Wednesday, October 1, 2008
Lupus patient
I have a stack of interesting cases which I plan to write blogs about sitting on my desk. Since I am at home, I will mention the story of one patient I saw last week. This patient had "lupus" or systemic lupus erythematosis for more than a decade. She had the classic butterfly rash. She had arthritis, fatigue and frequent episodes of pleurisy. Her rheumatologist had treated her with corticosteroids and Plaquenil. Her symptoms were poorly controlled. About 18 months ago I told her about the Lyme hypothesis. She agreed to be tested. Her results were equivocal. We decided to try antibiotic. Results: No rash, no fatigue, no arthritis and no pleurisy. She ran out of Plaquenil and the symptoms did not recur. This had not happened in a decade. I asked her if she felt comfortable with the new paradigm. Her answer: A resounding yes. We are continuing antibiotics which work better than standard fare. She avoids her Harvard trained rheumatologist now. She is tired of hearing that her experiences are impossible and that her physician does not know what he is doing. It's all a placebo effect. Placebos don't work for an extended period. Find another explanation if you think mine is incorrect. More complex case summaries will follow.
Doc-
ReplyDeleteQuick ?-which antibiotics and how long? How long to obvious improvement?
Placebo effect is as convenient as mental imbalance to explain what you do not understand. I have met this first hand. Describe to me the pathophysiologic basis of placebo effect on specific discrete neuro improvement or visually recordable symptom such rash. I'm sure there is a real placebo effect for some of it- hope of having something that will help fix your chronic unfixable painful life altering disease. Hope decreases chronic stress and the bad effects cortisol has on immune and neuro function. However, that is not going to dramatically fix anyone. The patients have no reason to lie about whether something is working or not. They just want to get fixed.
Doc- the patients make up their own mind about who they want to see. I can't get my other half to go back to the fancy trained neuro- the one who bashed lymes docs. Reasoning- he didn't fix me and he treated me like I was crazy. Stop worrying about it and let your results do the talking.
Last thing- you are treating a lot of antibiotic responsive disease. That you can state without a doubt. Borrelia is likely to be a player in this as it is common. However, it does not work alone and there are many chronic antibiotic responsive organisms out there. Testing for what you can is important but it does not give all of the answers. We may find out in 20 years the Lyme's docs were treating half of the time an entirely different bacteria or other organism and the Borrelia was a secondary invader.
I think part of the problem here is the bandwagon and the opposing camps. We really don't know that much for sure. I know we think we do- but the evidence is not there. The evidence for a lot of antibiotic responsive disease is there. The evidence for the persistance of Borrelia in the body is there and its involvement in some of the disease is there. A lot of what is inbetween is conjecture. Look doc- you know I think at this point that I like you as a person and that I think highly of you as a doc. I can see and understand your reasonings and how you got involved in all this to begin with. But I am different than the average person. In your expression of your profound beliefs, you do come off like a crazy Lyme's doc sometimes. I don't mean that badly. You are a good doc stuck in the middle of a bad spot trying to fix people because you care. You are fixing people whether they have Lymes or some other antibiotic responsive disease. You are probably fixing a good measure of both and some mixtures thereof. It is a hard climate to practice in- medically isolated and legally uncertain. I know I can speak for many of us who can personally say our lives would be much more messed up if you were not willing to go there. You have gone there and choose to stay there. You don't need to defend yourself or your decisions. The defensive edge is what gives the out of the box appearance. Its not you against those that say otherwise- although that is how it may feel at the moment and I understand that very real aspect of things. In the end, it is about the patients that have improved and trying to figure out why and that can be applied to the next patient to fight these chronic dehabilitating diseases like Lyme's. People inside the box will listen better to quiet reasoning and an understanding of what is known and not known. I don't think I am being clear- the difference between "here is my explanation and come up with a better one" and "here is what I saw and did and what happened from it- I don't have all the answers but something is here that is doing something". Just a thought. Not everything is going to be Borrelia and you may fix other things trying to fix that. But fixing is happening and that needs to be paid attention to and the basis of it figured out. Perhaps a better mental place to be for those of us involved as well as being more understandable to those outside this crazy mess. Works for me.