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. ūüôā

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…

Image

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¬†‚ÄĚcures‚ÄĚ 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.

Good Riddance

The words below were in my inbox today.  Max Lucado wrote them.  He is one of many people that has provided inspiration in my life.

To Be Saved By Grace

‚ÄúGod gives us a free gift‚ÄĒlife forever in Christ Jesus our Lord.‚ÄĚ Romans 6:23 ¬†‚ÄúOne of the hardest things to do is to be saved by grace. There‚Äôs something in us that reacts to God‚Äôs free gift. We have some weird compulsion to create laws, systems, and regulations that will make us ‚Äúworthy‚ÄĚ of our gift. Why do we do that? The only reason I can figure is pride. To accept grace means to accept its necessity, and most folks don‚Äôt like to do that. To accept grace also means that one realizes his despair, and most people aren‚Äôt too keen on doing that either.”

I have been thinking a lot about the same thing in the past few days. ¬†The idea that my pride gets in the way of the cross–which for me represents what God has done for us and what He is going to do. ¬†I lose focus over things like pictures of babies with autoimmune rashes while looking for some semblance of my own rash, because I start to worry about my own children. Does anyone else worry that their children will have to deal with an autoimmune disease? And I read studies on pubmed that use words like mortality rate and RA, and I lose focus. But that’s where I get to see the pride because I realize–who am I to worry about what is in store for my children or when my time here is up? Am I so special that I should get to decide how long I stick around on this earth? You know? God loves me, but His ways and His plans are so much better. ¬†One day at a time is how I have been living lately, and it has been much more enjoyable that way. I enjoy the little moments and the little things a little more lately. Things like singing silly songs and making animal noises with my one year old, a french pressed cup of freshly ground organic coffee (oh yeah), time alone with my husband. Silly to think that I have fretted over the fact that I might not live to be 100 like I always hoped I would. That my days feel a little more numbered right now. Of course, I am hoping for a cure and I’m checking up on the latest things scientists and doctors are doing. But at this stage of the game, living to be a 100 is not looking too good. ¬†I would probably be such a mess anyway that I wouldn’t want to be alive!

As I drove somewhere this morning and was alone for the first time in the car in a while, I had a peace about exactly where I am at with my disease. My hands and my feet hurt terribly some days. But on other days, I get around ok. ¬†I always tell my kids when they express frustration over the fact that I am battling something that it’s ok that I am. It is. It’s ok. And when I stray from feeling that it’s ok, I know at least that I still have a way back-His Word. ¬†I am totally standing on His promise. ¬†And I have to remind myself of what is really going on and what is yet to come sometimes. ¬†It’s pretty exciting if you stop and think about it. ¬†And boy what a relief to think about it.

My rash is spreading and changing colors. ¬†Really need to take some pictures of it. Still doesn’t itch, but it is crazy looking. Discovering that skin rashes are common with JRA and Still’s disease. ¬†Was not too familiar with Still’s disease until recently after digging around for pictures of other peoples’ rashes (which led to pictures of little ones). ¬†Along with lots of digging and researching, I have been doing a lot of blog hopping. Thank you bloggers for having blog rolls. ¬†I read ¬†about Southern Gal with RA and her experience trying an antibiotic protocol. ¬†I thought, hmmm, I’ve heard of this–why have I never really looked into it? I followed up with research about AP, and then with the Roadback Foundation. If I recall correctly, Southern Gal has to travel three hours to see a doctor that will prescribe an antibiotic protocol for her patients. That just stinks. I contacted the Roadback Foundation to obtain doctor references for my state and told them that I was willing to travel (they said to mention whether you were or not). ¬†I got a reply the same day–this was yesterday. ¬†There is one doctor in my city on the list. ¬†The other doctors are hours away. ¬†The e-mail said that I should contact the doctor to find out if they are still prescribing AP. ¬†I quickly did a search on the doctor and discovered that he is 8 miles from my house. Wow. ¬†Hello. ¬†Feeling a God thing happening here. He is right under my nose. ¬†Just down the street. I read reviews about him on various doctor rating sites and they are great. ¬†(Love the internet for info.!) He is in his sixties and has his name on several research studies, and the reviewers said he was unhurried and his protocols worked for them. ¬†Nice.

Today, I called my current rheumatology office to follow up with a call I made to the office manager two days ago. ¬†I decided to call and speak with the office manager instead of writing a letter about switching doctors. ¬†Thought it might prove quicker. I poured my heart out to this woman named Helen (while fighting tears–hate it when that happens) and explained how my doctor had basically been a big jerk and made my life more difficult and was there anything she could do to get me an appointment with the “nice” doctor. She thanked me for sharing my story and said she would talk with both doctors to see what she could do¬†and would get back to me. Didn’t hear from her yesterday and since I am not getting better and it takes a while to get in with a new doctor, I decided to follow up and call her this morning. She said the “nice” doctor said he is sticking by the office policy and I won’t be able to switch doctors. ¬†I asked her what my current doctor said in regard to not signing my handicap placard form. She said that the state is really coming down hard on physicians for disability claims and things like handicap placards. Are you kidding me? I said, “If you knew me, you would know I was once very active and have been healthy most of my life. And asking for a placard was not easy.” ¬†She said, “I don’t doubt that, but the physicians have to be careful these days.” Then I asked her what I needed to do to get my records. I am going in tomorrow between noon and one PM to pick them up. What a pain. But can you believe that I just acquired the name of another rheumatologist that is right down the street? I was looking at rheumatologists online the other day and it was a bit overwhelming to think that I might have to narrow it down to one and start all over.

So, good riddance to my old rheumatologist. Feels good! Can’t wait to get my file and see everything my doctor has written about me. This is going to be great! ¬†I wish my doctor the best, but I hope he at least learns a little something from this in regard to how you treat your patients. But as my husband pointed out–they aren’t hurting for business.

I then called the new rheumatology office. I know this place is older and does not have a fancy infusion center like my other doctor’s office. They don’t have a website either. The other office did. But the staff was much more pleasant and I was able to speak with the doctor’s nurse right away. Awesome. I told her that I was not an established patient and asked her if the doctor still prescribed AP. She asked who referred me and I told her that I was given his name by the Roadback Foundation. ¬†She said, “It’s a foundation? And what is it–AT?” I’m thinking she is not aware of AP. She got back to me today. I told her that I never got a call back on the same day before and thanked her. She said that the doctor told her to tell me to keep my new appointment with him (first available was August 3—which stinks) and to bring everything with me that is part of my current protocol. I’m liking this guy already. My old doctor could have cared less about anything I’m taking because nothing I was taking regularly was a pharmaceutical. Whenever I would tell him about what I was doing or what type of exercise I was engaging in he would kind of smirk and type on his laptop. ¬†I told my husband that I have between now and August 3 to really work on weaning my son. Cue the water works. I know it’s time. I want to be ready, or at least close to being ready to try the drug route when I see this new doctor.

Praying for my sisters and brothers.