Turn your eyes upon Jesus
Look full in His wonderful face
Then the things of this earth will grow strangely dim
In the light of His glory and grace.
I was sitting in my bath tub yesterday afternoon trying to get relief for my joints. Fear was starting to creep back in as I started wondering about this AP treatment. I'm slowly each day returning to my pre pred and metho pain. As I was contemplating that, the Lord dropped this song into my heart. I started to sing it to myself. Three hours later as I was driving to a bible study, I was listening to SonLife Radio. I suddenly became aware that a woman was singing this very song. It touched my spirit so, that I cried until I got to the church parking lot. I sat in my car and cried the whole time that song was being sung. I cried hard. Jesus spoke to me in the bath tub through this song. He was telling me to focus on Him and not my circumstances. I was not living it one day at a time. I was starting to worry about tomorrow. His word tells us not to be anxious. It also tells us not to worry about tomorrow because today's troubles are sufficient. He used the song to tell me that. Then He confirmed it with the same song on the radio. I was once again reminded that He is with me every step of this walk. He cares that I hurt. He encouraged me more than you can know. I cried because I was so overcome by His love for me. He loves me so much that He found a way to speak to my spirit His love and encouragement. He loves me so much He doesn't want me getting on the wrong path of doubt. What a personal God I have. I'm focused again. I may hurt, but my spirit is light. I know that He led me to AP and everything I'm going through is normal and not permanent. I just needed some reassurance. I just wanted to share that.
Wednesday, April 21, 2010
Tuesday, April 13, 2010
Peek-a-Boo
Ok, into week three with AP. Over all I'd say it has not been all that bad. Now the previous two weeks treating the h pylori is something altogether different. It did not last long however and was worth all the discomfort. I did a second herx last week on the minocycline. It was very mild. I started developing some joint pain and stiffness. I also experienced several days of swollen ankles (cankles yuk), but they are fine now.
I can no longer make a tight fist with right hand. The index finger is swollen and stiff, but it doesn't hurt. Now here is the weird thing. My joint pain is here today and gone tomorrow. Both of my pinkies have hurt at different times and fine within 48 hours. The big toes come and go with their pain. Right now they both are fine. It's like playing peek-a-boo with my joints. My right shoulder was killing me yesterday and is much improved today. I still don't have full motion without pain but it is still much improved. I could feel the flare coming for about three days. My left shoulder is a little irritated and I'm trying to be easy on both. If I lose my shoulders I lose it all. I just can't function if I can't use my arms and they constantly hurt. Don't sleep well at night either. Been there, done that, don't want to do it again.
The minocycline is sitting well on my stomach as I take it with food. I honestly can't tell if I'm experiencing a true flare or a herx. Time will tell. I also know I can experience flares for up to a year before real improvement sets in. Whatever, I know the outcome will be a good one, so it is well worth whatever comes my way.
How is everybody else doing? I really want to know what treatment you're using and how it is working for you. And I hope it is working for you. What little tips do you have to help others overcome some of the obstacles that we face with RA?
I can no longer make a tight fist with right hand. The index finger is swollen and stiff, but it doesn't hurt. Now here is the weird thing. My joint pain is here today and gone tomorrow. Both of my pinkies have hurt at different times and fine within 48 hours. The big toes come and go with their pain. Right now they both are fine. It's like playing peek-a-boo with my joints. My right shoulder was killing me yesterday and is much improved today. I still don't have full motion without pain but it is still much improved. I could feel the flare coming for about three days. My left shoulder is a little irritated and I'm trying to be easy on both. If I lose my shoulders I lose it all. I just can't function if I can't use my arms and they constantly hurt. Don't sleep well at night either. Been there, done that, don't want to do it again.
The minocycline is sitting well on my stomach as I take it with food. I honestly can't tell if I'm experiencing a true flare or a herx. Time will tell. I also know I can experience flares for up to a year before real improvement sets in. Whatever, I know the outcome will be a good one, so it is well worth whatever comes my way.
How is everybody else doing? I really want to know what treatment you're using and how it is working for you. And I hope it is working for you. What little tips do you have to help others overcome some of the obstacles that we face with RA?
Monday, April 12, 2010
Now It's Hives
Over the past two months I've noticed hives randomly showing up on my face. First it was like one a week or so. Now it's two to three times a week. It's still only one hive but they're increasing. I didn't really make a big thing out of it. Then I went to an Arthritis Support board and sure enough, there was someone asking that same question. She has been experiencing an increase in hives to the point she is taking Benadryl for them. Another lady said she carries Benadryl around with her in case she has an incident of hives.
