HEIDI, juvenile rheumatoid arthritis

At almost 2 years of age, Heidi started getting fevers for no apparent reason. The doctor suspected a virus. The fevers became more consistent and blood tests were ordered. By this time Heidi was uncomfortable lying down or sitting up. She didn't want to be left alone. The doctor called us with the test results and said we had a very sick little girl. Her white cell count was extremely high and we were to take her to the hospital at once. Blood was drawn every four hours for various tests. There were bone scans, x-rays and a spinal tap but all revealed nothing. Her fevers were 104 degrees and above - nothing they did would cool the fever or bring any comfort.

During that hospital stay the new developments appeared. She began cradling her right arm. Being a thumb sucker, this diminished another form of security. It was all such a strange, frightening experience to such a small child. Heidi stopped eating. The doctor searched for the source of the infection. After talking with an infectious disease specialist, it was decided she probably had juvenile rheumatoid arthritis. We were comforted by the fact we knew what we were dealing with, but wondered what the future would bring.

The first remedy administered was approximately 21 baby aspirin a day. We ordered a case so we would have plenty on hand. By the end of the first week she was sleeping twenty-two hours or more each day. Something was just not right even though lab tests showed the aspirin level in her system to be correct. As parents, being around someone like that day in and day out gives an advantage the doctors do not have. Something had to change. To test my instinct, the next morning's dose of aspirin was eliminated. Sure enough, there was a change by mid-day. She was now staying awake longer periods and had an interest in eating again. It wasn't until later we discovered it was becoming toxic to her system.

We next tried another anti-inflammatory drug - Tolectin. After taking this for several months she started breaking out in welts. Of course the doctor had a remedy for this - antihistamine. I wondered if there was ever an end to the possibilities of medications, but this was just the beginning. Once the doctor has you by the hand, you follow, often without a way out because, as far as you know, there are no other options. When one remedy fails you move to the next step.

The next step was another anti-inflammatory drug, Naprosyn. We found out later this had caused severe anemia. She continued with the steroids prescribed and Tylenol, as needed, for pain. She was stable somewhat for several months and then she started getting extremely high fevers once more and swelling in her joints. The day I insisted the doctor see her instead of waiting a few more days, her knees were swollen like water balloons and so enlarged the swelling seemed to cover half the length of her little legs.

Upon examination, the rheumatologist informed us this was the next step in severity of the disease. He prescribed Tylenol #3 with codeine for the severe pain and we were advised to start gold shots. This routine consisted of going every week to get blood tests and a urinalysis. If all looked well, she would get her intramuscular shot which was a thick, syrupy consistency and consequently painful. The first few times were very hard and we wondered if we were doing the right thing. Heidi had always been such a sweet, tender-hearted child, but now she was frustrated and would kick things. She became withdrawn because of the fears and frustrations she was feeling. This treatment continued for twenty weeks and then we got a real treat when we only had to go every other week for the same ritual.

Exercises were needed to increase her mobility, so she started seeing physical and occupational therapists. On the bad days she had difficulty walking and doing routine tasks we take for granted. Because of the pain, even eating, washing her hands, or sitting on the toilet were impossible for her. We carried her whenever we went anywhere, even up and down stairs. Getting in and out of a car was impossible. Then there were the calls from her room in the middle of the night. She had many nightmares and there were whimpers of pain throughout the day and night.

All the treatments were just a way of dealing with the symptoms and maintaining the body as it deteriorates. Because of not being able to do even normal activities, Heidi's strength was lost and her body looked frail. The only hope we were given is that she had a possibility of growing out of it as can happen with JRA.

Then a miraculous chain of events started taking place and suddenly there was another option which many haven't heard of. When I look at others who have no hope of a cure, I almost feel embarrassed that we do. The new treatment, which has actually been around for a long time, treats the source of the disease and has much success, but is unconventional in the realm of rheumatology today.

After my husband had a chance to share at church an experience that involved our daughter's illness, he was approached by someone who asked if he could send us some information. We were skeptical, but agreed. Many people had offered pat answers and solutions, so presumably this was just another one. Copied pages from a book entitled The Road Back arrived, but it was a week before I finally read them. I was intrigued. The man who sent these pages was himself being treated for arthritis using this therapy of antibiotics.

I quickly called Dr. Mercola and asked him how we could learn more. He recommended reading the entire book from which the copied pages had come before pursuing it any further. Finding it in the library the next day, I speedily read through it in awe. For the first time there was an explanation for the origin of the disease. It put all the pieces of the puzzle together and answered the many questions I'd had in the back of my mind all along. The thought that really popped out of the book by Dr. Brown (p.30) says, "When I order a blood test for a patient on a program of antibiotic therapy, it isn't to see whether the patient is surviving the medication, but rather to measure factors . . . to determine the progress in combating the disease of arthritis." I could not believe that up to that point there was absolutely no explanation of why arthritis disables so many people. Now it all fitted together.

