I am posting for all individuals to see what my current recommendations for treatment are at the present time (Sept 2018) , and what areas are still in evolution. This also reveals my concerns about various issues.
A number of early stage GDD patients get severe Flare from the Ca-/Zn- protocol. My opinion is this protocol pulls out Gd through the blood system in too much quantity and too quickly in them. Hence for these individuals, a gentler chelation of only Zn-DTPA and with the 5ml ampule injected into a 1 litre bag of normal saline and a slow 2 hr drip infusion. Just the one session and repeated weekly x 5. The Ca-/Zn- protocol will have a high unacceptance rate in these patients, just because of the severity of the Flare.
I also think that a well considered vitamin/mineral supplement is also important.
For patients who received macrocyclics GBCAs (Gadavist, Prohance, Dotarem) , I also would use just the gentle chelation and for them immune modulation is likely critical. I think the least expensive and hopefully effective starting point is to combine the Zn-DTPA drip chelation with a low dose Naltrexone (LDN) therapy, the latter to dampen the auto-immune-type response. After 1 chelation, it seems reasonable to check whether Zn-DTPA increased Gd in urine or not. If it doesn't then clearly immune modulation becomes the principal treatment. A number of these people who received macrocyclic and are treated within 1 yr (early stage) seem to do quite poorly after standard Ca-/Zn- chelation protocol. I am not sure if this is Flare just added to the natural history of the disease, or whether this is predominantly an exaggerated Flare reaction that becomes long-lasting/permanent. So at this stage I want experts who are responsive to collaboration give me feed-back and also to share experience about ancillary methods (LDN, Trental, CBD, med marijuana, specific supplement regimen) that scientifically makes sense and seems to work.
There is of course an infinite number of permutations, so it is also critical to limit the number of protocols to what makes the most sense::
1) The standard Ca-/Zn protocol for GDD patients who are: i) atleast 1 yr out from GBCA injection, and ii) from linear agents (Omniscan, Optimark, Magnevist, Multihance, Eovist).
2) The standard protocol for GSC subjects (having undergone multiple GBCAs, but are not sick, but worried). By definition they should not get a Flare.
3) The Zn-only drip technique for everyone early stage (3-6 months after injection). 6 months to 1 yr is a gray zone to me.. If you are concerned about Flare then should use Zn-only.
4) Macrocyclics only GBCA (Gadavist, Prohance, Dotarem) GDD patients. Provocation with Zn-only drip chelation and 24 hr urine Gd pre and post to see if Gd in urine is elevated post. If chelation does not increase urine Gd (two attempts, 1 week apart should probably be attempted), then host immune modulation may be the only therapy to add to a regimen based on supportive measures: fluids, alkaline fluids, supplements. This fourth category needs to be assessed carefully... maybe they should still get the Zn-DTPA only protocol, even if 2 urine measures did not show appreciable Gd increase, anyways for 5 sessions, if for no other reason that so far we have only limited other treatments. Unless of course we develop a very effective and safe (and affordable) immune modulation. More macrocyclics are being used than before, therefore we may find most of our patients are in this group in the future, so sharing experience among experts will be critical to devise adequate therapy.
At this point I think what makes the most sense is to use the Zn-only drip therapy for patients in categories 3 and 4, as the major modification from standard protocol.
The obvious thing that all GDD sufferers must do is keep fluid intake high, and some of the fluid must be alkaline (I like alkaline water, some practitioners use Mg-bicarbonate).
I would like to, if possible, have a standardized supplement regimen that can be justified scientifically. This may not be possible as many practitioners like their own blend, but we will see.
Then immune modulation - I am thinking centers that already are using LDN for auto-immune disease, should also be using it with GDD. I have mentioned other methods of immune modulation in prior blogs.