Leaving patients high and dry and having to fend for themselves: one of the great wrongs committed by the allopathic medical community in the denial of Gadolinium Deposition Disease. There are many negative aspects to it.
Of the myriad of problems due to the failure to recognize the disease, the one I will focus on here is that it leaves patients defenseless in having to fend for themselves.
In having their disease denied, a number of patients have been further damaged by even more GBCA-enhanced MR studies, to investigate GDD. Others have been injured by a variety of unnecessary surgeries/ procedures/ treatments based on lack of knowledge of the disease, maybe the luckiest of the mismanaged patients were simply informed they need to see psychiatrists.
By leaving sufferers to their own devices, and driving them to hunt for answers on the internet, they are subjected to the full range of information, maybe the majority of which is ill-informed, and even if not intentionally misleading, misleading none-the-less because posts are based on personal views and anecdotal suspicions, not aided by medical knowledge, rather based on gut feelings not subjected to careful reasoning. Many are alarmist, and alarmist on subjects that they are not actually expert on, as the circumstances they describe are biased and not controlled. Patients are informed to take all sorts of supplements or products without critical thinking or science-basis. There are a number who are on elaborate self-prescribed protocols of various supplements and products, that on the surface may sound fine, but don't really have solid grounding in science. The great majority seem to be on some form of self-prescribed protocol of supplements. I do not blame sufferers for following these protocols, or the advocates for describing their self-prescriptions. They are all trying to help themselves or each other in the vacuum that allopathic physicians have left for them. Infact, I find it remarkable that a number of the lay-scientists and lay-physicians are extremely well informed on the science of gadolinium, much more-so than the physicians considered experts. Not to be misunderstood, a number of supplements are fine and may also be helpful.
This is a major reason that I spend so much of my time writing blogs on the subject on gadolinium and update blogs. I hope to give patients tools to help them manage their care.