Well, this could be important. So I wrote back that I had them too but not as bad as they did. This wonderful lady told me to carry Benadryl with me wherever I go. She said hers started out a few here and there and then one day her whole body broke out and her throat started to close up. She had Benadryl and that stopped it. She asked her Rheumy about it and he said some people with auto-immune diseases will get hives and others don't. Well aren't I the lucky one? Let's just add it to the already long list of RA problems. Another woman suggested the Benadryl strips that you put on your tongue. I think they would be easier to carry in my purse.
I just wanted to share that with ya'all in case you too have occasional hives. Apparently it can flare just like our joints. I wouldn't want any of you to go gasping for air while you're itching all over.
Like I've said before, the worse it gets, the greater the glory the Lord receives when He heals me. Not just glory for healing, but glory for helping me through it one day at a time. I was tuning in the radio this morning and this man said in a loud clear voice, " Even people with arthritis can find comfort in God. You find it in His Word". I started laughing because it was so unexpected and spoke so directly to me. I mean, here you are are trying to find a station and out of the blue comes this word. I said, "God, you have a real sense of humor". Just blast her with that one when she isn't expecting it. It just shows me that He is aware every nano-second of my physical, emotional, and spiritual state. He never leaves my side and is ready to encourage me anytime anywhere. That word did encourage me. You gotta love His style.
Well, this could be important. So I wrote back that I had them too but not as bad as they did. This wonderful lady told me to carry Benadryl with me wherever I go. She said hers started out a few here and there and then one day her whole body broke out and her throat started to close up. She had Benadryl and that stopped it. She asked her Rheumy about it and he said some people with auto-immune diseases will get hives and others don't. Well aren't I the lucky one? Let's just add it to the already long list of RA problems. Another woman suggested the Benadryl strips that you put on your tongue. I think they would be easier to carry in my purse.
I just wanted to share that with ya'all in case you too have occasional hives. Apparently it can flare just like our joints. I wouldn't want any of you to go gasping for air while you're itching all over.
Like I've said before, the worse it gets, the greater the glory the Lord receives when He heals me. Not just glory for healing, but glory for helping me through it one day at a time. I was tuning in the radio this morning and this man said in a loud clear voice, " Even people with arthritis can find comfort in God. You find it in His Word". I started laughing because it was so unexpected and spoke so directly to me. I mean, here you are are trying to find a station and out of the blue comes this word. I said, "God, you have a real sense of humor". Just blast her with that one when she isn't expecting it. It just shows me that He is aware every nano-second of my physical, emotional, and spiritual state. He never leaves my side and is ready to encourage me anytime anywhere. That word did encourage me. You gotta love His style.
Monday, April 5, 2010
First Visit With the AP Doctor
Monday and my first visit with Dr K. I really have no idea what to expect, but I'm hopeful.
Dr K's nurse calls my husband, David, and me into a room. She spends the next half hour going over every detail of my health history and my family health history. She asked questions about things I forgot I had . Dr K came in all smiles. She starts looking at my history and asking questions. She seemed particularly interested in the ulcers I had some 20 years ago and the food poisoning I had last year. She said you only get ulcers from the H Pylori bacteria. That and the food poisoning were leading factors as to what type of antibiotic she was initially going to use. She believes that you hit the initial offending bacteria hard. Whether it be from your gut such as my case with H pylori, or strep, or staph or any other bacteria. Then after that bacteria has been blasted, she starts the minocycline. So she gave me two weeks worth of tetracycline and metronidazol to attack the H Pylori. She also asked me to fast gluten for 30 days. She had suspicions I might be gluten intolerant. After thirty days I was to eat a gluten meal and see what happens. Pretty full proof test. She went into great detail explaining what gluten free meant. Now for me, this was the worst news. I love my pasta and breads. How in the world am I ever going to eat out again? Oh well, ya do what ya gotta do. She then sent me for blood work. I was to come back in two weeks for a follow up. She told me that I was going to be pretty sick as the antibiotics start to do their job.
Well, she wasn't just whistlin Dixie! Let me tell you something, you go from feeling pretty good and eating anything you want, to feeling like you wished you were dead and not eating at all. I started the meds that Monday evening. By Wed I started getting nauseous. I mean from the time I woke up in the morning to the time I went to bed, I was nauseous. I had to eat to take the meds. What do I eat? I can't eat toast, it's got wheat. I can't have cereal, because she has me off of dairy because it affects the absorption of the antibiotics. No eggs, no cheese, no milk, no crackers. I tried Tapioca and Rice bread. Uh.....not on a nauseous stomach, not ever. So, one morning it was a corn tortilla. The next it was Van Camps pork and beans. There was fruit and then I found shredded potatoes. The potatoes sat the best. I had shredded in the morning and baked for lunch and dinner. I lost nine pounds in two weeks. I also developed chills that lasted a week and felt very fatigued. I just felt absolutely miserable. I wrote on my FB wall,"Just shoot me. Put me out of my misery". As bad as I felt, I was glad it was happening. It meant the antibiotics had found their target and we're destroying the buggers. I just had to hang in there.
