Rheumatoid Arthritis diagnosed 7/97, Fibromyalgia 10/97.
Lucky people win cars, trips, and even money. I never thought I was lucky till I found the antibiotic therapy. I won my life back.
The road to my illness started about 1989, when I began working as a nurse for the County Health Department in the S.T.D. Clinic. About two months after I started to work there I woke up with pain in my elbow and ankle. By that evening it spread to three different joints. It was so strange and scary but I didn't want to run to the doctors. This pain continued to move around the joints in my body for the next few days then quit. Ironically, this occurred just after I started my hepatitis injections and I did not know at the time about the thoughts that RA can be caused from these injections.
In 1990, I had a spot on the back of my leg that was itchy and never went away with topical cortisone or antifungal ointments. The dermatologist at the clinic encouraged me to get tested for Lyme's disease after I told him about the joint pains I had during the past year. I had a high titre and made plans to visit an infectious disease specialist. I did not see the doctor but I did see a resident who wrote her impression as not being Lyme's Disease. Dr Reubin, the specialist, came in and said the bulls eye, which is a symptom of Lyme's disease, wasn't there and I had a false positive, then he walked out.
About two years later I got out of bed, took a step putting weight on my heel, and ended up on the floor from the pain that shot up my leg. The pain was in the tendon and I could not walk. My supervisor at the time was very upset with me taking off sick and I got the impression she didn't believe me. I called an orthopedic doctor and he saw me that day. X-rays were taken. Nothing was seen. I was sent home with NSAIDs and told if it persisted to return. Amazingly, it also went away.
During the next few years I had about nine months of pain from a rotator cuff problem that came out of nowhere. Then I developed plantar fasciatis from walking on the boardwalk in Virginia Beach. At that time I was walking about two miles a day for exercise and the walk on the boardwalk was nothing unusual. Still not a person to run to the doctors, I just took aspirin and suffered for over a year before seeing a doctor. I can truly say Dr.Lang helped me more than he realized because he did everything he knew to get rid of it for me without reverting to cortisone shots. Spenco Orthotics finally worked (He said only this brand name will do.)
Also in 1992, I developed a burning sensation of my vaginal tissues. No itch, just burning constantly over about a five year time period. I also had many sore throats and ear infections, which always started with my eyes burning. I would feel like my head was hot and nose would get stuffy but dry. Working in an S.T.D. clinic I have access to all the testings which all came back negative. And I did them constantly. I went to a new gynecologist as often as my insurance would allow and none of them ever helped the problem.
I am a person who never has headaches, so when I got this pain that started in my neck and went to the top of my head in 1995, I thought I was having a stroke! It was such a terrible pain. I used heat, cold, aspirin, Tylenol, massage and anything else to take the pain away. I don't know how long this lasted but I was miserable for along time. I finally had acupuncture. After five visits with no relief he took a needle and put it straight in the bone at the base of the skull. I said OH then Ahhh. It took it away. That was not the end though because over the next year it returned intermittently.
The throat and ear problems became worse each year and finally the doctor said there was no infection; therefore, he could not give me an antibiotic. About this time I had a dentist appointment and asked him to order Nystatin oral for me. He said I didn't have thrush. Since he knew I was a nurse I said, "Please just humor me." I went home and used the medicine and after three doses I had no more sore throat. A few days later still using the Nystatin, the ears stopped hurting. This was about 1996, and this was when I went to a holistic conference and heard Dr. David Goldstein speak. I was impressed about how he spoke about me so correctly and didn't even know me. I knew I had to be his patient. The large fee put me off and my insurance didn't cover it. Today I would pay twice that much because his help over the next few years would put me on The Roadback.
At the first visit I told him my symptoms. He said, "What do you think you have?" I said, "Systemic yeast." His response was affirmative and because I did all the work, it made his job a lot easier. He started me on alternating Diflucan and Nystatin. Within two weeks the burning of five years was gone and has never returned!!! During the treatment I developed a sausage finger of the little finger and pointer of my right and left hands. I had this happen before and asked him for Colchicine a gout medicine, which helped in the past. This time I developed giant hives. During that same year I had a UTI and took sulfa and developed giant hives. Now I rarely get a sore throat or earache and when my eyes burn I increase my acidophilus. My primary care doc asked, "Don't you get the ear and throat problems anymore or are you going to another doctor for antibiotics?" I told him about the fungal diagnosis. Recently there was an article in the newspaper about ear infections being caused by fungus. My co-workers asked how does it feel to be proven right?
