Recovery from Rheumatoid Arthritis
Now that I look back, it started in January of 1997. I was 39 at time and always kept myself in good shape. In addition to basketball and a little running, I jumped rope a couple of times a week. I noticed that the front of my ankles would hurt when I started jumping. This pain always went away after a couple of minutes, and I didn’t think anymore about it. I just thought I was getting “old.”
I didn’t know how wrong I was.
In June of the same year, I was playing catch with my son, and noticed that I had some sharp pain behind my knees when I would jump for a ball over my head. The pain would only occur when I jumped. Again I attributed this to “old age.”
In late August, I talked with my brother-in-law, a general practitioner, about the sporadic pains I was having in my ankles. The very next day I began having traveling joint pain. One day it would be in a shoulder, the next in a hip, a knee, etc. I knew this was NOT old age. I went to my local doctor and described my symptoms. He had several blood tests run. My sedimentation rate (general level of inflammation) was far above the normal range. Other tests for items such as rheumatoid factor (an antibody that is common in many people with rheumatoid arthritis) were off the charts. He referred me to a rheumatologist associated with the local university and one of the leading ones in my area.
He was very nice, took quite a while to examine me, and we talked. He had some reservations, but diagnosed me with a mild form of anklosing spondylitis (AS), an arthritis of the back. I tested negative for the HLA-B27 genetic marker, and I later found out that this diagnosis had a reasonable probability of being something else. AS typically has a slow onset, and we set up an appointment in another 6 weeks for follow up.
The pain and inflammation increased rapidly over the next couple of weeks. I did play in one more basketball game shortly after my initial rheumatologist appointment, although I was very stiff within 20 minutes of the game. I could tell things were getting worse. I started looking on the internet to see what I could learn about AS and arthritis in general.
At an out of town football game in mid-October, I could barely walk just a few weeks after I had played full court basketball. Every move hurt. I had to call my doctor long distance to get some pain medicine. It was a LONG day. What was happening to me?
By this time I had serious doubts about my original diagnosis. Through some family connections, I got a second opinion from another rheumatologist out of state. His diagnosis: rheumatoid arthritis (RA), without a doubt. The pain no longer traveled from joint to joint, but had stayed in several joints in a symmetric pattern. I was now limping everywhere I went and in great pain. Now my internet research was focused on RA. I did NOT like what I saw for my future.
I went back to my local rheumatologist. He confirmed the RA. He also mentioned that the severity of my symptoms (pain/inflammation in many joints, several nodules at pressure points, etc.) were consistent with more severe RA. He thought that if I had to have RA, this was possibly a good time as new medications such as Enbrel were on the horizon (of course I knew very little about any of this at the time).
He was also in favor of aggressively attacking the disease and started me on methotrexate, a chemotherapy drug commonly prescribed in low doses for RA, and indocin, an anti-inflammatory drug (he played down possible stomach problems though I now know they are pretty common with NSAIDS). Even though I had read about RA and its progression, I was still coming to grips with the full ramifications of what I was facing.
In trying to console/counsel me at our appointment, my rheumatologist told me something to the effect of “I can guarantee you we can keep you out of a wheelchair as we can now replace almost any joint.” I was NOT impressed. As anyone with severe RA knows, I was living a nightmare. My body, which I thought I had taken pretty good care of, was betraying me.
In the meantime, I was continuing my internet research. In evaluating different approaches to RA, I had some distinct criteria:
It must have at least some logic and/or research behind it. I wanted desperately to find something that made sense to me and I was willing to look outside traditional medicine to do it. I’m still not sure why I had this attitude (divine intervention comes to mind), but I’m VERY glad I did.
It must have a very low risk of harming me. Obviously I didn’t want to hurt myself in trying something out of the mainstream (Of course the mainstream approach has its own VERY real risks, but at least I knew about them).
It must be affordable. I wasn’t ready to pay $199.95 for a copper bracelet, some mysterious tropical supplement, etc. The ones that promised miraculous, overnight results did not make my list of candidates.
In my research, I saw several people that had at least some degree of success against RA by taking minocycline or other tetracycline derivatives. A colleague at work showed me the results of a double-blind study which demonstrated the benefits of minocycline. I wondered why my rheumatologist, who seemed so progressive, had not even mentioned this as a possibility.
I also noted some information about food-based approaches to RA, although those were typically mentioned by alternative medicine sites. I thought “how could they know more than my expert rheumatologist?” If these approaches worked, why weren’t they incorporated into standard treatment? The two rheumatologists I saw, both respected in their field, never mentioned food as a possible factor in my RA.
