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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Science and the Scleroderma Girl: The Only Point in Common

Two years ago I was getting bounced around between several doctors as they tried to figure out why I was struggling to breath. The rheumatologist felt I should see a cardiologist. The pulmonologist felt that I needed to be treated by the rheumatologist. The internist insisted that the pulmonologist needed to intervene. The rheumatologist was very reluctant to give me an inhaler even though he had ordered the PFT that indicated that I needed one.

I was getting close to pulling out my hair! Literally, there were too many cooks in the kitchen and no one could manage to get the meal assembled. I was the cake in the oven, and I had just collapsed into an ugly, doughy mess…

“Look”, said the rheumatologist in the middle of this, “you are the only point in common between all of your doctors. Each one of us sees just one slice of your health, but you are the one getting all the info…” In effect, she was telling me to take charge of my health. Uh…

Spock: He is intelligent, but not experienced. His pattern indicates two-dimensional thinking… (Star Trek II: The Wrath of Kahn)

Seriously? I’m expected to organize this circus? I have skills, but to suggest that I should run this show is ludicrous…

Except, from a certain viewpoint, I am running the show; I AM the show. I have a serious illness, and I have a team of doctors to address my symptoms and halt my disease’s progression. I need to be proactive and ensure that I get the treatment that I need. Clearly, I needed help to sort through the conflicting advice and to assign priorities to the elements of my treatment plan.

There needed to be one doctor who knew me well, understood the big picture, who could also cut through the red tape and facilitate immediate medical response from the most appropriate provider if needed.

I made an appointment with my internist, who was also my primary care physician, and laid out the problem. I told her that I needed someone to review all the notes and test results from the other doctors on a regular basis to understand the big picture. I shared with her my concerns about differing information from the other physicians: I needed an expert to work with me to coordinate my treatment plan. There needed to be a doctor who saw me on a regular basis, who knew me and my situation, who could take a “snapshot” of my health situation, and who could see me almost immediately if I got into trouble. One of the problems that I struggle with is knowing which doctor to call when I develop problems; with this arrangement I have a designated first contact who will decide which specialist needs to be contacted next.

We agreed that I should come in every three months for the medical review and snapshot of my current status.

Everything changed for me. My internist reads everything from the other doctors at these appointments, and she answers questions that I have in a cross-disciplinary way that the other specialists can’t. It’s more like a consultation than the usual medical appointment. She looks to see what has been missed by the other doctors, and facilitates communication between the doctors. She has sent me for immediate testing, cut through the red tape so I could get oxygen when I needed it, and makes sure I get the complete text of all testing reports.

I make an appointment with her before I see the specialists to plan for those appointments, and then I see her afterwards to debrief on what happened and to see if anything was missed. When I go to my appointments with the specialists I can talk about test results, my prescriptions, and the symptoms that are concerning me; I have become an informed patient. Because of this I am a better conduit of information between the doctors, and the coordination of care and smooth communication has greatly increased. My doctors and I are now collaborative partners working to manage my disease.

From a collection of 6 doctors I now have a smoothly coordinated team to jointly treat my illness. For me, this is a huge difference! I’m now in much better shape, and I feel more in control of what is happening. I AM the only point in common, so I had to activate my hidden superpower of facilitation and coordination to make it work.

And knit. I had to knit a lot.

Have a good weekend everyone.

Science and the Scleroderma Girl: Research Results

Yesterday was a good day for me. I ran to the library, went grocery shopping, and had my hair cut. The stylist who cut my hair, however, was having a poor day: she has fibromyalgia and was struggling with the pressure front moving through Colorado. I told her about bananas, and she told me about a new product that she was buying off the internet. As we swapped info she pulled out the bottle of her supplement and I snapped a picture of it with my camera. She gushed about her product: it is just great! It cleans toxins from your liver and pancreas too!

Okay, I just checked out this product  online, and it will need a blog post of its own. It has 19 different ingredients in it that I have to check out, but right now I think that I will need to stay away from it as it has aspirin in it from a willow bark ingredient. I already know that aspirin is something that can hurt my (already struggling) kidneys and put my stomach lining at risk (the gastroenterologist sent me a strongly worded letter on this topic… I’m complying!)  The other ingredients might be okay, however, and I should check them out to see if they are possibilities for me to add to my diet.

So, how do I do this? I do lots of searches with key words like “research”, “evidence”, “inflammation”, “mortality rates”, “efficacy” and the item that I’m searching for. When a friend recommended that I try tart cherry extract to help with inflammation I typed in “does tart cherry reduce inflammation” and discovered that there was an active ingredient in tart cherry that really did reduce inflammation and that it was more gentle on stomach linings than a NSAID. Clinical research projects had been done that showed positive effects by measuring inflammation markers in patient blood. I talked to both my internist and my rheumatologist about it, got their okay with some stipulations, started the supplement with medical monitoring (blood drawn every month), and had to stop 3 months later when my kidney function dropped dramatically. Oops.

