From my journal, spring of 2002:
Three steps forward and two steps backward
When I purchased this journal a few years back with good intentions toward keeping up with my writing, I never imagined I would write in it that I have rheumatoid arthritis. If I had known it then, I wouldn't have purchased such a heavy one, this one is painful to hold.
Where do I begin? I should have started writing months ago, but hindsight is 20/20.
I'm not sure when my first symptoms appeared. RA is so nebulous. My knees have bothered me off and on since my college days, I had a horrible rash about five years ago followed by fatigue, about 2.5 years ago my left elbow hurt for a few months, etc.
The first symptoms I can directly attribute to RA began last summer. One day after a weekend of hauling dirt, my right shoulder was incredibly painful. I couldn't raise it at all when I got up. But after a few hours the pain dissipated enough for me to go to work.
On another occasion my fingers ached to the point that I wasn't sure I could type on my PC when I awoke. That pain lasted a day.
The first chronic pain was in my feet. I thought it was because I had been wearing sandals all summer. After a few months it went away.
Then came fall.
I went through a terribly stressful time at work. It was one of the toughest times I've had in my life. Following that bout, my aches and pains increased. They moved from joint to joint, but now they would be on both sides of my body. Both shoulders would hurt or both knees or feet.
At this point I began to worry. At Christmas my joints were so sore it was hard getting off of the floor and when I did stand up, I walked like an old lady.
I set up an appointment with a GP and in the meantime I started investigating. All of my research pointed to one disease: rheumatoid arthritis.
I met with my GP and he set up an appointment for me with a rheumatologist. He also prescribed an NSAID (non-steroid anti-inflammatory) for me.
The next morning, after a day on the NSAIDS, I felt great. My feet didn't hurt at all. I thought this was great, that's all I needed. Unfortunately it just happened to be a good day, the NSAID wasn't working miracles.
An unfortunate side effect of NSAIDs for some of us is reduced circulation to the kidneys which causes water retention. After a week on the NSAID I had gained 15 lbs. of water. I ended up in the emergency room where their solution was to prescribe another NSAID, which caused the same problem.
I went off to my rheumatologist and he told me I had a 95% chance of having RA. I told him about the problem with the NSAIDs and he told me to try Motrin, although he figured that the same thing would happen! Foolishly, I didn't say anything. He also gave me a prescription for Plaquenil and told me to start it in a month if I was still having joint pain. I was to return in two months.
I went home and started Motrin. It had the same side effect but I had to do something, the pain was so bad. I started to take megadoses of aspirin. After a few weeks of aspirin I was just miserable. I just felt sick a good part of the time.
I had an appointment with my ear, nose and throat specialist because of chronic sinus trouble. He flipped when he heard I was taking so much aspirin. He told me that people sometimes end up in the hospital with transfusions! He also told me that I was susceptible to bleeding for 10 days after I stopped taking the aspirin.
During all of this time I was continuing to do research. Before my initial rheumatologist appointment I was telling a coworker about my suspicions of RA. She told me that she thought American physicians use drugs that are way too strong. She suggested that I set up an appointment with a doctor Mercola and she gave me the URL for his Web site. Thanks to my friend, Zhanna, I found the antibiotic protocol early in my life with this disease. Without her referral to Mercola, I don't know how long it would have taken me to come across this.
By the time my second appointment with my rheumatologist came around, I was ready. I really believed in the theories behind the antibiotic protocol. I know my body and I just can't believe that suddenly it would start attacking itself. But, what I have found, is as I get older, my body has a tougher time fighting viruses, etc. My body has a great defense, but once something gets past the defense, it takes some time to get rid of it.
The theory behind the antibiotic protocol is that there is a different "creature" attacking the body. They refer to it as a mycoplasma and describe it as something between bacteria and a virus. It's like bacteria in that it can be killed by antibiotics, but it lives inside our cells and only comes out to reproduce.
