Out With the Old, In With the New!

I am SO thankful that I have a new rheumatologist and sometimes ask myself why in the world I even debated sticking with my old one. It must have been the brain fog from my illness causing the lack of clarity. Thank God I decided to embark on an antibiotic protocol. Because it led me to seek out a new rheumatologist–one experienced and willing to prescribe antibiotics for my disease. Let’s compare and contrast my doctors, shall we?

Old doctor never suggested supplements of ANY kind to naturally support my misbehaving body. He used to make me feel like an all natural freak for taking anything that didn’t require a prescription. New doc has mentioned at all three of the appointments I’ve had with him to be sure and supplement with fish oil. Lovin’ this guy. Old doc told me at my first appointment that at least these days, compared to the eighties, there are drugs keeping people out of wheel chairs. New doc told me at my first appointment that he was going to do everything he could to help me feel better. Really lovin’ this guy. Old doc use to smirk whenever I told him that I was trying to stay active as best I could and was also working with a Doctor of Naturopathy. New doc said that I’m doing all the right things. Old doctor never met with me for more than fifteen minutes and never did a complete exam on me. Was he nervous about touching me, or what? New doc spent almost an hour with me at my first appointment and did a complete exam. This is the way it should be! Old doc had a nurse that was just plain rude. Despite the fact that I usually felt like junk when I went in for my appointments and did not enjoy being there, I smiled and made eye contact was down right pleasant. Response–none. She would barely crack a smile, never gave me my vitals (always had to ask if I had a pulse!) and did not appreciate my attempts at friendliness. New doc’s nurse is a pure delight. She opens the door and calls your name with a smile. She is pleasant and asks me how I am doing and engages in conversation with me. After checking my blood pressure at my last appointment, she told me my numbers were low and said I must be cold. And here’s the best part–she reached for something in the cupboard and handed me a cozy blanket. Love her! I could go on. But you get the idea. Out with the old, in the with the new!

When I met with my new rheumatologist I brought my records from my old doc–errors and all. I didn’t tell him why I left my old rheumatologist, but told him up front that I was interested in trying an antibiotic protocol. I asked him if he had read Dr. Brown’s book The Road Back (found within the book The New Arthritis Breakthrough). He said that he had not. Definitely not the answer I was looking for. However, I decided that if he was willing to put me on an antibiotic protocol, I was willing to trust his plan of attack. I had a peace about it–a first for me with a doctor.

By the sheer grace of God, I weaned my little guy just days before my appointment. When I set out to do this and got knee deep into the process, I really, truly did not think it would happen in time for my first appointment. And then, it did. And baby and I survived. And he still loves me all the same. The timing still amazes me. So, I was ready and able for the first time in over a year to start on med.s.

The day after I began antibiotics (rifampin and azithromycin–almost two months ago), I knew that something was seriously at work. Can you say pain?! According to many of those who have gone through AP therapy and have come out successfully on the other side, this is a sign that the antibiotics are doing what they are supposed to. And that is, attacking the mycoplasmas that have taken up camp in your body and caused so much damage to occur. Reading testimonials on the Road Back Foundation and connecting with others on their message board has been extremely encouraging. What an outstanding group of people I have encountered on that site. If you have questions, concerns, fears, etc., people on the board are quick to offer encouragement and insight.

The last two months of my trip, on what I am hoping and praying will be the road back, have been slightly scenic at best and rocky four wheelin’ territory at worst. I’ll spare you the gory details here, but if you want to read more you can here. I will say that I have seen some progress and have also experienced setbacks. But any progress is glorious. Glorious, I say! I work out in my home with a close friend that is a personal trainer every week. She knows my limitations probably better than anyone. Before my body started misbehaving we worked out together in a kick boxing class at a karate school a few days a week. So, she also knows what I am capable of and knows that I will push myself past the limit (pre-disease) to get in an awesome, butt kicking workout. She has seen me lose the ability to bend my left wrist and put any pressure on it to do even one push-up. But I can do push-ups now! Can you say awesome? And I can do them straight out of bed in the morning. No morning stiffness. I’ve also experienced days that have allowed me to get around a lot better on my feet. Still hurt, oh yes, but I can cover more ground with less pain and inflammation. And something remarkable occurred after a few weeks on antibiotics. I felt like I got my brain back. I can think clearly now. I can focus on a task and see it through. I was at a point before where I struggled terribly to follow a recipe. I lost my train of thought in conversations all the time. I felt like an idiot! And I’m no dummy. I feel like a switch has been flipped and I’m back. Feels incredible! I am also able to touch a finger to my palm that I never thought would be able to bend completely ever again. But there are also days that have been simply awful due to the increases in pain and swelling. I just want to cry, and do. I hurt all over, I get grumpy and tired of putting on a happy face and looking like everything is o.k.–because it isn’t! I doubt the approach, I feel distant from God and I get irritated with every runner I see bouncing along the road. These feelings don’t usually last very long, but do rear their ugly head from time to time when the pain rears the other ugly head.

