Neurotoxin summary

[Guest guest]

A poster on another list did a nice, succinct summary

of Shoemaker's neurotoxin testing/treatment at my

request and gave me permission to quote it here. I

thought the info would be helpful. I'm really geared,

as with the secondary porphyria, to look at herxing

from the perspective of what can be tested for and

either ruled out or treated. Like Tony, I appreciate

having some science and clinical assessment tools. If

we have some ways to sort out " herxing " from

inadequate abx (Tony's findings), secondary porphyria,

neurotoxin, poorly cleared endotoxin, cytokine storm,

etc, we might have more tools available to us than

low-dosing, etc.

Jim

From:

ME-CFS-FMS_infections

Hi Jim -

" Could you summarize the ways you are minimizing herx

via the methods in Mold Warriors? It would help a lot

of us to know. I've done activated charcoal and the

vitamin C flush for neurtoxins. Both help, but not as

significantly as you note. "

Will do what I can. Just bear with me. Still in a fog

here.

The herx reaction involves MMP9 (that's

metalloproteinase-9). This is the enzyme that delivers

substances from the within the blood vessels to the

tissues. The blood vessels are not easily broached,

and in fact, that is their job - to hang on to your

blood so it can be pumped throughout the body. When

you are exposed to biotoxins, such as those produced

by certain forms of fungus or spirochetes, MMP9

skyrockets. One of the things MMP9 moves is cytokines

- the inflammatory factors that make you feel so sick,

and the very ones we lack the ability to regulate like

normal people do. These cytokines not only create the

plaque formation that looks like MS in the joints, but

they also get into the muscles where they produces the

delayed recovery from activity, and into the lungs,

where you get the coughing and shortness of breath.

(All the usual symptoms we know so damnably well!) In

Lyme, for example, when you take antibiotics, tumor

necrosis factor and MMP9 skyrocket and you're off to

the races.

These elements, TNF and MMP9, can jump within hours,

which produces your basic crash. More MMP9 and TNF =

much more ability to carry more cytokines to parts of

the body where they can make you feel miserable.

Disturb the usual mechanism of the illness, as you do

when you attempt to treat it, and cytokine activity

goes into high gear.

[Note: This is just a part of the underlying works,

but all I can give for the moment. I'm more than happy

to answer what questions I can, because it helps me

improve my own understanding. I want very much to

learn this material very thoroughly so I can

eventually teach the material in simplified form to

many more of my fellow brain-foggers. But meanwhile, I

really do recommend reading Shoemaker's books! I'm

just a student and patient, myself.]

That said, I'll move on to a description of Actos

(pioglitazone), which is used to control the herx. I

was somewhat surprised to need it myself, but

Shoemaker typically uses this for Lyme, so is very

experienced with its use. This is a well-established

drug used for diabetes. It blocks cytokine nuclear

receptor activity and lowers elevated levels of

leptin, MMP9, and PAI-1. And as you might have

suspected, if you are taking a drug that controls

diabetes, there are some dietary controls you have to

be aware of, though I must say, I'm eating very well.

(Leptin is very closely associated with control of

insulin and therefore blood sugar levels.) The

tradeoff is more than worth it.

There's a great deal more to the how and why of it

all, but this is the gist of it. You knock down the

cytokines and MMP9 to get the herx under control. Very

few physicians use MMP9 as a measure of anything at

all, so they aren't seeing any objective measure of

just how bad you feel. And you know how that goes.

With most of them, if they can't see it on a lab test,

it either doesn't exist or isn't that important. Here

we have both a set of objective tests (TNF and MMP9)

and a treatment that works.

According to my understanding, anything you do to

disturb the toxins (any of the various " flushes " being

used) that actually have the intended ultimate effect

would make you sick via the additional cytokine

activity, while those that don't make you sick

probably aren't working sufficiently well to have the

desired effect. It's a catch-22, and a nasty one. You

HAVE to be able to flush more biotoxins than you take

on, or you not only do not become more well, you only

become more and more poisoned. (In theory, you could

probably herx mildly forever, yet never actually detox

sufficiently to make it count for anything - which is

a scenario we have already lived, and it isn't much of

a life, right?) So the only solution is to fix the

herx so that you can tolerate a medicine serious

enough to get the job done right.

http://chronicneurotoxins.com

Dr. Shoemaker's site, contains full explanations

online VCS tests, and references to Shoemaker's

research and papers

http://moldwarriors.com

Dr. Shoemaker's books " Desperation Medicine " and " Mold

Warriors " can be purchased here. These are suitable

for patients and physicians alike. Doc Shoe's quite a

storyteller.

I hope this is of some help to you.

J.

[Guest guest]

Jim,

I am familiar with Schoemaker's neurotoxin approach, I have not been impressed by the results obtained by the people who have tried his actos/cholestyramine protocol.

I have not tried it myself.

Someone else ( Noble in the UK) has put tgthr an anti MMP9 anti proinflammatory cytokine regimen using several components incl feverfew, melatonin, DHEA, soy isoflavones, and an abx, I tried it, following the instructions religiously but I ended up MUCH MUCH worse after only a few hours on it (as you say "Disturb the usual mechanism of the illness, as you dowhen you attempt to treat it, and cytokine activity goes into high gear.").

