My wife was recently diagnosed with RA

Hi all,

My wife was recently diagnosed with RA.

Over the last few months I've read pretty much every new post related to RA on Health Unlocked. This website has been a great support. I used to cry every morning because it was so hard to see her struggling with the pain, but this website helped to provide some hope and rationalize things.

I do have to be honest though... Reading some of the posts on here has brought me to tears. It hurts to read how badly people are struggling and my brain struggles to process the thought of us not being able to do more to help people, when we can put people on the Moon and build Nuclear weapons.

Anyway... I've been lurking on here for a while now and I just wanted to post today to create a paper trail so that one day I don't turn up out of the blue looking like a crazy person...

I have an obsessive personality. From a young age I've been able to consume large amounts of information in a short space of time and retain it. I can also learn things very quickly. This was a great help through school with exams and it has also helped me to have a good amount of success in life.

I now make a good living earning money doing something that most people consider to be impossible. [Professional Gambler].

When I started to learn about RA my brain really struggled to deal with there being no solution or "cure". It also didn't sit right with me when I started to study the numbers.

RA has been around for a long time. We also know that it effects around 1.5 million Americans and that it is an extremely rare disease outside of Westernized culture. We also know that it effects 3 times as many women as men and we know that it most commonly rears it's ugly head between the ages of 30 and 60 years old.

This means that we should have a ton of data to figure RA out and when I started digging, it turns out that there is a ton of data that we can use to figure this out...

Over the last 3 months I've gone deep down the rabbit hole of RA and read hundreds of medical studies and clinical trials. There is strong evidence out there to suggest the causes of RA, but there isn't any one central organization connecting all of the dots.

From what I have read, the most likely cause of RA seems to be a bacterial infection caused by the bacterias Klebsiella pneumoniae or Staphylococcus aureus or both.

The problem with both of these bacterias is that they are both resistant to anti biotics. Staphylococcus aureus is actually the bacteria implicated in the hospital super bug MRSA. Both of these bacterias live within our bodies and they're not harmful unless they grow out of control or enter areas of the body where they shouldn't be [like the joint tissue in RA].

When these harmful bacteria enter tissue that they shouldn't be in, the body seems to mount an immune response and attack that tissue until the harmful bacteria is killed [leading to progressive joint damage].

A lot of literature in the past has led people to believe that the "body attacks itself" in Autoimmune diseases like RA, but more and more scientific research is suggesting that this is not the case. The immune system is actually attacking tissue where harmful bacteria have managed to get into cells.

People that are diagnosed with Autoimmune diseases are led to believe that their Immune System is malfunctioning, but this is not the case. It is actually doing EXACTLY what it is supposed to do by mounting an immune response against harmful bacteria.

Even though the NHS and FDA have not formally recognised this yet, they have for decades treated RA with lifelong Antibiotics, suggesting that they have for some time known there is a strong correlation between harmful bacteria and the onset of Autoimmune Diseases.

Sulfasalazine is one of the entry level medications prescribed for people with RA. Sulfasalazine is an antibiotic. If harmful Bacteria had nothing to do with RA, why have the NHS been prescribing it as a treatment for decades?

Problem is... Sulfasalazine is completely ineffective in killing Klebsiella and Staphylococcus. These two strains of Bacteria are Antibiotic resistant so trying to treat RA with Sulfasalazine is like trying to put out a house fire with a water pistol.

With the amount of data available in medical studies and clinical trials I do think that we are very close to figuring out the specific causes of RA and treating it way more effectively than we do now.

I don't think there is ever going to be a magic bullet where you can take a medication and cure RA, but I do believe with all my heart that there will be a combination of treatments that will heal the underlying causes over time. This doesn't mean that science will be able to undo joint damage and it will most likely take people longer to heal who have had RA for a long time, but I do believe that if we find a way to bring the number of these harmful Bacteria down in the body to a normal level, the symptoms of RA will virtually go away.

Based on the way science is moving at the moment it appears that two things could happen soon...

New Anti TnFs or Biologics could be developed to manage the immune response with virtually no short term side effects, or a new anti biotic medication could be developed to treat MRSA and this then turns out to also be a useful medication for Autoimmune Diseases.

There's a lot of medical research being conducted right now in how to treat MRSA and when new medications are developed they often go on to have multiple uses for multiple different medical issues. I think that we could see this happen soon based on what I've learned.

I've only skimmed over all this stuff to keep the size of the post down, but there is medical research to back up everything I've said. Please don't hesitate to send me a message on Health Unlocked if you want to learn more about it. I understand that this type of post isn't everyone's cup of tea, so it might be best to discuss it by PM, unless the majority of people are open to discussion [which I would love].

I wanted to post this message this morning because 3 months ago I woke up every morning crying and now I am filled with hope every day.

I've already learned so much in a short space of time which has helped us influence the way my wife's RA behaves on a daily basis and I want to help others.

I am going to dedicate myself to solving the puzzle that is RA and I strongly believe that I can do it. It might not happen next month, or next year or 10 years from now but I guarantee I'll do it.

I just wanted to post this message today because Rheumatologists, Doctors and media will tell you that there is no "cure" for RA, but this is not true. What they're really saying is that they haven't figured it out yet and that there are no medications that they can give you to make it go away. That unfortunately is true :(

I just wanted to post this today because I know a lot of people are suffering with this horrible disease, but from what I've learned I feel will all my heart that you will not be suffering forever.

Science now has a very good understanding of the causes of Autoimmune Diseases and when Science understands the cause, they can work backwards and figure out the solution.