We have prayed all along for Heidi's healing, or at least for each of the hard days to be sustained through them, but most of all that we would be guided and that some good would come out of all this. I feel now that it has, because we are able to pass hope on to others.

In May of 1989, a year and eight months after we found out Heidi had arthritis, she started on the antibiotic therapy. Dr. Mercola prescribed Minocin 3 times a week and 600mg. of Cleocin orally once a week. She was given 5 mg. of prednisone a day as needed. We were excited at the potential we had but scared of disappointment if for some reason the disease was not reversed.

We were warned Heidi would probably get worse before she started getting better as the body started fighting the infection. We had only a couple of days of this where her one hand was so tender it could not be touched. By the fifth day after the treatment started we went out for a walk. Then she wanted to ride her tricycle and did so for a whole hour. Before starting this treatment any exercise would tire her after a few minutes. We were seeing dramatic improvements already.

We were witnessing a miracle. Heidi began to rise quickly each morning and went without her usual naps. Her body cooled and her personality was emerging again. In three weeks she was running - stiffly, but at least she felt free to run without fear that everything she did would hurt. One day we were outside and she began running up and down the sidewalk and exploring as if for the first time, the rocks, flowers and surroundings. She had a smile on her face. We had not seen her that happy in a long time.

Heidi's rheumatologist was very skeptical. He told us this was mere coincidence and that after a short while of being off gold shots she would get worse. So it was difficult to make this choice, but the gold shots seemed to be losing their effectiveness and were becoming toxic. Dr. Mercola gradually spread out the amount of medication Heidi was taking, and after about a year she was off of it completely. In October of 1990, Dr. Mercola said there was no further reason for her to see him. There was a complete turn around in her arthritis.

Heidi continued to improve. She lost her fears. She no longer needed naps and could now do routine activities for herself. The medication-induced anemia left. She gained weight and muscle strength, and all pain left. Heidi was able to discontinue all other medications within five months of starting the antibiotic therapy without any setbacks, and eventually regained her health.

Then in October 1992, we moved into our first home from a basement apartment. Thanksgiving Day, Heidi began to vomit, then the fevers started on and off again. Her pulse began racing and she seemed to be gasping for every breath. We met Dr. Mercola in the emergency room thinking IV therapy would help. Tests discovered a very high white blood count and an apparent lung infection. In about a week she went home where IV and oral antibiotics were continued. It was clear the arthritis was back with a vengeance, and once again Heidi was in bed unable to do anything for herself. She refused to eat. She lost ten pounds and was nothing but skin and bones. We were told to cut out the sugars and we added acidophilus for the yeast. She was given Pamelor and soon she was feeling better and willing to eat. Testing at this time revealed a SED rate of 189! The lab had never recorded a SED rate that high.

Heidi began experiencing severe pain from fibromyalgia for which she used a special electronic nerve stimulation device, and Tylenol#3. Along with the antibiotics, she was taking magnesium, high doses of vitamin C, borage oil and the anti-depressant (which gave her an antihistamine benefit). It was at this time that we were informed of the link between allergies and arthritis, and the possibility that silver amalgam fillings could be toxic.

Since Heidi began having problems shortly after we moved into this house, we wondered if there was a connection. In the spring of 1993, (7 months after Heidi became ill) we had an appointment with Dr. Mercola. He had just attended a seminar on environmental allergies. I was given the book Is This Your Child by Doris Rapp. Dr. Mercola began testing Heidi for allergies and found she was allergic to all types of mold, formaldehyde, milk, wheat, corn, beans, peanuts and tomatoes. The connection between what she ate and how she felt was amazing. Corn products produced excruciating pain. We discovered many food products have corn hidden in their ingredients.

Heidi started taking neutralizing sublingual drops, and we started work on making our house more environmentally friendly. Woodwork around windows and closets (attractive places for mold) were bleached, house plants and baskets removed, heating and cooling ducts were cleaned. A dehumidifier was placed in the basement. The basement was not damp, but if Heidi went downstairs, soon she would experience severe pain and had trouble breathing. An electronic air cleaner was installed.

By the fall of 1993, there was notable improvement. Then suddenly she became quite sick again. More allergy tests revealed she was allergic to weeds. At this point allergy shots were given for all her allergies, replacing the drops. Her health stabilized but her muscles had deteriorated and by February of 1994, she was so weak she was no longer walking.

