I have now had the opportunity to communicate with 100s of patients with GDD. One of the things that I have realized is that because of the newness of recognizing the disease, that there are no magic bullets (yet), and that conventional physicians don't seem to know about it, there is an enormous range of discussions and postings on the disease. Many of these are not founded upon any science. Although some may be founded upon anecdotal experience or experience of that individual, that may have actually worked, but this may not be generally applicable.
Below are my recommendations on avoiding mistakes:
1. if you think you have GDD (based on reading my blogs) do not ever get another GBCA administration, no matter who has told you it is ok.
2. Conventional physicians do not often know about the disease. Make sure you have a doctor who understands that GDD exists. You may have to share my blog posts or papers on the subject with them.
3. the only group of practitioners who have recognized the disease (a number before I became involved) are integrative medicine practitioners. I therefore have very high regard for them, but they may not have up to date knowledge about chelators, treatments, etc, so they too have to be informed from my blogs.
4. iv DTPA is the best agent currently to chelate Gd, and should be the only one used. The others will remove some Gd but redistribute much of it elsewhere in the body - because these chelators do not bind strongly to Gd and will re-release it.
5. iv DTPA is the best agent also to remove other heavy metals: lead, mercury, chromium, etc. Do not let a practitioner give you additional chelators: EDTA, DMSA, etc. These will only serve to also redistribute Gd in your body. Use only iv DTPA for all heavy metals.
6. 24 hr urine Gd content is currently the best technique to assess for presence of Gd. No need to spend unnecessary money and time on other tests.
7. Even in patients with GDD, native (unprovoked) 24 hr urine Gd may be within normal limits by 1 year and certainly by 2 years, hence normal 24 hr urine Gd does not mean you do not have disease, provocation may be needed (even this is not fool-proof).
8. the best provocation agent is Ca-DTPA. This is the only agent I would use.
9. I am not adverse to many other thoughts about supplements, alternative therapies (like sauna), but since I am not convinced of their value yet beyond placebo (placebo though is powerful and benefits atleast 20% of subjects) they should neither be dangerous or expensive to try them.
10. Since GDD patients by definition have normal renal function by natural body functions, Gd is continuously eliminated form the body. In addition the host immune reaction also will spontaneously decrease with time (unless additional GBCAs are given). Hence because of these two occurrences there is the natural tendency for subjects to get at least somewhat better. It is very difficult then to be sure if natural improvement of symptoms is happening or response to therapy, especially unusual therapy.
11. Paracelsus is credited with saying: everything in moderation. I have heard from sufferers, when I recommend fluids and alkaline water they have taken 2 gallons/day of this. That multivitamins with antioxidants are helpful, they take 3 times the recommended amount. If you take too much of these things they can be dangerous for you. Err on the side of less. Drink only to the point you are not at all thirsty, do not drink till you feel sick. For most people 1 gallon is the upper limits of the amount you should be drinking.
12. Oral EDTA pills may result in a considerable amount of redistribution of Gd in the body, and it is unclear how much is absorbed in the GI tract. I recommend not taking them.
13. I do not worry that much about amalgem in teeth fillings, mercury being pulled out from them either natively or by chelation.
14. The only data that would definitively apply to GDD patients are controlled studies comparing 100 patients with disease with 100 matched patients without disease (or animal models of GDD animals)- but these do not exist. Be very cautious trying to extrapolate other data (animals, GSC subjects) to GDD subjects.