Re-equilibration Flare: Need for Atleast 5 Repeat Chelations at 1-4 Week Intervals with DTPA.
In recent blogs I have focused on the re-equilibration Flare, which essentially is the biological finding of le Chatelier's Principle: everything strives to be in equilibrium. With chelation with DTPA, the least tightly bound Gd is removed in largest volume, this is in skin, bound to intravascular white cells, to a lesser extent soft organs, so re-establish equilibrium Gd moves from bone (the most tightly bound) back to skin and other reservoirs where more Gd was removed from. Re-equilibration likely begins immediately following chelation, but becomes noticeable at 2 weeks and continues to increase till it reaches a plateau at 3 months. From there it seems 1/3 it will decrease, 1/3 stays the same, and 1/3 it will increase. Re-equilibration Flare is noticeable in everyone for atleast 5 chelation sessions, at which time individuals who have received 1 GBCA injection, and in some up to 3 GBCA injections, the amount of Gd left that undergoes re-equilibration is sufficiently low that it may no longer be clinically noticeable. The number of chelations to avoid significant re-equilibration Flare are more in those who have had multipole GBCA injections: 10 chelation sessions... or more.
The most important keys to avoiding severe re-equilibration Flare are:
undergoing atleast 5 chelation sessions.
chelation sessions must be spaced between 1-4 weeks, and should not exceed 5 weeks for these sessions.
Additional approaches for individuals of lower weight (most of thin females) is to use a lesser amount of chelator, such as 1/2 dose Ca- or Zn-DTPA.
The majority of times the re-equilibration Flare involves the same symptoms that the subject originally experienced, but it is not uncommon to be in a different distribution. Very common is rib pain (where red marrow persists in adults) and it is not uncommon to have left rib pain at presentation and then the Flare is with right rib pain. Bone pain in general is the symptom that persists the longest with successful chelation, which is not surprising as bone is both the largest reservoir and the one with the tightest bond to Gd.
As I have posted in earlier posts, but it seems critical to repeat here. To undergo chelation successfully a subject needs to commit to atleast 5 chelation sessions spaced 1-4 weeks apart. Some individuals with minimal symptoms and just 1 GBCA injection can get away with less, but their symptoms are the guide to that.
In my experience having treated at least 200 patients and with a total of atleast 1000 chelations. Re-equilibration Flare in bone is extremely common, especially when delays between chelation sessions occur. Essentially 100% of subjects will experience this. Re-equilibration Flare of a different set of symptoms not originally experienced in GDD is rare, may be < 5% of individuals experience this. New experience of vision issues not previously identified by the sufferer I recall in just 1 subject or 0.5% This is an interesting phenomenon since vision improvement in GDD generally starts occurring very early on, often with the first chelation.
I can well imagine that sudden development of vision issues, not previously experienced in GDD can be a frightening development in the DTPA chelation session program. It is rare, but all my experience with GDD and 'optimized' chelation therapy suggests that this should resolve with further chelations. Likely in individuals in this situation lesser amount of chelator, for a macrocyclic GBCA it may be Ca-DTPA is a better choice since Ca is less tightly bound to DTPA than Zn- is, and one wants maximal opportunity to remove a macrocyclic agent. So 1/2 dose Ca-DTPA spaced 1-2 weeks apart (4 weeks at the most) with iv and oral steroids and oral antihistamines, should resolve even this.
Other individuals may stop chelation very early on, because the Flare is too severe, but this almost always reflects some combination of the following: too much chelator, too little steroid, and too long interval between chelations. These 3 points, as I recently posted can be readily modified and the subject must be informed and understand that by modifying these points can resolve substantially the issue with Flare.
In many respects overcoming the fear of worsening re-equilibration symptoms is challenging. I liken it to the scene in Indiana Jones and the Last Crusade where towards the end of the movie Indiana struggles with the Leap from the Lion's Head, and he describes it as a leap of Faith, as he steps into what could be the abyss of a deep chasm .
My recommendation is to take this Leap. But the provider must absolutely know what they are doing. Low dose DTPA, chelation 1-2 weeks, concurrent steroids.
I have had to write this blog after just now seeing the you-tube of Kate's, describing her experience with chelation. Sauna complicated the picture, and may have been the reason for vision change, but she did not receive 5 chelations and they were not spaced 1-4 weeks apart. It is also difficult to know if the issue is with chelation or with the natural progression of the disease. Kate also references a person who had 1 chelation after having received 15 GBCA injections, which is a complete formula for disaster.
So I interpret her video as reflecting (unavoidable) insufficient timing between chelations, and too few chelations, with probably sauna being the inciting cause (which is also not necessarily a mistake to try sauna- except I have blogged on a number of occasions not to undergo sauna if you have lost the ability to sweat which she describes she experienced) .
This takes a fair amount of time for me to stamp out fires that are based on not having undergone a correct chelation regimen. I do agree that new development of eye issues is a problem and I can see (no pun intended) why it would give someone pause to continue chelation. But there are a numb er of variables in her account that worked against her.
There are a few issues she raises that to me are still in the realm of the Heisen-Semelka uncertainty principles: high on the list is that in my opinion with Dotarem/Clariscan and Prohance the Gd retained in the body is primarily, if not totally, in the intact GBCA - so how does DTPA remove it?
I think DTPA (biologically assisted) is levering out of the interstitial tissues fully intact of these agents and putting them back in circulation where most of these agents then are filtered by the kidneys out into the urine. All the linear agents and also Gadavist, most of the retained Gd binds with DTPA and is eliminated through the kidneys. In all cases the superior stability of DTPA with Gd, than other currently available chelators is why DTPA should be used and no other of these chelators.
Full disclosure, I know and like Kate very much, and think that she has the potential to be an extremely important influencer on the subject of GBCAs and GDD. I do understand the fear of taking the Leap of Faith, and if you are doing well enough, maybe you do not need to do what I recommend... but the critical thing is: if you are doing well enough, and only you know that.
I also for a number of reasons do hold out optimism for HOPO, and one of the things I like the most is that it is oral, and therefore is much easier for a wide range of individuals to take. HOPO has a higher stability with Gd than DTPA.
Final point, I also have a bit of the Louis Pasteur quality in myself, and if I subject other people to something, if reasonable I like to experience it myself. So I have received DTPA on 4 separate occasions, full dose, single shot, no 1 liter normal saline, a simple saline flush. I am aware of some brave explorers who are keen on self-created HOPO compound and others who are keen on OSR. I do not recommend sufferers in general do this for a number of reasons. I will post on these subjects in future blogs.
So bottom line:
It is critical in essentially everyone with 'serious' GDD that they get DTPA (presently the best chelator), spaced 1-4 weeks apart, concurrent steroids, at least 5 chelations, and the amount of chelator at a level that they can tolerate. To do this correctly as a treating professional requires knowledge and attention to nuanced detail. If you have not done atleast this (or more number of chelation sessions if you have received more than 1 GBCA injection, and ofcourse even a number of just 1 GBCA injections). If you have not done this, it is not fair to say that DTPA chelation has somehow failed you. It is otherwise the same as you have taken too short a course of antibiotics for osteomyelitis or TB, or too short a course of 'effective' chemotherapy for malignancy. If you have not had enough treatment you cannot say that the therapy has failed you, but you can say: taking this amount of drug (1 week antiTB drugs) I still have TB; or 1 chelation with DTPA and I still have GDD and now with bad re-equilibration Flare.
Sometimes if you have the ability to work with a true expert, taking the Leap of Faith may be important for you.