by Beatrice Clark

It was early 1992 when my family first noticed signs that something wasn’t quite right with my mother. She was forgetful and ornery. Not like herself at all. At first, we didn’t think too much of it, but as time went on, she became more and more forgetful and soon began to say strange things. We would be having a conversation about something when out of the blue, in mid conversation, she would say something totally unrelated to the subject at hand. For example, if we were discussing the weather, she’d pop out with ” well, I won’t let her do that again” .. leaving us to wonder who, let alone what she was talking about. If we asked her what she meant, she would get upset with us for not following the conversation. Or sometimes she would say that she didn’t remember even saying it ! She thought we were nuts ! We called a family meeting one day to discuss what might be going on with her, and decided that she should see a doctor. Her doctor recommended that we go the Community Hospital where they performed a series of tests. Basically, they were mental exams. Mom could not draw the face of a clock for one of these tests. We were told that she had dementia; cause unknown at the time, but mini strokes suspected. After talking with her doctor again, we were told what we could expect; I don’t think any of us really quite believed it yet. Mom was always as sharp as a tack and had a memory that was phenomenal. She was very intelligent. But time proved the doctor to be right .. she became more and more forgetful, sometimes talking as if she were in another time, sometimes mean and nasty with my Dad, and finally she became delusional; thinking that her pants had 3 legs on them, or that the chairs kept rearranging themselves. It was heartbreaking. I would always tell her that she was right; her pants DID have 3 legs in them ( I’ll fix ‘em Mom) or yes, the chairs do seem to be in a different position (I’ll find out who’s doing it, Mom, and make them stop)

Mom began to live more and more in the past. She would often say things that would pertain to past experiences such as when she was a teen or a young mother in her 20′s. Yet she still knew US .. it was very strange. I must admit, as hard to deal with as it often was, there were times you couldn’t help but laugh at some of the things she came out with. Several times she said she was having a baby (at 68 ?) or she would ask us if anyone was watching the baby. There hadn’t been a baby in the family for years. Bless her heart, she loved kids.

Mom couldn’t be left alone anymore and we all had jobs so the only choice was to put her in adult day care. At first, she raised holy hell about going, but when I explained that it was a group for socializing, making friends and doing crafts, she relented and gave it a try. They were fantastic !! God bless those people. We were fortunate enough to find a day care with experience in dementia and therefore, they knew how to deal with her. She actually enjoyed going, and it was a big relief to us to know she was safe. At night, Dad did his best, bless his heart, but he still wasn’t sure how to deal with her sometimes and they argued alot. He would call me crying and upset until he finally realized that telling her what she wanted to hear was the only way. Now, this does not mean that you should let them do anything they want, especially if it is unsafe; but to work around it. Anyway, she was in day care for about a year. At that time it became evident that she needed to be in a nursing home. She had become aggressive, sometimes striking out at my father or someone else and Dad could not take care of her at home anymore. She had lost control of her bodily functions and had trouble walking ( she just forgot how) She lived more and more in the past. Yet, even then she still knew who we were. So when the day came to put her in the nursing home, she said to us “How can you do this to me ?” I can tell you that was the hardest part of all. We knew there was no choice, however, and so just did the best we could by her, in going to see her daily, etc. The first year, my Dad couldn’t bare to go there alone, so every night after dinner (we started feeding him at my house, to make sure he was eating right) I went up to the nursing home with him and we would feed her and put her to bed ourselves instead of letting the nurse’s aides do it. It was our way of “doing something” .. anything, because we felt so helpless. Plus, I like to think that she knew a loved one was putting her to bed .. not a stranger. Don’t get me wrong, the nurse’s and aides were wonderful ! Anyway, that went on for another year, until my sister moved back from Florida to help. God bless her ! I was pretty burned out by then, having my own family and job. We then took turns, every other night going up there with Dad. Whoever had him for dinner that night, was the one to accompany him to the home. Mom steadily got worse, until she only recognized us once in a while. Most of the time, she was lost in some strange world that we couldn’t get to. Often she would say she was having a baby (Mom was 69 yrs old at the time) or she would talk about times that she remembered from long before I was born. The last month of her life, she did not recognize us anymore, or if she did, was unable to let us know it. Mom developed pneumonia from inactivity and passed away on May 1, 1997; a mere 1/2 hour after my Dad and I left her. I remember telling her that night that it was ok for her to go. It was time for her to go “home” to her Mom and Dad. Never did I really think it would happen that night. Many times I have regretted that I did not stay with her that night so I could have been with her when she passed. It was kind of uncanny also,that she should pass that night, as the entire family met at my house to discuss what plans, if any, we were going to have in regards to our parents 50th wedding anniversary which was in late May. My brothers and sister were waiting at our house when Dad and I got there after leaving Mom. We had only begun our meeting when the call came, so we were all together to share the sad news and go back up to the nursing home to say goodbye. I was so glad we did. She had such a peaceful expression on her face; something I hadn’t seen on her for a very long time. As dearly as we loved her, and hated to lose her, we were all relieved at last to know that she had found peace and didn’t have to suffer anymore. Dad still came to my sister’s and my house for dinner every other night for the next year until he was too ill with cancer to come to my house anymore. Dad passed away Nov 22, 1999, approx. 1.5 yrs after Mom. I like to think of them up in Heaven together. Thank you for listening and allowing me share my story with you. I would also like to include a poem I wrote for my Mom the very night she passed away and read as a eulogy.