I went to see DR K two weeks later. She took me off the tetracycline and metronidazol like I knew she would. She also wanted me to extend my gluten fast for another month so I could give my digestive system a rest. I have to admit, I feel better not eating wheat. I don't have the hard bloat in my tummy and I don't have gas. She also gave me the results of my blood work. My liver, kidneys, all ok. Just slightly hyperthyroid, but not worth treating at this time. The next result I could have gone the rest of my life never hearing. My CCP was over 250. She said she hadn't seen one that high in a long time. She said that it wasn't good. It means my RA is very aggressive and destructive. The RA Factor however was negative. Go figure. So she put me on 100mg of minocycline twice a day instead of the three day a week prescription. She wanted to hit the mycoplasmas pretty hard.
So I'm thinking this just gets worse. Lord you said You were going to heal me and things just get worse. This is shaking me up a little. But then I see that precious church sign on the way home that says, "In Christ Jesus the victory is won before the battle even begins". I already have the victory through Jesus Christ. Why am I whining about this? I'm not defeated. I will do what I have to do and keep my eyes on the prize.
I am starting week two with mino today and am feeling good. I had a little dizziness the first week. Kept walking like I was and old drunken sailor. Kind of like a reel. Stick one leg out for balance and around and around we go. But that is all gone now. I have no problems with nausea as long as I take the mino with food. I can have dairy again but I have to space it between dosages. I have some mild stiffness in the one finger that has always been the worst. But no swelling and no pain. There is the occasional tenderness in the big toe where it all started. But I have no fatigue or metho brain fog. I have no bloat and constant hunger from the pred. My round face is even gone and I recognize myself again. In fact, I've been pred free for three weeks and methotrexate free for a month.
Like I said, I take it one day at a time. Next I want to share with you the importance of a gluten free diet if you are even remotely gluten intolerant. If you are a true Celiac then it's very important to be gluten free if you have RA. There is a connection.
Dr K's nurse calls my husband, David, and me into a room. She spends the next half hour going over every detail of my health history and my family health history. She asked questions about things I forgot I had . Dr K came in all smiles. She starts looking at my history and asking questions. She seemed particularly interested in the ulcers I had some 20 years ago and the food poisoning I had last year. She said you only get ulcers from the H Pylori bacteria. That and the food poisoning were leading factors as to what type of antibiotic she was initially going to use. She believes that you hit the initial offending bacteria hard. Whether it be from your gut such as my case with H pylori, or strep, or staph or any other bacteria. Then after that bacteria has been blasted, she starts the minocycline. So she gave me two weeks worth of tetracycline and metronidazol to attack the H Pylori. She also asked me to fast gluten for 30 days. She had suspicions I might be gluten intolerant. After thirty days I was to eat a gluten meal and see what happens. Pretty full proof test. She went into great detail explaining what gluten free meant. Now for me, this was the worst news. I love my pasta and breads. How in the world am I ever going to eat out again? Oh well, ya do what ya gotta do. She then sent me for blood work. I was to come back in two weeks for a follow up. She told me that I was going to be pretty sick as the antibiotics start to do their job.
Well, she wasn't just whistlin Dixie! Let me tell you something, you go from feeling pretty good and eating anything you want, to feeling like you wished you were dead and not eating at all. I started the meds that Monday evening. By Wed I started getting nauseous. I mean from the time I woke up in the morning to the time I went to bed, I was nauseous. I had to eat to take the meds. What do I eat? I can't eat toast, it's got wheat. I can't have cereal, because she has me off of dairy because it affects the absorption of the antibiotics. No eggs, no cheese, no milk, no crackers. I tried Tapioca and Rice bread. Uh.....not on a nauseous stomach, not ever. So, one morning it was a corn tortilla. The next it was Van Camps pork and beans. There was fruit and then I found shredded potatoes. The potatoes sat the best. I had shredded in the morning and baked for lunch and dinner. I lost nine pounds in two weeks. I also developed chills that lasted a week and felt very fatigued. I just felt absolutely miserable. I wrote on my FB wall,"Just shoot me. Put me out of my misery". As bad as I felt, I was glad it was happening. It meant the antibiotics had found their target and we're destroying the buggers. I just had to hang in there.
I went to see DR K two weeks later. She took me off the tetracycline and metronidazol like I knew she would. She also wanted me to extend my gluten fast for another month so I could give my digestive system a rest. I have to admit, I feel better not eating wheat. I don't have the hard bloat in my tummy and I don't have gas. She also gave me the results of my blood work. My liver, kidneys, all ok. Just slightly hyperthyroid, but not worth treating at this time. The next result I could have gone the rest of my life never hearing. My CCP was over 250. She said she hadn't seen one that high in a long time. She said that it wasn't good. It means my RA is very aggressive and destructive. The RA Factor however was negative. Go figure. So she put me on 100mg of minocycline twice a day instead of the three day a week prescription. She wanted to hit the mycoplasmas pretty hard.