RA is a horrible, horrible, evil disease but Humans have solved much more complex puzzles than this in the past.

I'm a sceptic by nature and controlling confirmation bias is a massive part of doing my job effectively so please trust me when I say I would not have posted something like this unless I truly believed in the Science behind it.

Thankyou for taking the time to read this. I hope you're feeling good today and if you're not. I hope you feel good tomorrow. :)

Sending you my love.

30 Replies

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  • I hope your wife is taking some medicine to help with her RA. It took a while but I can now move almost as well as before RA hit.

  • Very interesting post, I will be following closely. I am fairly newly diagnosed, but like you am developing a quest for knowledge about this disease that does border on the obsessive. I might not be as bright as you but I am an avid reader & do store information. I have a similar but slightly different view of how RA is caused. I had two grandparents with it, so while not convinced heredity factors are a singular cause, I believe that I carry a gene which gives me a predisposition to RA. This gene is then "woken up" by a serious infection (in my case peritonitis) the body then goes into overdrive to fight it,(my spleen enlarged) then carries on even after the infection/bacteria has been dealt with. Combine the predisposition & the "high alert" immune system & hey presto, Rheumatoid, Lupus & Chrohns diseases. Somehow the immune system needs "deactivating" from the high alert, unlike you, I have no clue how this could be done, stem cell treatment maybe?

  • Hi Julia,

    What you've said makes a lot of sense and it's also something I've thought about. There is Scientific research that shows the Immune System response in Autoimmune diseases is causes by the Innate side of your immune system.

    The Innate immune system is the side of the immune system that has no brain, it just reacts to problems. You cut your finger, it releases antibodies and rushes to the scene. You burn yourself, it does the same thing.

    The second part of the immune system is the adaptive system. This is the system that learns how to deal with certain types of infections and can help you stop getting them in the future, once your Adaptive immune system learns how to deal with a threat it can protect you from that threat forever. The Adaptive side of your immune system is what protects you from getting things like Chicken Pox once you've had it.

    Since the Innate side of your immune system is the side linked to Autoimmune Disease and since it only reacts to problems such as an injury or foreign body that it needs to deal with, in theory there would have to be a problem present in your body in order for your immune system to trigger an innate respond. This suggests that your immune system going into overdrive for no reason is not a likely possibility, unless the Innate system is malfunctioning. In which case you would think that the Immune system would be on a total state of attack, which in most Autoimmune diseases it isn't. Immune responses tend to flare up and go down frequently, suggesting that the Immune System is still reacting to some kind of internal threat.

    If Autoimmune diseases were linked to the Adaptive side of the immune system I think what you've said would be more likely because the Adaptive side of the immune system uses discretion on what it attacks, so I guess that this would be more likely to malfunction or go into overdrive?

    I don't know enough about the immune system yet to feel confident in anything I've said, but from what I've learned so far I think I'm on the right track, but could be completely wrong and that's ok. I think it's good for us all to explore absolutely every aspect of Autoimmunity so that even when we go down the wrong path, we'll come out the other end with an even deeper understanding as to how this all works and how everything links together.

    I do know that there is Stem Cell treatment available in Russia that can "reboot" the immune system and set it back to baseline. I know that they've had a good amount of success stopping Multiple Sclerosis dead in it's tracks and stopping it from progressing. I know that the treatment costs around £50,000.

    My only concern with this kind of treatment is that it does not address the root cause of Autoimmune Diseases [if there even is a root cause].

    The problem with this kind of treatment is if the Immune System is behaving correctly and attacking tissues in the body that have been compromised by Pathogenic Bacteria, turning off this Immune System response could be quite dangerous long term because your body is protecting you from very harmful Bacteria, even though the side effect of this is damage to certain bodily tissues. :(

    I'm also concerned by this treatment because we know that in most Autoimmune Diseases, the body can start to produce specific Antibodies related to the Disease up to 5 years before the on set of symptoms.

    So even though the treatment might set your Immune System back to baseline, would your Immune System start to produce low levels of Anti CCP and RF Factor antibodies the next day after stem cell treatment, eventually leading to the onset of RA again within 5 years?

    I don't know the answer to that question yet, but I do know that if Bacterial Infections are at the root cause of Autoimmune Diseases, setting the Immune System back to baseline could lead to a lot of problems because it would allow the Pathogenic Bacteria to breed out of control, because your Immune System may no longer be producing high enough quantities of the antibodies required to fight them off.

    If I was a millionaire I don't think I would want my wife to get that kind of treatment right now, because I have a lot of faith in the body's ability to heal itself. Animals don't tend to suffer from Autoimmunity, so I see no reason why our Human Immune Systems would malfunction forever and we'd never be able to get it back to normal if we remove the underlying causes that are making it behave the way it does.

    I'm so sorry to hear that you have 3 separate Autoimmune Diseases, but if I were you the positive I would take from that is that there has to be something triggering the production of Antibodies specific to those three Autoimmune Diseases.

    Could I ask which Autoimmune Disease you were first diagnosed with? If it was Crohns I think that this could be the root cause and suggest that your Autoimmunity is perhaps triggered by Dietary factors? Could the Inflammation in your Digestive system have made it easier for harmful bacteria to enter your body through the small intestines, which caused the body to produce antibodies to these bacterias, which then led to the development of Lupus and RA?

