One of the major problems that most people describe about the disease is that treatment can be very expensive, and to travel to a center to get treatment and stay there, can also be expensive. So this is for all those individuals, and for all sufferers actually in general.
What simple, inexpensive things can I do to manage GDD at home?
I will start by mentioning that I come from the tradition of evidence-based scientific methodology for the treatment of diseases. In that tradition, I keep in the back of my mind, that a large study was published a few years back in the New England Journal of Medicine (NEJM) that oral multivitamins may not have additional life prolonging benefits for the majority of people, and another study in the NEJM,also showed no benefit for survival for those who prayed versus those who did not. So, multivitamins may not help, and prayer may not help... So that is maybe devastating news. Yet most people will take multivitamins at some point (it is a multibillion dollar business) and most people will pray at some point.
This is however what I do believe:
1. Placebos have been shown to have very therapeutic benefit, both in a positive way (life preservation) and negative way (life decreasing or health damaging). The positive placebo effect in most drug trials ranges in the 10-20% which is not insignificant. So my opinion is that belief is a very critical aspect for the success of treatments (all treatments) both by the practitioner and the patient. In Radiology famous negative placebo effects are the Webber effect (if patients feel they will have a reaction to a contrast agent they have an increased likelihood of that reaction, and the Lalli effect, where if the technologist/nurse feels the patient will have this reaction the patients will more likely get that reaction). These are very real and well shown in studies. The major reason why I do not like to tell patients that they will vomit when they receive a contrast agent, because if I do, they will. A calm environment is always optimal.
2. If agents are inexpensive enough and have a good reason that makes sense to show benefit, and do not have serious adverse events, then I generally do not oppose them. I may not strongly endorse them until there is solid evidence-base that they work. So multivitamins, minerals, anti-oxidants (N-acetyl cysteine, glutathione) and nerve synapse molecules (glutamate), are from my perspective, not unreasonable especially if taken in low doses and not too often. They also should not be expensive, since there is no clear scientific evidence they work.
3. Diets rich in anti-oxidant food items, preferably natural. A short list: dark green vegetables (eg:spinach), sweat potatoes, grapes, walnuts, blue berries, pomegranite. In a future blog I will provide a more exhaustive list of food items. Alkylated water fits into that category as i) a number of patients describe that they were dehydrated or in some other metabolic acidosis state (excess exercise) prior to the GBCA administration that caused them GDD, and ii) scientifically GBCAs are more likely to break apart under more acidotic conditions. So even after the administration, even well after, a number of the agents may still remain in their original chelated state, so it makes sense not to create an environment where they may fall apart years later. If you don't have access to alkylated water (expense, availability, although many grocery stores do sell it), simple water is also extremely important. Since by definition GDD sufferers have at least relatively normal kidney function, and urine studies show that gadolinium is excreted for a long time after the GBCA administration, flushing out the gadolinium makes a lot of sense by drinking a fair amount of water. Alkylated water, water, in moderation, don't become water intoxicated. No longer thirsty is the best indicator that you have taken enough water.
4. Moderate exercise consistently performed. Exercise atleast 4 days a week. In the phase of most active GDD too strenuous exercise is probably not a good idea (puts one into an acidotic state), but moderate exercise is always a good idea. In fact moderate exercise is a treatment that is important for virtually everything, anyways. There is excellent science behind that. For GDD patients though the additional benefit is that it ensures range of motion preservation. So gentle exercise of the most effected areas makes a good deal of sense - with gentle being the operative word. You do not want to lose function because of inactivity.
Summary: it is important to use simple, inexpensive ways to manage/treat GDD, that don't require costly interventions. Remember the eternal wisdom of the expression "everything in moderation". Many of the points I mention do not yet have proven evidence-based findings that they work (well, consistently), so many are a bit like the expression of chicken soup :"at least it doesn't hurt", but that also means make sure that they do not cause harm. At the same time there should be some reasonable evidence that it makes sense to take them. I want to emphasize pay attention to the unknown aspect of harm about everything you take. Remember you were told GBCAs are extremely safe, which they are, but they weren't for you. So if GBCAs were harmful to you, what about supplements, particularly if they contain metals. Also be cautious of the fact that a number of supplements are a bit 'shady' and may not even contain the ingredients that they claim to contain. Buy reliable supplements from reliable sources.
Common sense is always the best operative expression: healthy food rich in anti-oxidants and moderate exercise, coupled with a reasonable amount of consistent water intake to enhance the flushing out of Gadolinium in your system..Also, if you feel you have developed GDD from a GBCA administration, do not get future GBCA administrations.
This is a blog I intend to expand upon as more information becomes available (hopefully soon).