June of 1997, I was getting ready for my son's wedding. My daughter was giving a shower for the bride and I helped a lot. Shopping, I pushed the car door open many times and soon my left arm started to pinch at the wrist. It seemed to get worse and I thought I broke something or pinched a nerve, never thinking arthritis. I also started hot flashes big time and not sleeping all night. All this was making me very grumpy and I fought with everybody. I had no idea this was a symptom, yet! The day after the wedding my feet swelled to twice their size. I could not put shoes on. I felt like no one at work believed me when I had to take off three days sick.
I also developed a trigger thumb and mouth ulcers. The wrist on my left hand was so painful I could not touch it. The bone protruded and has never gone down. But I had no real obvious swelling. The bottoms of my feet would swell if I walked too much and they burned a lot. I cried so much my eyes swelled especially the right one. I could not concentrate to even read a book or watch TV. I seemed to have lost the ability to remember things. I could not balance myself and fell a lot.
I finally made an appointment with my primary care doctor after the wedding. During the exam he said, "Well you'll be lucky if you have rheumatoid. At least we can give you something for that, but for "plain" arthritis you just have to suffer." It took two weeks to get results. Then the doctor was on vacation and no one would give my results. Finally I said I knew he was looking for rheumatoid so it's not going to be a shock. They said my RF was 112 and my sed rate was 9. The doctor wanted me to see a rheumatologist of my choice. I chose someone who I heard was good and compassionate. His name was Dr. Mulhern. Since I work with resident doctors and usually know about as much as they do I politely refused to see the student in the doctor's office. This made him so angry he strode in the door sat down and never even said hello. "Why are you here?" were his first words. I began to tell him about the first pains when he broke in and said, "Do you think you can hurry this up, I have more patients than you today." I was appalled at his rudeness. I was in pain and this man made me feel even worse. After a very short exam he said I had rheumatoid arthritis and to use aspirin because all the anti-inflammatories work the same and aspirin was just as good. He refused to inject my wrist or to give me anything further for pain. This was September 1997, and I was hurting so much I couldn't sleep and so tired I was falling asleep driving on the way to work. One morning I woke up from a stoplight to find all the cars way ahead of me. I was really scared about causing a wreck. All during the next few months I would get to work and sleep on an exam table till work started. At lunch time I ate then slept the rest of the time. After work I would come home to take a nap before I could make supper. I slept only a few hours at night because hot flashes would wake me or the pain and I couldn't fall back to sleep. I lived on aspirin and Tylenol. I tried every brand hoping for one to work. I went back to the acupuncturist and this time the treatment made the pain worse and the needles were agonizingly painful. Someone recently said that I was lucky I wasn't so bad I couldn't work. Well I have comp time. This is time owed from working overtime and it can accumulate to 96 hours took all of that when it was allowed and called off sick many times. I was hassled a lot for taking "my" time. At one point my supervisor said if I didn't like it there I could quit.
At the end of August 1997, I had an appointment with Dr. Goldstein who suggested I do the protocol from the Wayburn Blount Foundation. This treatment was six weeks long and if your cause was a protozoa you were cured. I took two grams of Metronidazole (an anti-amoebic) and Allopurinal (a med for gout) two days a week. This caused a Herxheimer that I will never forget. I was nauseated all day for three days each week and the aches and pains increased. I was headachy and cold. Then I was hot and manic. I ate to get rid of the horrible taste in my mouth. Right in the middle of all of this the pain went away and I jumped out of bed in the morning better than even before this started. The week after the last dose I developed a cold spot on the bottom of my left foot. It felt like an ice cube was on it. Suddenly all the pains were back and new ones were added. My right hand now was hurting and a large nodule appeared on top at the wrist. Both feet were sore at the metatarsal area. I was taking Daypro at this time and was switched to Duract. I was told not to continue any more on the Metronidazole. I realize now I should have continued another six weeks because it wasn't finished working.
Duract was an anti-inflammatory that was taken off the market for causing too many deaths. It was only to be a drug for short-term use, 7 to 14 days. I was on it for about 4 months! The GP said this was no problem. I also tried Feldene, Cataflam and Lodine. When I started Orudis in June of 1998, I finally had some pain relief in my hands but I took 50 mg above the recommended dose. I was never given anything for pain stronger than Ultram. I think no one thought I could be having sooo much pain and refuse the Plaquenil and it was also early in my disease.
