Fear of Flaring. If correct chelation is performed, stopping chelation is a huge mistake by GDD sufferers

The operative phrase is "if chelation is performed properly". The current regimen of chelation we perform with DTPA + steroids and antihistamines may be the safest and most effective treatment performed for any complex disease. It is easy to do a poor treatment.

That said Fear of Flaring is in my mind the most tragic mis-step patients with GDD can make. This blog restates many of the points raised in earlier blogs.

The presence of a Flare is the most definitive evidence that a subject has GDD, which by and large is the best diagnosis for the symptom complex that the individual has because all other entities (unless they are actually GDD itself) are not treatable to near cure, like GDD, but as at best manageable with life long often moderately toxic medications. GDD can be treated to near cure in a reasonable time frame.

So the principle of Flare is a very good thing, it means you have GDD if you received a GBCA shortly prior to symptom development. What is not recognized, but I have stated a few time, in the absence of GBCA administration (also in presence of) a Flare reaction will occur from any metal that shows significant elevation of urine elimination from pre- to post-chelation, with symptom intensification occurring shortly after chelation. So Lead Deposition Disease (lead toxicity) is distinguished from Lead Storage condition by development of Flaring with an effective chelator. DTPA is the best chelator for lead as well. The same for other heavy metals.

Flare with an effective chelator happens in two patterns: immediate/within 3 days Gd removal Flare, and later, usually > 3 weeks, re-equilibration Flare. If these Flares occur than you have GDD and the only effective treatment is removal, and the best removal; is with DTPA + steroids/antihistamines.

So if a terrible early Flare has occurred this usually reflect too much chelator agent and/or the absence of iv steroids. This therefore is readily correctable byu adjusting both.

If a terrible Flare occurs starting after 10 days (usually after 3 weeks) the primary treatment is earlier chelation. So if an intolerable Flare occurs at 3 weeks, when a person is on a 4 week cycle, then the treatment is to go to a shorter interval: 3 weeks or shorter intervals between chelations. Re-introduction of oral steroids during re-equilibration Flare can also tamp this down. It should be appreciated that re-equilibration is an important occurrence for all chelations for all metals, because this is the best means of depleting the largest durable reservoir of the metal.

The individual must also appreciate that the Flare is not only a marker that they have GDD, but also that they are remobilizing for excretion a significant amount of Gd, which is a great thing.

Many people with GDD opt to stop chelation at a treatment phase where they are not at ? 80% better, and the two most common reasons are i) expense, and ii) they feel they are close enough to normal and remain atleast mildly concerned about more Flares. One I find a tragedy in our heath care system, and 2 I am ok with if the individual is satisfied with their quality of life. One other form of early stoppage that I can understand, even if I don't agree with, since more chelation will improve this situation, is if they develop with chelations, new symptoms that they did not have prior to chelation when GDD first developed, with the moist forgivable situation being new development of vision changes after chelation started. The vast majority of these will resolve with more chelation, but I can understand the fear, and if they are otherwise recovered with many other things with chelation, then ok if they stop.

The biggest avoidable tragedy is stopping very early (for example after one) chelation when you have 10 or more GBCA residues in your body, because the re-equilibration Flare has been too strong from 10-21 days after chelation. This re-equiibration Flare reflects that a large amount of Gd has re-equilibrated as a reflection that the chelation removed an enormous amount of Gd from soft tissues including brain. The correct interpretation iks that there has been great success with chelation and one has to continue on, as the only means to get a near cure.

Fear of Flaring. Subjects need to be well informed that this will occur, and it is important that it occurs, AND if it is too strong it can be better controlled, as I describe above.

Richard Semelka, MD