One day as I was surfing the internet for information, I clicked on a site that asked me for my name and address prior to letting me access it. I thought, “what the heck”, and gave the information requested. A couple of days later I received a list through the mail that showed physicians across the country that were on record as being willing to prescribe minocycline for RA. I was elated when I saw one only 30 minutes from my house! I made an appointment to see the general practitioner listed in my area.
I also sent my rheumatologist a fax of the minocycline study results and asked for his opinion about pursuing this approach. No response. In the short time I had been seeing this physician, I quickly realized how busy his practice was. I never was able to contact him directly via phone. I would have to wait 2-3 days for a reply, and the person calling would be an assistant who often could not answer my questions.
I was frustrated, was rapidly deteriorating with the best methods my rheumatologist could offer, and felt I could do no worse to go elsewhere. I told my rheumatologist’s assistant I was not coming back. I didn’t know it at the time, but except for the decision to marry my wife, this was the BEST decision I have ever made!
I kept my appointment with the previously mentioned general practitioner. He filled my prescription for the minocycline, but he also gave me the impression that mainstream medicine did not have all the answers in this area. He had confidence RA was treatable in the vast majority of cases and had experienced some success in this regard. This doctor had been threatened by the state medical license board for using alternative methods for heart disease (he showed me a copy of the document he had to sign stating he would refrain from using specific remedies with his patients). Word like this travels fast in the medical community, and I later heard some disparaging remarks about this doctor.
What was I to think? Who was right here? I felt like I was in the “twilight zone.” Here I was seeing a doctor who was an outcast in his profession and I had fired one of the most respected physicians in my area. However, I was willing to listen to anything that made sense and all the rheumatologist could offer me was more drugs.
I was determined to follow through on the minocycline method as it had at least some proof that it made a difference for some people. This held more promise for me than the traditional drug-based approach. I was desperate not to become one of the approximately 50% of people with RA that couldn’t work after 10 years. I have a family to support and care for. I’m no different from anyone else who picks up this horrible disease, and I needed to find a way to make things better.
Near the end of my appointment with the general practitioner, he gave me a slip of paper with the name and phone number of a man by the name of Robert McFerran. He said “you really should call Robert as he has more knowledge than I do on this subject and has greatly improved his own severe RA.” How many doctors have you heard that admitted a non-doctor knows more than they do? I thought this was very unusual. I felt good about the appointment, but mostly because I now had the minocycline prescription. I planned to follow the protocol published over the internet that many people have used with at least some success. I took ONE dose and never took any more. What changed my mind? Shortly you’ll find out.
It was also about this time that I went on temporary disability from work. This happened only 4-5 weeks after my diagnosis. I was in BAD shape and getting worse. Sometimes I think this was a hidden blessing as it was one of the things that forced me to act on the information presented to me.
It was a scary time for me in many ways and I knew if things did not improve that I stood a VERY good chance of becoming a cripple in the not too distant future. However, my thinking about long term issues was pretty limited because of the level of pain I experienced. I had difficulty just making it THROUGH ONE DAY let alone visualizing longer time periods. If you read this and have RA, you very likely know what I’m talking about.
I took the paper home with Robert McFerran’s name and number. I planned to call him, but I didn’t consider it a huge rush as I thought I had my next move already determined. I called him two nights later. We talked briefly and I found out he lived in my area. He had also done a LOT of research about arthritis and autoimmune disease in general and was in the process of writing a book about his findings. He explained a little about the approach he had followed for his RA (which was in remission) and invited me to review his book manuscript to see if this was something I wanted to do. The manuscript was (and is) available on the internet.
As I read the manuscript, I thought it made more and more sense in relation to RA. The work of several researchers from the 1920s forward was sited, and I noted how different aspects of the research pointed toward environmental causes (combined with the right genetics) for RA. I decided to try this approach. It met my search criteria: at least some research/logic behind it, very low risk, cost was almost nothing to implement (mainly my own time and effort). It didn’t hurt that I also saw the physical results with my own eyes. What did I have to lose?
Related to this approach, are you familiar with the work of John Mansfield, Hans Selye, Weston Price, George Watson, Rudolph Wiley, Nancy Appleton and Kenneth Pelletier? If you are not and you have RA, you should be.
With McFerran?s generous free guidance, I started on this approach within a few hours of my Thanksgiving dinner, still in 1997. I knew I had some major changes in front of me, but I was more than willing to try this as I now had RA in most of my major joints and a few others (feet, ankles, knees, hips, shoulders, elbows, wrists, hands, neck, jaw). I couldn’t even eat in comfort.