So I'm thinking this just gets worse. Lord you said You were going to heal me and things just get worse. This is shaking me up a little. But then I see that precious church sign on the way home that says, "In Christ Jesus the victory is won before the battle even begins". I already have the victory through Jesus Christ. Why am I whining about this? I'm not defeated. I will do what I have to do and keep my eyes on the prize.
I am starting week two with mino today and am feeling good. I had a little dizziness the first week. Kept walking like I was and old drunken sailor. Kind of like a reel. Stick one leg out for balance and around and around we go. But that is all gone now. I have no problems with nausea as long as I take the mino with food. I can have dairy again but I have to space it between dosages. I have some mild stiffness in the one finger that has always been the worst. But no swelling and no pain. There is the occasional tenderness in the big toe where it all started. But I have no fatigue or metho brain fog. I have no bloat and constant hunger from the pred. My round face is even gone and I recognize myself again. In fact, I've been pred free for three weeks and methotrexate free for a month.
Like I said, I take it one day at a time. Next I want to share with you the importance of a gluten free diet if you are even remotely gluten intolerant. If you are a true Celiac then it's very important to be gluten free if you have RA. There is a connection.
Saturday, April 3, 2010
Why AP?
I feel I need to elaborate on how I came to choose AP as my treatment. When I started having joint pain and swelling I wondered if it was "arthritis". I didn't know there were several types of arthritis. I knew basically nothing about it. I remembered a beautiful woman in church who had some kind of arthritis that had twisted her fingers and toes. I had hoped that wasn't what I had. I did a quick search of RA and thought, I don't think I have that. I prayed I didn't have that. So when the Rheumy told me he didn't think I had RA but Reiters Syndrome, I was walking on air. Reiters is temporary. Thank you God. That was before the blood work. The blood work said I did have RA. Xrays are good. A little osteo-arthritis in my right knee, but wrist and hand look good.
I wasn't too pleased with the blood results. Alright God, not good news, but I know I can do anything as long as I keep my faith in you. I took to my computer again and read as much about RA as I could. I got books about it. Then I started reading about the different drugs and drug cocktails used to treat the symptoms of RA. I read about their side effects. They were all toxic. We're not talking just a little nausea (which is bad enough) but serious issues with these drugs. Some may slow up the progression of the disease but none will stop it. People on the support group sites were sharing their trials with all these drugs. My heart was so heavy with grief for the young men and women and teens with RA. Each person's story, of any age, was so heartbreaking. There was so much pain and little to no relief. They were barely able to function. They were all going from one drug to the next trying to find the magic bullet. I will say they all are so brave and are to be admired for their courage in fighting this disease and working, going to school, taking care of children or living the retired life with their spouses. They don't give up, even when they feel they can't go another day.
I just felt so discouraged. I didn't want to poison my body and possibly induce other serious ailments. I didn't want to lose days or weeks of my life recovering from nasty side effects every time I took the med. I didn't want to go from one drug to another in hopes of finding one that worked or my body wouldn't reject. But then again, I didn't want to vegetate in bed or on the couch because I was in too much pain to move. I didn't want to lose the use of my hands, wrist, shoulders, or not be able to walk because of the pain in my knee. I was afraid if I didn't take the drugs and at least slow up the progression of it, I would lose joints altogether. I can't afford joint replacement. I felt like, if the RA doesn't put me in an early grave, the drugs will. A real Catch 22 situation.
God, what do I do? I'm so scared. This is the biggest trial of my life. Like I said before, I cried. I prayed a lot and still do. I just knew there had to be an alternative. I believe it was God who led me to The Roadback and AP. Having said that, there still was that fear of leaving the tried and true methods of treatment for something that isn't widely practiced. What if I'm not truly hearing from God? Well, He hooked me up with Leslie, who was researching AP too, and we discussed it a lot. In fact, we both go to the same AP doctor. It's not as scary to walk an unknown road when you have someone to walk it with you. As soon as I made the appointment, I had peace. It was the right thing to do. I still do believe it is the right thing to do. I believe this is the pathway God is using to my healing. I know He could heal me this instant if He wanted to, but for now, this is His plan and I praise Him for it.