Related posts:

1. Dad’s Dementia
2. Early-Onset Alzheimer’s Disease

I am 57 and was diagnosed in 2004 with early-onset Alzheimer’s disease. I was a bank manager and was very active in my community and church.

One afternoon, I left work and did not know how to get home. This was the start of a “downhill no return” into the Alzheimer world. I am now in my world, a world of confusion, fatigue, and most days, in severe pain.

I know there are days that I am more confused than others, and there are some days I am more agitated than others. I used to be this very independent, overachiever. And now, I am this very dependent underachiever, which causes me much frustration. Where things used to be very easy for me, all things now I find very complicated – even the easiest task.

My eyesight is unpredictable, so that leaves me with little reading time. But when I can read, I enjoy reading my Bible and spending time with God. I love it when my husband tells me it is time to go to church. There I find peace (even though sometimes it can be chaotic).

I now have a part-time caregiver, and she has been a lifesaver for me. She gets me out of the house, and I try to with my time with her help others. I go to a support group meeting near my home, which has been very helpful. I am hoping there will be a support group for early-onset Alzheimer’s disease coming to my area very soon, and I am looking forward to it.

I have a husband of 38 years that is very supportive, even though I know I put lots of pressure on him. He tells me he can handle it, and I love him even more. We have a 5th wheel camper, and we love traveling when we can. He is still employed, but we travel to the mountains and to a local lake where we can fish for crappie, which we both love to do. We own a pontoon boat due to me and my disorientation; I can fish from it much better.

We love spending time with our grandchildren. We have three (two boys, one little girl and another due in September). We have two daughters who are a great support to us, but we try not to put too much pressure on them because they have their husbands, work and children.

I have autonomic neuropathy and peripheral neuropathy, which gives me much leg and arm pain. This complicates things, but I am a fighter. I have much determination, so I keep on fighting and keep on going. God is good, and he will always remain on his throne. There is where I find my peace and draw my strength.

I never have what people call normal days, but each day is a day in its own and I thank God for every day. He gives me as someone else stated (which I can’t remember who), “I am thankful for this day God has granted me on this side of the soil.” Another one of my favorite’s is, “This is the day that the Lord has made. Let us be glad and rejoice in it.”

Related posts:

1. Defeating Crohn’s Disease
2. There is Hope for Depression

by Walter Moore

I am 57-years old and was diagnosed with severe osteoporosis only after decades of painful fractures.

As a child I helped around my family’s farm and was very active: always running, jumping and playing outside in the sun. I also drank “real” cow milk. I continued to lead a physically active lifestyle as an adult.

Then, at the age of thirty, I experienced a rib fracture. At the time I thought ‘that’s normal, it can happen’. I had another fracture at the age of 40 and subsequently several rib fractures. I questioned whether this was indeed normal, but the doctor didn’t take me seriously and reassured me that slalom is a rather dangerous sport and anyone with slippery shoes can fall on an icy street. And of course I knew my self – my mind is always way ahead of my body – so little accidents can happen… There was also no real explanation for the excruciating back pain. I was told that the vertebral discs had become partly thinner, but not to worry, everyone has degenerative arthritis.

As a result, for many years my life was filled with pain and my quest for a diagnosis included visits to various doctors, X-rays, physiotherapy – a frustrating and expensive odyssey. I even spent a whole year working only 2 days a week to see whether my health would improve. This turned out to have no effect – in the end it was always painkillers and “on with life” regardless of the pain.