My poor husband was so upset because he couldn't help me. He spent nights on the Internet looking for any information that would. He would have me sit beside him while he tried different sites. At this time I was computer illiterate. I had no patience and couldn't concentrate. He would print out material for me to read with smiley notes on them. One night he printed the website of the Roadback. I lit up for the first time. Here was something that was logical. I sent for the protocol and all the information that the Roadback Foundation sold. I even called Pat Ganger. I took the info to Dr. Goldstein and he agreed to order the Minocin but not the IVs. I started at 200 mg MWF. If I had known then to start low and work up to that dose I would have saved myself much pain and agonizing times mentally.
In November 1997, I had another appointment with a rheumatologist recommended by the primary care doctor. I waited four hours in his office before waiting another half an hour in the exam room. He asked if I sleep. I said no. He pressed a lot of places on my body and I cried out in pain with most of them. His diagnosis was fibromyalgia. I asked about the high titre. He said, "Oh you have rheumatoid but that's not what's causing your pain." He ordered physical therapy and Trazadone tablets for sleep. He also ordered Ultram for pain. I told him about the AP and he said, "We are here to protect you from people like that. There is no proof that it works." I began physical therapy. BIG joke. But they did use a paraffin bath that took away some of the tingling pains in my hands. At this point some of the pain seemed to have quieted and I thought I would get better. WRONG! Just before Christmas it got worse. It was a Herx from hell. The only good thing that doctor did for me was ordering the Trazadone. It was miraculous. I slept like I was dead.
I shuffled when I walked. Going down steps I went sideways could not twist anything or open doors. I asked for handles to be put on the exam room doors as an accommodation at work. I am still waiting for these two years later. My feet got bigger and I could not wear any of my shoes. All I did was cry and cry.
At Christmas I got down on the floor to fix something on the tree and could not get up without grabbing onto something and pulling up. That was doubly bad because I couldn't use my hands to lift or pull anything so I used my elbows. I sat there and cried more. It was the worst Christmas I have ever had. The day after Christmas, my feet were so swollen my toes turned blue. I called both the docs and they said make an appointment, can't order anything without seeing you. To make matters worse I now have 3 doctors and was having a hard time getting an excuse for being off work. I had only used prednisone once before but I was at my wits end. I had Cortef, a natural cortisone, from Dr. Goldstein for the pain during the Wayburn Blount therapy so I took 20 mg. It made me slightly more comfortable. Over the next year I adjusted the dosage of the Cortef depending on the amount of pain I was having. I never took more than 20 mg and mostly stayed at 5mg. Five mg of Cortef is equal to 1 mg of prednisone.
At one point I was so depressed I told my primary care doctor I wanted psychiatric counseling. He told me, "Just what you need, someone else to feel sorry for you." Dr. Zioncheck also said, "You think you're bad, what about the poor people whose hands are all knotted up and can't walk? Those are the people who have a right to be depressed and they are the nicest." He did put me on Prozac and it did stop me from crying but it also took away my feelings so I eventually stopped it. Once I also called a help line that was suggested by the insurance company. I had counseling twice. I would have liked to go more but I was really hassled by my supervisor because of the days I was taking off. She once told me she was going to break me from taking Mondays and Fridays off. This was after I told her what I was going through and I also gave her the protocol and pamphlets that she never read. I also applied for intermittent family leave and was turned down because I was not having surgery. I also applied to the Pennsylvania Human Relations Committee in Allegheny County who had a meeting with the county lawyer and said they won't give it to you and there is nothing I can do at this time. So much for helping the disabled.
At the end of January 1998, I found a new rheumatologist. My rheumatoid factor was now 340 and the sed rate was 60. I never had any other abnormal tests. I told her that I was on antibiotics. I also had a mycoplasma test done. I had my blood drawn by my co-workers and I sent it to Dr. Coker-Vann of the Arthritis Research Center in Maryland. It showed a positive past mycoplasma infection of hominis. I felt it was read as past because I was already on the antibiotics three months when it was done. Dr. Wasko refused to be my doctor unless I got an infectious disease doctor to say I had an infection. Then she would work with him but not with Dr. Goldstein. At first I was going to approach the head of the clinic where I worked but the more I thought about it, the angrier I got. I decided to stay with Dr Goldstein. I told her my decision and she is still my doctor and sends all info to Dr. Goldstein. BUT once I called her to see what I could do with an increase in pain I had. She said, "I think its time we talked about Plaquenil now." The only good she has ever done for me is order tests and help if I would ever need to go on disability in the future.
