One of my erudite and (not related to this) humorous patients sent me this link to a cautionary report. I had previously written a blog, inspired by emails from another highly intelligent sufferer, about the incorporation of lead into supplement products produced in some Asian countries.
This also ties into a Perspective in the New England Journal of Medicine: Cohen and Bass: Injecting Safety into Supplements - Modernizing the Dietary Supplement Law (NEJM Dec 19, 2019).
After that lengthy introduction, here is the report:
I cannot say that I agree with everything he has written, although I like the article. I especially cannot espouse going off medications that you are on, without actually studying the patient themselves.
I do share skepticism of many things: be they drugs, supplements, or diets. In fact that is why I coined the acronym SALAD some months back. That is why I emphasize the following principles that are probably as close to truths as exists:
1. Healthy diet.... especially if you need it (eg: GDD sufferers). I suggested a combination of South Beach diet/ Mediterranean diet/ and elements from Japanese diet. Essentially healthy foods with little chemical additives. One point I like from the link is getting folate from leafy greens and spinach.
2. Exercise/maintaining range of motion. As I have written for GDD sufferers vigorous exercise is often not healthy (can worsen the condition - may be in part by creating an acidotic state). A few patients have said that they became sick following a GBCA administration because they underwent vigorous exercise shortly after that (eg: a marathon 2 days later).
3. Sunshine (in moderation). The relative lack of it in winter is part of the explanation why GDD seems to get worse in the cold months (in addition to decreased natural sweating), in my opinion.
4. Food items and not pills. I observed previously that health benefits of items (I used the beet as an example) probably relates to the complex entities present in the entire item, even the roughage present, and not an isolated chemical from it. So whole beet and not beet chemical. Substitute in everything else: spinach for example.
5. It is true that most evaluations performed on most drugs (and other things) are limited to 5 years or even 1 year. That is why I am cautious in interpreting results of studies. Almost all studies ignore critical aspects like: "death from all causes" as study endpoints, many end-points are weak.
Particularly relevant to GDD sufferers, and this I have written in multiple blogs, but I am not sure individuals fully understand this:
GDD arises in individuals who have received iv injections of a GBCA often at standard dose, but also following multiple doses at multiple intervals, over periods from days to years, and importantly GDD sufferers have unique properties of their immune system (which also affects the neurological system) that other humans do not have, and no animal model exists and no test-tube exists like it. So animals injected with GBCA and studied up to 1 week later, provides some interesting information, but do not replicate the human clinical situation. The only studies that would directly relate to patients with GDD are studies performed on patients with GDD - all other investigations are surrogates that may differ greatly from the actual events occurring in them. It takes considerable knowledge to know what relates, what does not relate, what may relate, and to what extent - and it differs for every property studied. For example: stability constant (thermodynamic stability) is a test-tube derived property, and does directly apply to the human experience of GDD sufferers. Efficacy of chelators, Flare reactions are ultimately only of direct relevance when they are performed on humans with GDD in the ways that GBCA as administered and with the timelines observed in clinical practice.
My opinion is that often shorter timelines are used, not for an evil purpose (those may be this occurs in some occasions) but because of cost to the manufacturer (or the researchers) and that researchers and manufacturers want to get works published during their careers, or so they can sell the drug. So these are themselves not laudable explanations, but they are not founded on evil (my version of Dante's inferno, level 7,8) but more on pride/vain-glory and greed (Semelka version Dante's level 1 and 3).
6. If I am opposed to drugs, supplements, etc ( I would not say opposed but more cautious) then why do I espouse chelation, FRAME and AMASE. Quite simple: GDD sufferers need this support to get their system to manage the presence of Gd. In 1 million years of evolution humans never had to be exposed to a heavy metal like Gd and particularly administered intravenously (only over the last 100 years with intravenous exposure to anything). So their immune system never had to deal with it over 1 million years of evolution, and now over 30 years of GBCA use they suddenly have to come to grips with/ adapt to it?
Gd has to be removed (and chelation with a strong chelator is the only way to remove Gd [sweating has a small but probably important role] - but not all the Gd, because this probably is impossible, just much of it); while this is happening their immune system has to be dampened (FRAME) to decrease the impulse for repeated re-ignition of the immunological memory; and their immune system has to learn to calm itself down to the residual presence of Gd (AMASE). Because of my concern of drugs I do not see these as treatments in perpetuity, but transitory. I am nervous going beyond 20 with chelations... and certainly by 20 chelations, AMASE has to be instituted, and all along they should be getting FRAME. Treatment eventually needs to be terminated for trial periods to assess adequacy of response. Repeated multiple chelations may end up causing more harm than good; as one goes beyond 20. There are two sides to every coin: strong chelators remove Gd but at the same time each chelation re-ignites immunological memory> beyond 20 it is likely that the re-ignition of memory progressively has a greater effect than the removal of Gd.
It is most likely that all strong chelators will result in substantial Flare, so for those individuals holding out hope for HOPO (I would say I am one of them, but I would not forgo the present need for chelation for something that may or may not happen in the future) if HOPO does come into the clinical arena, it would also need to be paired with immune modulation otherwise Flares will be enormous with it as well (read this sentence again). This would also be true if oral DTPA becomes a reality.
Wisdom, knowledge and experience are essential with this, as with all important things.
Richard Semelka MD Consulting
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