HOPO, the vagaries of money, imperfect knowledge, and trying to survive.
I am trying to slowly and cautiously get a better handle on the use of HOPO. I have tried it on myself and it does remove Gd shown on 24 hr urine measurements, pre- and post-chelation (Post starting at 1 hour post taking the oral agent). Since people have on their own been using it in a wild west fashion, I feel a responsibility for everyone in the Gad tox community, and therefore I have thought that I better start looking into it, to try to figure out the best way to use it.
So what is true for iv DTPA (and actually true by extension for all chelation for all things) is that in people who are actually sick from whatever it is, # 1 treatment is to stop getting whatever is toxic to you, and # 2 is effective and safe total body removal, which really means reduction in total body content. In the process of removal there are 3 pain-events that occur: removal Flare, redistribution Flare (the chelator picking up and dropping off the toxin right away back in the body), and re-equilibration Flare (the toxin moving from more durable reservoirs to less durable reservoirs, some time after chelation). Total body removal does require understanding and making use of the re-equilibration effect. I have this fairly well figured out for iv DTPA, but I want to/ need to figure this out for oral HOPO, which should be identical to use of any effective oral chelator (for anything). Also it is important to recognize, if you are sick from something you will need to concurrently take something to calm the immune system down from reacting too extremely to the removal process. I use methylprednisolone combined with an antihistamine.
The expected, probably most common, trouble that individuals taking HOPO run into, is not handling removal Flare or re-equilibration Flare well. HOPO has very high stability with Gd, so redistribution should be very minimal. The next is sensitivity to this chemical, since many people have some form of multiple chemical sensitivity syndrome. Thirdly is contamination with some foreign, potentially dangerous (eg: uranium), entity. If getting from a reliable source this should not happen... hopefully.
Many who have had just 1 lifetime dose of GBCA may not need specific removal, but just follow treatment #1: don't expose yourself to the toxin again, and follow healthy detoxification life changes. Many others need chelation, but it has to be expertly done. The harsh reality is that many cannot afford iv treatment (travel expense, clinic expense), feel they can't travel, and/or want to avoid more needles. Oral chelation therapy, with an effective chelator, may be their only option to get better. This is especially true if they have had many GBCA injections, since the ballpark number of iv DTPA chelations most require is a multiple of 5 times the number of GBCA injections, so if you have had 10 GBCA injections, to get near cure you probably have to count on 50 well performed iv DTPA chelation, and if treatment alone is $1,000 per 2-day session, then that is $50,000, and travel and hotel another $50,000, then the total is $100,000. Since treatment is still not covered by insurance, how many sufferers can afford that, especially since for many of them, they have lost their job because of GDD? Maybe less than 1%.
So I face the practical reality, oral therapy may be necessary for most people, but it is imperative that careful determination of how it is best done is essential. So I am slowly taking thoughtful consideration of how things are working out with people experimenting on their own, to look for insights. There are many people in intense, constant pain from GDD and who have received multiple GBCA injections. This is likely the only option they have to receive any level of relief and improvement. Yes ofcourse I would much prefer if people are using an FDA-approved product, which is already parcelled so biological availability is enhanced. Mostly I would prefer if treatment to all sufferers was free to them.
All current users are determining on their own how to enhance GI absorption using some form of oleate, and probably other chemicals, which ofcourse is less than ideal, but they likely will result in improved understanding of what works well. I don't judge or dismiss people who are trying their best to get better, by whatever means available to them.... and instead prefer to help them.
I do not know what the mechanism of some individuals intense negative reaction to foreign-made HOPO. I think individuals who have extreme Multiple Chemical Sensitivity Syndrome have to be extremely cautious with considering taking or actually taking it.
In an imperfect world, with imperfect knowledge, and a number of sufferers impecunious and see themselves (correctly so) as victims and not beneficiaries of formal Western health care, this may be their only option. I cannot avoid this truth. Ultimately, I think maximum effective and affordable therapy for GDD will require the start of treatment a series of 3 or so iv chelation sessions using an optimal chelator (currently DTPA is the best we have) since the Gd was administered by iv route. Follow this with correctly performed oral chelation with an effective, safe oral chelator (this may be HOPO or an oral form of DTPA or similar). Oral chelation may be a lifelong endeavor, and an oral heavy metal chelator be the multivitamin-similar we all take.
Richard Semelka, MD