Extreme sensitivity to Gd in GDD. Management approach.
I often inform patients who tell me either their family doesn't believe them that they have GDD, or their doctors don't believe them, and these doubters can't understand how people can react to GBCA, especially along the lines that I describe: it is an immunological reaction that has unleashed a toxic reaction. I tell them, well if people can react to peanuts, an organic legume (I didn't want to get into the not a nut discussion. Then they say well it is not the same type of immune reaction, and I have to say correct it is not the same but it is still an immune reaction... Peanut is a mast cell reaction, GDD is primarily a tissue resident T cell reaction.... but they are both immune reactions...
That is not the point of this blog. The focus of this blog is to strike another similarity between the reactions, people with GDD can have the full range of sensitivity to Gd (one can also add in that there are mixed reactions (acute hypersensitivity + GDD /// GDD + GISF[NSF]) etc.
The subject of this blog is that there are varying severity of GDD. This blog focuses on extreme sensitivity.. Many GDD sufferers who are part of online groups fear getting a Flare reaction from DTPA chelation. The Flare reaction, like many things is good and bad. It is bad because it can be extreme, which is why it is critical to start chelation treatment with someone who is very experienced with the nuances of treatment. But at the same time it is good, because whereas many centers may diagnose people with GDD as having everything from a psychiatric disorder to persistent Covid to fibromyalgia, to ALS, etc... Only GDD will have a Flare reaction (read prior posts on types of Flare reaction) to DTPA in individuals who have received a GBCA. Note, all heavy metals that are removed by DTPA (have high stability constant) will develop a Flare reaction to DTPA. So Lead toxicity (Lead deposition Disease) will also have symptom Flare.
So the Flare to DTPA is the most important diagnostic tool to confirm the diagnosis. In particular the combination of Gd removal Flare week 1;//symptom improvement week 2; // Gd re-equilibration Flare week 3 is the most important confirmatory test for this Heavy Metal Deposition. There is some variation to this (this is where experience of the practitioner comes in), but for the great majority this is very consistent. Over continued regular followup chelations the Flares diminish and the middle range of improvement expands.
Now we get to the meat of this blog. What about individuals who have extreme sensitivity to the presence of Gd, the equivalence of eating one peanut and dying from anaphylaxis. What about them.
These are the critical points:
If you Flare (your symptoms get worse) from receiving DTPA then you have GDD.
The only specific effective treatment for GDD is presently DTPA chelation
The only FDA-approved way to get better is with serial chelation with DTPA.
Approximately 1 % of GDD sufferers have extreme sensitivity to Gd. The above 3 stages of response then can be overshadowed by Flare. So Gd removal Flare dominates initially and blends directly into re-equilibration Flare, overshadowing any symptom improvement in the middle range, The tendency then is to stop chelation because it seems to be making you worse. But read again the 3 points above, the only presently available effective treatment is serial chelation with DTPA,
The best approach at the present time is to reduce the amount of chelator used, increase the amount of iv steroid use, and keep riding the bucking bronco. So whereas I use the general formula for every GBCA injection you need 5 chelation sessions, with extreme Gd sensitivity, and dropping the amount of chelator, this 5 may become 10 or 20 or 30 chelations sessions
One option that I may consider to do on myself if I was in this situation is to take low dose daily effective oral chelator like HOPO, maybe with a couple days gap (weekends off).
Unlike the peanut, the Gd is buried in you. The concept of extreme sensitivity has made me also consider how much Gd can a person tolerate being within them. GSC subjects, probably a lot (maybe until the camel back breaking straw), the average GDD sufferer can have manageable symptoms if 10 - 20% of the Gd that had been retained is still left behind, the extreme sensitivity individual may only tolerate 1% of the retained Gd to be left in the body. This is the explanation of why so many more DTPA chelations are necessary.
With time, as an extreme sufferer amount of retained Gd drops below 20% )my estimate) then the 3 separate phases will appear, in particular the middle phase of improvement.
Take home points:
If you have a Flare from DTPA this is a good thing, it means you have GDD and it is treatable with DTPA chelation, almost all other options are untreatable.
If you have extreme sensitivity to Gd and therefore one continuous Flare is apparent following DTPA for the first 5 (or 10 or 15) chelation sessions, hold onto the bucking bronco, and keep riding it out. Low dose chelator, higher dose steroid (may have to consider the addition of rapamycin to substitute for the methylprednisolone taper, if the steroid dose is too high), and probably still at 2-3 week intervals for chelation. Eventually things will improve, This is what you need to do to get out of the hell of extreme GDD. I, on myself, at some point may consider to substitute the DTPA for an effective oral chelator. And this I may have to take for the rest of my life.
Richard Semelka, MD