I wasn't too pleased with the blood results. Alright God, not good news, but I know I can do anything as long as I keep my faith in you. I took to my computer again and read as much about RA as I could. I got books about it. Then I started reading about the different drugs and drug cocktails used to treat the symptoms of RA. I read about their side effects. They were all toxic. We're not talking just a little nausea (which is bad enough) but serious issues with these drugs. Some may slow up the progression of the disease but none will stop it. People on the support group sites were sharing their trials with all these drugs. My heart was so heavy with grief for the young men and women and teens with RA. Each person's story, of any age, was so heartbreaking. There was so much pain and little to no relief. They were barely able to function. They were all going from one drug to the next trying to find the magic bullet. I will say they all are so brave and are to be admired for their courage in fighting this disease and working, going to school, taking care of children or living the retired life with their spouses. They don't give up, even when they feel they can't go another day.
I just felt so discouraged. I didn't want to poison my body and possibly induce other serious ailments. I didn't want to lose days or weeks of my life recovering from nasty side effects every time I took the med. I didn't want to go from one drug to another in hopes of finding one that worked or my body wouldn't reject. But then again, I didn't want to vegetate in bed or on the couch because I was in too much pain to move. I didn't want to lose the use of my hands, wrist, shoulders, or not be able to walk because of the pain in my knee. I was afraid if I didn't take the drugs and at least slow up the progression of it, I would lose joints altogether. I can't afford joint replacement. I felt like, if the RA doesn't put me in an early grave, the drugs will. A real Catch 22 situation.
God, what do I do? I'm so scared. This is the biggest trial of my life. Like I said before, I cried. I prayed a lot and still do. I just knew there had to be an alternative. I believe it was God who led me to The Roadback and AP. Having said that, there still was that fear of leaving the tried and true methods of treatment for something that isn't widely practiced. What if I'm not truly hearing from God? Well, He hooked me up with Leslie, who was researching AP too, and we discussed it a lot. In fact, we both go to the same AP doctor. It's not as scary to walk an unknown road when you have someone to walk it with you. As soon as I made the appointment, I had peace. It was the right thing to do. I still do believe it is the right thing to do. I believe this is the pathway God is using to my healing. I know He could heal me this instant if He wanted to, but for now, this is His plan and I praise Him for it.
Friday, April 2, 2010
Antibiotic Protocol for RA
Why is my immine system attacking my body? It can't be for no reason. I had asked myself that many times. RA is an autoimmune disease. Why? What sets it off? On the Support Boards people would say they had been ill with mono or strep and had gotten RA shortly after. Some had had surgery and picked up infections in the hospital, later to only develop RA. There were even health care workers asking is there a connection to being exposed to bacteria and RA? Now all the research I read said genetics had a lot to do with who got RA. My maternal uncle has RA. But I wasn't satified that genetics was why my immune system decided to just go bezerk one day.
The Roadback site had the answer. At least as any logical one as I could see. Bacteria! The introduction of bacteria into the body causes the immune system to go into high gear to kill it off. Little buggers called mycoplasmas, something between bacteria and virus, getting into the body causing inflammation. I'm not going to get technical here. I'll leave that to people like my friend Leslie. She is a nurse and can tell you better than I how the mycoplasmas work. Her blog is www.southerngalra.blogspot.com. The Roadback site is very thorough in it's articles of how the buggers are introduced, and their realtionship to RA. I understand how it works, I just don't have the talent for sharing it in technical terms. It's a bug. My immune system hates it. The bug wants to thrive and infiltrate the cells of my body and destroy my joints and organs. How's that?
Alright, we have a cause. There really is something the immune system is fighting. Now what? I spent weeks researching everything there was on Antibiotic Protocol. I read the pros and cons. The more I read, the more the pros were outweighing the cons. I read of testimonies of people who are or have been on AP and what it has done for them. Dare I say some have had remission? Yes, they have!
It all started to make sense. I had e coli introduced through tainted food. This set off the chain of events that looked to be Reiters Sydrome. Then bloodwork showed positive for RA. Well let's just blast those little buggers with a little minocycline and see if there is improvement. Easier said than done. If you go to just about any discussion board on a support site, you will find many people who adamantly insist this AP is on the "fringes" for treatment of RA. Why? Because their doctor doesn't do it and doesn't recommend it. They won't read about all the tests and studies done on this therapy. I don't quite understand this reaction, but I think it's based mostly in fear and I understand that. I just wish they'd be a little kinder in expressing their views.
Like I said, most doctors won't consider AP. I called my Rheumy's office to ask if he did AP and never got an answer. I took that to mean he didn't and the fact that he never offered it to me as an option. No problemo, I'll contact Roadback and pray there is at least one doctor somewhere within a days drive. God in His goodness not only had one doctor but four, and all within 1 1/2 hrs from my house. So I chose Dr K who had an article posted on an arthritis site about how she had treated her mother with antibiotics. I called and got an appointment right away. Now I was excited because I had hope for the first time in a long time. Maybe I could get off these toxic drugs and go for the less harmful antibiotics and maybe put this bad boy RA into remission.
Monday morning and in the doctor's office, feeling good. By Wednesday, I'd be singing a different tune.
