For the most part I have used the term Flare to describe the phenomenon of increased symptomatology following chelation therapy. I have also described this as reflecting mobilization of Gd, in essence the more Gd mobilized (which is a great thing) the more intense the Flare (which is a b ad thing and must be controlled). The term Flare-up has also been used for this process. The full description of this form of Flare is: positive treatment response Flare.
This should be distinguished from worsening of the condition in. an episodic fashion, also termed Flare, and this is the general usage when describing many autoimmune diseases where Flare describes that the disease is undergoing episodic worsening (episodic can be long-lasting or permanent). In the past with GDD I have termed this simply disease worsening or disease progression. As Flare is however commonly used in this circumstance, this form of Flare more correctly should be described as: disease intensification Flare.
In general I have used Flare to represent positive treatment response Flare, and not the latter circumstance.
There remains widespread lack of understanding of positive treatment response Flare, how it arises, who is most likely to get severe Flare, and how to manage it. This has resulted in even many patient-experts discouraging individuals from undergoing chelation, when infact chelation is an essential part of treatment for the disease.
How it arises:
as with any drug, or any experience with external antigens (bee stings, peanut allergy) there remains some level of uncertainty of when severe reactions will arises, as this does reflect certain nuances of an individual's unique immune system. That being said, there are individuals who the vast majority will experience severe Flare in the setting of good biochemical response to chelation (ie: a lot of Gd is being removed). So strong chelators for Gd (eg:DTPA are much more likely to result in Flare, then medium chelators (EDTA) and poor chelators (DMSA) since more Gd is mobilized by strong chelators, and more Gd mobilization, more Flare.
Who gets it:
1. Recent onset GDD. I still recommend not treating before 3 months of disease onset, but certainly < 6 months severe Flare is likely to occur. This can be enormously mitigated by the use of an extended hypersensitivity protocol (EHP). If you have recent onset of GDD and are planning to undergo chelation, if the chelation center does not know what an EHP is, and is not planning to use it - this can be an enormous problem for the sufferer. This is 100% essential. If used, what was once a terrible situation of disease, now actually is perhaps the best setting: early treatment of disease with DTPA chelation and EHP.
2. severe disease with clinically obvious debilitation (eg: extreme difficulty walking, obvious tissue wasting or stiffening) often in the setting of chronic disease with multiple prior GBCA administrations- often with these administrations performed to try to figure out what the patient has- when it has been GDD for a long time. Chelation with EHP is essential, but is likely not sufficient for the great majority of these individuals. It is like any form of advanced serious disease: rheumatoid arthritis with severe joint disease and deformity, advanced cancer, etc. The likelihood of complete recovery is slim. All elements of an EHP must be used and not skipped because of patient preference. Immune system modulation with approaches such as we use (AMASE), and ultimately likely high potency anticytokine and perhaps cytodestructive (eg: methotrexate) chemotherapy in the most severe cases. Our team is currently actively focused on the cytokine aspects of the disease.
How to manage it:
All patients we see get EHP, unless they strongly object to some elements- however it generally results in a much less successful outcome if individuals refuse some agents, so we have become more dogmatic in stating that all elements must be taken, than we have been in the past. Many patients go on to AMASE (autoimmune medications and supplement envelope). Rare patients are on anticytokine drugs, as this is still a work in progress.
Richard Semelka MD Consulting
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