    My wife has been Gluten intolerant since she was a teenager. After eating a Pizza, bread, cakes, biscuits etc she would literally get a stomach ache almost immediately and have to go to the toilet within an hour. Because she experienced this from a young age she just thought it was normal and "got on with it". We have been together for 13 years and she never once told me about these issues because she didn't think it was "sexy". It wasn't until we started exploring the dietary impact on RA that we started to connect the dots.

    It's estimated that 99% of people with mild to moderate Celiac Disease never get diagnosed and yet we know that you're 3 times more likely to develop a second Autoimmune Disease, once you develop the first. I am convinced that my wife has been a Celiac from a very young age and this constant inflammation in her Digestive system ultimately led to the onset of RA.

    I would be really interested to know if Crohns was your first Autoimmune diagnosis or if symptoms started to show up around about the same time as your Lupus diagnosis.

    I would also really like to know how many people with RA may be living with undiagnosed Inflammatory Bowel issues, food allergies or food sensitivities. Most symptoms from these conditions can be quite mild, so I often wonder if people with RA go their whole life without reading the clues their body is giving them and connecting the dots. I don't know the answer to that, but it's a question I would love to know the answer to.

    Doctors in the UK seem to want to "fob people off" whenever they have minor medical issues, so I wonder how many people "just get on with it" and live with mild digestive problems that could eventually lead to the onset of an Autoimmune Disease.

    I'm really sorry for the long and invasive reply, but I feel like people with your knowledge and experience hold the key to solving Autoimmunity. You live with the pain, suffering and discomfort every day. You are able to listen to your body and feel how it responds to different triggers on a day to day basis. You have a way deeper understanding of Autoimmunity than Rheumatologists or Gastroenterologists because you feel everything first hand. You may not be able to explain things in the same way as they can, but you can certainly feel what your body is telling you.

    I feel like research should focus more on Doctors spending hours and hours having long discussions with people in your situation, learning every single aspect of your life from birth to where you are today. Then collating all that data and then working backwards to find trends between yourself and others that are living with Autoimmunity. If we were to focus more on that, we could identify strong correlations and start to work backwards to figure out the root causes are and address them.

    I don't want to be a nasty little conspiracy theorist but by 2035 [17 years from now] it is estimated that 60% of Westerners will have an Autoimmune Disease. That means there's big money to be made in treating Autoimmunity. All of the top Pharmaceutical companies are currently in a race to develop the next Biologic or Anti TnF that will completely remove your symptoms forever [which is great news], but my concern is that they won't deal with the underlying causes.

    Just go and look at the share prices for all the Pharmaceutical companies that specialize in the production of medications to treat Autoimmunity. In the last 2 years the share price on virtually all of them has sky rocketed.

    Millions of people are suffering with Autoimmunity everyday. That's a hell of a lot of collective experience, knowledge and brain power that we can use to work out the root causes and heal people. I feel like together we can figure it out through our own knowledge and experiences and we certainly don't need the help of Big Pharma to do it!

  • Hi Allsopp, very informative reply thank you. Just want to point out that no, I have not got all 3 autoimmune diseases, thank goodness, I was just stating the 3 possibly caused by a serious, invasive illness. I have RA Allsopp, diagnosed 18 months ago, firmly stuck my head in the proverbial sand, thought it would NEVER manifest itself, how wrong I was, fast forward 14 months, then like a runaway articulated truck it struck me! It became very aggressive, painful & I felt I couldn't carry on. The impact on my day to day life has been soul destroying. Hence the Methatrexate combined with Sulphasalazine! You mention prior illnesses, I can confirm pneumonia, 3 times in the last 6 years, Hayfever since 1991 & IBS for 40 years, so yes, it seems I already had a poor immune system prior to Peritonitis & gangrene. Yes, convinced my immune system has in the past suffered an overload & has lead to RA. Keep up the research, very interested to hear any thesis You may come up with, regards to your wife, a fellow " RA Warrior"!

  • Firstly I'm sorry to hear about your wife. For me it's my partner rather than myself that has the disease so I know how hard and upsetting it is to be the person watching on trying to provide support.

    I've also done a lot of reading to try to learn about this disease, and although I haven't gone nearly as deep into the literature as you, I have drawn similar results. It worries me how little any of the rheumatology team we see read, but that's another story.

    I'd be interested to see any posts you put in here - I know the science isn't for everyone but as far as I'm concerned if there are good data to back up what you say then I'm interested.

    I would say, and I don't mean this as a criticism - I can see you're trying to give people hope and I may just come across as negative- that a 'cure' which hasn't been figured out yet, let alone a drug developed, tested and licensed probably feels as good as useless to a lot of people in the grip of this horrible disease taking drugs that don't seem to be working.

  • Hi there, :)

    I've only been researching Autoimmunity for 3 months but I already feel like I could write a book on it! It's amazing how much you can learn in a short space of time if you decide to go deep down the rabbit hole!

    The stuff I've learned is way too longwinded for me to go into on this forum, but I can point you in the direction of some really interesting stuff to read up on.

    First of all I would say go to the TED Youtube Channel and watch as many presentations as you can on Gut Dysbiosis, Microbiome, Gut Flora and the role Gut Bacteria plays in the onset of disease. You can find a lot of talks by Scientists on TED which discuss these topics in a good amount of detail.

    I think it's also important to recognise that even if these theories don't prove to be responsible for the actual causes of Autoimmune Diseases, they are still very helpful in understanding the role that Bacteria plays in your body and how it can impact your organs and immune System. I found it much easier to understand the wording used in medical studies and articles once I had a good understanding of the role that Bacteria plays in the body.

    Here is the TED Youtube Channel:

    youtube.com/user/TEDtalksDi...