Days like this force me to humble myself and remind myself yet AGAIN that what I am struggling with is not just about me. It’s just too easy to bust out the party hats and streamers and throw myself a pity party every now and then. This morning I had to ask myself if I’ve grown much lately as a Christian in light of my illness. Or have I become stagnant? Because He never promised that being made into His likeness would be a walk in the park. And I should be pretty excited that he chose me to confront this pain head on. His word promises that He will never give us more than we can handle and He is refining us like a precious metal for a beautiful future with Him. Despite what I know He has said in His Word and what He has promised–I know that I have a lot of spiritual growing up still to do.

And now I must tell you that I have a new diagnosis. So long seronegative RA. Say hello to her ugly step sister that tries to look just like her. I made the discovery just recently and my rheumatologist confirmed it at my last appointment in light of a new symptom that I have been–uh, um, blessed with shall I say?  More to follow soon, I promise. I have a post in the works with some lovely photos.

John 14:27 (NLT)

“I am leaving you with a gift–peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.”

The Price We Pay

I picked up my medical records from my former rheumatologist. Funny, they gave me an hour window to come in and pick them up. Turns out it was during lunch when there were zero patients in the waiting room. When I arrived at the office, my records were not ready and the woman up front disappeared while my four boys and I sat and waited and they did what they needed to do to get them ready. While we were waiting, my doctor walked by behind the front desk area. What are the chances of that? I would have loved to have been able to talk with him.

I love having copies of my records in my possession. LOVE it! So much is missing in my doctor’s notes. No mention of family history and allergies and nothing specific about the supplements I take consistently. Also said I was taking 5 mg of prednisone a day and that is so not the case. I tried the steroid route. Helps temporarily and then the pain comes screaming back. No thank you. Would rather deal with the pain minus steroids if I can get away with it. I remember him recommending that I take 5 mg maintenance dose. But in his notes it clearly says I have been doing that for some time.

My rash has completely disappeared without the assistance of anything pharmaceutical. Maybe the disease playing peek-a-boo. I finished the lymph cleanse and have continued to dry brush my skin to stimulate the lymph system. There was a study mentioned in a book I recently read about RA patients improving when their lymph system was drained. As soon as tube was removed, their symptoms increased again. I find this very interesting. I had my husband take a couple pictures of my rash while it was visible. I showed my eleven year old the pictures on my camera and asked him if I should put them on my blog. He said, “No way. It looks gross.” It almost kept me from posting a picture at all. I am going to print the pictures to take to my new rheumatologist in August. No rheumatologist ever saw my rash. My dermotolgist did, however. She also took pictures. Here it is. Lovely, huh? It was all over my breasts too. I looked like a strange Star Wars character in person. The rash was only on the front of my trunk, not the back. It disappeared gradually, just as it appeared.

Close up shot of a section of my trunk.

I have hope for the first time in a while in relation to my disease. I’ve had a certain peace about the fact that my body was being attacked little by little for a while. I am not happy about losing function and being limited. But I’m handling it well because now I feel hope in addition to that peace. It is such a good feeling. Feels dangerous too though. There is the part of me that doesn’t want to get hopes up only to have them dashed. But if AP therapy does not offer much relief or management of my disease, then I will just have to go from there.

