GDD as I have written in many blogs, my theory is that it is fundamentally an immune system disorder with close disorder of the nervous system. I have postulated that the immune system issue is also responsible. for the nervous system condition, but this is not a sine qua non, they may be some form of conjoint twin, and not the immune system driving the neurological findings
This blog revisits the subject with an over-arching umbrella, and will touch on subjects dealt more fully in other blogs- so read all of them.
There are a considerable number of conditions, in one blog I called them Oddfellow conditions, that are systemic in nature, and I have come to the understanding that many are probably quite related, and maybe also nearly the same thing. The basis appears to be what I have originally termed, and still like the term: Selective Immune System Increased Responsiveness (SISIR). More recently I have also used the term Immune system dysregulation which is a pre-existent term in broad usage. I think my term may be more accurate as it also lends itself to the companion term: Selective Immune System Decreased Responsiveness. (SISDR), which malignancy/cancer being the poster child, but severe infection (where direct pathogen activity, and cytokine storm, is not the dominant injury mechanism) is the other major. cause, Autoimmune disease is the poster child for SISIR.
And Goldilocks - I like the reference because: i) I like the fable, and ii) it applies to many issues but certainly to the subject of the immune system, GDD, the Oddfellow conditions, and treatment: everything needs to be in balance> just right. Otherwise things go awry. So there is an imbalance (probably in T-Helper / T-Suppressor cell balance, and other cell action/inaction balances) with the immune system to begin with. Immune cells and activity out of balance, then treatment has to restore the correct balance, but to be careful not to overcorrect, and injuries accrue from imbalance in the other direction. Cautious, measured treatment to achieve the Goldilocks effect.
I have previously named and described other conditions, off the top of my head there are probably 10 or so, in different languages probably another 10- and this means there are probably 100 or so. GDD itself has different strains of the conditions. None of this should be surprising for immune system dysregulation as there are atleast 10. major cell types, 1000 different steps... plenty of things can go wrong. Hence plenty of syndrome/disease types and variants... but all immune system related.
Most recently, a dentist, Glenn Gittelson, and I have been in close and intense communication. Glenn is the world authority on the facial manifestations of Chronic Regional Pain Syndrome, and we discussed the great similarity and almost certainly the overlap between these conditions. There are also lengthy diagnostic criteria for CRPS. and ofcourse a diet.
By chance, although probably fated, I recently read and listened to the presentation of the Leaky Bowel Syndrome, and there is a diet for that. A number of GDD sufferers have also been told they have Mitochondrial disease, and there is a diet for that too.
The problem I have with the diets is that some diets conflict with eachother, and also describe that certain things are bad, but for other diseases and health in general these banned items are actually apparently very good. But all these diets have very good elements. Tomatoes are bad in the leaky bowel syndrome, but are protective against prostate cancer in other research. CRPS doesn't like coffee, but coffee also described to prevent neurodegenerative disease.
So with conflicted food types (that one diet says bad, another good), that I (or another individual) may like, the tried and true principle of 'everything in moderation' makes sense. If you have CRPS but really love coffee, and can't drink tea in substitution, maybe 1 cup of coffee to ward off Alzheimer's, but not 5 cups of coffee that would exasperate CRPS, and tea the rest of the time (also for its health benefits).
Easiest is the focus on entities without conflict: for example, the leaky bowel diet strongly recommends cloves (crushed cloves more palatable) for its unmatched antioxidant properties, that doesn't seem to conflict with other diets. That sounds good to me then, so I recommend it now in the SALAD diet.
Another topic I have described before, but it now appears repeatedly in the media, the critical importance of randomized controlled studies in science. I strongly adhere to this principle... but for most things, especially dietary, since each variable would need to be individually controlled, it is virtually impossible to perform, especially when most people, eg who have GDD, are taking a whole host of supplements and other things.
I am not sure to what extent any of them help, some probably do not help, and some do cause harm.