I kept going downhill for a while. I experienced severe withdrawal during the middle of my elimination diet. By elimination diet, I?m not talking about taking out just one food or food group like milk or nightshades. This is not a scientific approach as it leaves too many variables (everything else being eaten) unaccounted for. You must consume a small group of foods that have proven to be non-allergenic for 6-7 days. This is not something to start casually ? preparation, research, and guidance from an expert if possible are highly recommended.
My e-diet withdrawal symptoms told me I had food allergies related to intestinal permeability, or “leaky gut.” Do you know about this term? I recall listening to books on tape because it was just about the ONLY thing I could accomplish. During this time (a few days) I got up (actually was helped up) to eat and go to the bathroom and was in bed the rest of the time.
When I started on the elimination diet, I stopped taking my NSAID. This is CRITICAL to improving as NSAIDs reduce inflammation but at a big price – they prevent true healing.
I continued to take methotrexate during this time period as I knew I was running a race with the disease and I wanted every chance to slow the RA down if at all possible. This is important to recognize ? you don?t have to abandon disease modifying drugs to try this approach at the same time.
I don’t honestly know if the methotexate helped or not as I was doing multiple things at once (eating a whole foods, metabolic diet and methotrexate), but I wasn’t willing to change to find out.
This was a difficult period as I didn’t see much in the way of results yet. Below are some of the things I can remember about this time. I’m sure if you have RA you can relate to this.
I FELL into bed because that was the only way I get down there.
I often couldn’t turn over in bed at night. If I did, it often took 5-10 minutes of agony.
I could only sleep on my back (I had always slept on my side or stomach previously) as I couldn’t get my arms above my head to support myself without a LOT of pain. Of course it also hurt to turn my head to the side as well.
I often couldn’t pull even a sheet over myself to keep me warm. If I became uncovered at night, I stayed that way unless I woke my wife.
You can imagine how the sensual side of bedtime went in this condition.
My hands and wrists were so bad I couldn’t turn a doorknob.
I couldn’t stand for more than 2 or 3 minutes. I had to sit in a chair to take a shower. At my worst, my wife bathed me.
For that matter, I had to take a heavy brush handle to beat the shower water handles in order to TURN ON the shower as I couldn’t do it any other way.
I ALWAYS had to hold a drinking glass with 2 hands.
I rarely went down to my basement as it was frequently torture to do so and it took forever to walk up/down steps.
I could barely drive (and was probably dangerous in doing so as my grip was so poor).
I rarely stayed up past 9 pm as my body was usually worn out at that point.
I couldn’t do anything physical with my kids.
I was regularly stared at on the street as I limped along (in a lot of pain).
I hated the thought of being deformed.
Women started holding doors open for me (at forty years old!).
When walking, I was passed numerous times on the street by elderly people.
I didn’t know if I would be able to work again and support my family.
I think I’ll stop here. You get the idea. This list is only the tip of the iceberg. If you don’t have RA, hopefully you can see why depression is basically part of the disease.
After the elimination diet, I started on a whole foods diet designed to match my inherited metabolism. In my case, this turned out to be a high protein, low carbohydrate diet. When I started this I had no idea about it either but it made enough sense to me and there was enough evidence out there for me to try it. The basics here are that you inherit the way you metabolize foods in same way you inherit your skin, hair, and eye color. This helps explain why no two people respond exactly the same to every food. The way you react to the elimination diet will help to determine the diet variation you should try. I would recommend consulting with an expert in the field at this stage (I worked with Robert McFerran myself).
Contrary to much of today’s nutrition theory, there is not a single diet that will work for everyone. For example, we all know someone, often a relative, that lived to age 90 eating a high fat, meat-based diet. Why is it that one person who lives to age 90 eats the same diet that kills another person at age 50? At the turn of the 20th century, why did many Eskimos start having chronic health problems when they adopted a “modern” diet used by white Americans? What is going on here?
Each of us comes from different backgrounds. I’m sure we would all agree with that statement. If you really look, people around the world eat drastically different foods – some heavily meat-based, some with very little meat – and achieve the SAME level of health. Their bodies are ADAPTED to this way of eating because their ancestors have eaten this way for centuries. For MANY examples of this, read Weston Price?s book, NUTRITION AND PHYSICAL DEGENERATION. Sound far fetched? It may not after you see the multitude of photos in Price’s book. This book really made an impression on me as it clearly shows the consequences (including arthritis) of changing to a modern, refined food diet. It didn’t matter where in the world this happened – the results were the same.
Implementation of this way of eating means approximating, as much as possible in today’s world, the diet of our ancestors. By no means is this an easy task. Today we have removed much of the value of foods (vitamins, minerals) in the name of preserving them and creating artificial tastes. In order to metabolize these foods, our bodies must supply the missing ingredients from reserves. Over time, these reserves become depleted and often we break down in many different, chronic ways. Think about the percentage of these processed foods we eat today versus at the beginning of last century. There is a BIG difference. It’s a physical impossibility for our bodies to adapt to these new types of foods in this relatively short time period.