The hope I feel now is due to a book I recently read–The New Arthritis Breakthrough by Henry Scammell. Within this book is the book written by Dr. Thomas McPherson Brown (pioneer of AP therapy), The Road Back, Rheumatoid Arthritis: Its Cause and Its Treatment. It’s fascinating, folks. I think it is an incredible read if you are either battling autoimmunity or know someone that is. The Road Back talks about the science behind the approach and the thousands that benefited from it. It speaks of the depression that many people feel (but don’t talk about) and how difficult it is to keep that to yourself at times because you get tired of telling people you are in pain. (And quite frankly, I’m sure they get tired of hearing about it.) I know for me–if I don’t talk about the pain every now and then, I’ll blow. We have to talk to someone sometimes. It’s a human thing.

I think this book is worth reading simply for the knowledge that can be gathered from it. I gobbled the book up. While I read it, I dog eared it like crazy and now I am going back through it and highlighting sections. I have to ask why AP therapy was never mentioned as a treatment option for me? My rheumatologist offered various drugs, but never antibiotics. The Arthritis Foundation has acknowledged that antibiotics can be an effective DMARD. American College of Rheumatology recognizes minocycline as a DMARD as well. The patient accounts from Dr. Brown’s book (he treated 10,000 patients successfully with AP therapy) and the current patient surveys taken by The Road Back Foundation further show the benefits AP can have for many. So, again, why are antibiotics never mentioned as an option? (I suspect the drug companies have a hand in this since antibiotics are inexpensive.)

I called Joe on air to ask him about AP and he said that I should go for it considering I am looking at either the methotrexate or Humira route–which is where I was headed once I weaned my little guy. Joe went on to confirm what I have found in my research–that there are legitimate cases documented of people benefitting from AP therapy. The experience that I’ve had with my disease and the history of illnesses that I have had in my lifetime are reflected in the patient accounts in the book from people that have improved with AP.

This is why I have felt hope. Hope that with trial and error and antibiotics, I may be able to reduce the disease activity in my body and manage my pain better. The interesting thing about AP therapy and my situation is that the class of antibiotics found to be the safest and most effective is the tetracycline class. I had a crazy reaction to tetracycline in seventh grade. There is a sticker on the front of my medical records from when I was a child that says “Allergic to Tetracycline”.  I developed a 104 degree fever and a rash that covered my trunk. Interesting wouldn’t you say? This rash itched to kingdom come though–unlike my recent one. The symptoms would go away when the drug was removed and return when the drug was reintroduced. I have to wonder now after reading The Road Back, was it an allergic reaction to the drug or was my body killing off something extremely toxic to cause that kind of a reaction? Something so toxic that it could one day cause joint deformity and pain throughout my body? Perhaps. Will be interesting to see what happens if I begin taking an antibiotic within the tetracycline family. At least I have a few options to play with.

I recently received a call from my dermatologist. She is a popular doctor and is always booked solid. After she saw my crazy rash and the patch test and biopsy came back revealing nothing conclusive (big surprise) she asked if she could bring my file before a group of dermatologists in the city that meet monthly. I said, “Sure.” She called me at home the other day to tell me that they discussed my case and concluded that it could be anything from a bacterial fungus to cancer. Well, that helps. All that education and thousands of dollars between them and that’s what they come up with? I told her that I had recently read about AP therapy. She said she would be willing to prescribe minocycline for me. Told her I was seeing a new rheumatologist and would keep her posted. Good to know that I have another doctor in the picture that is willing to work with me and the AP route.

I am not doing so great with the weaning of my little guy in preparation for this. Knowledge really stinks sometimes. I transferred my other three boys to organic cows milk without a concern in the world, and they are very healthy kids with zero allergies. But now I know too much about dairy and it’s effect on our bodies. I am reluctant to introduce cow’s milk now. I tried goat’s milk with my little guy because it is much easier for the body to digest. He made an audible gagging sound after he drank it. It was hard not to laugh. And this little guy likes to eat everything. I’m a mess though and someone is going to be drinking cow’s milk starting tomorrow to put the weaning pedal to the metal. Fortunately, I have access to raw, organic milk from grass fed local cows through my farmer’s market. But that isn’t until Sunday.

Happy Baby!

Blessings to you!