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.
Tuesday, August 24, 2010
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But by the Grace of God I go....
ReplyDeleteInstinct plays a HUGE part in our treatment and care. After a while you can see how the doctor is going to treat a particular thing. But as a rule, just make sure "first do no harm". No preaching from me, just wise counsel. If it works for you, brava!! Hugs. Tammy
First let me thank you for coming by Tammy. I understand what you are saying and would agree. But what you call instinct I call counsel from the Holy Spirit. I try to be led by the Lord in all I do, especially concerning my RA. I did some serious praying before I left my former Rheumatologist to try an unconventional treatment with a family practitioner who takes a wholistic approach to medicine. Everything about this walk has been done by faith, not instinct. I know to some that's going to sound real simplistic and illogical, but God's wisdom far surpasses that of man.
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