    Below is a list of some of the Medical Studies, Clinical Trials and Research that I have found to be useful in trying to learn more about the root causes of RA...

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pubmed/254...

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pmc/articl...

    One of my next projects is to work my way through the following list and learn more about each individual kind of Bacteria. I want to know what it does, what it feeds off, whether it should be in your body or not, how it behaves when it's there, what factors influence it's behaviour, what factors influence the rate at which it can breed, it's life span, how it effects animals. I literally want to learn everything about each individual strain of bacteria and what impact it could have on the body if it starts to breed out of control or enter areas of the body where it shouldn't be:

    ncbi.nlm.nih.gov/pmc/articl...

    I'm also extremely interested in Microbiota transplants and how they could potentially cure Rheumatoid Arthritis and many other Autoimmune Diseases. Out of all the new treatments on the horizon, this one for me is the most promising. If you asked me right now which treatment I would choose for my wife if money wasn't an object, I would choose a long term course of Microbiota transplants. I thing there is far more Science behind them healing people than the new Biologic, Anti TnF and Stem Cell treatments that are on the horizon. Here are a couple of articles which go into a little bit of detail on Microbiota transplants:

    ncbi.nlm.nih.gov/pmc/articl...

    arthritisforum.org.uk/cgi-b...

    threadid=3811&offset=0

    One of the main things that fills me with hope when it comes to Microbiota transplants is some of the experiments that have been conducted on Mice.

    If you give a Mouse clinically induced Type 1 Diabetes and then extract it's Gut Microbiome and inject it into the gut of a "Healthy" mouse, the "Healthy" mouse will develop Type 1 Diabetes almost immediately. Imagine what would happen if we extra the Gut Microbiome of someone suffering with RA and replace it with the Gut Microbiome of a healthy person?

    I don't know if Microbiota transplants work for sure, but they are definitely the most exciting advancement in treatment for Autoimmune diseases. Best part is... Microbiota transplants aren't super expensive. They're actually cheaper long term than Biologic medications and the NHS are already using Microbiota transplants for certain medical conditions, which may make it easier to get them used as an Autoimmune treatment in the future.

    Most of the stuff I've posted is in relation to the role Bacteria plays in the body. This is because this is the area I'm focusing on right now. I've chosen to focus first on this area because to me it seems like the most likely explanation...

    We know that Reactive Arthritis has similar symptoms to Rheumatoid Arthritis and we know that Reactive Arthritis is triggered by an infection. Could Reactive Arthritis and Rheumatoid Arthritis be similar to Bacterial and Viral Meningitis? Where Reactive Arthritis is caused by an infection that the body can heal itself from in time, whilst Rheumatoid Arthritis is triggered by an infection of Bacterial nature that is resistant to Anti Biotics? Could RA be a lifelong infection that the body produces RF Factor and Anti CCP antibodies against? If we find a way to heal the infection, will RA disappear?

    When people go into lifelong remission for RA, is that because their body has over time found a way to heal the infection?

    When people go into temporary remission has their body managed to heal the infection?... Only to be reinfected by the same Bacteria at a later date due to having the same Environmental exposures and genetic predisposition to being vulnerable to this type of infection? Or is the harmful Bacteria laying dormant somewhere in the body? Does the good bacteria in the Microbiome manage to keep it in check for a while before losing the battle and eventually being overtaken resulting in the symptoms of RA coming back with a vengeance?

    I also believe that Sulfasalazine holds a strong clue to the role Bacteria plays in Rheumatoid Arthritis. Why would Rheumatologists prescribe a long term anti biotic medication as a treatment for a disease that they do not believe to be Bacterial in nature? It doesn't make any sense...

    Here are a couple of quotes from some medical studies I've read over the last couple of months. I can't find links to the specific studies right now because I have a lot of them saved on my PC, but trust me, these quotes are taken directly from medical studies...

    "People newly diagnosed with Rheumatoid Arthritis have a substantially lower number of helpful Bacteria in their gastrointestinal systems"

    "Autopsies of 80 people that had lived with Rheumatoid Arthritis for 15 years or more showed an imbalance of harmful bacteria in their Gut Microbiome. 90% of the Bacteria present in their gut was Staphylococcus in nature. Staphylococcus is the Antibiotic resistant Bacteria which is implicated in the hospital superbug MRSA".

    When you're looking for information I recommend going to this website:

    pubmed.gov

    To find interesting medical studies search for a specific strain of harmful bacteria that is implicated in the cause of an Autoimmune Disease and then type the name of the Autoimmune Disease. As an example, this is the kind of stuff I would search for:

    "Staphylococcus Rheumatoid"

    "Staphylococcus Autoimmune"

    "Staphylococcus Autoimmunity"

    "Staphylococcus Psoriasis"

    "Klebsiella Rheumatoid"

    "Klebsiella Autoimmune"

    "Klebsiella Autoimmunity"

    "Klebsiella Lupus"

    "P Copri Rheumatoid"

    "Chlamydia Autoimmune"

    etc etc

    I hope this helps and I hope that I've provided you with links to things you're interested in learning more about.

    I get what you're saying about how me saying there's no cure in sight can have a negative effect on people, but there's also a silver lining to that.

    Pharmaceutical companies aren't trying to cure Autoimmune Diseases, they're trying to make symptoms go away.

    Even if one of them did manage to find a cure, as we all know it can take many years for medications to reach the mass market. Biologics are shown to help a lot of people improve their symptoms and yet many people still have to jump through hoops to get them! It upsets me and it shouldn't be like that.

