Gadolinium Deposition Disease: To Treat or Not To Treat. That is the Question.

What should be clear to sufferers of GDD, although there is now a disease that is recognized, at least by a number of health care providers, there is no magic bullet for cure. I had shaking chills at night about 4 weeks ago, from suspected Lyme's Disease, and I took 4 ibuprofen pills, and the shaking chills, head-ache and fever went dramatically down after 30 minutes. I had to think: "too bad there is not a drug that causes such a dramatic response for GDD sufferers, with such a high level of safety, and low cost." I also then took a 7 day oral course of doxicycline, and I recovered completely. So complete cure for Lyme's disease, without much pain, cost or time involvement. Unfortunately this is not true for GDD treatment, there isn't right now cheap, fast, nonpainful, and very effective treatment. We do have iv DTPA that can assist in increasing Gd removal, which is a great boon; but as yet not an effective drug to rapidly reduce the host response... although I am certain it either exists, or can be readily developed.

At the same time, since Gd is continuously eliminated from the body in individuals with normal kidney function, and the host response to the Gd presence may in some people diminish in time, should nothing at all be done, except drink lots of water?

To Treat or Not To Treat therefore becomes a very personal decision. This is an expansion of an email I recently had with a sufferer:

It depends on how you feel, if you feel you are getting better without treatment, then that may be the best reason to hold off. Unfortunately I, and no one else, knows the long term outcomes of everyone, when leaving disease alone. I do know that many people who never get treated end up with progressively worse, and somewhat NSF-like disease, but my suspicion is that also individuals may improve from the combination of continued renal elimination of Gd from normal kidney function and the host immune response diminishing with time. At this time there is no way to predict which track a person will follow. Therefore it has tobe an individual decision. If it were me I may leave things alone if I am getting truly better (careful not to confuse hoping that I am getting better, from actually getting better), but if I was the same, or definitely getting worse, I would go with chelation... Also as with most treatments for most diseases, early treatment is more likely to result in complete cure than late treatment. Clearly to me 6 months is likely the start of the range, that you can wait to, where disease may still be almost-completely reversible, and the back-end is likely 1 year. So you do have time. The major missing link is no established reliable drug to control the host immunologic response. I suspect the drug will lie in the family of auto-immune disease drugs, since most of these are focused on controlling cytokines/chemokines, etc, which is the issue with GDD.

I suspect that a large number of individuals have GDD-like symptoms within 24 hours of receiving GBCA, resolve on their own. Infact one could group the feeling of all-over body warmth, taste perversion (strange word to use, essentially a funny taste, I describe it as an olfactory - nasal - sense), and nausea. But these resolve within 24 hours, and therefore to the extent that these are immune-system mediated, the immune system quickly calms itself down. It is also likely that symptoms may persist for a couple of weeks and still go away on there own. I therefore use 1 month as a line in the sand for when disease is transitory and has a good chance of resolving on its own, and disease that will be persistent. Definitely wait for one month, and if symptoms go away then probably leave well enough alone. But if symptoms last beyond one month then it almost certainly is persistent GDD. Even so, in a number of individuals with persistent GDD, they may largely resolve on their own. Except if symptoms continue to somewhat dramatically improve on their own over a period of months, maybe 6 months, I am not certain how to predict who can improve without treatment. My suspicion is if you are no better, or worse, by 6 months with GDD, then disease is persistent and you will never be fully recovered without treatment.

Although comprehensive treatment to me still is not certain, the one disease management I am 100% certain about: if you have received a GBCA and have developed symptoms that are similar to what has been described for GDD, until we learn a lot more, you should never receive another GBCA administration again. Essentially all patients who have developed GDD after a GBCA administration, always do worse and with greater symptoms and more progressive disease, if they get follow up GBCA administrations. More on this later.