Thursday, April 1, 2010
Metho what?
The Rheumy I was seeing initially prescribed methotrexate and prednisone to treat what he thought was Reiters Syndrome. He is chinese, so it came out mesotresate. I had no clue what I was taking until I got the script filled and saw it printed out on the label. Oh, methotrexate. Now I can work with that. I went to my trusty five year old computer and "googled" methotrexate. Wow!10,987,777,777,777,777 hits or some such thing on metho. Let's just start at the first site. Hmmmm, don't like that one, next....hmmm not particularly liking that one either. Oooh, that one is even more specific. Not liking what I'm reading here. Ok, let's look at the handout that came with the script. AAAHHH, it's all bad. Cancer drug? Developed in the 40's? Makes your hair fall out? Nausea? Liver biopsies because it so hard on the liver? Something called methotrexate fog? Oh that's great, just what I need, to be in a fog. Oh here's a good one, can cause pulmonary fibrosis. Uh hello? I do need to breathe.
Then I started "googling" pred. Not any better there either. I especially didn't like the part about the prednisone induced diabetes. These drugs are poison. But then again I think most meds are. Some are just worse than others. I thought ok, I can do this. It's just short term. The Rheumy said Reiters is a temporary condition. I won't be on these drugs forever. Oh ignorance is bliss.
I started the pred and metho and felt like I could take on the world. Instant pain and stiffness relief from the pred. I could have become a pred junkie if I hadn't found out how bad it is long term for the body. Pred really is a love/hate relationship. Six weeks into the treatment I could have leaped tall buildings in a single bound, save one thing. I was having problems breathing. I was developing a dry cough and shortness of breath. There always felt like there was constriction in the airways. I felt like I had smoked way too many cigarettes. But I had given them up 22 years ago. I'll just file that in my mental symptom folder.
Second visit with the doctor. I tell him I'm feeling great. Now I'm thinking (how naive) he's going to stop the meds and send me home. We've told the immune system everything is ok and it can stop fighting that ecoli bug that hasn't been there for a year. The immune system has been relieved of duty. Well, NO! He increases the dose of metho and decreases the pred. Oh and by the way, my blood work tested positive for RA so I had to do two more tests to confirm it. Bummer. I go give more blood and go home.
Hmmm...index finger is starting to swell, but no real pain, just a little stiffness. The wrist is starting to protest when I overwork it. That stays pretty much the same even until this day. Breathing is getting worse. Back to the comp and Facebook. I search for an Arthritis support group. Wow, there's several. I try one and there are hundreds of RA sufferers. I start reading the comments and discussion boards. They are experiencing what I am experiencing. What a relief. I'm not losing my mind. There were many, many posts about methotrexate. The more I read the less I liked it. In fact the more I read about all the DMARDS and biologics the less I liked it. People were complaining, and rightfully so, that the side effects were too much. They had been on any number of drugs or cocktails of drugs that either had worked and then stopped, or didn't work at all. In the meantime, they are suffering from the RA and the side effects. There were the occasional positive effects of drugs working and for that I am truly happy for those individuals.
I received confirmation in the mail, in Jan., that I did indeed have RA. No call, just a letter. Good news, liver, kidneys and blood count were good. I was to continue decreasing the pred as scheduled during the last visit. The next visit wasn't for seven weeks. Now, you see, this changes things. This affliction is no longer temporary. It's FOREVER. The Rheumy said so in my last visit. He said if the tests were positive for RA, I would be on metho or something else FOREVER. Uh-UH, taint happening MaGee. I'm not taking this poison for the rest of my life. Nor any other toxic drug. There's got to be another way. There has got to be something they are missing in treatment. I was struck with being damned if you do and damned if you don't. If I don't take the meds to slow the progression of RA, I'll end up a cripple and tired all the time with any number of organ problems from my eyes to my heart. If I do take them I'll be damaging my liver, kidneys, possibly lungs and inducing diabetes. I'll be opening myself up to every infectious agent that is out there. I could develop leukemia or lung disease. My bones could become brittle and break with or without the meds. I mean really, what choices an RA sufferer has to make.
I know this epistle has gotten long, but bear with me. I went back to the FB support group and a woman with RA mentioned a website that she thought we might want to look at. It was www.roadback.org. Bingo! We have a winner! Finally someone is looking at the source of the problem for RA, not just treating the symptoms. Now I encourage you to go to this site and then do some more research on your own. Then we'll come back here and I'll tell you of my leap of faith into the treatment that is called.........Antibiotic Protocol.
Then I started "googling" pred. Not any better there either. I especially didn't like the part about the prednisone induced diabetes. These drugs are poison. But then again I think most meds are. Some are just worse than others. I thought ok, I can do this. It's just short term. The Rheumy said Reiters is a temporary condition. I won't be on these drugs forever. Oh ignorance is bliss.
