Celine Dion and Stiff Person Syndrome: How would I manage her care.
I received a lot of positive response for describing how I would manage the care of Christina Hall, mainly because the various issues that have been described about her in the news, actually pertains to many other people's own condition. Also although for most of us our sphere of individuals involved closely in our lives is like the number of electron rings in an atom, so most of us have a sphere of influence of perhaps 1 electron orbit (Hydrogen) and maybe if we are successful a Carbon atom (2 electon orbits), but we would have to imagine that a celebrity like Celine Dion must have the number of electron orbits of... Gadolinium... (4 electron orbits). One would hope that one of the individuals in that extensive electron cloud of Celine's is paying attention to the literature, especially if the world authority on Gadolinium Deposition Disease (perhaps by extension, modern treatment of all heavy metals).. yes I said that.. speaks.
So, someone comes to see me, or contacts me with stiffness, pain, and muscle fasciculations, ofcourse the first thing I ask them: did this start within a month or so of having received a Gadolinium injection? Ofcourse the next thing in the back of my mind is other heavy metals.
There may be nothing easier to do than to test for heavy metals in all of medicine - and yet it is almost never done, and when it is done, the practitioner does not understand that Deposition Disease has to be associated with a Flare post chelation with an effective chelator. I always pair prechelation (native urine) with post-chelation urine values, because I am in the situation that I am looking at treatment. An extraordinarily easy test to do is 24 hr urine for a panel of heavy metals (not just Gd as some labs do). I use Doctors Data, but other labs also test for a panel of heavy metals, so looking at 20 heavy metals. The reality is that most people who contact me have a fairly clear-cut history of GDD (that they had to figure out themselves, often not aided but impeded by their health care workers). They received the injection and often within minutes and if not minutes within a week develop the symptoms of GDD. Since the likelihood for most people I see is so high that it is GDD, I never give them a pure challenge with the most powerful chelator currently available, full dose iv Ca-DTPA. because the great majority will experience a 10/10 severity of Flare and never return for more chelation, tragically ironically thinking that this has done them more harm than good (a few times though 1 full strength chelation without immune dampening can result in more harm than good). So essentially almost everyone now I start with 1/2 dose Zn-DTPA as a 1 day chelation and give concurrent hypersensitivity drug regimen and steroid taper. This generally results in a Flare of 3/10, and a Flare of 3 is enough support for making the diagnosis.
A very few people I really have no idea what is going on, and if they do not seem overtly crazy (read Mercury Deposition Disease) I will give them full dose Ca-DTPA, and look what happens from pre-chelation 24 hr urine to 24 hour urine post chelation. I always stil give them atleast a low dose of oral steroid taper. I start the 24 hr post after the patient has one urination post iv chelation completed (the first urination will contain mainly nonchelation-experienced urine) and collect essentially beginning 1 hour after chelation... no later than that. So I see what metal, and how much of it, is in the urine pre-chelation (everyone has atleast 6 heavy metals, and everyone has lead), and what goes up post chelation, and by how much. This tells me if the DTPA molecule will work well as a chelator. Importantly I then see if they Flare. No Flare, no toxicity to Gd and select other heavy metals. If there is no Gd history but lots of Lead prechelation and Lead goes up a lot post chelation (it always does with DTPA) and the individual Flares in symptoms - eg: more skin or bone pain, or more fasciculations. Then I know they have Lead Deposition Disease, and the chelator is working to get it out.
Now turning back to Stiff Person Syndrome. I think historically most cases probably were due to Cadmium toxicity (Cadmium Deposition Disease)> Now if it is Cadmium I would have to do some research and consultation with pharmacist experts in metal chelation, to come up with the best strategy. I am not sure if Ca-DTPA is the best available for Cadmium. For example I may have to apply for compassionate use for a chelator that is not currently FDA approved. Lead also can cause a stiff person type picture. If it is Lead then we are also home-free because DTPA is the best chelator available for Lead. The easiest for me would be if it was Gadolinium.
So if the end result Stiff Parson is due to the Root Cause of Gd or Lead what we are doing already is the best strategy, and if another metal of concern goes way up post chelation then we have that covered as well. If it is yet another metal that does not go way up post chelation I would do more research... I would not act like many do as a 15th century Alchemist and just randomly use some chelator. I would do modern research into effective chelators for other metals, but may also have to rely on surrogates.
If Celine has Gd- or Lead Deposition Disease, after 5 chelations there would be noticeable improvement, with good fortune maybe 15 would be sufficient. But chelation has to be done how we do it now, otherwise it can be a disaster. One critical aspect, chelations should not exceed 4 weeks apart, generally 2-3 weeks apart is ideal, 1 and 4 weeks also fine. > 4 weeks apart and re-equilibration Flare can be monumental.
If it is none of these heavy metals... unfortunately we would be stuck managing Stiff Person Syndrome and not treating to cure a heavy metal Deposition Disease... I hope for her sake I am right, and also for her sake, someone in her electron cloud is doing research and reading this blog.
Richard Semelka, MD