Five years ago, as I leaned over the back of the chair in our kitchen, something snapped in my chest. My wife refused to believe that a broken bone could “just happen” for no reason. Inspired by an ad in a newspaper, I made one phone call to a private medical center and an appointment for a DXA. The result of the DXA clearly showed that I had very serious osteoporosis.

I took the DXA-results to the company doctor at work and after that to the university hospital. A series of examinations revealed the whole picture: how serious my osteoporosis was and why I had it. I was also diagnosed with silent celiac disease, a mal absorption disorder in which the body’s ability to absorb protein, fat, carbohydrates, vitamins and minerals, especially calcium and vitamin D, is greatly reduced. Since both calcium and vitamin D are essential for bone health, this partly explains why osteoporosis is so common in celiac disease. This also explained why I had low haemoglobin counts, and suffered from tiredness, weight loss and many infections.

Although osteoporosis had been diagnosed, the official medical center could offer me very little information. I was lucky that I was accepted for a self help course, which was organised by the Finnish Osteoporosis society. I met people who were in the same position as I was. After discussions together and after the lessons held by professionals, I found out how I could cope and move forward with my life.

Now I am retired. My back is fragile and I can’t lift over 5 kg. How I wish that I could lift our sweet little grandchild on to my lap! Shopping bags quickly become too heavy for me to lift safely. Sitting long periods is very difficult – walking at times very painful. But I need to keep myself moving and fortunately I live in a house with a garden and I work there as much as I can. Another hobby is Nordic walking, which I didn’t know much about before my osteoporosis-diagnosis.

Because one reason for my osteoporosis was celiac disease, I follow a very exact gluten-free diet. During the last five years I have taken medicine for my osteoporosis, calcium and vitamin-D tablets. Exercise, which I used to do occasionally, is now a routine part of my everyday life. To maximize my safety in case of a fall, I wear hip protectors every day and in winter I wear spike-soled shoes when I go out.

The good news is that my bones are in a better shape than they used to be. The DXA-measurement last year showed that my bone mass has improved 20 % compared to the results of the first DXA.

I believe that with exercise, medication, calcium and vitamin D, my bone health has improved. That’s why I’m not afraid of aging. I know that by taking charge of my lifestyle, I can positively influence my health – and my bones will continue to carry me into the future.”

Related posts:

1. My Story of Hip Bursitis
2. 10+ Years of Success With IBS

by Allison Glass

Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long. I did what I usually did, and waited a few days to see if this episode of delusionary thinking would pass. It did not. So, I went to my computer and designed a medical degree with my dad’s name on it, scribbled some “signatures” on the bottom, put it in a mailing envelope and brought it to him, in the nursing home, the following day. He was delighted.

I added it to the other awards and degrees hanging on the wall; the entomology “degree,” his legitimate college degree, some other earned awards, an “award” for helping direct Lawrence Welk’s band. The wall was cluttered with the real and the fake, but I knew I would need to find room for more. Dad’s brain would tell him he had earned something and eventually I would need to produce it.

Dad had, indeed, gone to medical school at the University of Minnesota, but that was before World War II. He took some time off to be an archaeologist and then the war broke out. During maneuvers in the Mohave Desert, Dad passed out from the heat. He smacked his head against the baked desert floor and sustained a closed head injury. He was in a coma for months and had to learn to walk and talk again. He succeeded, and stayed in the army until the war ended, but kept Stateside and trained as a sanitarian.

Dad became director of Sanitation for the city of Fargo, meanwhile raising a family and, like so many returning soldiers, he went back to school. He attended school at night and worked during the day. I remember going to his college graduation. I was 14. Dad continued taking any graduate classes that would help his work or simply because they interested him, and he became very successful in the world of public heath.

As Dad aged, fluid started building up behind the scar tissue in his brain. He had surgery to drain that fluid, but the surgery backfired and he came out of it totally demented – and bonded with a voice in his head we came to call Herman.

That is when reality changed for all of us.

Dad moved to a wonderful nursing home, a block from my house, and for the first few years, my mom was still able to live at home, so I’d take her each day to see him (eventually, my mother entered the same nursing home). Everyone in the family wanted to help Dad, but I was the only one who could really get into his head and be who he wanted and get what he wanted.

I was his office manager. I brought him his brief case. I made a graphic letter head for him, and made him business cards. I took dictation. I mailed letters, and “received” letters – and of course – made degrees and awards.

