Science and the Scleroderma Girl: The AP Therapy Rant

Antibiotic Protocol is an alternative medicine therapy for autoimmune disease. It certainly has a following. Check this out.  There is more information on it at the Arthritis Foundation. It seems to be loosely associated with “Leaky Gut” as it links chronic autoimmune illness to microbial sources originating in our intestines. The shaky model and vague language involved in leaky gut has landed it on the pseudoscience list at Wikipedia.

This has been a really hard post to put together. I have all these little memories and reactions rolling around in my mind, and I struggle to link them together in a meaningful way. Here are some of the things that have happened and my gut reaction (did you see what I did there?) to them:

  • I have a friend with lupus. She has been struggling for years, is on disability, and is clearly in trouble. She is losing weight, her hair is falling out; she is in the care of a nutritionist who has her on severe dietary restrictions and antibiotics to treat her condition. She eats no dairy, gluten, meat, alcohol, or sugar, and continues to take her antibiotics without fail. She is not getting better. My heart breaks every time I see her.
  • My dermatologist placed me on doxycycline (one of the antibiotics used to treat scleroderma in AP Therapy) right after my diagnosis. A year later my lung disease was moving so quickly that I was actually referred to palliative care. I stopped the doxycycline, my rheumatologist boosted the immunosuppressive drug dose,  I was given a new drug for my vascular disease, these new drugs kicked in, and today my lungs look great. Good bye, palliative care!
  • I visit an online support group for scleroderma patients where some people are just devoted to antibiotic therapy. They can be very aggressive in promoting their message and have even private messaged me trying to convince me to switch treatment protocols. Huh? This is kind of extreme. I’m always wary of fanatics because it is more about “winning” and gaining converts…
  • Cat face.
    The Mother of Cats has an active early warning system for fanatics. There is no evidence on Earth that will change their minds…

    So, I already have my back up about AP Therapy. The diagnostic antibodies that I have are to a specific region on my chromosomes (centromeres and kinetochores) that is involved in cell division. Bacteria have their genetic machinery organized very differently from me; why would the defining antibody in my illness be towards an antigen not found in bacteria? (Goodbye leaky gut… it was nice to know you!) That doesn’t mean that I can’t have the medical condition of increased intestinal permeability; correlation doesn’t necessarily mean causation. It also doesn’t mean that antibiotic use doesn’t help some people as the drugs also have anti-inflammatory and cartilage protecting properties, and there is research that shows it helps some patients with rheumatoid arthritis.

Here’s the deal: there are better drugs and treatment options. If you have a mild form of the disease, maybe AP Therapy is what you need. On the other hand, systemic sclerosis is a potentially fatal disease and if it is advancing rapidly the correct response is to go big: use the drugs that have the highest success rate. I feel like I’m a walking poster child for the success of current treatment options. The three drug cocktail (Myfortic, Plaquenil, Losartan)that my doctors are maintaining me on has reversed my lung and heart damage.

Crap, do I sound like a fanatic? Darn. I was worried that this would happen.

I told you, this is a hard post to write. Let me just say I would never, never PM someone insisting that they need to change their treatment plan. Who am I to project my reality onto another person?

What I really mean to say is to think like a scientist: collect data, keep a symptom log, ask questions, assemble a team of doctors to help you, and pursue treatment options that have solid research-backed results that you are comfortable with. Keep collecting data, and don’t be afraid to change if things aren’t going well. There is no best one-size-fits-all treatment plan, but play the odds that are the highest until you get better information. If what you are doing is working, keep going!!

Tomorrow is World Scleroderma Day.

This is a hard, hard disease. All of us with this disease face hard choices.

Hugs to all.

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Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled cats.

6 thoughts on “Science and the Scleroderma Girl: The AP Therapy Rant”

  1. I hear you… I hate it when people try to force a diagnose or a treatment on me. I’d be dead by now if I had listened to everyone online (especially the “drink water, it cures everything” one, love that one). I wish people could learn to simply discuss with respect and datas, not trying to prove others wrong

    1. Exactly! I feel I would also be dead if I had followed some of the advice that has been pressed on me with great assurance and authority by other patients. Really, we need to empathetic to others, but able to use good information (with data!) to support our concerns and medical decisions. One thing I know for sure… there is a lot of variation even within a single diagnosis, so what is working for me may not work for someone else.

      Drink water?! I haven’t heard that one. I’m pretty sick of essential oils and crystals myself.

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