    But if we can learn more about the role Bacteria plays in the onset of Autoimmune Diseases, we probably won't need medications to fix the problem. Most harmful bacteria are fed and breed off certain types of foods, which means we can starve them to death by eliminating certain kinds of foods. We also know that there are plant compounds that can kill specific strains of bacteria. People can also introduce different types of food into their diet to feed the good bacteria, which helps restore a more normal balance in the Gut Microbiome. This leads to a reduction in symptoms because the good Bacteria prevents the harmful bacteria from taking over. Probiotics and prebiotics could also help good bacteria keep bad bacteria in check.

    These are all things that people can start experimenting with today. We don't have to wait for the NHS or FDA to spend 20 years doing clinical trials, we can start now.

    70% of medical research is funded by Pharmaceutical companies. These companies are not going to research this kind of stuff because there's no money in it. If Food, Probiotics and Prebiotics hold the keys to fixing the underlying causes of RA, we can start the healing process now.

    Here is an article from back in 2013 from Wired that also talks about the link between Bacteria and RA:

    wired.com/2013/11/gut-bacte...

    When so many different Scientists and Researchers are talking about this stuff there has to be some truth to it. We don't have to wait 15 years for the NHS to catch on. We can start doing it now.

  • Hi ?

    Thank you for your great post about Microbiome and Mictobiota.

    I discovered this line of research in the Summer of 2016 and read widely on the subject of gut bacteria. As Arthritis UK have invested in related research I consider it will become relevant for RA sufferers, but we have so much to learn about our relationship with the "good bugs" we have co-evolved with, I feel that so far we are just beginning to scratch the surface.

    What I do feel is very encouraging is that problems with an imbalance of Gut Bacteria are being blamed as the primary source of inflammation and inflammation is now deemed to be the underlying cause of much of modern Western Metabolic Disease. As such research into re-balancing Human Mictobiota will have far reaching benefits for so very much more than RA and other auto-immune diseases.

    In the years since the 2nd World War antibiotics have saved a great many lives by curing infectious diseases, but they are also responsible for upsetting the natural balance within the Human digestive tract and have led (I believe) to the rise of many chronic diseases. During this era we have messed big time with our natural immune systems. I consider antibiotic usage is only part of the picture. Other important factors are contributing very early on in life.

    1). Vaginal Birth should "seed" both the Microbiome and the Microbiota. With a 30% plus C section rate in some Countries, together with the use of antibiotics as part of childbirth now being considered normal in parts of the Western World we are disrupting this natural transference of "good" bacteria from Mother to Baby.

    2). Breastfeeding for a minimum of 12 months develops the Gut Bacteria as Mother Nature intended. A significant percentage of Human Breast Milk is there just to feed the natural good Gut Bacteria.

    3). Infant immunization saves many lives from infectious diseases, but leaves the immune system with so little to occupy it that it looks for something to do and hey presto we have a plague of allergies in childhood.

    When Mother Nature was allowed to proceed as she had done for most of Human History by age 3 the Mictobiota and the immune system had both developed in harmony to protect the Child.

    In our battle to overcome infectious disease, we have created an internal environment for chronic disease to flourish, thereby, all too often, robbing us of a healthy life from middle age onwards. All too frequently those increased years of life expectancy are no longer healthy extra years. We need to figure out how to stay healthy into old age. Now there is a challenge for Scientific Research!!

    AARA

  • An interesting post. I am also a bit of an RA nerd and agree that the next 10-15 years may bring big changes in understanding and treatment. However the variation in people's experience of the disease and response to the drug is so great that I personally feel that there are several root issues to be understood. The fact that it is so much more common in women also points to a link to the X chromosome or hormonal reactions.

    As for the science, we have to remember that scientists are also human so have normal human reactions about wanting to achieve etc etc. Ben Goldacre's book Bad Pharma I found fascinating - depressing in parts but also gave a great understanding of why we get men onto the moon but have yet to understand RA.

    One small suggestion from the perspective of a person with RA. Do recognise that it is your wife who has the disease so she has to be the one to make the decisions on her treatment. I'm sure it is brilliant for her to have you being so supportive, and moving mountains to help. My OH is supportive, but knows where to draw the line. I hope you take this the positive way it is meant, but please do give her room to choose her own course even if it is not one you would take yourself.

  • I couldn't have said that better HH

  • What a lovely caring man you are.thank you for caring so much .kathy.

  • Excellent thread. I was just diagnosed 3 weeks ago and have been trying to absorb as much information as possible as well.

    I will be following your post closely. Thank you much.

  • I've been pondering your comment that RA is a rare disease outside westernised culture. I've read similar statements in research papers and I wonder whether this is just perpetuated received wisdom or whether it has been properly studied? Do you have more detail?

    Two things make me question this. FIrst that skeletal remains of Native American populations from 2000 - 3000 years ago show evidence of erosive disease. Nowhere else in the world has found similar in skeletal remains of that period, only much more recent remains. So perhaps it spread from there to the "westernised world"?

    The other thing is whether the incidence of RA in less wealthy countries has really been assessed? There are some countries, like Djibouti, that do not have a single rheumatologist. NIcaragua apparently has 4, so a ratio of 0.07 per 1000 people. Where I am in France there are 2470, so a rather better ration of 3.80. How many people suffer from undiagnosed and untreated RA in these countries? And if you have a 10 mile walk to a GP, and no money for treatment then you are rather stuck so are never going to figure in world statistics.