I started the pred and metho and felt like I could take on the world. Instant pain and stiffness relief from the pred. I could have become a pred junkie if I hadn't found out how bad it is long term for the body. Pred really is a love/hate relationship. Six weeks into the treatment I could have leaped tall buildings in a single bound, save one thing. I was having problems breathing. I was developing a dry cough and shortness of breath. There always felt like there was constriction in the airways. I felt like I had smoked way too many cigarettes. But I had given them up 22 years ago. I'll just file that in my mental symptom folder.
Second visit with the doctor. I tell him I'm feeling great. Now I'm thinking (how naive) he's going to stop the meds and send me home. We've told the immune system everything is ok and it can stop fighting that ecoli bug that hasn't been there for a year. The immune system has been relieved of duty. Well, NO! He increases the dose of metho and decreases the pred. Oh and by the way, my blood work tested positive for RA so I had to do two more tests to confirm it. Bummer. I go give more blood and go home.
Hmmm...index finger is starting to swell, but no real pain, just a little stiffness. The wrist is starting to protest when I overwork it. That stays pretty much the same even until this day. Breathing is getting worse. Back to the comp and Facebook. I search for an Arthritis support group. Wow, there's several. I try one and there are hundreds of RA sufferers. I start reading the comments and discussion boards. They are experiencing what I am experiencing. What a relief. I'm not losing my mind. There were many, many posts about methotrexate. The more I read the less I liked it. In fact the more I read about all the DMARDS and biologics the less I liked it. People were complaining, and rightfully so, that the side effects were too much. They had been on any number of drugs or cocktails of drugs that either had worked and then stopped, or didn't work at all. In the meantime, they are suffering from the RA and the side effects. There were the occasional positive effects of drugs working and for that I am truly happy for those individuals.
I received confirmation in the mail, in Jan., that I did indeed have RA. No call, just a letter. Good news, liver, kidneys and blood count were good. I was to continue decreasing the pred as scheduled during the last visit. The next visit wasn't for seven weeks. Now, you see, this changes things. This affliction is no longer temporary. It's FOREVER. The Rheumy said so in my last visit. He said if the tests were positive for RA, I would be on metho or something else FOREVER. Uh-UH, taint happening MaGee. I'm not taking this poison for the rest of my life. Nor any other toxic drug. There's got to be another way. There has got to be something they are missing in treatment. I was struck with being damned if you do and damned if you don't. If I don't take the meds to slow the progression of RA, I'll end up a cripple and tired all the time with any number of organ problems from my eyes to my heart. If I do take them I'll be damaging my liver, kidneys, possibly lungs and inducing diabetes. I'll be opening myself up to every infectious agent that is out there. I could develop leukemia or lung disease. My bones could become brittle and break with or without the meds. I mean really, what choices an RA sufferer has to make.
I know this epistle has gotten long, but bear with me. I went back to the FB support group and a woman with RA mentioned a website that she thought we might want to look at. It was www.roadback.org. Bingo! We have a winner! Finally someone is looking at the source of the problem for RA, not just treating the symptoms. Now I encourage you to go to this site and then do some more research on your own. Then we'll come back here and I'll tell you of my leap of faith into the treatment that is called.........Antibiotic Protocol.
The Promise
Last summer is somewhat lost on me. I didn't know what was causing me so much pain and fatigue. I thought maybe arthritis, but the kind you get as you get older. You know, in places where you injured yourself or overworked areas. I knew very little about any kind of arthritis. I just lived my life as best as I could, always pushing myself to get things done. When I began noticing an uptick in symptoms, I did what I always do when I feel badly, went to the Lord in prayer.
I know God is going to heal me of RA. I have a promise. You may say, how could she possibly know that? I would have asked the same question 22 years ago, before I was a believer in Jesus Christ as Lord and Savior. I know that His Word, the Holy Bible, tells me that my healing was won for me on the Cross and I believe that. He and I have a history of prior healing, and that reminds me, if He has done it once He'll do it again. Now just to set this up for you, back in 2002 He healed me of sub scapular tendinitis. My shoulder was almost frozen and therapy was too painful. I took the tendinitis to the Lord and He gave me a dream that I could do windmills with both my arms. I knew He had healed me. It was just a matter of time. Within nine months I had total motion and no pain in my shoulder. It came from me lifting my arms in praise to Him. In the beginning I could barely lift my arm up or out. It hurt to move it at all. I did what I could to lift my arm in praise, and each week I could move it a little more. Then one day I stood at the altar and did windmills with my arms. I give Him praise! and thanks! for that healing.