Overcoming the damage caused by lack of proper nutrition was going to be very difficult. We obtained a light wheel chair but she could not manipulate it. It did make it easier for us to care for her though.

To be covered by state funded insurance, Heidi had to be seen by a rheumatologist of their choosing. He wanted to start Heidi on methotrexate but we refused. We thought maybe the reason Heidi had not responded to the antibiotics the second time was because her immune system was so compromised when she refused to eat. The rheumatologist was appalled at her appearance. At age 9, now 40 pounds, Dr. Deitz described her as looking like a victim of a concentration camp. Feedings were started via a feeding tube, and in just a few days her energy increased. But problems developed with the feeding tube so a tube was inserted into her stomach and we had to continually adjust the rate of drip to accommodate her ability to digest the liquid.

Within a month Heidi was gaining weight. Her desire to eat returned and she wanted to get out of bed. Working with a therapist and a walker, she slowly began walking again. The disease severely damaged her hips. Dr. Mercola has prescribed Cal-Apatite to rebuild the hips. At this time her SED rate had dropped to 10!

It was suggested we see another specialist. He ordered all types of tests looking for bacterial infections or hormonal problems. A nutritional analysis revealed a mineral depletion. This wasn't surprising considering what she wasn't eating. This doctor is giving her injections to promote tissue growth and this is also helping her hips.

Heidi has had two serious bouts with this disease. Each time it was preceded by immunization shots received about one month apart prior to the start of symptoms.

Heidi is now in public school for the first time, no longer using the wheelchair. She participates in physical activity running and skipping. She finally was able to ride the bike we purchased for her when we first moved into this house. Her weight is increasing.

Evaluating this last bout, we feel the stress of the move, coupled with all the molds she encountered, caused a severe allergic reaction resulting in the lung infection which triggered the arthritis again. Not eating properly, her immune system was compromised and everything was downhill from there. But 1996 was an extremely positive year. Heidi has fully recovered and is doing very well. Her medications are simpler. She takes Minocin and clindamycin, allergy shots once a week, zinc tablets, borage oil, echinacea and flax seed oil.

Shirley Haglund - February 1997
Phone US 608-328-1822
You can reach us at sahaglund@tds.net

Update July 2006 by Heidi

After 1996 things continue to get better.

I went back to living a pretty normal teenage life. Things continued to get better with time and doctors where hoping that I had finally had grown out of the arthritis, and hoped that I would never have any other problems with flare-ups.

We again moved in 2001 and things seemed to still be okay. There seemed to be no problems with the new house and allergies that have affected me in the past. Things seemed to be going well. One day we decided to move my bedroom from one room and move me down to the finished off exposed basement. We thought nothing of it due to the fact that I have been healthy for so long. A few weeks after moving down to my new bedroom, something was just not right. I started to get very stiff, and something was just not right. But as usual when I was sore I just took some pain relievers and then things where better.

I continued to stay in the new room for a while longer and things never seemed to get better. My parents thought about it and put two and two together. It was the basement that was causing my symptoms to flare up again. We narrowed it down to the moisture in the basement and possible allergies that where causing my symptoms to flare up again. So we quickly made another move and switched my bedroom back upstairs and away from the basement. This made an instant difference in my general health. I was not as tired and stiff as I was from being in the lower level of the house. Things seemed to go back to normal.

I was feeling better but the effect on my hips from the most recent symptoms and the damage caused on them when I was young was irreversible. I continued to have problems with my hips getting stiff and locking up after only a short distance of walking. Any task seemed to be elevated in difficulty due to the fact I could not stand for very long periods of time because my hips would hurt so bad. Doctors gave me prescriptions for hydrocodone for the pain. This helped but I was taking the maximum dose per day that was ever allowable and it would only cover up the pain for a short amount of time. With all I had been through throughout the years I pushed through it and did the best I could but my hips continued to get worse. Things where not getting any better with time.

I would have shooting pain just from getting up and walking across the room. Also because my hips where getting so bad they would lock up constantly and would not move. After discussion and people around me suggesting it we finally looked into hip replacement. Doctors had been telling me since I was about four years old that I would eventually be a candidate for hip replacement. But through the years they deterred from performing it because they wanted to wait until I was completely grown. In 2003 we started to search around for doctors which specialized in hip replacement of people who where effected by arthritis.

We found a doctor out of the Madison, Wisconsin area that specialized in hip replacements. We had seen a few doctors before we went to Madison and they where less than eager to perform a hip replacement on an 18 year old girl. Even after telling the other doctors we went to that I could no longer stand the day to day activities I had to perform, they did not want to do a hip replacement. They saw the x-rays but still did not want to do it. We had x-rays done at the beginning of 2003 and then again right before I started going to doctors at the end of 2003. There was a significant shrinkage in the cartilage in my hips just over a 12 month period, and now my hip bone was rubbing on my pelvis.

