I think one of a number of problems that GDD sufferers experience is that physicians do not acknowledge the failure of the safety of GBCAs. Denial and avoidance is the strategy most often used. This is a huge mistake, and I was outraged when one of my patients told me that she went to a pain clinic and wanted the MD to have her disease GDD recognized in her chart, and not the disease of fibromyalgia which they assigned her. Apparently he responded to her, I know what you are up to, and stormed out of the room... I think he said some more words.
In completing medical school we recite the Hippocratic oath: Primum non Nocere (first do no harm). We should as the next oath recite the words of Sir William Osler: Doctors Listen to your patients. They are telling you their diagnosis.
Clearly most doctors have not heard or understood those words.
But this even pertains to individuals who recognize the disease and treat patients. I myself have gone through evolutionary steps in this, and continue to do so, as the scope of the disease is enormous.
I will step through some of these and show how I have modified my thinking, and what issues are clear and what are evolving (current thinking April 2019):
1. Ca-DTPA is the most effective chelator clinically available now, with Zn-DTPA being the second best, and should be used in concert. This was what I first published on, and remains true till today. They not only pick up Gd, but atleast as important, they also hang onto Gd better than other agents. This also is true for the other heavy metals: lead, arsenic, chromium, etc. They pick these up better than the other chelators.
Effective is one thing, but clinical benefit to patients is another.
Current experience has informed me that chelation in patients who have disease less than 6 months, and independently have received a macrocyclic, concurrent approaches to manage Flare is essential.
There are 3 approaches that make sense:
i) concurrent extended hypersensitivity protocol- FRAME (my preference).
ii) use of only Zn-DTPA (may not be sufficient in the ones most likely to Flare: macrocyclics and at 3 months).
iii) half dose Ca-/Zn-DTPA (maybe the next step if FRAME is not sufficient- but can be an initial approach, especially if used with Zn-DTPA only approach.
2. Management of the host response. I have termed elements AMASE. This remains a work in progress. Hence I am all-in in natural strategies, and many I have written about: alkaline water, sweating, supplements, diet. Low strength, low adverse reaction drugs I prefer to start with: Clarinex and Singulair as a combination am/pm, LDN, CBD oil. Medical marijuana if available. Enteric coated ASA for pain.
Other drugs used have variable success: pentoxifylline (trental) seems reasonable, and gabapentin. We are looking at other drugs.
Future: DMARD drugs targeted to the exact cytokines that a patient elaborates pre- and post-chelation. True tailored medicine.
3. The single best treatment for everyone, if you have symptoms that are consistent with GDD, is to never get another GBCA again - as I have written them. Paying attention that B- symptoms can be quite extensive and varied (such as the full range of GI symptoms).
I have learned from failures:
1. I thought GBCAs were always very safe in everyone with normal kidney function - I have learned that they are not, and am striving to figure out who are at greatest risk - and have written on that: white women with pre-existent autoimmune disease the highest risk, followed by men with the same description. To preventively identify them. To treat them.
2. I thought, as with disease like infection and cancer that the sooner you treat, and treat aggressively, the better for the patient. I have learned that if you don't manage the host response, soon aggressive treatment can be a Flare- disaster. This I learned quickly.
3. I have learned to pay attention to the patients response to chelation. Changes may be needed to shorten the interval, lengthen the interval, use FRAME, increase FRAME, and now will also look at decreasing dose (I thank Gail Montani as the person who first mentioned this to me).
There should be no (very few) thing as a treatment failure, unfortunately in the modern era many physicians try to avoid these individuals, but the patient and the practitioner need to see this as treatment challenges and not failures, and work together to solve them:
Doctors, listen to your patients, they are telling you their diagnosis.
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