NOW COMES THE GOOD PART
In February 1998, I approached Dr. G with the thought of doing IM clindamycin instead of IVs. He agreed. The other nurses I work with were given permission to give them to me at work. The first week I got 300 mg of clindamycin daily for 4 days. On the fifth day the nurse pulled back on the syringe and got blood when she nicked a small vein. She refused to give the rest of the medicine. The next week I also only got 4 days of the medicine. One week later I noticed my toes were bending on my right foot. At that time they were sticking straight up. Then the left toes started to bend and became more comfortable. My butt was so bruised the nurses were afraid to give the shots so I gave a few in my thighs. It took a long time for the bruises to fade. I started to have more energy. I now wanted to get better faster so we tried tetracycline and generic Minocin. I found out name brand Minocin worked best for me. Everytime I switched meds or changed anti-inflammatories, I had a big flare. I also experienced a sensation in my throat like someone had their finger in the hollow at my neck and was pressing on it. For about a month I had a feeling someone had their fist in my back on the right side of the spine. These problems gradually went away. A few times my elbow would start to hurt but it also stopped. My knee did the same thing. I never got any permanent painful areas after I started the IMs. The beginning of June 98, there was no pain in my hands at night. I always wore wrist splints till after October 98. My husband said it was like sleeping with velcro! I also had crepitis in my heels. It feels like you're walking on broken glass. All my joints crackled when I moved. I had splaying between my toes. Then swelling went down in my feet. One day I slipped on a pair of flats to get the mail and noticed the swelling was gone! Such a good surprise. My feet remain this way today. Since the swelling went down the stretched tendons and ligaments did not go back into place. I have large spaces between my toes in three places. The metatarsal heads in the left foot are still pronounced which makes walking barefoot very uncomfortable. I feel like I'm walking on my bones without skin or fat padding and the bones rub against each other. Even with shoes on it is uncomfortable.
After I started AP hubby found the rheumatic.org web site with its support group and the other arthritis site. I think it was around Christmas and not much was being posted so we did not go back to the rheumatic.org site at that time. The other site did not want to hear about AP. They seemed to love being helpless and on their narcotics. I didn't have anyone to talk to about the things that were happening to me except my hubby. I don't know how I would have made it without him.
By the end of June 98, it seemed the IMs were not doing any thing further and I was tired and summer was coming. It was hot and the hot flashes were so bad. The left foot had developed a localized painful area and it was hard to walk. This is the only spot that has a deformity and I think it's from a cortisone injection. I bleed very easily and I think I bled into the tissue destroying it. This is when I started the Orudis NSAID and another round of physical therapy. I also stopped the clindamycin IMs.
In August 1998, I had my first day of no major pain. It was like a surprise. I also tried to drop the Cortef now taking 5mgs a day and ended up with a massive flare. In September my sed rate was19 My RF was 41. I was starting to feel tired a lot again. Taking 2 hours in the morning off work to sleep and sleeping all night too. Worried that I'm getting worse but feel the same. It was then I started to learn the computer more and dropped in on the rheumatic.org site and found a home!! It is so good to be able to discuss things with people who think like you do. It is wonderful to have Ethel and Chris as well as all the doctors who contribute their expert opinions. I am so thankful for the day Pat Ganger said "I have Scleroderma, why don't you find someone with RA to talk to."
In September 1998, the place where I parked my car for work closed. There is a free lot provided by the county for employees but it is a mile away and all up hill. I walked to and from that lot 4 days and cried all the way home out of frustration and pain. I decided to take a chance and park on the street, which meant I had to run out every 4 hours to "feed" the parking meter, which is almost always fast. So now I'm afraid to get a parking ticket. This is when I applied for a handicap space and was turned down by a government facility (the county health department) when it was the government that gave me a handicap permit. I finally got a break in December and a friend found us a place to park a block away. My right ankle got worse during my walks up the hill. And now I am really frustrated.
I called Dr. Kempf in Virginia. He is known to give the IVs. I started these on October 4th 1998, after a verbal battle with him from my husband. One of the thing hubby said was, "Do you have any idea how it feels to not be able to help someone you love when she is in so much pain?" He had tears in his eyes. Dr. Kempf left the room and when he returned he said he would do the IVs but not send me home with anymore. And he would only do them if I followed all his rules and was solely his patient. Of course I said yes, lying through my teeth. I would do anything for the IVs!
After 4 days of IVs I had a small amount of diarrhea, which only lasted one day. After I came home I told Dr. Goldstein what I did and he felt more comfortable about ordering them now that I had the initial ones. I asked if I could do them myself and he was skeptical. I inserted it in the office and he observed. I have been doing then ever since with help from my hubby.
