I've been a patient at the Fibromyalgia & Fatigue Center of Seattle (actually in Bellevue) since about August. I saw Dr. MacPherson there, he's a naturopath, I hear he started when Laurie Marti left & started her own practice.
Dr. MacPherson helped me a lot. He tested for loads of things I've wished someone would test for (coinfections, hormone levels, etc.), and identified a lot of problems. Some things I'd already found & was treating through other docs, and he was supportive & encouraging, saying that I was farther along in their protocol, essentially, because I'd figured some stuff out with my docs before I came. He prescribed a lot of supplements and several prescription meds, and it seems to be helping. I am less fatigued, I sleep better, I am more able to actually do things I want or need to do.
Dr. MacPherson has been supportive of me going with less-expensive supplements when I could find them, a cheaper compounding pharmacy, etc. He really helped make it possible for me to afford to see him.
I should mention that along with all the things he prescribed/suggested, I have been doing PT for a back problem, ongoing but triggered by a car accident. This was prescribed by my primary care doc. My PT, Dzuka Lin, is very sensitive to the needs of fibromyalgia or fatigue patients, and he finds exercises that target a specific muscle without working me very hard. I have crashed a couple of times, but each time he adjusts the plan so I won't overdo it again doing that exercise. While doing PT, I have noticed that my back hurts much less, and that I have more energy, especially the day of & day after PT. I'm surprised. And it wasn't that way at first-at first I was really tired for a day or two after. His careful & slow ramping up has gotten me much better able to tolerate exercise. And "exercise" as defined by what I can handle, not by what someone else could do. It's very small, wouldn't seem like much to normal people. He has also helped me figure out how to improve activities that were painful, like driving. I went from not being able to drive much more than 1/2 hour to driving 3+ hours before the pain started, and it still didn't get as bad, even after 5 hours.
In December or so, the FFC got a new office manager, who was pretty pushy about wanting me to buy one of their wellness packages. She suggested I take out a loan for $6000 (from a company she provided a brochure on) at zero% interest (as long as you make payments on time, if you don't it goes up to 25 or 30%), and give it to the FFC, and in return they would take care of me for 1 year. This would include appointments & supplements but not IVs. I told her I'd think about it, but what I was really thinking was that if they didn't have this good doc, I wouldn't want to go to that clinic anymore.
Dr. MacPherson left the FFC in January, and now they have another new doctor. I debated with myself about whether to continue with the clinic, and then last week I got a letter telling me that ALL patients at all the FFC clinics will have to buy one of their wellness packages (or whatever they're called). They only sent me info on one program, it was $2300 and gets you 4 appointments with the doc, 48 supplements (4 a month), and I don't remember if it covers IVs. I doubt it. The IVs caused problems for me so I have not been doing them, so I'm not paying much attention to the coverage there. This program was for patients who are doing better & don't need the intensive level of care that they give at first.
They will no longer take patients on an "a la carte" basis. So I said Bye-bye, FFC.
I decided to go to my primary doc, who is very good, and who looked pretty dubious when I told him about the expensive year-long contracts. He agreed that since something is working, we'll continue the protocol they established while I try weaning myself off various things (antibiotics first, since they are causing hearing loss concerns). Then we will know which of the many things I started there is actually working. This is pretty much what Dr. MacPherson told me we'd do, once I got better.
While I was waffling about where to go next, I got recommendations for Dr. Marty Ross at the Healing Arts Partnership, and Dr. Susan Marra, a Lyme specialist. They both sounded like they had potential & I'd be curious to hear any reviews of them. Neither takes insurance, which is the standard in this area of treatment, and unfortunately we're stuck with that for now. This is something I think will have to change if the XMRV results get solidified. That will take time, though.
I believe that the Teitelbaum protocol is what's been helping me - but if you read him carefully you see that he is about finding & treating coinfections, hormone imbalances, etc., the same as the lyme docs & many others. Somehow his name has gotten associated with something bad, but I haven't figured out what. I think it's mainly that he is such a self-promoter.
While I'm not crazy about the new direction the FFC has gone in, I do think they helped me a lot, and I have a big stack of test results that I can use to work with my primary care doc, beyond just continuing the protocol I've been on. For instance, they found high lead, and we haven't even begun to work on that. And there are several other things, too. So I can see lots of ways I can "drive the bus" with him, by asking for follow-up tests or treatments based on the results I have in hand. I have easily a year's worth of work that I think he & I can do together, before I need an expert. At which time I hope the XMRV results will have led to ideas for treatments.
I am also hoping that maybe Dr. MacPherson will start his own practice, like Dr. Laurie Marti did, and perhaps the doc before her, too? (Maybe this is a pattern, which might tell us something about the FFC? I don't know.) I have not heard anything from him about a practice, but I have my fingers crossed.
Laura