There is an important lesson here. Just because something is “natural” doesn’t mean that it is safe. Think like a scientist. Keep a journal of your disease symptoms, diet and interventions. Ask questions and talk to your doctors. Educate yourself as much as you can.

English Rose.
Time for a rose break! Look at what I found in the garden this morning!

Where do I go for information? I could have gotten info from sites linked to the company that markets tart cherry extracts, but that information is somewhat tainted by the simple fact that they want me to buy their product. I look for information from major publications and research funded by the public domain. Some of the best places that I’ve found to go are:

  • The National Center for Biotechnical Information (NCBI) has links to lots of places you can access for information. I used this site a lot as a teacher as students could look at genes and run DNA comparisons. Now I can use it to research tart cherry!
  • Linked to the NCBI home page is a great resource: PubMed. Everything in the medical and biological universe is searchable at this site; you can see the synopsis with a general outline of the research and results,  and there are links to the journals and books along with information on how to access the full text. Some full text articles are free, and there is advice on how to get others.
  • A subset of PubMed that is extremely useful, both for the search engine and information on how to evaluate information you find, is PubMed Health. For me, this is the mother lode.
  • I live in Aurora, Colorado. I am lucky in that the CU School of Medicine is located here, and there is a great library there. I went into the library, talked to them, and got an account that allows me to access articles through their licenses. So far I’ve only had to resort to this option a couple of times, but it is good to have it.

Next to keeping my journal, the info I find using these resources has been extremely helpful and empowering in my battle with these ill-behaved autoimmune conditions.

Knowledge is power!

Science and the Scleroderma Girl: A Series of Serendipitous Events

 

Serendipity: the faculty or phenomenon of finding valuable or agreeable things not sought for.

Pincushion Flower.
This morning, while weeding the back wilderness, I found this transplant. Serendipity in the garden.

I can clearly remember the first event of historical significance that invaded my simple world of early childhood. I had been snuck into the big kids playground at our school by my rule-breaking older sister. Swinging on a high bar way too high for my little First Grade body, I listened to my sister and her friends talk about Sputnik; a scary object launched by the Russians orbiting the earth above me. I couldn’t see it, but evidently it could be followed because it was talking to the ground with radio signals.

Just like that I was gone. The world was round, there were things that happened in the world that I couldn’t see, but evidence could be collected that betrayed their presence. I was a science geek in that instant, and it never ever stopped for me.

Sputnik, and the ensuing space race, made money available for science education in the public schools. I was exactly the right age to benefit from this new emphasis on understanding the world around us through scientific thought. I was a curious child: I questioned everything, collected bugs, nursed baby birds back to health, begged for a microscope for Christmas (which I got), and read endless books.

Years later, married to a young serviceman in the navy, I ended up applying to the university near where he was stationed to study biology. That is how I ended up working towards a degree in molecular biology at UCSD. My professors were famous scientists and I was so lucky to learn from them. Stanley Miller taught me physical chemistry, and I learned immunology from Seymour Jonathan Singer. Ok, I took that immunology class from Dr. Singer because he was my advisor, and I was kind of scared of him. I couldn’t say no when he pressed me to enroll.

Because I had immunology under my belt I was hired at the Scripps Clinic and Research Foundation to work in the lab of Dr. Eng Tan, who conducted research that focused on the molecules in a cell’s nucleus that were the targets of the antibodies found in patients with rheumatic conditions such as lupus and, wait for it, SCLERODERMA. Yep. My first job in that lab was doing the ANA tests. Later on I was part of the research team that identified SCL-70, one of the molecules involved in the diffuse form of systemic sclerosis. Here’s the paper if you want to torture yourself. 🙂

I have to say, I loved working in research, but it wasn’t as creative and social as I needed my work day to be. I went back to school, got a teaching certification, and began to teach biology and AP Biology. Whew. I had to take lots of classes to stay up on things, and along the way I learned lots about human anatomy and physiology. Just as I was working into my comfort zone education transformed and educational standards were instituted. Good grief. Why do I have to keep on stretching my wings like this?

I had to teach students how to think and plan experiments just as scientists did in my classroom.  I created lots of open-ended research problems that they could investigate, collect data on, and then draw conclusions that I could use to link to biological concepts that they were learning about. Wailing internally at the extra work, I began using science notebooks in my classrooms.

Students doing experiment.
In this lab the students grew yeast in different conditions and then collected the amount of CO2 gas that they produced as a measure of growth in the attached balloons. These students were varying the amount of sugar the yeast had.
Graph of experiment.
Here’s the graph from a student team that varied the growth temperature. Those yeast sure liked water that was 60 degrees Centigrade! 

The kids liked the experiments, their ability to think scientifically grew by leaps and bounds, and along the way I really learned a lot of things myself. I ended up training other teachers on how to do science notebooking in their own classrooms, and eventually I helped write the inquiry science standards for my state.

