Here is a case of a woman in her mid fifties. She was diagnosed with severe fibromyalgia. I have been taking care of her for 15 years. By 2002 she was opioid dependent and on her way to total disability. She was treated symptomatically with the usual fare: opiates, Prozac, Ritalin, NSAIDs, Klonopin and T3 (thyroid) supplemention. She began a long therapy with recurrent trigger point injections which afforded her some relief. Along the way drugs like Lyrica were added. Nothing helped all that much. In addition to incapacitating pain and myofascial muscle pain she develped progressive cognitive impairments which tied into her longstanding fatigue. Finally in June 2006 I suggested she try Doxycyline. Her screeenings for Lyme and TBD had been negative. There was no improvement. She was not sold on the ideas and stopped the antibiotics after a couple of months. With progressive memory loss she agreed to try Ceftin and Zithromax. She got nausea and vomiting for her troubles and increased pain. She was not convinced but agreed to humor me. I tried Ketek. Repeat Lyme and TBD antibodies remained negative. There was some noticeable improvement. Her antibiotics were switched up to Cipro, Doxycyline and Flagyl. She was seen two months later. She developed mouth sores and had stopped the antibiotics on her own. The fatigue, pain and other symptoms had improved but were now worse. Ceftin was reintroduced. She was feeling better the next month but complained of GI intolerance to the Ceftin. Minocin was substituted. Two months later she was worse. She was placed on Amoxil, Biaxin and Plaquenil.No benefit. The antibiotics all seemed to have difficult side effects and she wasn't convinced that they were helping. She went on and off antibiotics trying different combinations. Several months later a cocktail of Amoxil, Flagyl and Cipro seemed to be helping. The pain was getting much better. The fatigue persisted. She stayed the course through good and bad months. IgeneX testing was negative with some critical IND bands. A course of Levaquin- felt worse. Then back to Amoxil,Biaxin and Flagyl. Over several months the dose of Amoxil was ramped up from 2 to 3 grams per day. And then something unexpected and dramatic occurred. She came into my office recently and reported that she was better, much better. The pain, fatigue and cognitive issues were dramatically improved. We started the process of hopefully weaning her off a plethora of medications, most of which had not been terribly effective.
Fibromyalgia; Chronic fatigue syndrome; Depression; Chronic opioid dependence; all with a sense of unmitigating suffering, intertwined with months of hopeless desperation. Twenty years of mind boggling pain- phsyical and psycological dysfunction with no relief in sight. How many of us could have hung in there this long? She had been written off by her past physicians because they did not listen. She hung in there with me. First, I was a sympathetic doctor who listened, believed in her, and did my best to alleviate her suffering. Sadly, this was something novel to a patient who had thoroughly experienced the machinery of American medicine. Then she returned the favor. As I slowly became a convert to a new way of thinking she listened to me. She was skeptical of all the things I said. Still, she believed in me, and went along for the ride. We are both cautiously opptomistic. What will next month's visit bring? Hopefully more good news!
So what have I been treating her for? Theortically Lyme disease. Or was it some other chronic bacterial infection like Mycoplasma or CPN, or something as of yet undiscovered. Proof? There is none. Sure there were/are abnormal neurological signs such as decreased sensation and a positive Babinsky, so what? There are mild laboratory abnormalities like a high C3a level. Mostly the improvements are subjective. There is less pain and less myofascial tenderness; she feels better and says she can think more clearly without stumbling over her words.
As physicians we have to be humble and admit that sometimes we are not really sure what we are treating. Mainstream doctors who are quick to debunk such theories and therapies, offer no alternative methods to help such long suffering patients.
So those of us in the trenches will keep searching for answers as we do our best for our patients.