Chelation with an Effective Chelator: 3 Critical factors.
There are 3 principle factors that must be considered when treating an individual with Gadolinium Deposition Disease (GDD), and any other metal deposition disease to make the therapy tolerable, and thereby generally used.
the amount of chelator used
the amount of immune dampening used
the time interval between chelation sessions.
I make a point now of addressing this with all patients, since their great fear is that of the Flare of symptoms. Even/especially with an effective chelator Flare of symptoms always occurs in an individual with GDD. No Flare, no Deposition Disease. However this can be controlled, and usually this requires some level of adjustment. Even knowing about this, and that it can be controlled, some individuals still have difficulty accepting it - I think in large measure because they rightly have a jaded sense of trust and belief in medical health care.
So, in my initial publication on chelation, I employed a fixed strategy of full chelation (day 1 full dose Ca-DTPA, day 2 full dose Zn-DTPA) and only oral steroid immune dampening. In large part this was a reflection that most people traveled from a considerable distance, and also when you have something inside you that is making you sick (demonic possession, or in this case Gd) most people want it out right away. But with experience, I have found that what one wants, and what one can tolerate are completely different things. And even if explaining to them that a severe Flare in them has been a very good thing because they were able to get 40 or even up to 100 times more Gd out of their body,. a number still do not have the faith to trust this.
Initially my focus had been on the severity of the initial: treatment- related Removal Flare, more recently I have focused at least as much on the the later: Re-equilibrium Flare.
So the initial Treatment Flare can be well managed by starting with low dose single day chelation. Many people do have an issue (I as well) with the concept of throwing away expensive chelator. It is like ordering an $80 bottle of champagne, having two glasses and throwing the rest away. If one treats a number of patients at the same time, as I do, this throwing away can be avoided by splitting a vial into two syringes for two individuals treated at the same time. The great majority of practices are not in that situation. So this is a discussion that can be had with the patient: half dose and less Flare, but throwing away half the agent, or full dose, more Gd removed from the body but more Flare. So they are given a choice and they understand a Flare will be coming, but it is not a bad thing (if managed well).
Managing the Removal Flare, we do by a combination of starting with lower amount of chelator and using higher amount of iv and oral steroids. The oral steroids we use as a tapered dose pack type strategy, where oral steroids should be stopped about 7 days post chelation in a tapered fashion. We generally relatively quickly can increase the amount of chelator, and more slowly with a slight lag time, decrease the amount of steroid use. Dropping iv steroids relatively early, and shortening oral steroids. Ultimately low dose steroid just the day before, the chelation days, and one day after. Also then substituting in lower potency inflammatory response reducing agents, one supplement we use in a number of sufferers is Pluripain. Some have used this combination: pluripain, acetyl-L-Carnitine 1500-200o mg/d, Alpha-Lipoic Acid 300 mg BID, and Coenzyme Q10 100 mg BID. I have generally favored turmeric, spirulina, choleralla (two fo these contained in Pluripain). Low dose Naltrexone has also helped a number of individuals.
The re-equilibrium Flare may actually be the most specific finding to confirm the diagnosis of GDD. Reaction at the time of injection to any substance, even normal saline can occur... but it will not be re-igniting of the GDD symptoms; however rarely this distinction: Gd Removal Flare and stress related reaction to an iv injection of anything can be uncertain. In contrast, delayed reaction at 2-3 weeks post chelation, with symptoms returning, really should only occur in a GDD state. In a very important way, some re-equilibration is important, as in my opinion it may be the most effective way to remove Gd from bone, and hence reduce the total body Gd content, so chelation sessions spaced 4 weeks apart allows for a week or so of re-equilibration Flare, going beyond 4 weeks between chelation can in some individuals result in an intolerable level of re-equilibrium Flare and should be avoided. Probably atleast 5 chelation sessions need to be done until going longer than 4 weeks between sessions is manageable.
The simplest way to manage re-equilibrium Flare if it is intolerable, is to decrease the interval between chelations to 1-2 weeks.
A critical reminder about recovery from GDD: symptoms do not respond altogether at a linear recovery rate. Due to Flare ( often the re-equilibrium Flare), some pains in some locations may get transiently worse. Rib pain is the symptom this most often happens with. But even some Flares may newly appear, that were not present before, such as, and rarely, vision change. In the great majority of subjects these symptoms resolve with further treatment. Also after the further chelations, the addition of time to allow inflammatory symptoms to calm down, aided by additional conservative, supplement measures (which I mention above, and have described in other blogs).
One word about steroid use. I instruct patients to take the lowest amount they can to keep Flare in the 3-5/10 range, and to decrease the amount of steroids with time following upcoming chelations. Some individuals in whom the Flares last longer and more intense, I will tell them they can take 4 mg of Methylprednisolone to have some check on the severity of Flare for a prolonged period. The best treatment for Flare is further chelations, and generally by the 5th chelation in many individuals the Flare becomes more bearable.
As I have mentioned with DTPA to begin with, as with any drug that works very well, taking too much of it can be a disaster. Taking too much steroid can also cause many different undesirable and damaging effects. So attention to my directions is critical.
What I describe above is now optimized, ideal treatment for GDD. Essentially as safe and as effective as even the best treatments for other diseases. An iv agent with even stronger affinity for Gd than DTPA would likely add some additional benefit, but then Flare will also likely be more severe, so the same discussion as above regarding managing it. The next evolutionary step will be the use of an effective oral chelator, which hopefully will be HOPO or an oral DTPA-type agent.