In the antibiotic protocol, low doses of an antibiotic like minocycline are taken three days a week. Treatment can be slow and patients may have a Jarisch-Herxheimer reaction where the pain gets worse before it gets better. With the mycoplasma theory, when the mycoplasmas die off, our white blood cells go into clean up and these activities are what cause the joint problems. The theory postulates that, as the antibiotic kills off a higher level of mycoplasmas, the pain in the joints increases.
When I look at the other treatments for RA, I get depressed. If Plaquenil doesn't work, then I have to take medications that suppress my immune system and can affect my liver and kidneys. In essence, I have to ingest drugs that are toxic to my system!
Armed with all of my information and in a lot of pain, I was ready for my visit. Many doctors do not believe in the antibiotic protocol and will not prescribe the minocycline. I believed so much that I had to try this that I was bound and determined to find a rheumatolotist who would support me in this. If I couldn't find anyone, I was prepared to fly down to Mexico to get the drugs and treat myself.
My rheumatologist said he had been "underwhelmed" with his results in using minocycline but said I could try it if I wanted to. I couldn't believe it! He also gave me a prescription for a new NSAID that was supposed to have less of a chance of causing water retention. My doctor prescribed minocycline at 200 mg. a day, daily. I mentioned that I had read three days a week. He just smiled and said I should take it daily.
I followed his advice and started taking the minocycline twice a day. After a few days on the NSAID I was back to swollen ankles so I was given a prescription for a light diuretic. In addition, although my doctor told me to stop taking the Plaquenil, I decided to remain on it. Plaquenil has few side effects and, although my doctor wants to see what is helping me, I just wanted to feel better!
My pains continued to get worse. The RA really settled in my hands. When I woke up I could barely bend my fingers. Even raising the lid on the toilet caused terrible pains to shoot up my hands and I had a terrible time just holding a toothbrush. My fingers swelled to the point that I couldn't wear any rings and leather gloves were too tight.
The one thing I have been able to do, though, is type which is vital to my job in IT.
My shoulders hurt so much it was difficult to sleep and I couldn't bend my arm completely.
It got so bad that I could barely put gas in my car. I had to hold the grip on the pump with both hands and it was so painful! I had to use two hands to pour milk from a gallon jug and I had to hold my hand a certain way to open a bottle of orange juice. The first day I couldn't open my plastic bottle orange juice at work, I almost broke down in tears.
I was so depressed, I didn't know where it was going to stop. How bad was it going to get - and so fast! I was also very irritable, everything was such a chore - I moved so slowly and painfully. I felt so bad at places like the gas station or grocery store because it would take me so long just to pull out money or a credit card from my wallet.
The saving grace was that I could still ski. It was painful getting on my ski boots and some days I could barely hold my poles - and I was miserable when I got to my motel room in the evenings, I could barely move - but I was still able to ski. The biggest challenge was carrying my equipment between the hill and the car.
But even this had its bad days. One morning I had to spend 30 minutes chipping ice off of my vehicle after a bout of freezing rain. That left my right wrist almost frozen for days and I actually began developing a nodule on it. On more than one occasion, I found myself crying while riding alone up the chairlift on the days when even holding my poles was painful. I wondered what would happen to me if I was getting so bad so quickly? How long would I be able to live independently? How long would I be able to work?
I finally picked up a copy of "The New Arthritis Breakthrough" and in it they said that intermittent dosages of minocycline were more effective. If given too often, patients could become hypersensitive. This hit me hard. I immediately stopped minocycline for a week and then started up again with 100 mg. per day on Monday, Wednesday and Friday.
Maybe it's a coincidence - this disease is sneaky - but within a few days of stopping the antibiotic I started feeling a lot better. Right now I've been back on the lower dose for a week.
It's amazing! I can pump gas with one hand and the same with pouring milk. My hands - as well as the rest of me - still ache in the morning, but not to the same degree.
I can mow the lawn, lift weights - pretty much do anything again. As I said, I still ache, but not like it was.