So we went to this other doctor in Madison thinking the worst. I was starting to get discouraged thinking no one would believe me about how much pain I was in. He took one look at the x-rays during our office visit and could not believe I was still standing. He again took x-rays at this visit in January 2004 and the hip bone was now pressing up into my pelvis bone on the right side. My right side was the side that hurt the worse, and he could see why by looking at the x-rays. My left side was manageable even though it hurt. That day we scheduled a total right hip replacement for the end of April 2004.

We went in hoping for the best; but right now anything would feel good at least if it alleviated some of the pain I was feeling. They performed a total right hip replacement but did not cement it in like a normal replacement due to the fact that they wanted the bone to grow around the metal as much as possible. They wanted all the bone growth possible also due to the fact that I will have to have my hip replaced again in about 20 years. When they got in there to perform the replacement it had gotten worse in just the three months since I had seen the doctor last at our first appointment. They caught it just in time before serious damage was caused by the hip bone pushing through the pelvis.

After the surgery in recovery they wanted to know my pain level. Even after going through surgery and being out of it from that I felt and immediate difference. The pain went from excruciating to just minimal. I could not believe the results. I could not walk on it for six weeks but when I did, I could hardly believe how great it felt.

Then due to the fact that my right hip was feeling so well, my left hip started to get worse, and quick. I did not notice the pain in my left hip before due to my right hip being so painful. So again we went back to the doctor to find out the next plan of action. We took more x-rays and saw that we should also replace the left hip. So in November of 2004 and at the age of 19 I went through my second total hip replacement. Not something someone that age wants to go through but I saw the results of the first one and I didn't even second guess myself. After both of my surgeries I felt like a new person and doctors where amazed with my progress and how well I healed. Both hips where doing great and where solid in place.

Things seemed to be going well. I was healthy and feeling no more pain after the surgeries. I moved away from home and took a job in Illinois in December of 2005. I was happy to start a new chapter in my life. About the middle of January 2006 after moving into my new place something was not right again, but I thought nothing of it. I just thought it was the flu and it would go away soon, but things never seemed to get any better and it never went away. I started to get stiff again and sick. I started to get worse and started missing work. Something was just not right. I was talking to my family back in Wisconsin one day and it just clicked. My mom again connected the dots and asked if it might be where I was living. When I was looking for place to live when relocating I made sure I found a clean place due to the fact I have had problems in the past. I found a nice clean two story apartment that I thought would be fine. After my mother made the connection I thought about it. The first floor was directly on top of concrete and the moisture must have been creating mold and allergies that had triggered my symptoms again.

I was getting bad enough that I was starting to lose my independence again. I went to visit my family one weekend and they could not believe the change. Later my mom confessed that she could not believe what she saw. I have always been pretty independent and self sufficient. But on this particular trip it was hard for me to even get around. I was stiff, could not move, and was very lethargic. I had my family help dress me and help me get around. And on top of that I had lost weight and was not eating properly anymore. We started to fear the worst that the arthritis was back again. We knew we had to get me out of the house I was living in. I was not getting better living where I was at and I was getting married in a month and a half and wanted to be able to walk down the isle. My grandmother lived around the same area where I lived in Illinois. So my parents called her and asked if I could move in there and test out our theory that it was my apartment that was making me sick.

That weekend I packed up the essentials and moved temporarily into my grandma's house. There was an immediate result. I was able to breath properly now and my stiffness started to go away. I also started to eat again and gained back the weight I had lost. We knew that it was the apartment I was living in that was making me sick again and started to flare up my symptoms. So I knew I had to be careful in the house I lived in. I started searching around again for an apartment that I could handle, this was more of a challenge than you could ever imagine. To find a place that had little moisture or was on a second level so that I would be away from anything that would cause moisture and mold. I also had to quickly find a place so that I would have somewhere to live once I got married, as my husband was moving down to Illinois. We found a place finally at the beginning of May and a week before the wedding. There is a basement below the main floor living area but we just make sure we take precautions to insure that I will not have symptoms come back. I make sure that I am not in the basement for an extended period of time and we run a dehumidifier to keep it dry.

So far everything is going well and my symptoms that I was getting back have diminished and gone away. So even though I no longer get immunizations I still have to keep on top of the allergies that I have to make sure they do not cause any more arthritis flare-ups. Things are better, but we will just have to always check and be careful.

Heidi Rufer

You can reach me at Rufer_H@sccompanies.com


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