    In visiting countries like Algeria I notice a lot of people who look as if they have an inflammatory arthritis, but they are "old" women (i.e. 60'ish!) so are left to sit in a corner in presumable pain. Perhaps if the disease was three times more men than women it wouldn't be so ignored?

  • You are so knowledgeable. You've thrown questions at me that I wouldn't even have thought of. I've added them to my list of stuff to read up on because they are very important questions.

    We know how keen doctors are to try and play down illnesses in the UK with many people having to see multiple doctors before getting a diagnosis so I guess it's no surprise that statistics in poorer countries tend to show low numbers of people having Autoimmune Diseases. Maybe it's not a western problem after all. Maybe the statistic is just showing inadequate healthcare in poorer countries.

    I feel like there are thousands of people with your knowledge and expertise around the world and if we could get you all together and learn everything you know about living with RA, we could learn so much about the causes and how to heal it. Collectively I think we could figure it out.

    I've already been a total idiot Male neanderthal and an insensitive idiot and upset my wife a few months ago. I read online that early treatment of RA could help people a lot, so I jumped in head first with both feet before she had any time to come to terms with what was happening and I upset her and made her worse. I felt terrible, especially because stress seems to be a big trigger for her. I was trying to help her, but in the short term I ended up making her feel a lot worse.

    We are a lot better now, we haven't had any arguments over it in the last 2 months. Everything is going good right now. I think that this is partly because I realised I was being an idiot and backed off and partly because the diet and supplements really seem to be helping her. At first she freaked out over dietary changes and supplements but now she's more into it than I am because she is starting to see the benefits.

  • Ah well, I've been an RA nerd for over 6 years now so have a head start on you. So nerdy that have even been to international conferences which are fascinating as also include some patients as well as rheumatologists from everywhere. I think there were 3000 people there, so don't give up hope.

    Good that you recognise the need for some sensitivity. The emotional side of RA is often overlooked, and when you are hit by a disease that takes control of you then there's a real need to have control over other parts of your life.

  • Hi Allsopp--I'd be happy if you could look at the website roadback.org. I followed this treatment using minocin ( the brand) and the doctors involved discovered that using this antibiotic could indeed cure RA. ( Dr. MacPhearson (sp)Brown and Dr. scammel have books and articles). I used this effectively from 2004-07, until I got a tick bite in Ohio and got diagnosed with Lyme in 2009..(took a while as all doctors and labs are not the same). I've tried all the Lyme cures for the past what 7/8 years--have lost track and in 2016 I visited an RA for their take--it was MTX and that made me an exhausted zombie for a year--I restarted minicin ( but it's only available in miniclyvline now) minocycline--generic and is not quite as good. The doctors could not make money in antibiotics and do this fell out of favor. With your interest and skills I'd really enjoy your thoughts--I'm fatigued a lot and don't have the stamina to dona lot but please keep in touch. Your post is the first exciting post as you are searching and that's a joyful thing. Wyaatch ( Sandy)

  • Hi Sandy,

    Thank you so much for bringing that website to my attention. I had not heard of it, but now I am definitely interested and I'm going to spend some time learning all about it.

    I am also extremely interested in Lyme Disease. Many of the symptoms of Lyme are so similar to Rheumatoid Arthritis that you would think that there has to be some connection between the two. We know that Lyme disease is caused by a Bacterial Infection that causes symptoms very similar to RA, so it's not crazy to speculate that RA is also caused by some kind of Bacterial Infection.

    My issue with antibiotic treatment for anything is that most antibiotics kill all types of bacteria good and bad. This can potentially be dangerous when treating medical issues caused by harmful bacteria that are resistant to antibiotics.

    I'm worried that if Staphylococcus and Klebsiella really are the strains of Bacteria responsible for RA, we could potentially make RA much more severe by treating it with antibiotics because the antibiotics would kill off the good bacteria, which would enable the Staphylococcus and Klebsiella to breed out of control.

    I've wondered whether the progression of Autoimmune Diseases is due to the gradual increase of harmful bacteria in the body over time. If we ate foods and supplemented with Probiotics and Prebiotics, could be slow disease progression in the same way that DMARDS do? If we can maintain a healthy balance of good and harmful bacteria in the body, will symptoms reduce?

    A lot of people say they experience a reduction in symptoms of RA from eating a plant based diet. Many people believe that this happens because Plant based diets are low in inflammation. Could the reduction in symptoms also be because most harmful bacteria feed off sugar? A Plant Based Diet would therefore allow the good bacteria to thrive, whilst the bad bacteria starved to death?

    Right now I am reading a book on Antibiotics found in different plants around the world. Man made antibiotics tend to indiscriminately kill good and bad bacteria, but plant based antibiotics are way more complex and different plants seem to be able to target different types of Bacteria differently. Some plant based antibiotics can kill very specific strains of bacteria and other plant compounds can provide the body with the substances certain bacteria need to thrive.

    The book is huge at over 2000 pages, so it will take me some time to get through it but I am going to see what effects these different plants have on my wife and I'll report back here with findings. I am trying to find plant based antibiotics that specifically target Staphylococcus and Klebsiella whilst having the smallest possible impact on other types of Bacteria.

    There also seems to be some momentum building for the use of plant based antibiotics in mainstream medicine. A lot of Pharmaceutical companies are starting to mimic the chemical compounds found in plant based antibiotics in their own man made antibiotics. They are copying the chemical structure of the plants to make their own man made antibiotics. This must mean that there is truth and depth to the effectiveness of plant based antibiotics.