What does this mean? I'm not a medical expert, but this tells me that the antibiotic does have an impact on this disease. I think the higher dosage was killing so many mycoplasmas that my body was going through hell as it tried to eliminate them. I have great hope that in six months or maybe a year, I will be even better! By then I expect that the weight of this journal won't be an issue any longer!
Mom and Dad were down for the weekend. They brought me some perennials. Weather was bad so we mudded them in the vegetable garden. Dad insisted on fertilizing and decided that the lawn needed to be mowed first, so we mowed and fertilized in the rain. We then went shopping, dinner at Luisa's, and then spent Mother's Day with Fred, Toni and Olivia. My RA wasn't bad, I cleaned the house and mowed the lawn without any trouble (no wrist support, either).
On Monday I saw Dr. S. He said my SED rate dropped from 60 to 50. In addition I think he said my CRIT was 1.4, up from 1.2. He offered methotrexate again to me. I asked him for a prescription for Minocin because the generics can be unreliable. He didn't seem to know this. I also told him I'm taking minocycline on M-W-F. I thanked him for humoring me.
On Monday I didn't feel too well. My shoulders and wrists started giving me problems. Tuesday was worse, I had a tough time getting anything over my head clothing-wise. I was very crabby on Tuesday due to the frustrations of trying to get around when the body can't cooperate.
Today I feel better. This is good because I was contemplating getting off of the antibiotic again for a week. Right now I don't think I'll have to do it. Maybe it was a flare-up, I don't think it was weather, but you never know!
I've felt good for the most part since I last wrote. I figured out that if I bend over while taking clothes off over my head it's less painful. My hands have stiffened up off and on also. I need to start working out again, I'm starting in the morning.
I got my ring on my left hand tonight! It was tight and it was hard to get off, but I had it on for a few seconds!
I should have entered a journal entry for my July check-up with my rheumatologist. The nurse asked me how I was feeling and I told her that I was feeling good - and I meant it. She said that response was refreshing, she didn't hear that very often. Dr. S. told me my SED rate had dropped from a high of 60 to something like 38. In addition, another one of the tests put me back in the normal range. Wow! That was a great day. And, after visiting my rheumatologist every two months, I was told not to come back for a year!
On my way home, I thought of my reaction when I got out of my first appointment with my rheumatologist where he told me I had a 95% chance of having RA. My outlook had done a complete 180!
The prediction I made six month ago was right, the weight of this book isn't an issue any longer. I still get some stiffness in my hands, but nothing like it was.
I keep improving and it's amazing. Sometimes I suddenly realize that something doesn't hurt anymore.
Right now I'm not the best I've been, but I'm really good.
Let me share how far I've come. I have my thumbs back, I can pull clothes over my head and I can tug on my sport tops. My fingers now touch the tanning bed because my elbows are straightening. I can put weight on my wrists and I have full use of my neck again. I can even look up through the sunroof of my car without pain. I don't get as stiff when I'm sitting down, most of the swelling is gone from my hands and I can bound out of bed in the morning.
My shoulders are now completely pain free.
I don't know how long I'll herx with the increase of minocycline (now 200 mg M-W-F), but I'm so much better that I can handle this little setback.
I can mow and trim the lawn, we hauled 10 yards of dirt this year (no painful shoulder afterwards). I can do pretty much anything!
I've successfully upped my minocycline dosage to 200 mg. M-W-F with little reaction the second time around. In addition, in mid-January I started weaning myself off of the Plaquenil, cutting my dose in half. I encountered some physical reaction, my wrists, hands and elbows were more painful than usual. The pain somewhat has subsided over the following weeks.
In the first week of March I went to Cancun with the family. That week I did a lousy job of keeping up with my meds (except for the minocycline) and overall I felt pretty good. We walked for miles, I was able to haul my luggage, etc. Once I got back I decided that it was time to get completely off of the Plaquenil. Once again I've been experiencing painful wrists, elbows and hands, but for the most part I feel pretty good. I've been tired and I'm not sure if that has to do with the herxing or if it's due to the anemia that is part of the disease.