Four years ago symptoms that I had been dealing with for years (and decades) overwhelmed me and I was diagnosed with a couple of the autoimmune diseases that I had learned about early in my professional life. Unbelievably, through no real choices of my own, I had been prepared with the background knowledge, resources, and experience that I needed for the fight.

Serendipity.

This is Science and the Scleroderma Girl, the mini-series project of blog posts about the adventures of a science geek in the world of chronic illness. June is Scleroderma Awareness Month, so I hope to put up a new post each day. I hope you’ll join me.

It’s June! Introducing Science and the Scleroderma Girl.

Okay, this is it. I’ve been fussing for over a year about writing a series about science, biology, medical decisions, and navigating safely through a world of alternative medicine and treatments. I’ve come close to launching into a block of mini-rants before, but never went there because it would just take too much energy…

June is Scleroderma Awareness Month. As luck would have it, June has also arrived as I sail back into calm waters following a 6 week storm set off by worsening symptoms, medical testing, and finally a collaborative consensus between my doctors and myself based on data that informs a new course of treatment. In other words, science, biology, and data-driven medical decisions have saved the day. I have lived a life of science in my educational and professional life and this training and way of thinking continues to save the day for me. I do have other skills, of course, but the foundation is always based in science.

I guess I think that it is time for me to share in case it helps anyone else.

Hot Cocoa Rose.
June has brought me the first rose of summer, too. Look at this cutie!

This month I am better. This month my energy is coming back, ideas for topics are swirling in my head, and I think that the time has come. I’ve started a planning grid with all of my topics and resources, and things are starting to come together. Since June is Scleroderma Awareness Month, this is the month that I should do this. If I can put this all together, there will be a post each day this month. With Star Trek quotes, of course!

I did tell you I was a science geek, didn’t I?

Scleroderma Awareness Month: Hard Word. Harder Disease.

Every year I get a note from the Scleroderma Foundation about Scleroderma Awareness Month. Take the pledge! Tell at least one person about scleroderma! Coerce your friends into joining the walk for the cure later this month.

Piece of cake. I can do that. Hand on to your phones, because here we go.

Scleroderma is a crazy sounding word, isn’t it. It is actually descriptive of the most obvious symptom of the disease:  based on Greek words, “sclero” means hard and “derma” means skin. Hard skin. My skin is interesting to say the least. Hard, shiny, speckled with white patches of scaring, tight across my cheekbones and knuckles: kind of typical for the disease.

“It’s just your skin”, I was told by my ex not long after my diagnosis. “It’s not a big deal, right?”

As it turns out, this actually is a big deal. The tissue under attack by the immune system is the connective layer just under the skin. You know, the layer of the skin that produces the collagen that gives skin its stretchiness and cohesiveness. Imagine what would happen if this tissue grew really thick, stiff, and then tightened down so badly that blood circulation was cut off and it became impossible to move correctly at the joints. The skin around your mouth can be too tight for you to open wide at the dentist, you can’t bend over to tie your shoes, and forget turning your neck. If your skin won’t stretch, you are in a fix for sure! Finger tip ulcers are a constant worry, and physical therapy to maintain flexibility becomes part of the daily routine. Or you can knit. Knitting is good for blood circulation and flexibility. 🙂

Best advice ever for the scleroderma girl.

This same connective tissue is also found throughout the intestinal tract, and in many other organs of the body. The lining of blood vessels also is impacted, and there is a lot of smooth muscle (like the muscles that work in your stomach) damage.  Some people with scleroderma will only experience it in their skin, but others will have damage occurring in organ systems of their body. None of this is nice; some people will lose the function of their hands, while others suffer kidney, heart, and lung damage. Intestinal tract damage is almost universal, and some of these complications can be severe. Check out this neat interactive chart of symptoms.

So, what causes scleroderma? The actual answer is… nobody knows. It is an autoimmune disease that is triggered by unknown causes, has no cure, and if left untreated in the systemic form is fatal 50% of the time. Right now there is no drug to directly treat the disease, but there are treatments to help with symptoms and to modify the course of the disease by impairing the immune system. With these drugs survival rates are way up. Seriously, hug the next scientist you come across. I personally plan to throw a bar-b-que for the next one I get my hands on.

As it turns out, this year the month of June arrives at a pivotal time in my scleroderma life. There is so much going on, and so much that I’m thinking about, that I’m gearing up to post a whole series of articles about the complexities of navigating through the world as a chronically ill patient. Seriously. I could write a blog post for each day of the month. My little notebook that I jot ideas for posts in is filling up quickly.

I need a catchy title for the series. It will be about science, biology, medical decisions, and navigating through a world of alternative medicine and treatments. You know, like fake news, but instead we are dealing with fake medicine.

Whatever is a scleroderma girl to do?

Stay tuned. I’m seriously gearing up for this. June is going to be a great month.

Hey, if you want to walk with me for a scleroderma cure, just let me know. 🙂