AP Diary Part Two

I have enjoyed close to a year and five months of being pharmaceutical free. Glorious. Joy beyond words. I got a great part of my life back. During the nine months on my antibiotic protocol approach prior to this, I experienced a return of function to joints that were frozen, extremely painful and swollen. My body responded exactly as those that had gone before me with the approach said it would. It got a lot worse before it got better. New joints swelled, my butt got kicked with fatigue and my mind was extremely cloudy. It was a very rough ride. But slowly, ever so subtly, swelling disappeared, I regained movement in the frozen joints and my mind became sharp and clear again. It was really amazing and I am glad I took the leap with this approach. If I hadn’t, this would have never gotten done. 🙂

Bacteria is a resilient monster. It dodges and ducks and morphs in ways that blow my mind. So, I knew the possibility of another long round with antibiotics could be a part of my future. I hoped not. Of course. But always knew I might have to keep the battle going.

Enter my baby toe…

I tried to ignore it. But squeezing it into a shoe is an uncomfortable reminder that something is having it’s way with you. Then there was the arrival of a double ear infection and a sore throat. A sign to me that the bacteria was back at work. I was plagued with frequent ear infections right up until my long run with the antibiotics and had not experienced one since I began the protocol. So the painful arrival of a double one with the throat along for the ride got my attention. What followed was a two week long headache. I’ve never experienced anything like it. I woke up with it and went to bed with it.

I had a follow up with my rheumatologist this week. I told him about the recent activity–right ankle is feeling bursts of fire, but not swollen, base of spine is acting up again and shooting pain down my rear, wrist and thumb on left hand, and let’s not forget my baby toe. They all started a party around the same time. I still function pretty fabulously and I can tolerate the pain. Praise God. But I had a nagging feeling, I better bring in the big guns.

My doctor is used to me not asking for drugs. I just check in with him every three months and have blood work done, which is normal across the board as of three months ago. Anxious to get this week’s results back. But this time I asked him what his thoughts were about me giving antibiotics another go. There was no hesitation and before I knew it I was walking out with a prescription. It took a couple of days before I filled the prescription. I read over my AP diary, prayed and spent time in the Word of God. I also had to work through my panic over trying an antibiotic in the tetracycline family this time–minocycline–since I had a severe allergic reaction to tetracycline itself in seventh grade. I will never forget shivering under an electric blanket on high due to a high fever and being covered head to toe in a rash that itched to kingdom come.

I just took my second antibiotic and hope to again keep up with how my body responds in my AP diary. It was really helpful to be able to read through again and hopefully it will be helpful for anyone that wants to follow this approach. There seems to be a great deal of skepticism among autoimmune bloggers over this approach. And to be very honest, my feelings were hurt by a fellow blogger that posted this:

“With RA, some of the ”cures” most frequently recommended by people with no medical credentials are”

Gin-soaked raisins
Antibiotic protocol (Road Back)
Marshall protocol
Treatment for Chronic Lyme Disease
Cider Vinegar
Honey
Copper Bracelets
Bee Stings
Certo Pectin
Magnets
Diet

Did you catch it? My bacteria butt kicking approach that gave me back the function of my body got listed with honey and magnets. Ouch. It hurt and saddened me that a large readership might be turned off to even investigating the approach. This approach is, however, recommended by several doctor with medical credentials.

And in case you are interested…

The following is taken from a lecture by the rheumatologist who pioneered antibiotic therapy, the late Thomas McPherson Brown, M.D., spoken at the Huntsville, Alabama Family Practice Center.

Tips on Starting Antibiotic Therapy*

Hypersensitivity/autoimmune states are infectious in origin; thus, suppres-sion of the antigenic source causing the patient’s hypersensitivity state is the focus and framework for treatment.

* The treatment goal is direct suppression of antigen (in early disease) or suppression of antigen mimicry through tying up receptor sites (late disease / auto-immunity) with a dose of medication low enough to avoid exacerbation of the hypersensitivity state.

* A probing patient history may reveal a triggering event such as an injury, chemical sensitivity or illness. Finding such a trigger may provide information on a contributing antigenic source. Testing for organisms can be helpful in confirming the involvement of a pathogen in the disease process.

* Apparently unrelated infections such as dental problems and sinus infection complicate the antigen pool and compromise an already stressed immune system.

* A second infection can be a cofactor in the disease and an additional source of antigen: e.g. strep, chlamydia, candida, or chronic sinus or bladder infections. Treat focal infections first or concurrently.

* A washout period of several weeks to a month prior to beginning antibiotic therapy is preferable; however not all patients will be able to tolerate such a step. In those who opt for the washout, low dose prednisone may be used temporarily to help control inflammation and pain medications can help keep pain to a manageable level.

* Pursue treatment long enough (in early disease) to eventually suppress antigen formation or to interrupt chronic process (in late disease) to allow the host’s immune system to dominate.

* Long term disease may require lifetime treatment.

* Treatment histories of >20-30 years currently exist with disease control and no negative side effects from the antibiotics

* Patients need to maintain a healthy life style with balanced meals, exercise, active stress reduction and adequate sleep in order to support the immune system.

* Vitamins and supplements which strengthen the immune system are helpful.

* Daily NSAIDs are necessary to suppress inflammation and increase the effectiveness of the antibiotic by allowing it to penetrate the inflammatory barrier.

* Acidophilus supplements will help maintain a normal bowel flora and counter an overgrowth of candida.

* To strengthen muscles and increase joint stability, rehabilitation should begin as soon as the disease shows signs of quieting, also decreasing the chances of joint disfigurement.Massage may be begun immediately to relieve trigger points in soft tissue adjacent to irritated joints, to retard contractures and provide pain relief.

* Treatment response is generally slow and subtle although some patients see an immediate lessening of pain. Six months to a year is not an unusual time required for significant improvement.

* It is not unusual to see a preliminary worsening (Herxheimer reaction) when antibiotics are begun or when treat-ment adjustments are made. The severity of the reaction is usually dose related. Although uncomfortable, this reaction is a sign the offending organism is being reached and is a good sign.

* Laboratory parameters can improve before clinical improvement is seen or vice versa. Treatment of an infection with antibiotic therapy is supported by fall a in RF and acute phase reactants.

* Depression, memory loss and mood swings are symptoms of the disease, possibly due to accumulation of antigen.

* Some generics are ineffective; brand names are more costly but strongly recommended. Adding d.a.w. to the prescription will insure the patient receives the brand name of the drug.

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.”