(A PDF of this Viewpoint is available for download.)
This is a re-written version of some emails that I have sent on the subject, so please read it with that in mind. They were addressed to several people in the MRI-Gadolinium Toxicity Support Group.
A word before you read this. I usually do not post this kind of thinking on the support group because many people hold out chelation as their only hope. I do not want to squelch their hope and I do not just want to be negative on it. As you will see below, I have tried it and decided that it is not for me. So I just tell my story. Everyone has to make their own decisions.
Let me provide some background. My last contrast MRI (of 8 in total) was in October 2009 when I had three contrast MRIs within a two-week period. My symptoms started about a month later as only numbness in my big toes. The symptoms progressed, but very slowly. As you will see below, I have done unprovoked urine testing 11 times since exposure, and now, nearly 5 years since exposure, my unprovoked Gadolinium level is only down about 30% from the first test, and is twice the acceptable range limit used by the Mayo clinic.
Back to the Gadolinium symptoms. The numbness moved on to become tingling, creepy crawly feelings, and electric feelings. It moved up my legs all the way up into my trunk and head with some in my hands. Then burning, tingling pain started and made the same slow progression up my body after starting in my feet. Doctors will call this paresthesias. Today, the burning pain is being felt in my quadriceps and in my lower trunk muscles.
I discovered high Gadolinium in my urine in August 2010 from a routine 24-hour urine test by Wellness Doctor #1 while searching for someone to help with my symptoms. I saw all manner of doctors and all of their tests for problems they could treat were negative. They said I was in great shape. I tried Chelation with Wellness Doctor # 1 in February 2011 along with his vitamin and supplement recommendations. I stopped chelation after 5 IV-EDTA treatments because of some acute pain in my flank. (in retrospect, the pain was not likely caused by the Chelation). The paresthesias continued to get stronger and I finally gave in to some pain medications in late 2011 (Neurontin and Nortriptyline). In early 2012, still searching for a cause and some relief, I was diagnosed with Small Fiber Sensory Neuropathy (SFSN) (pain and burning feelings from nerve endings dying, but no muscle disability). All of the normal causes for SFSN were tested for twice and all were negative. The other cause of SFSN is Metal Toxicity, so since I am toxic with Gadolinium, I believe that is the cause, but I have not found a doctor who knows how to validate a cause of SFSN as being from metal toxicity.
Having progressive worsening of my symptoms, I saw Wellness Doctor #2 in another part of the country in April and May of 2013. I believe that he, like Wellness Doctor #1, is a very bright guy, very skilled at wellness in general through chelation, including some experience with removing Gadolinium. He is very knowledgeable and believes strongly in the impact of metal toxicity on all manner of body systems. I trust him. I felt fine both during and after each Chelation. His protocol involves a heavy dose of vitamins and minerals along with each IV CaEDTA treatment. See the description at the end of this paper for details.
But he is very expensive and takes no insurance. I saw him once for a startup appointment and then Chelations twice a week for a total of 8. Each appointment was $250 plus the charges for the testing. So I spent nearly $3,000 in about 6 weeks. I stopped after those 8 both because of the cost and because we were going to be away for a few months.
I am an analytical guy, and I have tracked my unprovoked urine results about every 6 months for the last 4 years. My last contrast MRI was in October 2009. In October 2010, when I discovered the high Gadolinium in a 24-hour unprovoked test, it was 1.0 mcg Gd/24-hours. Over the next 2.5 years, it was only down only a little – to 0.6 mcg Gd/24-hours. Then I did the 8 IV EDTAs with Wellness Doctor #2, ending in May 2013.
The Provoked test done with the last Chelation showed 14.0 mcg Gd/24-hours. (there is no residual chelation effect the next day). So I computed the benefit of Chelation as 14.0/0.6 or 23 to 1, meaning that one IV EDTA treatment was the equivalent of 23 days of normal excretions. So I had to decide if speeding up the excretion by 22 days was worth $250. I decided that it was not. More on my calculations below.
I continued to track my unprovoked Gadolinium in urine tests. The first test, 6 weeks after the last Chelation, was way down, at 0.1 mcg Gd/24-hours. But subsequent unprovoked tests were as follows: 3 months after the Chelation it was back up, to 0.8 mcg Gd/24-hours, 8 months after Chelation it was 0.7 mcg Gd/24-hours, 9 months after Chelation it was 0.8 mcg Gd/24-hours, and 14 months after Chelation it was still 0.8 mcg Gd/24-hours. So my observation was that the Chelation did not have any reduction effect on my normal excretion; my daily excretion actually went up. See the Note below on a possible explanation of the cause of these test results as well as some predictions on future excretion levels.
