GDD Treatment: Chelation, Medications, Supplements, Self-Treatment. The Real Risks.
One of my GDD colleagues pointed out to me that there is a huge stir created because of papers written decades ago about DTPA and safety issues. Although brief, I addressed them fully in the prior blog, which for many gave them a huge sigh of relief..... but not so fast..... here I am writing about the actual issues that have to be dealt with regarding safety.
GDD is an immunological disease, my opinion it is a Tcell disease, and further, I belief the primary culprit is the Tissue Resident memory Tcell - the cell identified for Crohn's as the culprit, and I suspect perhaps the majority or all of the autoimmune/ auto-inflammatory diseases.
So I am not worried what a 100 times the human dose of Ca-DTPA will do to a rat, the same as I am not concerned what the 100 times of the human dose of water will do to a rat... this is not to say I ignore it- absolutely not, but I study and think through the issue through.
As essentially a severe Tcell mediated allergic reaction, GDD sufferers have the same issues as other immune (including vaccine) issues. I believe in the importance of vaccines for the great majority of people, but in some individuals they have virtually the opposite effect, instead of being protecting, they are self-destructing. Vaccines are designed to activate a certain cluster of immune cells to behave in a way that destroys what they are intended to destroy. But immune cells exist not only as positive forces but as opposing forces, intrinsic balance, and it is actually remarkable that for the majority of individuals the positive forces of vaccines prevail... But not true for everyone, and research into this has been lacking.
The same is true of immunological drugs used for cancers, for example Keytruda. Many people it has positive immunological effects, but in a sizable minority it has the opposite effect, or at least opposing. That is why severe infection and other malignancies (such as leukemia and lymphoma) are potential lethal adverse effects.
The Real Risks with Effective Chelators (DTPA + future available ones)
Flare reaction is one of my greatest concerns with DTPA chelation for GDD.... but this concern will exist for all effective chelators moving into the future. Remobilizing Gd from tissues will elicit the same symptoms as the original disease created. As I have stated, maybe in 10 blogs, there is a positive to this: it confirms that the disease the person has is related to the metal (or metals) that are being remobilized and not something else, such as ALS. Flare reaction is one of the major, if not major issue that I have developed treatments to manage. This is my greatest concern- and yet not present in any of the old papers on DTPA. Why? It was not appreciated at the time, which I now appreciate: GDD is an immunological disease. In fairness, Plutonium is of concern not as an immunological disease (like Gd, and likely all other nonradioactive heavy metals) but as a cell killing radioactive metal. These early papers just dealt with an agent they used to remove radioactive metals. Using an effective chelator that removes metals, guess what, if it is used in too high dose or too frequently, then electrolyte imbalance will occur that can be lethal. But this is also true of overconsumption of water: water intoxication can be lethal. More relevant to GDD patients also fat-soluble vitamins like A and D, these can be lethal if taken in too high a dose - and unlike with water, this is relatively easy to do. If a person is receiving chelation therapy and are thinking great, no Flare, this mainly means that the chelation treatment is not doing anything. The presence of Flare is essential to show both that Gd is being remobilized (this time out of the system with a high stability chelator) and that you actually have the disease.
Co-existent Immunological Diseases. This is the other major issue that actually really makes me worried. Maybe 1/4 of GDD subjects have the MTHFR gene variant for example, this we cover with using methylated agents. A number have some form of MAST cell activation syndrome, this also can be managed in many cases with concurrent antihistamines and also with the steroids. Co-existent chronic infections, Lyme, EB virus, usually not a problem, sometimes they also need to be treated concurrently. Multiple Chemical Sensitivity Syndrome, many (but not all) can be worked around. Hashimoto's thyroiditis, Type 1 diabetes: keep managing the autoimmune disease. Vaccine reactions, hopefully no conflict, steroids anyways should help. Coexistent other metal deposition diseases, DTPA works for most of them, but patients have to make sure they are following instructions on taking steroids, etc, (Mercury toxicity and Flare creates a paranoia that they don't tend to follow directions).
But there are some individuals who have other immunological disease that may at present be virtually unique to them, or at least not reported in the literature; so rare at a level of 1 in 1 million or 1 in 10 million. GDD has a way of unearthing them. In some of these we may encounter what I describe above with vaccines and immunological drugs, chelation may not work or may aggravate the other unknown lurking demon. This is why I state, perhaps in 5% of GDD individuals, chelation may not work and may cause harm (the latter in maybe < 1%). Small but real. I am though thinking about these rare other conditions, to see if I can figure out how to exorcise these demons. But by far the greatest failure is due to poorly performed chelation, or patients not following directions - the two combined account for 95% of failures.
The commonest issues that vex me then are Flare reaction and coexistent Multiple Chemical Sensitivity Syndrome.
Use of poor chelators are among the highest on my list of real concerns.
Use of high toxicity drugs with no real evidence or scientific basis they should work.
