This post began as a Facebook post, sharing the Science Babe’s, Slate article about homeopathic medicine. Then, I started talking about my own personal experience with homeopathic treatment for scleroderma, and here we are.
In 1996, I received homeopathic treatment for scleroderma. If you are considering homeopathic remedies for #scleroderma, #sarcoidosis, a chronic condition, or know someone who is, you may want to keep reading.
I have been there. Having an incurable disease that very few doctors even know about, can feel hopeless. I was there. I was frightened and I needed something to believe. Homeopathic medicine sounded promising. No one else had answers, why not?
In 1996 I worked with one chiropractor using homeopathic treatments. Along with some oral selenium tablets, she had me soak my hands in a solution of what I will call “dead fish powder”. It was made from ground up fish bones and other stuff. Of course, my ulcers became worse. The chiropractor with a PhD in philosophy, told me the swelling meant it was working. According to her, homeopathic medicine makes everything worse before it gets better. It resulted in a MRSA infection that went undiagnosed for nine years. (And a dependence on Oxycodone/paracetamol or (Percocet). But that’s a whole other post.)
By 2005, oozing ulcers had become a normal part of my life. Just another scleroderma complication I had learned to live with. That same year, my raynauds had become so acute, the routine treatment of niphedpine to relax the muscles surrounding the artery to my left thumb. offered no relief. I was instructed by my rheumatologist, to double my dose of niphedipine at home. He did warn I could get a headache, which is short for: Your head will feel like it’s been hit by an RPG shaped like a ball-peen hammer. Doctors use abbreviations all the time.
My pulmonologist suggested Rovatio treatment for my #Raynauds. My doctor wanted to make sure my blood pressure was stable while taking it. There were very few published studies done on raynaud’s patients by 2005. I did not have pulmonary hypertension, so my doctor monitored me 24/7 during the treatment to make sure my blood pressure did not plunge to dangerous levels, causing heart failure. My pulmonologist had me admitted me to the cardiac wing of UCLA, and by cardiac wing, I mean The David Geffen one you have heard about. I was going to be a case study for raynauds treatment protocols. (Oh, if I had a dine for every doctor who said he or she was going to put me in a medical journal…) The patient across the hall had an artificial heart he carried with him in a suitcase while he waited for a donor heart. I also got to share a room with the original Colgate Girl. In my 20 years in hospitals, she was the only roommate I have ever liked. I do wish I had kept in touch. She was a remarkably kind woman with the most entertaining stories.
Wait, what were we talking about? Oh yeah- complications of scleroderma treated with from homeopathic remedies.
The Rovatio seemed effective in bringing blood flow to my extremities, but there was another problem. During that two week hospital stay, I had a MRSA flare. It manifested as swelling and oozy ulcers on my fingers, bridge of my nose and elbows. Raynauds had limited the blood flow, weakening the integrity of my skin, resulting in constant infections on my fingers. I had become so accustomed to my oozing wounds, and because information was limited regarding treatment of scleroderma, the oozing ulcers were just considered something I needed to learn to live with by doctors. Well at least those who weren’t specialists. I had to commute over an hour one way to get treatment and care for scleroderma from the VA, and three hours one-way to see my scleroderma specialist, Dr. Furst. So getting in my car every time my finger oozed, did not seem justifiable.
A few days into my hospital stay, my doctor wanted to know what the infection was, that seemed to be causing these oozing, painful wounds that appeared to be spreading rapidly. Ooze was swabbed and nothing grew. The antibiotics they threw at me were useless. The infectious disease team did a thorough medical history. They asked about the places I had been while in the Navy, and tests they did to link it to infectious diseases came up negative. Then, my lab tests came back positive for a little infection known as MRSA. That’s when my room became isolation. It looked like a crime scene from the outside. Yellow tape with black writing was all over my door. Anyone who entered my room, even to just deliver food, had to gown-up.
So the infectious disease doctors tried to nail down how I got it. MRSA was in the news as the latest plague and it was popping up everywhere. We discussed my wound care. I have used band-aids through the years. Personally, I find them to be nice incubators for infections. I used to wear up to three band-aids for one wound, which from a distance made my wounds less noticeable than a giant white gauze pad, secured with tape around my fingers. If you keep up with my blog, you would know how important it is to me that I do not appear sick. So piling on band-aids seemed like a good idea. They provided protection,but they can get gross from sweaty hands. Then, there was this one time in California, when I was soaking my hands in some water I mixed with some powder I got from a homeopathic “doctor”. I was doing it three times a day. Apparently, soaking a hand with open wounds in ground up fish powder probably didn’t help. It wasn’t sterile. And it was left on my skin. and then I covered it with a band-aid, because you know- appearance.
I forgot to mention that when I was doing the fish powder treatment, I was visiting family and I was on mountains of Vicodin for swelling and drainage of the wounds in my fingers. Of course, when I asked my homeopathic doctor about these obvious symptoms of infection, she told me not to worry. That meant the toxins causing scleroderma were leaving my body. Did you get that? The lady with an advanced degree in philosophy, told me the yellow puss pouring out of my knuckles and finger tips was scleroderma leaving my body. Eventually, I was seen by a doctor who said something about a negative stain staff infection. Of course, he was a doctor and all he knew was how to prescribe antibiotics that made the oozing stop. Well, at least for a while. Eventually the antibiotics began to fail. Ooze was just something I had to live with. It did come and go through the years.
Looking back on the “fish powder fiasco”, I now know that my fingers were infected. maybe it wasn’t the fish power that caused it. Maybe, it was that the infection had become so bad, it developed into MRSA. Unfortunately, I can’t go back in time for a case study, so I guess we’ll just have to speculate.
Since 2005, I still get infections, but rarely. When I get them, my doctors usually go straight to the MRSA meds after a usual antibiotic fails. Depending on the stage of infection, sometimes they go right to the Vancomyacin. nd then there was that time I had an infection in my foot, and the rheumatologist at the Long Beach VA, misdiagnosed me with osteomyelytis because she did not pay attention to my past medical history. That was the time I was hospitalized for 45 days. It was a misdiagnosis. Better safe than sorry though, right? (Yeah, I have nothing kind to say bout that rheumatologist.)
Look, I know how hopeful homeopathic medicine can sound after years of no answers for symptoms that question one’s own sanity. And there are concentrations of the homeopathic remedies that are so weak, they have no physical effects, but do present a psychological benefit known as the placebo effect. I have to be honest. I have done things with crystals, that I believe helped. Not because of the crystals themselves, but because of what I thought of the crystals. It helped me to relax, which lowered my stress and I felt better, psychologically. For weeks I held those crystals, or rocks in my hands, or would keep the in my pockets. Those rocks made me want to eat better and exercise regularly, and wouldn’t you know it? I felt better. The rocks did nothing but give me something to believe in and that’s what helped me. But just because I felt better, that does not prove these things somehow cured me. I still have scleroderma and it is progressing. I am eating well and exercising regularly. Does it prove anything? No, because it’s anecdotal: A non-scientific account of my personal experience. It does however, create more questions.
While research is going on, and the wait for better treatment and a cure continues. As we are learning through robust research, the homeopathic market continues to provide hope to the hopeless. To be honest, I still spend money on hope. I keep it limited to things like beet juice or infused chocolate. When recommends their homeopathic doctor, or I should take a trip to the vitamin aisle at Whole Foods, I use a mantra to help me accept the person’s advice gracefully. They do mean well. So, I gently say to myself and repeat until calm, “You know what else is natural? Arsenic, uranium and bullshit.”