Andrew Maxwell's Theory of .... a lot

[Jyoti]

I came across this theoretical paper describing possible mechanisms whereby a host of my own symptoms and their progression, one into the next, were described quite convincingly. This will likely be of interest to a subset of us, those with connective tissue/CCI concerns. In his patient population he is seeing the onset factor as primarily environmental, whereas I remain convinced that mine was infectious, but so much of his description/flow chart of how things degenerate matches my own course, and I would presume, that of some of the rest of us.

I believe Drs Kaufman and Ruhoy have been looking at this manifestation of ME and beyond as well. The paper is long, but I found reading even the first 20 pages revelatory.

Abstract
We describe a clinical phenotype we have characterized and have been presenting over the past
half-decade whereby the combination of a genetically vulnerable host and a chronic
inflammatory state such as might occur from a chronic environmental toxic exposure leads to
activation of mast cells and development of at least a localized hypermobility state including
instability of anatomy in the craniofacio-cervical region. A cascade of events occurs from both
the mast cell activation and unstable craniofacio-cervical structures that causes dysautonomia
and hypopnea. These two phenomena lead to a large differential in daytime and nighttime blood
carbon dioxide levels that cause an exaggerated increase in nighttime cerebral blood flow
requiring rapid displacement of cerebrospinal fluid (CSF). The same unstable anatomy also
prevents normal CSF and lymphatic drainage thereby causing an increase in intracranial
pressure (the Spiky Phase). CSF pressure then pops-off through cranial nerve sheaths most
notably through the olfactory nerve into sinus mucosa and into facial sinuses whereby it leaks
out through the nose and ears, into facial tissue, or down the throat (the Leaky Phase). We call
this Spiky-Leaky Syndrome and it may explain the vast collection of signs and symptoms co-
segregating in these patients and also such other phenomena as cervical medullary syndrome,
pseudotumor cerebri, idiopathic intracranial hypertension without papilledema, and occult
tethered cord. Detailed data and theory are given as to why this has been difficult to detect to
date as well as potential environmental toxins that may be responsible. Potential evaluations and
therapies are posited

https://www.researchgate.net/public...sautonomia_The_Theory_of_Spiky-Leaky_Syndrome