I'm not the best I've been, I still have some sharp pains in my wrists and my elbows are still a little cranky. In the morning my hands are a little stiff but it goes away in just a couple of minutes. But, I'm off of the Plaquenil. Right now I'm taking the NSAID and my minocycline. Saturday I mowed and trimmed the lawn and today I planted all of my flower pots. This spring I was able to set up my patio set all by myself, and I can haul 40 lb. sacks of dirt, fertilizer, dog food, etc. I don't think that's too bad for someone who, 18 months ago, could barely get off of the floor.
When I was at my worst I feared the future. The statistics on RA are sobering - downright scary. But now I at times I forget I have RA and I'm optimistic about the future. I don't wonder if I'll be able to carry my dogs in five years or if I'll be able to care for my home. Sometimes I'll be in the middle of doing something and I'll realize that there isn't pain any longer. When that first occurred, I'd start crying out of joy.
The day before my birthday in November I had a terrible flare-up. I had forgotten how painful RA is when it's raging. It was painful just pulling up the covers to make my bed. I was scared to death because I didn't know what brought on the bout -- was the antibiotic failing? It was such a sudden change.
Fortunately by the next day the flare-up was already waning and by the end of the week it had passed. Before the flare-up I had cut my NSAID dosage in half, but I brought it back to full strength to battle the pain and inflammation. The full-strength NSAID brought on major water retention problems that took six weeks to resolve.
After my painful bout I decided it was time to take the AP all of the way. I started on 200 mg. daily and I'm thrilled with my progress. I'm completely off of the NSAID and I rarely take Motrin. My elbows are once again straight when I extend my arms! They also don't click and crunch when I do french presses with weights. My wrists are also better. I'm down to pain in one finger on my right hand, and issues with getting on shoes. Otherwise I'd say I'm about perfect!
I just refilled my prescriptions and it was fantastic to have only one for my arthritis (I use generic minocycline). I feel like a normal person again.
February 2005 update
I can't believe another year has passed since I posted an update! I continue to improve. I still occasionally have pain in my left foot in the morning, but that's the only place. Once in a great while an elbow or wrist will be a little sore. But for the most part I'm pain free. I take minocycline at 100 mg. twice daily, and a monthly dose of Diflucan. That's it.
There are times now where I can wear my smallest ring again. That was a real thrill to get back on. I can also wear heels more often.
At my annual exam last summer my SED rate came in at a normal 15. My grip strength in my left hand was 65 and it was 70 in my right hand (the nurse joked it was better than she could do). X-rays of my feet and hands indicated that there was no damage.
I'm working out again, getting ready for an upcoming week-long ski trip to Colorado. The only pain I feel is that of sore muscles these days!
April 2005 update
I spent last week in Colorado skiing and I had a fantastic time. Most of the pain I endured was from tired muscles and a beauty of a bruise I got from a spectacular fall on the second day! My right wrist was sore on one of the initial days from so many pole plants, but that was the extent of the joint pain. I skied for six consecutive days, ripping up the slopes.
Three winters ago (around the time I was diagnosed and started on the AP) I did some skiing in Upper Peninsula Michigan and I can still remember how it hurt to carry my equipment, and some days just to hold my poles as I skied down the hill. Getting my ski boots on was another ordeal because of my sore feet. Now that I look back, I think I was herxing.
During those "dark days" of skiing I could barely function in the evenings. I'd return to the motel room and shuffle around like an old lady from the joint pain in my feet, ankles, knees, hands, wrists, elbows and shoulders. The folks who cleaned my room must have thought I was dying, based upon the bag full of medication that I brought with me.
Looking back at the "before and after," I feel blessed to find the AP so early in my disease, and to feel like a normal person again.
July 2006 update
I get a lot of emails from folks who are curious about the AP. They want to know how I'm doing since my last update. I apologize for the delay, but it seems that now that I have my life back, I'm always so busy!
