Hi ya'all from sunny, hot, hot, hot, East Texas. I have survived, by the grace of God, one bad herx or flare or both. It was not easy. In fact, it got down right scary. Now most people might say that having my jaw freeze up is a blessing in disguise. You know, "silence is golden", but it scared me. Let me start where we left off.

I had started the mino in April and had continued a herx that began with the tetracycline and flagil that I had taken two weeks prior. The dr had done blood work that showed my CCP was off the charts. So she had started me on 200mg of minocycline everyday. I just pictured all those little buggers (mycoplasmas) going berserk in my body. I knew there was a massive kill off.

Unfortunately the pain, stiffness and swelling began to effect my entire body. My hands were useless. My shoulders were so bad that I couldn't dress myself or get out of bed without help. My wrist was swollen and in so much pain. I walked like an old lady because my feet were killing me. I was taking up to three darvocet a night to sleep because of my shoulders. I couldn't pull the sheet up on myself if I got cold. The final straw was when my jaw froze up. I couldn't hardly open it enough to get a fork in my mouth. Now some my take this moment to think, ah but think of the weight you could lose. If I got the fork in my mouth, then I couldn't really chew because I couldn't bite down. What a mess!

That's when I started researching again. Thank God for computers and the Roadback.org site. Also for my FB friend and fellow blogger Southerngal (Leslie) for her researched thoughts on the matter. To make a long story short, (yeah right) I stopped the mino for two weeks to give my body a break from the die off of mycoplasmas and stop the herx. I started the pred again to get the inflammation under control. I started going to an infrared sauna with my daughter twice a week to sweat out those toxins caused by the dying mycoplasmas, only to find out that the heat kills those buggers too. Let me tell you, you haven't lived until you have sat in a box with the temp at 140 degrees for 30 minutes and sweated like a yard sprinkler. I will say the heat makes my joints most happy.

I felt improvement of course immediately, mostly because of the pred, but oh what blessed relief. I was on the pred over a six week period so I could wean off of it so as not to cause a flare. I started taking the DHEA again after weaning off the pred, right away, to help the steroid levels stay up in my body. When I started taking the mino again, I took only 100mg three days a week. After a week of that I increased it to 200mg three days a week. I wasn't herxing so I took 100 mg once a day. Did well with that, so I went back to the original script of 200mg every day. No herx, no flare.

Now you may be asking yourself, "Did she have her dr's permission for all this?" No, I didn't. I was led by the Lord, pure and simple. Isaiah 11:2 tells us, " The Spirit of the Lord shall rest upon Him, the Spirit of wisdom and understanding, the Spirit of counsel and might, the Spirit of knowledge and of the fear of the Lord." Now with that all available to me, why shouldn't I use it? I mean, what better counsel than the Holy Spirit? What better wisdom than His? He certainly knows all things and He is mighty enough to help me overcome it all. So I availed myself of His guidance and it paid off big time.

I just had my third visit with the doctor and she was well pleased with my progress. I have to say I am too. I have some soreness in the knuckles of my hands but my fingers remain nimble and pain free. My wrist is 98% improved. My shoulders are great accept when I over use them in the yard. I've learned to be kinder to my body and don't work it like I used to. No knee problems at all. My jaw is perfect. Overall I'm very pleased with the way things are going on the Antibiotic Protocol. My energy levels fluctuate. A vitamin B complex sub lingual seems to help me in that department.

I won't tell you that you should do what I did. Not everyone can scrap the dr's orders for a month or six weeks and devise their own plan of action. I did, but I was led of the Lord and it was Him working through me that made it work. I used to be one of these people that says whatever the dr says is gospel and don't deviate. But I have learned that RA is as personal as one can get. It's effects seem to be different with everyone. So, I think the treatment needs to be that personal and not one size fits all.

This is my therapy: 200mg of minocycline a day
250 mg of magnesium a day
50 mg of DHEA a day dr prescribed but can get otc
12 billion micro-organisms a day (probiotic)
3000-4000 mg of fish oil a day
500 mg of MSM with 5oo mg of glucosamine three times a day
5000 mcg of biotin a day

I don't need nsaids at all. I'm off the prilosec for my stomach. I take the biotin to help restore the hair I lost on the methotrexate. It's working too. You should see the little bangs I'm growing in where I had thinning. If it's growing there, then I know it's coming in all over the rest of my head. It's also coming back on my arms and eyebrows.

Starting AP was easy. Living with the results....not so easy, at first. By tweaking it here and there, it has given me a treatment that is working without the nasty side effects that come with using the standard RA drugs. I have a clear mind (some may argue that). I have a happy stomach, and more energy. My joints are doing very well. I will have blood work done again in November. I believe that the CCP will have dropped considerably. Time will tell.

In the meantime, I have most of my old life back. I am involved in my church, picking up my granddaughters, camping, gardening, staying up late if I want to, getting dressed by myself, and cooking. I won't say it's all a bed of roses because it's not. I still have days with no energy, but they are fewer. I still have stiffness in my index fingers, but only if I over do it. The tops of my knuckles seem to be the only thing that is a constant reminder I have RA. I am on the road to recovery by the grace of God.

Apologies

I see that I haven't blogged since April. I can't say with surety why, other than life got in the way. I have received some comments on past posts and just now saw them. I apologize to those folks for not getting back to them until now. I so appreciate everyone who comes by to read my ramblings and your comments bless me. I haven't figured out how to get the blog to notify me when someone comments. I know it's probably quite the simple thing, but I haven't found it yet. Can anyone direct me on how to receive notifications from my blog?

Ok, let's get this blog rolling again.

Turn Your Eyes

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.

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?

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.

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.

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.