How to Tell Your Doctor You Have GDD. Use the Peanut Analogy.
More and more I find it incomprehensible that many doctors do not seem to understand that patients can have GDD. A simple point I raise is: " you are injecting a foreign antigen into someone's vascular system directly, you don't think some people may experience a deleterious immune response? Really?? " By the way this can occur to (almost) anything injected iv- some people will experience an adverse reaction.
My theory is GDD is essentially a Tcell dysregulation condition, basically a Tcell allergy. (as an aside if you have GDD you should list it in your medical record as a serious allergy). So although a slightly different form of allergy, one associated with antibody production, the concept of a peanut allergy is quite analogous.
Patient says to doctor: "So you don't think I have a Tcell allergy to Gd, GDD, because you have never seen someone with GDD before, correct? You do know that people can be allergic to peanuts, correct? You do know that rarely people can develop a fatal anaphylactic reaction to eating peanuts, even just one, correct? Have you ever seen a fatal anaphylactic reaction to peanuts? (answer will do no). So since you have never seen it, does this mean that anaphylactic reactions to peanuts do not occur? Oh and by the way, people are eating the peanuts, and there are a number of immunological protections in the GI tract. Gd, unlike the peanut, is administered intravenously, bypassing a number of microbiome and immune protections. Furthermore the Gd stays with you in bones and other structures, so it is like hammering the peanut into your bones (millions of micro-peanuts), after main-lining it.
It is a foreign antigen, ofcourse some people will react adversely to it (and it is remarkable how infrequently the adverse reactions occur). May be only 1 in 10,000 individuals experience the GDD response to GBCA, so radiologists, clinicians, etc, can calm down..... but you have to know that it occurs.
Talking about the peanut also lends me the opportunity to continue the comparison, dealing with a subject that many patients focus on. I had 16 GBCA injections and now I have GDD, so my GDD has to be 16 times worse than someone who had just 1. There is no sense for me to try chelation as there is no possibility of me getting better and I must remain in a state of intense agony. WRONG. This may be the case in 75% or so of patients that multiple GBCA injections are much worse than single injections. Going back to the peanut, some people can die from anaphylaxis eating one peanut, others may only react badly till they had a few handfuls. The severity of reaction is quite individual. The duration and number of of treatments most often corresponds to the number of GBCA injections.. but not always. If GDD arose after a number of GBCA injections (and not after the first). It may well indicate that the immunological intensity of your adverse immune reaction to Gd is intrinsically much lower than someone who had just 1 GBCA and reacted intensely. It is really difficult to know exactly how things work out until you start. Every journey (including back to health) starts with the first step. But correctly performed chelation is nuanced.
What I pay attention to is the severity and escalation of re-equilibration Flare following each chelation - this is what I focus on to tell me when chelation has been enough to pause and maybe stop.... But I do factor in how many GBCAs they had. What 24 hour Gd urine level is pre- and post-chelation. In other words: nuanced.
Richard Semelka, MD