On June 7, 1997 He healed me from a lifetime of migraines and night terrors. I was in a church service that night and received prayer for them both. I haven't had either since. I tell you this, because God has shown His mercy and desire to heal me. I know He wants me well. This is what I cling to when the fear creeps in or the pain starts up. With each bad report I get, I think ok, the worse it gets the more glory He receives when He heals me.
Last Sept 20th I was in church, physically hurting and just plain beaten. As I love music, the praise and worship time were particularly ministering to me. I don't know about you, believer or not, music just soothes the soul. For me, it's Gospel or worship music. Anyway, I started to feel a stirring in my soul and sensed the presence of the Holy Spirit. The words to the music were words of hope and healing. I knew, as I listened to those songs, that God was talking to me. He was once again telling me that He was going to heal me of my affliction. My daughter, Alicia, had been praying for me throughout the service. She told me afterwards that the Lord told her, "this too shall pass", meaning He will heal me like He has before. I have this as a promise, that I know He will fulfill in His time, just as He has before.
Now this may seem simple to some. In actuality, God's way is simple. It's simple faith, nothing complicated about it at all. It's our flesh that makes it complicated. I can tell you that even with this promise, I still at times grieve for what I used to be, what I used to be able to do. I get angry that this has happened to me and at myself for mistreating my body for all these years. I have cried over my thick hair falling out because of the methotrexate. I get discouraged when every report about the RA comes back worse than the one before it. That's when it starts getting complicated. My flesh is giving into the disease. It's at these times, my precious Lord is instantly there, like a loving Father and telling me He's still there. He sees the pain and fear and grief and He wants me to give them to Him. I cry, He dries the tears. I rant a little more and He stands by me patiently listening, never condemning me. I finally give all the pain, fear and grief to Him. Then He washes me in His peace. Oh what precious peace. All the weight of the RA is lifted and in it's place is joy. His word says that the joy of the Lord is my strength. He has given me His joy to live each day, one day at a time, looking toward the day that He fulfills His promise of healing for my body.
I know God is going to heal me of RA. I have a promise. You may say, how could she possibly know that? I would have asked the same question 22 years ago, before I was a believer in Jesus Christ as Lord and Savior. I know that His Word, the Holy Bible, tells me that my healing was won for me on the Cross and I believe that. He and I have a history of prior healing, and that reminds me, if He has done it once He'll do it again. Now just to set this up for you, back in 2002 He healed me of sub scapular tendinitis. My shoulder was almost frozen and therapy was too painful. I took the tendinitis to the Lord and He gave me a dream that I could do windmills with both my arms. I knew He had healed me. It was just a matter of time. Within nine months I had total motion and no pain in my shoulder. It came from me lifting my arms in praise to Him. In the beginning I could barely lift my arm up or out. It hurt to move it at all. I did what I could to lift my arm in praise, and each week I could move it a little more. Then one day I stood at the altar and did windmills with my arms. I give Him praise! and thanks! for that healing.
On June 7, 1997 He healed me from a lifetime of migraines and night terrors. I was in a church service that night and received prayer for them both. I haven't had either since. I tell you this, because God has shown His mercy and desire to heal me. I know He wants me well. This is what I cling to when the fear creeps in or the pain starts up. With each bad report I get, I think ok, the worse it gets the more glory He receives when He heals me.
Last Sept 20th I was in church, physically hurting and just plain beaten. As I love music, the praise and worship time were particularly ministering to me. I don't know about you, believer or not, music just soothes the soul. For me, it's Gospel or worship music. Anyway, I started to feel a stirring in my soul and sensed the presence of the Holy Spirit. The words to the music were words of hope and healing. I knew, as I listened to those songs, that God was talking to me. He was once again telling me that He was going to heal me of my affliction. My daughter, Alicia, had been praying for me throughout the service. She told me afterwards that the Lord told her, "this too shall pass", meaning He will heal me like He has before. I have this as a promise, that I know He will fulfill in His time, just as He has before.
Now this may seem simple to some. In actuality, God's way is simple. It's simple faith, nothing complicated about it at all. It's our flesh that makes it complicated. I can tell you that even with this promise, I still at times grieve for what I used to be, what I used to be able to do. I get angry that this has happened to me and at myself for mistreating my body for all these years. I have cried over my thick hair falling out because of the methotrexate. I get discouraged when every report about the RA comes back worse than the one before it. That's when it starts getting complicated. My flesh is giving into the disease. It's at these times, my precious Lord is instantly there, like a loving Father and telling me He's still there. He sees the pain and fear and grief and He wants me to give them to Him. I cry, He dries the tears. I rant a little more and He stands by me patiently listening, never condemning me. I finally give all the pain, fear and grief to Him. Then He washes me in His peace. Oh what precious peace. All the weight of the RA is lifted and in it's place is joy. His word says that the joy of the Lord is my strength. He has given me His joy to live each day, one day at a time, looking toward the day that He fulfills His promise of healing for my body.
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