The other thought that went into my decision not to do any more Chelation is that many people have tried it, and no one has gotten relief from the pain and tingling, and no one has gotten rid of all the Gadolinium. Some have gotten worse symptomatically some have gotten rid of their worst symptoms. My personal view is that I just have too much Gadolinium in me (from 8 contrast MRIs, and getting rid of it (if that could be done) would be too expensive – at $25,000 per year with no proof of success.
One approach I might consider is an oral EDTA that is done daily, and a week’s worth is about equivalent to 2.5 IV Chelations in terms of the amount of EDTA, but costs only about $9. http://www.naturodoc.com/DS-OraChel.htm. I think this might be better idea since it is continuous. Every day. Perhaps not as much risk that an IV EDTA might pull some Gadolinium out of tissue and then drop it before it goes out the kidneys and have it deposit somewhere else. I have tried this product, but it is sublingual and I have mouth tenderness from nerves dying; it burned too much so I stopped. I may try it again.
I will not be doing any more IV Chelation. I do not know if that is right or not. And I think those who are doing Chelation may be doing the right thing. But until someone actually feels better or gets rid of the Gadolinium with Chelation, I will not be doing it any more.
I am also uncertain about what to do. Since being diagnosed with SFSN I have mainly been on a “make a healthy environment for the nerves” kick, taking ALA, NAC, Selenium, and heavy doses of C and the B vitamins along with others – some of which came from the SFSN doctor, and some on recommendation of Wellness Doctor #2. I do not seem to feel better but maybe I would have felt worse if I had not taken them. It could be that the mega vitamins are the cause of my increased pulse and/or the muscle pain. So periodically I go off it all for a while – but it does not seem to affect how I feel, in either direction.
I wish everyone well in gathering information and then charting a course they feel comfortable with.
Note on possible cause of the post-Chelation urine test results.
This thinking is based on similar thinking I have gathered from medical research papers about chelation and the Central Nervous System. Chelation pulls metals from soft tissue. Gadolinium appears to exist in soft tissue but it is also stored in bones. The 8 IV CaEDTA Chelations I received in April/May 2013 likely pulled much of the Gadolinium from my soft tissue. So the test 6 weeks later was very low (or it was simply an erroneous result). But then the Gadolinium that had been stored in the bones worked its way out into the tissue, and the subsequent tests at 3, 8, 9, and 14 months produced results that were even higher than the last test before Chelation. There is no way to know how much is stored in the bones.
Note on Long-term prospects of Gadolinium elimination
Shown at the right is a graph showing my test results with a trend line based on the reduction in average test results from the first year to the last year extended out for another 10 years. (Note I have excluded the test result of 0.1 mcg Gd/24-hours from six-weeks after Chelation since no additional test results were in that range. It was at 44 months after the last contrast MRI) If every $250 IV EDTA Chelation removes an extra 22 days, 100 treatments ($25,000, at 2 per week,) would reduce 2,200 days or about 6 years in 1 year’s time. So at 72 months, the results would be 0.55 mcg Gd/24-hours rather than 0.65 mcg Gd/ 24-hours. Certainly not worth $25,000 of my money considering possible risk factors of two IV EDTAs every week for a year.
Wellness Doctor #2 Chelation and Vitamin Protocol
Pre-Chelation: 500 mg DMSA – 1 per day for 3 days, one day after, 2 days of 6 x 500 mg Glycine
IV Chelation: 3 grams CaEDTA, 3 cc DMPS, about 15 minutes
Vitamins in Drip Bag:
Methylcobalamin (B12) – 1 mg
B-complex 100 – 2 ml
Ascorbic Acid (Vit. C) – 10 gm
Glutathione – 2 gm
Magnesium Chloride – 750 mg
Calcium Gluconate – .93 mEq
Co Q 10 – 1 mg
Prescribed Vitamins and Supplements:
Perque Choline Citrate – 2/day
Perque Magnesium Plus Guard 2/day
Perque Life Guard Tabsules2/day
Perque Potent C Guard Powder 2,000 mg – 2/day
Indicated I should continue with Omega 3 Fish Oil, Alpha Lipoic Acid, and Co Q 10
This is not intended to be medical advice or an evaluation of treatments, it is just my story on Chelation.