This post expands on co-existence of GDD and chronic infections- most common are Lyme and EBV. It is probably a chicken and egg thing (which one came first) I think probably the infection, which has been quarantined and isolated in your body.... till GDD came along. This is a work in progress- I believe prophylactic treatment for the chronic infection while chelating/treating GDD.
You are in an even trickier situation, as having received a macrocyclic GBCA and developed GDD. For some reason(s) macrocyclic-caused GDD seems a little worse. It may simply be that, most individuals with macrocyclic GBCA-induced GDD are more early stage (disease is more recent) than those with linear-GBCA induced GDD, since the common use of macrocyclics is a recent event, and recent onset GDD is tricky to treat, as concurrent management of host response is essential. I worry that in part it may reflect that chelation is less effective with macrocyclics as the chelate is still (largely) intact, whereas a sizable proportion of linear agents are disassociated and therefore more amenable to be picked up by the chelator. There may ofcourse even be additional reasons macrocyclics may be worse, such as types of cytokines they elicit.
It seems though that chelation is still the best we have for treatment of GDD, and so the foundation of treatment remains chelation. DTPA is the best currently available chelator.
Any drug that may be part of management of the autoimmune-like disease of GDD, one has to be vigilant on its effects in you. How you have managed the issues with LDN has been very smart. First seeing if the base it is administered in, is causing issues. In the end, if after 1 or 2 months, something is not working for you (even though it may work for many people) it is smart to stop using it. LDN works for many people, but not all. Pentoxifyline works for many people, but not all. Gabapentin or Nortryptyline work in many people for pins and needles, head pain, and other neuralgia symptoms, but not all. CBD oil works in many people for fasciculations, pins ands needles, but not all. The side effects for a number out-weigh the potential benefit. So I would probably give things atleast a 1 month trial (maybe 2) > if it seems to make you worse, not more than a 1 month trial seems prudent. Overall, it seems the least issues seem to be with CBD oil. I am not sure if medical marijuana may be better still.
For sure you should be following all my recommendations for at home treatments for GDD, also the recommendation: everything in moderation.
For tricky cases like yours, coming here to be treated may make the most sense, but I realize for the great majority of individuals this is not economically feasible. There is atleast 1 center in the Netherlands that uses DTPA to treat GDD, which may be the closest to you- I did reach out to them that I wanted to send European patients to them because of cost and proximity for the sufferers, but they did not respond. I find that curious and concerning when a treatment center does not respond to me in my position (this happens to me too- for those of you [maybe all of you] that this has happened to when trying to speak to doctors/other health care people). There is also atleast one treatment center in Germany. It seems most treating centers do things their own way - which also makes me nervous, as GDD is a tricky disease and needs attention to detail.
At the very least, keep working with the at-home and diet (SALAD) recommendations that I have written on, and will continue to do so. You may be one of the lucky individuals that your immune system teaches itself to stop reacting violently to the presence of Gd. With only 1 macrocyclic injection there is likely very little Gd remaining in your body- so calming the host response down is crucial.
Sunshine, sweating, salty sea water, playing around in the waves (salt water Na-Gd exchange), maybe the sand knocking you around removing some of the top layer of (Gd-containing) epidermis (only small waves, or no waves, for more disabled GDD patients). Refreshments with half and half alkaline water and gatorade (or similar electrolyte/mineral-containing beverage), kefir and yogurt for breakfast and snacks, blueberries, glutathione, clarinex, singulair, CBD oil...and all the other little things I mention. Summer is coming upon us (maybe in a couple of months in the UK). Think positively (also important for healing), and make this the summer of getting yourself better.
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