One week after the first IVs there was no pain in my left hand at all. The swelling went down (it was very little) and the heat from the joints also went away. At this time there were four places that were hurting in that hand. This pain has never returned. I also started to have more days of no pain in my body, just muscle soreness. The next area to be healed was the right hand and wrist. That took a little longer and I now have carpal tunnel in that wrist. I was so excited when I could lean on my hand, or push open a door. I can do almost everything I used to do now.
Christmas of 98 was totally different from the previous year, BUT I did too much and had a bad flare the day after. I didn't want to admit I was still sick so I pushed and pushed to do all the things I did in previous years. In January, I decided to try some of the supplements to see if I could hurry the AP along. I tried SAMe, which at the time I did not know had Sulfa in it. I had giant hives that would not go away. I ended up in the ER with an IV of cortisone. I guess I must have needed that in more ways than the hives because the trigger finger went away. At first I was skeptical because it had been injected twice and always came back. It is gone for good. After this I went through a period of not being able to get out of bed in the morning. I had plenty of sleep but I had no strength to move. Something must have been said to my supervisor at work or she may have decided to finally treat me like the Christian she says she is and now she doesn't mind when I call in sick or for a few hours of comp time. This has put less stress on me. In April 1998, I had my last big flare. It was about this time I could work a full day and not become so exhausted or have pain so bad that I would need two days off to feel better. I even recently lost a good friend due to personality differences and I didn't flare. Once in a while I have a day or two when I get sleepy or ache all over. At this time, I think it's the fibromyalgia that causes these problems more than the arthritis.
This summer 1999 has been great. I have most of my energy back. I can do almost everything I did before. The only problems I have are my feet. My left is slightly deformed at the metatarsal area. It feels like I'm walking on my bones. My right ankle rolls in pretty bad. I am normally flat-footed but now that foot actually suctions to the floor when I'm bare footed. I think this happened because I let the ankle go too long before injecting it with cortisone to get the swelling down. I was too afraid it would loose tissue and ligaments like the other foot. But even with this I can walk much better than a year ago. Walking long distances my feet ache. At times I need to put my legs up to get the pressure off my feet. At lunchtime I still do that or sometimes sleep on an exam table. I still have no outward signs of illness and I know my co-workers don't believe I was ever sick. They have never helped me except for the injections and rarely asked how I felt.
I still take Minocin 100 mg twice a day but since reading a post a while ago, I now do M T Th and Fri. I had a herx after the first week and feel this has helped me although I don't think a newbie should do this. I still do the clindamycin IVs once a week. I think it helps to do a pulse of four days straight once in a while too. My labs are almost normal. Sed rate 3 and RF 32. I know I'm not in remission yet because I still have the sinus problems, still get a stiff neck infrequently, and my little finger aches sometimes. I stopped the Cortef in June 99. I did it slowly splitting the pills because Cortef only comes in 5 mg strength. I also did every other then every third day.
I take a daily vitamin with extra C and calcium. I take Diflucan occasionally and every day I take acidophilis double the dose. If I get vaginal yeast I do Terazzol. FOS is good to feed the good intestinal bugs once in a while. Ultram is for the fibromyalgia. I still take collagen type 2 and lots of antioxidants. I take 1mg of estrogen, which helps the hot flashes. I do not think NSAIDS are bad for you. The studies that were done said that NSAIDS are the reason for tissue and bone damage in arthritis. The people in the studies were not on AP and of course the other DMARDS do not stop the destruction like antibiotics. I still take the Orudis about two times a week.
I hope in this story I have conveyed how much pain I had at the beginning and how depressed I was at not feeling any improvement quickly. It's important to let you know this so you will not get discouraged with the slowness of the process. I also want you to know I had this a long time before starting the therapy. Its important that you realize its not how long or how severe your disease - it's how persistent you are and how badly you want to work with the antibiotics that matters. Change doctors, beg, change NSAIDS, try adding homeopathic but never give up, and never compromise your immune system for a very long time.
The rheumatologist said at my last visit "Look at your hands!!!" They looked normal to me, and they did to her too!
Doctor Goldstein is thrilled and said he is even sending blood samples of his heart patients for mycoplasma testing. He said he would treat anyone who wants to come to see him and I said I would talk to anyone he wants me too. He also went to the last conference put on by the Road Back Foundation. He said, "Cooky do you know we did this backwards? You should have gotten the IVs first." Oh well, you can always teach an old dog new tricks!!!
Cooky, Pittsburgh, Pennsylvania.
Phone number: 412 6640872
You can reach me at firstname.lastname@example.org