A number of ancillary medications have been tried, and I have constantly doctors and lay people recommend to me drugs. I have learned to proceed cautiously with these. A significant number of GDD subjects have something significantly wrong with their immune system, so to add in a drug that has some complicated pathway of activity, into a system that is already crippled by Gd, is very risky. I have tried some drugs that aught to have benefit, such as hydroxychloroquine (before tried in COVID 19), which I used as a relatively safe drug that has generic effects against autoimmune disease, but I am not sure how much it helped most individuals. Gleevec I would never try, likely a very poor choice drug in these patients from all perspectives: expensive, high toxicity, and no clear reason to expect benefit for the particular immunologic condition of GDD. Rapamycin, more sense than Gleevec but similar issues. Humira, IL 6 inhibitors, more gentle immune system depressing drugs, all uncertain benefit and high cost - that the patient has to pay for. Cellcept may be worth trying in serious cases as may cyclosporine, but I move cautiously with these.
So I remain fixed on the principle treatment is removing the Gd with an agent that acts as a pure metal remover, and hopefully with high specificity for non-native heavy metals- which by the way, HOPO apparently has. Supplemented by conventional immune dampening drugs: steroids and antihistamines, but with constant searching for safer and not expensive immune reaction/ anti-inflammatory drugs and supplements. I do like LDN in some, the family of CBD and THC.
Diet, Supplements, Activity
Despite coming from the school of classically trained allopathic physicians, and bearing the skepticism of nontraditional treatments (all of them, homeopathic, Eastern medicine, herbal, etc) I have learned to embrace what is presently termed integrative medicine. I am still grounded with the logical concept that if something actually works then it has to be provable with randomized controlled studies. But I do not have the time left in life or money to do this with everything, or with almost anything. So instead I have learned to listen to wise GDD patients and other intelligent individuals.
So I am now open to many things, but I stay focused on what I call the Semelka trilogy: cheap enough, makes some scientific sense, and unlikely to do harm.
Most of all I like healthy foods. Our gastrointestinal tract has developed with us and with thousands of species of bacteria to survive together in balance, over 1 million + years. Between the bacteria, intestinal cells and may be 10 enzymatic steps, given the right raw materials they know what to do to make the organism (that is: you) survive. So let them do what they want to do, and do not get into their way. Injecting things iv, bypasses several layers of our intrinsic defenses... and we somehow expect our immune defense system to deal with an attack that they have never experienced in 1 million years of development- direct vascular entrance of invading antigens.
What frightens me is overboard uncontrolled use of supplements. A number of GDD sufferers are on 20, 30, or more supplements. That scares me. Do we know how they are interacting... no. Vitamin D is used as a health product in many preparations. Vitamin D as a fat soluble vitamin (that is difficult for the body to eliminate) is toxic in high doses, similarly so is vitamin A (and E). The vitamin Bs are water soluble so much lower potential for toxicity.
Hence I like the adage: everything in moderation. Which works for most things in life beyond GDD.
I do like foods/supplements which are fundamentally anti-inflammatory in their action: tumeric, spirulina, chlorella.
There is a saying in medicine that a physician who treats himself has a fool for a patient. There is a lot of truth to it, but at some level we all treat ourselves, but with simple things like supplements and certainly with diet, the harm is relatively small. Furthermore, GDD subjects treating themselves with various supplements is an incredibly important resource for me to figure out what works in this very challenging disease. So I follow the adage of Sir William Osler: Doctor listen to you patients, they are telling you the diagnosis... but expand it to: Doctor listen to your patients, they are telling you the treatment... Again within limits.
What frightens me is doctors recommending dangerous drugs like Gleevec, but it takes it to a new level when patients not only take for themselves but recommend to others risky therapies. I have learned to be somewhat disappointed how little doctors will learn about things that are important, like GDD, but what is more scary is patients taking themselves risky drugs- but worse still recommending them to others. The concept of some patients manufacturing their own drugs, and potentially supplying it to others, does give me the creepy feeling of crystal meth labs or lacing heroine with fentanyl. A physician colleague of mine with GDD, also initials RS, warns it is illegal to impersonate a physician. The chelator Emeride comes to mind. It has low stability constant with Gd, so what effectively a subject is doing is administering an agent that can pick up Gd in the skin, but then drop it (redistribution) allowing it to go to other tissues/organs, like the brain.
What I always keep in mind with GDD. The principle treatment is to never get another GBCA agent again. With just 1 lifetime dose of a GBCA, many people will be 'cured' by never getting another GBCA again. So other miracle cures for GDD, if they are shown/ 'proven' in individuals with just 1 lifetime dose, I always think to myself, probably they are just recovering because they are not receiving another GBCA, and this is independent, and perhaps more importantly, despite the treatment they are receiving. I also consider this issue with what I am doing now and in the future.
These issues above are the things that actually worry me.
Richard Semelka, MD