So these are a few of my medical wisdom-sense commandments:
1. When available, pay most heed to randomized controlled trials, especially for major drugs (like Hydroxychloroquine, recently in the news). Bear in mind, and this is also true, there is often a bias, which may be unconscious, when a company is sponsoring the study. Whatever the company is selling- generally performs the best. I learned this by reading the Iodine contrast papers (used in CT) effect on Contrast Media Induced Acute Kidney Injury (CM-AKI). I think there is now an even more modern term, but this was formerly known as Contrast Induced Nephropathy (CIN- an acronym I quite like). The concept of renaming I also like, because it reminds me of the term: the dinosaur formerly known as Brontosaurus. Funny and harmlessly foolish.
2. Since most dietary supplements and other physical treatments have not been carefully studied by pt 1 above, I recommend following the Semelka trilogy: if it is not expensive, seems to make some scientific sense, and is likely very safe, it may be reasonable to try. Hence I now endorse the idea of crushed cloves, which I have not recommended before. I can understand how it can happen, but it is remarkable how a number of GDD sufferers are on elaborate supplement regimens. But be careful, many chemicals are not benign, so this may be doing more harm than good. I do like the idea of hyperbaric oxygen - but not if you are paying too much- for instance not more than $100/hour. The controlled studies on dietary supplements that seem the most promising, have generally shown no benefit (eg:vit D3). I am not sure if I believe those results in a blanket sense, as I think many things may benefit a well defined group, although they may not benefit everyone.
3. A number of sicknesses can get better on their own. GDD after just 1 GBCA administration can get better on its own. COVID can get better on its own. Quite often, for example with both of these entities, spontaneous recovery is more common than remaining sick from the entity. Do not mistake your recovery from illness, as being due to a drug; as the explanation for getting better may be that you got better on your own- you may be have gotten better inspite of the drug, and not because of it. Hence the importance of randomized controlled studies. That is the primary reason I want patients with recent onset GDD to wait 3 months before starting specific medical treatment, as they may get better on their own with simple diet and activity modifications.
4. The power of belief (the placebo effect).
These above 4 points I have frequently made, but are worth repeating. The below is also modifications but with distillation and new information.
As I have studied GDD, and looked into these other entities, my opinion is that in the modern age, while many of these oddfellow conditions exist as independent entities, and certainly in the past perhaps solely as independent entities, with the widespread use of MRI to investigate diseases of all kinds, especially that may be neurological in nature, most often these diseases are now seen as a combination with GDD, where GDD may be the principle factor making the individual sick. Where this is good, is that compared to all of them, GDD may be the most treatable condition (DTPA-chelation + FRAME drugs, followed by AMASE, followed by self-healing)... but this is generally true if only 1 or only a few GBCA administrations have been performed. Unfortunately I see a number of individuals who have undergone multiple GBCA injections. Each time getting worse, and each time a little (or quite a lot) less likely to get good recovery from GDD treatment. But sometimes I am amazed how well some advanced disease individuals do with treatment.
As mentioned at the start, the combination of immune system and neurologic disease is common and at times universal with Oddfellow conditions. Some of the Oddfellow conditions seem primarily neurological (Fibromyalgia) while others more immunological (multiple chemical sensitivity syndrome).
So: if you had started with some Oddfellow condition, then underwent GBCA-enhanced MRI to investigate, and you became more sick after the GBCA enhanced MRI, then you now likely have GDD as well as the original condition. If you get more GBCA-enhanced studies, and in close temporal association with the MRI, become progressively worse each time, then this is essentially definitive evidence of GDD, and quite likely the principle disease has now become GDD.
I have also previously described that GDD and chronic viral disease (eg Lyme disease) can coexist. GDD has a high association with autoimmune disease, high association with MCSS, and high potency antibiotics immediately before GBCA injection also predispose to it.
How is all of this happening? It relates back to immune system dysregulation. This is often an underlying genetic condition. I have written in many blogs that GDD is almost certainly gene-based, it is also likely that these other Oddfellow conditions are gene-based, and if not the same genes, closely associated genes, perhaps as a gene cluster. So the gene for Fibromyalgia may be the same or closely linked to GDD- so this may be how I will find the gene for GDD, by someone else finding the gene for one of these related conditions.