What Dad could remember was attending medical school at the U of M. Why wouldn’t he have a degree, then? He watched Lawrence Welk on public television. I even bought him a baton because he wanted to direct the band. Why wouldn’t he have an award for that?

One day, a couple of years into this saga, a psychiatrist caught wind of what I was doing. He chewed me out royally. I was supposed to ground Dad. Bring him back to reality. Redirect him. I had no business playing Dad’s game.

Hogwash, I thought. I know my dad. I know he is not capable of coming into my “reality” and I wasn’t going to torture him by trying to drag him along. If I argued that he was delusional, he would feel degraded and disrespected. It made no sense to me. I still had my brain. Why couldn’t I put his anxiety to rest by traveling into his world – his “reality”?

The funny thing is, a few years later, a different psychiatrist stood looking at Dad’s award and degree covered wall. A nurse stood next to him. “I didn’t know he was a doctor,” the doctor said. “He’s not,” the nurse said, with a grin. The doctor burst out laughing. Later he asked me where I learned my “technique.”

“I’m his daughter,” I said. That’s all I needed.

Now there is an actual theory about this called “validation theory.” It makes me smile. I didn’t need a theory to know what Dad needed. I just needed love.

Validation is exactly what Dad needed, because what was real to him was real in his world. Yes there were times when I would try to explain true reality, but I chose my battles wisely. I tried to keep him from seeing television news because he would insist that the war going on (there’s always a war going on somewhere) was in our town, right outside his window. I’d try to get him to walk to the window with me, but no, he knew the war was outside and I shouldn’t belittle him by saying it wasn’t.

Okay, I wasn’t going to “play his game” and say, “Sure Dad, there’s a war outside and they will blow us up anytime.” If I couldn’t convince him of the reality that we were in a “safe zone,” so to speak, I would calmly say, “I’m sorry you can’t believe me, but we are okay. We’ll talk about it another time.” Usually, these things happened when he was having a particularly bad day, and we’d just have to weather it.

However, the rest of the time, I’d just agree with him. What did it hurt that he thought he was helping plan the new zoo in Fargo, including finding an elephant? It kept him busy. What did it hurt that he needed to study “Grey’s Anatomy?” I found a copy in the used book store. What did it hurt that he needed a copy of “Roberts Rules of Order”? I found that, after a search, online.

My point is this: Dad’s reality was a real to him as mine is to me. Why should I, who supposedly can use my brain, make his life miserable by continually telling him he is wrong, when going with the flow was not hurting anyone else, and it was making Dad’s life a little more bearable? Why would I not do what I could to help him have some feeling of accomplishment? I’m his daughter. He would have done as much for me.

No related posts.

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. I read it in 2 days.
Chapters 1 – 3
Chapters 4 – 6
Chapters 7 – 9
Chapters 10 – 12
Chapters 13 – 15

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. Take a look at the Books subpage of the Supporting Info page to find out more about the work of these people.

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.” 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.

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 (WITH 134 FIGURES). 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. Now I regularly run 1-2 miles on varying surfaces.

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.

Related posts:

1. I Learned to Live With Osteoporosis
2. My Story of Hip Bursitis
3. Sacroiliitis: My Story

Thanks for the opportunity to share a part of my life that most women don’t want to talk about. I live away from my family, so I haven’t really had anyone to talk to about it.  I think it is good for women to talk to each other.  Hopefully my story will help someone.
Well, menopause was an awful experience for me.  I had perimenopause for five long years.  Really, my periods had been hard since I was 14 years old.  It just seemed like they got longer and with more bleeding when perimenopause started.

Finally full blown menopause began.  I felt like I was in a tornado.  My emotions were up and down.  I felt like I was going to explode at everyone for anything.  My husband would pick on me, which definitely didn’t help.  My kids thought I was going crazy.  I tried herbs and medicines, but nothing fixed it, some maybe helped a little.  One minute I was up then the next down, one minute hot, then the next cold.  My hair was real dry. I was afraid I would lose it all!  My husband really pulled away from me.  I didn’t know what to do.  I loved him so much, it just seemed like he couldn’t do anything right.  We fought a lot, I cried even more.  After a few years of this, we went for counseling and that helped some.  Finally, I got over most of the symptoms.  I feel like a new person.  My husband says the aliens took me away for 8 years and at last returned me to earth!  Well, now that menopause is over I look forward to a great rest of my life.  I hope my husband doesn’t go through his mid life crisis now!

No related posts.