The summer of 2005 was hectic -- yard work, gardening, etc. In addition, my job got incredibly busy. I worked 30 of the 31 days in August. The next five months I worked about six days a week as well as evenings. I decided it was time to find a new job. I accepted a new position in a city two hours away from my house -- new job, new town, new life. I rented an apartment month-to-month because I needed a place to stay with my two Scottish Terriers during the week. Weekends were spent getting the house in order for sale.Ê
February was tough, very stressful as the dogs and I adjusted to the new routine. I hated it! Getting up at 6 a.m. and standing outside in subzero weather while the dogs did their business was not my idea of fun ... ! The frustration and stress hit me hard, I started getting pain in my joints again. It wasn't enough to limit me, but once again I was reminded constantly that I had RA. My feet and wrists were the "crankiest."
At the same time I started fighting a mean yeast infection. I think the stress really did a number on my entire body. Since I was already in pain, I decided to take the opportunity to drop my minocycline dosage from 100 mg. 2x daily to 100 mg. MWF. I had tried to drop down before and my joints started to ache again. I figured since they were already sore, let's get it all done and over with!
Within a couple of months, I was pretty much back to my old self. The pain was almost completely gone. My left foot still aches a bit in the mornings, but that's about all the pain I have. I still haven't sold my house, but the dogs and I are settled into a routine that seems to work for us while we're in the "nomad state."
I let myself get out of shape with the increased demands of the old job, and it got worse when I took the new position. I walked the dogs every night (even in the really cold weather), but it wasn't enough. About a month ago I joined a local health club and I'm back at it again. I do 30 minutes of cardio and then 30+ minutes of weights 3-5 times a week. In addition, I bought a kayak last summer so I take advantage of the lake near my house and slice through the quiet waters on Saturday and Sunday mornings. It's a bit of a challenge. I hang the kayak from the rafters in my utility shed, so there's a lot of sweating, grunting and swearing as I hoist it up after my paddling sessions. When my RA was bad, there was no way I'd be able to paddle, much less haul around a kayak.
I also do the yard work on the weekends. I mow the lawn, trim around the bushes and gardens, clean up the gardens, etc. I can wash -- and wax -- my cars without any issues, and I was able to haul furniture and boxes when I moved from the house to the apartment.
I had to get a new rheumatologist when I moved. I called the clinic and asked for a physician who would support my AP treatment. I was told that would not be a problem. I met with the new rheumatologist in early July and we talked about AP. When I told him that I was on Diflucan to deal with yeast issues, he asked me if it was worth it to be on minocycline. Astonished, I told him 'yes' in no uncertain terms. He gave me the standard line about the complications that can be associated with the medication. I listened, looking bored, and told him that the only issue I have is discoloration on my legs -- and that was not an issue for me to have a few blue spots if I was pain-free.
Labs were done after the examination. I called up to get the results and when the nurse on the phone gave them to me, she said that the doctor advised me 'not to change a thing.' Hopefully I can make him a believer! My SED rate is 11 and CRP is less than 0.1.
I have a very sad note. I found out today that we lost a member of the AP family. Henry Scammell, author of "The New Arthritis Breakthrough" died over the weekend. He and Dr. Brown have helped thousands of us regain our health. Dr. Brown, by having the courage to stand up for his beliefs in treating us with antibiotics. Henry Scammell by writing a book on Dr. Brown's findings, and continuing to support the effort by volunteering his time with the Road Back Foundation. I so much wished I could have met Henry, just to thank him for helping all of us.
I am so thankful for Dr. Brown and Mr. Scammell. I'm also thankful for the dedicated individuals at rheumatic.org, roadback.org, and the various other sites who continue to spread the word about AP. Without their efforts, their support, many of us would be progressively worsening and dealing with the toxic side effects of the mainstream drugs that are given to us as options. May God bless and keep safe the volunteers and doctors who support AP.
You can reach me at firstname.lastname@example.org