Using then an example to illustrate the above:
These Oddfellow syndromes/diseases possess as a central feature, to a great extent, dysregulation of some part of the immune system, and hence to begin with are sensitive to, and certainly become sensitized to, other immune system disorders, such as other autoimmune disease or GDD
CRPS can certainly exist on its own, and most often appears mainly neurological but also with considerable immune system issues: redness, swelling. Once acquired, the individual is sensitized to other afflictions of the immune system, based on dysregulation- hence predelicts the individual to acquire GDD following GBCA-enhanced MRI. I do not believe that 100% of CRPS patients who undergo GBCA-enhanced MRI will acquire GDD, but it may be in the order of 30%.
Similarly, Lyme disease occurs on its own. It can cause immune system dysregulation based on the chronic inflammation, hence the individual is sensitized to develop GDD after a GBCA injection.
GDD occurs on its own, and to date most individuals I have treated are GDD alone. The next most common groups have been: GDD with pre-existent autoimmune disease, followed in frequency by GDD and MCSS. However it is clear to me that many individuals are then sensitized to other autoimmune/immune dysregulation conditions. So GDD can be the initiating condition, but most often it is another condition that has first arisen, and GBCA-enhanced MRI has caused GDD on top of their pre-existent disease. So Lyme disease will predispose to GDD, and GDD will predispose to Lyme disease. I worry this is also the case with COVID-19.
These are the critical bullet points:
* If you get new symptoms after receiving a GBCA injection, you may have GDD superimposed on the oddfellow condition you already have.
* Where this is important: effective treatment exists for GDD, and most often not for other oddfellow conditions. If you have GDD the principle treatment is to never get another GBCA injection again. In addition, GDD may be the most treatable condition that you have. So you may be exceedingly sick from CRPS and GDD or from Fibromyalgia and GDD, but GDD may be the more treatable. So treatment should start for GDD, and see what is left after treating GDD (it may be as few as 3 chelation sessions, but 10 sessions is probably a more realistic number for very sick individuals: symptoms untouched after 10 chelations probably reflect the other (original) condition). One of my favorite patients, who follows blogs/tweets of her favorite celebrities, has told me that in Lady Gaga 's blogs/tweets she describes her personal devastation of having fibromyalgia, but my patient astutely observed that she described her symptoms became worse after a GBCA-enhanced MRI study. So she may or may not have fibromyalgia, depending if the first symptoms preceded MRI or followed MRI, but almost certainly has GDD. If I knew how to contact her I would tell her the same advice I give to everyone with an Oddfellow condition that got worse after GBCA-enhanced MRI. Start by treating for GDD... that may be the only treatment you need. GDD is treatable, and the other disease may not be. In fact though, the AMASE portion of treatment effectively also treats most other conditions such as MCSS- so comprehensive treatment of GDD treats essentially everything else. Some diseases though require specific management of their manifestations in addition to GDD treatment. This can be done concurrently, for example with CRPS + GDD, as the treatments do not conflict and are complementary. This I will explore with Dr Gittelson.
One final warning: most of the complementary and crucial treatments for GDD result in dampening the immune system. This may be ill-advised at the present time withe the ongoing COVID pandemic... If you are in desperate need of treatment, then DTPA chelation without Frame, or with greatly reduced Frame is possible at the present time. I would advise recent onset GDD patients to wait some time, if they can't, to accept that with reduced Frame drugs Flare will be severe following chelation.
I cannot emphasize enough that proper treatment of GDD requires the currently best available chelator DTPA, with concurrent FRAME drugs, and followed by AMASE drugs for severe disease. If it is not done this way, treatment can add to the disaster of GDD rather than ameliorate it. All of these treatments are in evolution, as better, more specific versions almost certainly exist or can be developed.
Richard Semelka MD Consulting
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