I would caution though that I'd like to read more as I imagine that leaving out wheat is not an immediate cure by itself--it's one part of gut healing for many--as you go thru and see what foods trigger pains--an allergy test can find food sensitivities--many fruits can actually be triggers! ( even tho they are healthy!) I'm omitting wheat--have been for 3 months--as my gut is yelling out to me that it's not happy! Taking probiotics and fermented Foods when I can--miso soup, kefir, sauerkraut, Kim Chee at Korean restaurants--these are all good healing gut foods--and kombucha beverages--a bit pricey but tasty and healing...There are docs that specialize in leaky gut but I am doing a few changes in my own first--( as I run around to too many docs right niw!)
Well, it's been three years since you posted this, so there's a strong likelyhood that you know by now: there is no getting rid of lectins in your diet. There are thousands of lectins and most haven't been studied. Basically, if it is, or if it was alive, then it produced lectins. You even produce several lectins. Lectins have many functions, but basically they are cellular messengers. Think of it like a computer: lectins carry commands and deliver them to cells. Seems small considering their size, unless you consider the hundreds of thousands to millions of lectin units all carrying the same command in one bite of a specific food.
So, what to do about lectins? Well, lectins fall into three categories of function (according to me). They are degenerative, regenerative, and neutral. There are quite a few studies that have been published and are available for your home library. Most of these you'll find in grad school textbooks, but you can also find them online in research papers, which cost money to access, or you have to be a member of the researchers in that school, community, or area of study.
Other than the aforementioned method of finding your info, you can use an eliminating diet where you actively study your body's reaction to the common foods that you eat on a regular basis. That can be a long process, but it's worth it. I used that method, along with book research. It took me about 8 years all together. Don't listen to naysayers because they aren't students. Listen to rye information that you learned and the reactions that your body has. And you can't go wrong. I remember going to the grocery with lists of what I could or cloud not eat, and then revising the food shopping lists by foods that I could eat based on my body's reaction. Eventually I stopped using lists because I knew what was good for me, and what wasn't.
See, one of the hardest things about this is thatis not just lectins that affect your diet negatively or possitively. It's also antinutrients, which is a blanket statement for many different chemicals that we consume. Eventually you may come to see food as a chemical that fuels us. We are a biological machine that requires good fuel. Everything in the universe is a chemical, and every interaction is a chemical reaction. In the same way that you wouldn't put water or oil into the gas tank of your gas powered vehicle, you also want to put the right fuel in the vehicle that you have drive for the rest of your time on this planet.
What it comes down to is this: don't avoid lectins because that's impossible unless you've decided to go on a water only diet. Lectins are only a cog in the wheel. There are many other aspects of nutrition that need to be considered and discovered. All of then have to be understood and applied personally, because good for you isn't always good for them. There is truth to the blood type diet: blood types were discovered two years after lectins were identified ("discovered"), because all agglutinin studies (the term "lectin" had not yet been coined) were done using blood cells at the time. Different blood types have different reactions to the same chemicals, or lectins. And it's not the the basic four blood types. We have secretors status, 38 blood groups, genotypes and phenotypes... So you see there are thousands of combinations and differing sensitivities... A lot to learn.
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