    I will research the chemical compounds that make up Minocin and see if I can find anything in the plant world that would give the same effects. Feel free to email me: info@mmabettingtips.com and I will email you as soon as I discover anything. I'm sure I will because man made antibiotics tend to be very basic entry level chemical compounds. The antibiotic compounds found in plants tend to be a lot more complex. If Minocin is a man made antibiotic, there will be something in nature that can do the same thing. We just have to find it.

  • Great posts everybody and a great thread.

    The thing that i find confusing is how many people are helped or reverse RA with diet changes.

    The leaky gut theory does make sense to me as i have had diverticulitis before and now RA and when i change my diet things do ease.

    I have been following Paddisons advice and have been taking cucumber/celery juices daily and it really helps and am transitioning to go vegan to see if it brings the changes that so many have benefited from.

  • Hey there,

    Clint Paddison's advice is good to some extent but like with anything there are also some drawbacks.

    His Science is absolutely spot on and pretty indisputable. A Plant Based diet is a super low inflammation diet, so symptoms for any Chronic Inflammatory condition will ease on a Plant Based Diet.

    Problem is...

    People who have RA are usually taking Methotrexate, Biologics or some other form of DMARD. These medications put a lot of strain on the Liver. It's really important that your Liver functions optimally when taking these medications so that you minimise long term damage.

    It's really, really difficult to get the nutrients your body needs for optimal Liver function from a Plant Based Diet.

    There's also another myth associated with RA that Bone and Joint Damage is permanent. This isn't true... Severe damage is permanent, but minor damage and erosions can heal with the correct nutrients if you lower the state of inflammation surrounding the effective joints. By healing minor damage, you prevent the progression of this minor damage turning into major damage. It's really difficult to get the nutrients your body needs to heal damaged bone and joint tissue from a Plant Based diet.

    If I were you I would try to create a hybrid diet based on Paddison's program. The core of your diet could be plant based, but also try to include Organ Meat, Fish, Chicken and Bone Broth to make sure that your body is getting all the nutrients it needs to heal and perform optimally.

    In the short term you may experience worsening symptoms because the meat will trigger a slight inflammatory response, but in the long term you know that the body is getting all the nutrients it needs to heal the underlying causes of leaky gut and process the toxins that come from the RA medications.

  • Thanks for posting this. I was diagnosed with RA 6 months ago and still trying to get medication sorted to control the pain. I'm definitely not as bad as some people but I'm a dancing teacher and finding it harder by the week to do the things I'm used to doing. Fingers crossed something helps. Hope your wife's not in too much pain. K

  • Hi Karalyn,

    I'm so sorry to hear about your recent diagnosis. A lot of the stuff you read online to do with RA is very damning, but if you read between the lines you'll see that most of the top results in Google are dominated by large organisations like the NHS, Arthritis Research, Arthritis Foundation, WebMD etc.

    We all know that large organizations are slow and cumbersome. They are not agile to change. These organizations seem to be very far behind the curve of modern science and they take a long time to adapt and introduce new ideas and treatments.

    There is so much hope for you right now, even if some of the websites you read might appear to be doom and gloom. There are many people in the world who have achieved remission for their RA. We don't know exactly how they did it, but they did do it, which means it is possible to achieve.

    My Wife's RA was getting progressively worse to the point where she was struggling to walk in the mornings.

    Since then we have eliminated Gluten, Dairy, Sugar, Eggs, Nuts, Nightshade Vegetables, Shellfish, Red Meat and Legumes / Grains from the diet.

    She takes 5 sprays of Vitamin D spray everyday:

    amzn.to/2snVJNI

    It's important that you buy high quality Vitamin D spray instead of Vitamin D tablets. Vitamin D tablets tend to get destroyed by stomach acids, so your body doesn't absorb much of the Vitamin D. The spray is much more effective at being absorbed by your body.

    She also takes a Glutathione supplement. Again, avoid tablets. They get destroyed by Stomach acids. This kind of Glutathion should do just fine:

    amzn.to/2rqWd0o

    For controlling the pain she takes Bio Curcumin tablets:

    amzn.to/2rqFV7G

    Again, with supplements you get what you pay for. The kind of Curcumin / Turmeric tablets found in Holland and Barrett and Tesco are usually destroyed by stomach acids. Those ones I linked to have a much higher absorption rate in the body. I recently read that Bio available Curcumin was more effective as an anti inflammatory than Naproxen without any of the nasty side effects. Research has also shown that it also works well alongside Methotrexate and it doesn't interfere with the way Biologic medications work.

    She also takes Probiotic, Prebiotic and Digestive Enzyme supplements although I don't want to share which ones she takes just yet because they're quite expensive and I'm not yet convinced that they are the best combination of supplements to help with RA. We've jumped in and started taking the ones we have right now because I believe that something is better than nothing, but I do need to do more research on the best possible combination of Probiotics to treat RA.

    I hope that this advice helps you and I hope that you find medication that works for you soon. You will get there, it might just take some time :)

  • Thanks for all this info. I'm meeting my specialist today so will see how that goes. As you say it will probably just take time. 😀

  • Hi Allsop, I'm in the US--Seattle and very little sun--- and looked up the. D-spray and on Amazon several reviewers complained of mold at the sprayer top after a while and they complained of dribbles due to the top not being made well. Not all reviewers said this but Im sensitive to mold and want to avoid it--but I like the idea of a spray--any thoughts? Sandy

  • Allsop--I looked all over for that email you sent and can't find it. Could you please send again. ( I wanted to send some items). Sandy

    ( wyaatch)

  • Good Morning, please keep looking into this and let us know what you find. But I do have one question, what if I have never had klebsiella or staphylococcus. You get very sick with these, alot of people are hospitialized if they have either diagnosis. I am just curious, can they hide in your system without ever being diagnosed? I am really curious about all of this. thank you, I hope your wife feels better.

