jojobean wrote:
They are not "beliefs". every antibiotic given to has caused severe anaphlaxis for 3-4 days...any steroid that have she has tried has caused nearly fatal reactions of swelling 3 times her normal size and major heart problems from processing all of that fluid. She was given a tpoical antibiotic and it ate 2 layers of her skin in 30 mintues. She has mastocytosis, a rare allergic disease. Her bloodwork shows positive for it.
There's the missing piece of the puzzle. You will note my caveat, "unless she has some underlying immune system disorder," above. Well now you've presented a fuller picture that makes more sense to me. (I should point out that although mastocytosis presents symptoms that can be similar or identical to allergic reactions, it is not an "allergic" disease, and the mediation of reactions is often very different from true allergic reactions).
So what we are dealing with is not an allergy to all antibiotics and all steroids, but rather with mastocytosis. Mastocytosis is certainly going to present allergy like symptoms, but due to the excessive number of mast cells present in the body. In these circumstances your mother is vulnerable not only to antibiotics and steroids, but potentially to a whole host of stimuli.
This is a difficult situation to work with, but no phsyician would be incapable of establishing a therapeutic regime that addressed the acute condiction, while accommodating the underlying condition. My particular area of medicine is internal medicine (infectious disease), and I have dealt with patients presenting mastocytosis from time to time. In these cases, I have brought in an immunologist colleague, so that we can bring coordinated experience to bear on providing advice.
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Your attitude is same attitude that is wrong with medicine. Just because it doesnt happen often, doesnt mean it cant happen. Her mother died of a massive allergic reaction to a steriod shot...she was dead before they pulled the needle out. It seems to run in the family. The only reason this allergy is disturbing to doctors is because antibiotics and steroids are the halmarks of modern medicine. Had she said that she was allergic to all stinging insects...there would be no questioing her mental state, but because of her bizzare allergies to half of creation, then she must be delusional.
When did I ever say that it can't happen? I acknowledge that it did happen and very likely will happen in the same circumstances.
I have never suggested that your mother was in any way delusional. I have never had any doubt that she presents the symptoms in reaction to these drugs. Even if these reactions are psychosomatic (and psychosomatic triggers can be present with mastocytosis), that is not indicative of any disordered mental state. As I have said before, they are real, measurable and often warrant therapeutic action.
But what I am doing is not accepting your claim of allergy as a full and sufficient explanation of why she presents these symptoms. The issue is not
what happened when she has been exposed to these drugs, the issue is
why it happened. When we know why, then we can address the real problem, and not merely its symptomatic presentations.
Just because I do not accept a patient's belief that a given set of symptoms warrant a specific diagnosis does not mean that I don't believe these symptoms have occurred. But what it does mean is that I want to use the training, skill and experience that I have to treat what is
actually disordered, rather than what the patient has assumed is disordered.
We have a hard time with doctors not wanting to learn, but just throwimg their hands in the air and saying she is too complicated.
15 Jul 2011, 2:50 pm