Yes we do live longer today, and I’m sure that more chronic disease appears as we age. However, we also are seeing an increase in chronic disease (such as type II diabetes) at young ages. Though I haven’t seen the confirmaton, I would be willing to bet that little progress has been made in the last century, after adjusting for the reduction in infectious disease deaths to infants and young children, in extending the human lifespan.
Add to this the stress of living today. Things change faster, and there is MUCH more stimulation of all types. I personally have at last 10 userid/password sets to remember, multiple email addresses (home and work), morning and evening commitments to make, etc. Add in media bombardment from all angles, the expectation to “have it all,” and sleep deprivation and you greatly increase the odds that a person’s health will falter at some point.
For most people, a whole foods diet means making a drastic change in eating habits. Take out sugar, most grains (I do rotate them, but some cannot tolerate them at all), and take out as many processed foods as possible. As you may have noticed by now, this method is not a “magic bullet” in that you take a pill and your arthritis is gone the next day. This is a very gradual process of making yourself healthy again from the digestive tract out.
After about 4 months, I started to notice some slight improvements in how I felt (although blood tests did not reflect this). I knew from the experience of others that it would take at least 3 months to start to reverse the intestinal permeability, which was letting partially digested food particles into my bloodstream. This situation did not happen overnight, and it wasn’t going to go away quickly either. I was still very swollen (couldn’t see my wrist bones at this point), but I did feel less ill. I started back to work on a part time basis (I was pretty wiped out almost every day).
The inflammation was noticeably better, in fact mostly gone, after 6 months. I went on a vacation and drove about 700 miles ? something that would have been impossible only a few months before. I could only drive for about an hour at a time before I would have to get out and walk (actually hobble) off the pain that would develop in my hip. There was still some pretty severe pain, but I KNEW I was improving. Blood test results were a little better as well.
When I started adding back foods one at a time right after the elimination diet, I noticed that some foods caused arthritic symptoms. During this period (mid 1998) I noticed that when I consumed one of these foods (either intentionally or by accident), I would have increased arthritic symptoms. Every time (more than 10) the symptoms resided 2-3 days after onset ? just the amount of time for the food to leave my system. I could create joint pain ON DEMAND.
My attitude was SO much better now as I had some CONTROL over my RA.
I continued to feel better throughout the summer of 1998. I was still taking methotrexate (10mg per week). One week I forgot to refill my prescription, and went without the methotrexate. It made no difference. My doctor agreed to have me wean from it. I did with no problems. That was August of 1998 and was the last time I have taken ANY arthritis medicine.
Improvement has steadily continued since then. ALL of this has been accomplished by RAISING (not supressing as the traditional approach recommends) my immunity through diet, supplements (customized to my diet), and exercise. In August of 1999, I was able to start RUNNING short distances. By December I could run A COUPLE OF MILES on a treadmill. I am just now getting to the point where I can run this distance on pavement.
I have also had multiple x-rays of my feet (both before and long after I dropped methotrexate) which showed the REVERSAL (increased joint spaces) of my RA. Any traditional rheumatologist will have difficulty explaining this.
I now have NO PAIN and basically NO ARTHRITIS SYMPTOMS. Am I just lucky or is this a method that can work for many people? Is the 85% improvement rate for 3,000 arthritis patients after a week of a strict elimination diet (as stated by Dr. John Mansfield in his book ARTHRITIS: THE ALLERGY CONNECTION ) a hoax? Is it worth the trouble or the effort for you to investigate this to find out? I?ve talked with quite a few people with active RA that don?t think so. Of course they still have RA and I am living a NORMAL LIFE.
I have been VERY fortunate to have found the method I have used only a month after my RA diagnosis. I have taken the effort to put this information on the internet to help those who don?t have knowledge of this type of approach or who need to see a success story to get motivated to try something like this.
REMEMBER: If you have food sensitivities, with this method you will know within A WEEK whether you can improve your arthritis. Sound unbelievable? Only if you have a closed mind to the subject.
There are quite a few studies out there that point toward environmental links to arthritis. There are numerous physicians that practice this way, although they are in the distinct minority. This was enough evidence for me to try this method. I am living proof that it is possible to reverse and recover from this dreaded disease. And I am NOT the only one.
Do you want to live out your life in pain, give up many/most physical activities, take numerous immune system suppressing drugs, and most likely have a shorter lifespan than normal? Or are you willing to take the time and energy to learn and try something out of your comfort zone that is helping many people.
It’s your choice