  • Hi lovekittys,

    Hope you're having a good day.

    You are right Klebsiella and Staphylococcus are very nasty infections. You only have to do a google image search of "Staph Infection" to see what kind of damage it can do, so it's no surprise that people suffering with RA are in so much pain.

    Staphylococcus bacteria actually live on the skin and nasal passages of around 30% of people. It is not harmful unless it breeds out of control or gets into parts of the body where it shouldn't be.

    Klebsiella is found in soil and it is also used in compost for commercial farming because it accelerates the growth of fruit and vegetables. It also lives in our gut, although it is not harmful in low quantities.

    Even though you don't believe you've ever had a Staph or Klebsiella infection, you are constantly coming into contact with these Bacteria and they even live inside you. They live on the skin of people and they also live on the foods that we eat.

    Klebsiella are considered to be an opportunistic pathogenic bacteria that tend to breed out of control in people with weakened immune systems. This is why I am very interested in this particular Bacteria in the onset of Autoimmune Diseases.

    Many people say that they get struck down with an Autoimmune Disease after a prolonged period of Chronic Stress and we know that Chronic Stress causes a weakening of the immune system.

    My wife had been dealing with Chronic Stress for various reasons for about 15 years before the onset of RA, so I guess it was a ticking time bomb.

    Based on what I've learned, I believe if people with RA were to restore a more balanced Gut Microbiome, their symptoms would dramatically reduce because the good bacteria would stop the bad bacteria from growing out of control.

    One thing to be mindful of...

    Harmful bacteria tend to rapidly breed when you consume sugar. They feed off it.

    If you want to go down a very deep rabbit hole, do some research into how Pathogenic Bacteria can change the behaviour of Animals and influence their dietary choices.

    Ever wondered why you get uncontrollable sugar cravings, but you never experience the same intense cravings for Broccoli?

    Bacteria seem to have a very powerful influence on animal behaviour but mainstream medicine don't seem to want to consider what impact Bacteria might have on our behaviour.

    As scary as all this is, we also have to see it as empowering because we can put a name to the problem. When we have a name we can start working on a solution. Medical research has found people with RA to have a high amount of Staphylococcus bacteria in their body, so lets try and find a way to kill off this bacteria and see if symptoms start to improve.

    Me and my wife have been on a hardcore diet and supplement plan for the last 2 months and it's working great, our next step is to try and introduce foods and supplements that will directly attack Klebsiella and Staphylococcus strains of Bacteria.

    Problem is...

    The Gut Microbiome is very complex. I don't want to jump in and potentially do more harm than good. I need to learn a lot about how to attack these specific strains of Bacteria. When I learn more I will share it here, but this is a very deep topic and it may take me some time.

    From the medical research I've read, Klebsiella and Staphylococcus seem to be the prime suspects associated with RA, but if I don't have any success treating those, I will work my way through this list:

    ncbi.nlm.nih.gov/pmc/articl...

    I feel like the solution to treating RA is literally staring us in the face, we just need to figure it out. We can do it. New research and information is coming out every single day. We're not far away from cracking the code.

  • Hmmmm that is very interesting, I had never thought of that. Thank you for the information, I will be watching for your posts. I have been trying to find out as much as I can about RA.

  • Thank you for your interesting articles...looking forward to more info as it comes....do hope your wife is feeling better..cheers

  • We share a similar history regarding a passion for learning. Like you, I learned early that I am academically inclined. I spent several years working with dally diagnosed children back east then the last twenty years as a Financial Planner. When my condition worsened I purchased a pet supply store which was focused on raw, all natural , organic and holistic products.

    Despite all the years in working with disabled(challenged) individuals I knew next to nothing about RD. I was diagnosed in July 2015. My Rheumatologist and I believe I was undiagnosed for several years consequently, treatment has been unsuccessful. I have powered through four DMARD's, Humira, Orencia and most recently Rituxan. Apart from "to late", I have an extensive list of allergies and intolerances to drugs.

    I believe what is lacking in current research is 'connecting the dots', uncovering not what is unique in each person but rather all the similarities. There are many patterns emerging in the 'onset stories' for instance.

    Clearly, traditional medicine has not yet provided any solutions for my condition. Is that because I am to late ? Or is it an incorrect diagnoses ? The last is not likely as my ACCP is 300. Anti Cyclic Citrullinated Peptide Antibody is 90% + associatedto Rheumatic Disease. That does not preclude having multiple underlying conditions. I would love to PM ongoing communications. I am very interested in your results and conclusions.

    I sincerely hope your wife's health care team find a combination of drugs she finds effective.

  • Hi Allsopp,

    On behalf of the RA community I would like to thank you for your research and hope for a better future. I wish you well and encourage you to keep up the good work.

    AARA

  • I've read your post and believe your trying to help your wife and as long as she also has treatment from the Doctors you'll both find a cure as you call it but rheumatoid Arthritis doesn't play by the rules it can slow down as if it isn't there and then my god you can't even move your little finger or breath well so small steps for your wife and love care and sweet words and lots of help from you will help a lot but from what I've read there's no need to say that as it comes across with words how much love you give , I'm sorry if I come across a little worried 💕🌺

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