I am trying to work out what test would best be done to see if secondary porphyria is something that needs to be considered in my case but the tests seem to go after genetic defects mainly. I see D wheldon tested his wife's urine for porphobilinogen, I wonder if this would be considered indicative of secondary treatment induced porphyria. Does anybody know how this is tested? I have urine dipsticks that say they test urobilinogen and bilirubin but no porphobilinogen

Quote from 's updates:

"Her urine was found to contain abnormally elevated levels of porphobilinogen, and this while she was on an antiporphyria regimen (high fluid input, high carbohydrate diet, avoidance of red meat and alcohol, activated charcoal twice a day;) this is evidence that the reaction has at least some elements of a secondary porphyria."

Nelly

[infections] Neurotoxin summary

A poster on another list did a nice, succinct summaryof Shoemaker's neurotoxin testing/treatment at myrequest and gave me permission to quote it here. Ithought the info would be helpful. I'm really geared,as with the secondary porphyria, to look at herxingfrom the perspective of what can be tested for andeither ruled out or treated. Like Tony, I appreciatehaving some science and clinical assessment tools. Ifwe have some ways to sort out "herxing" frominadequate abx (Tony's findings), secondary porphyria,neurotoxin, poorly cleared endotoxin, cytokine storm,etc, we might have more tools available to us thanlow-dosing, etc.JimFrom:ME-CFS-FMS_infectionsHi Jim -"Could you summarize the ways you are minimizing herxvia the methods in Mold Warriors? It would help a lotof us to know. I've done activated charcoal and thevitamin C flush for neurtoxins. Both help, but not assignificantly as you note."Will do what I can. Just bear with me. Still in a foghere. The herx reaction involves MMP9 (that'smetalloproteinase-9). This is the enzyme that deliverssubstances from the within the blood vessels to thetissues. The blood vessels are not easily broached,and in fact, that is their job - to hang on to yourblood so it can be pumped throughout the body. Whenyou are exposed to biotoxins, such as those producedby certain forms of fungus or spirochetes, MMP9skyrockets. One of the things MMP9 moves is cytokines- the inflammatory factors that make you feel so sick,and the very ones we lack the ability to regulate likenormal people do. These cytokines not only create theplaque formation that looks like MS in the joints, butthey also get into the muscles where they produces thedelayed recovery from activity, and into the lungs,where you get the coughing and shortness of breath.(All the usual symptoms we know so damnably well!) InLyme, for example, when you take antibiotics, tumornecrosis factor and MMP9 skyrocket and you're off tothe races. These elements, TNF and MMP9, can jump within hours,which produces your basic crash. More MMP9 and TNF =much more ability to carry more cytokines to parts ofthe body where they can make you feel miserable. Disturb the usual mechanism of the illness, as you dowhen you attempt to treat it, and cytokine activitygoes into high gear. [Note: This is just a part of the underlying works,but all I can give for the moment. I'm more than happyto answer what questions I can, because it helps meimprove my own understanding. I want very much tolearn this material very thoroughly so I caneventually teach the material in simplified form tomany more of my fellow brain-foggers. But meanwhile, Ireally do recommend reading Shoemaker's books! I'mjust a student and patient, myself.] That said, I'll move on to a description of Actos(pioglitazone), which is used to control the herx. Iwas somewhat surprised to need it myself, butShoemaker typically uses this for Lyme, so is veryexperienced with its use. This is a well-establisheddrug used for diabetes. It blocks cytokine nuclearreceptor activity and lowers elevated levels ofleptin, MMP9, and PAI-1. And as you might havesuspected, if you are taking a drug that controlsdiabetes, there are some dietary controls you have tobe aware of, though I must say, I'm eating very well.(Leptin is very closely associated with control ofinsulin and therefore blood sugar levels.) Thetradeoff is more than worth it. There's a great deal more to the how and why of itall, but this is the gist of it. You knock down thecytokines and MMP9 to get the herx under control. Veryfew physicians use MMP9 as a measure of anything atall, so they aren't seeing any objective measure ofjust how bad you feel. And you know how that goes.With most of them, if they can't see it on a lab test,it either doesn't exist or isn't that important. Herewe have both a set of objective tests (TNF and MMP9)and a treatment that works. According to my understanding, anything you do todisturb the toxins (any of the various "flushes" beingused) that actually have the intended ultimate effectwould make you sick via the additional cytokineactivity, while those that don't make you sickprobably aren't working sufficiently well to have thedesired effect. It's a catch-22, and a nasty one. YouHAVE to be able to flush more biotoxins than you takeon, or you not only do not become more well, you onlybecome more and more poisoned. (In theory, you couldprobably herx mildly forever, yet never actually detoxsufficiently to make it count for anything - which isa scenario we have already lived, and it isn't much ofa life, right?) So the only solution is to fix theherx so that you can tolerate a medicine seriousenough to get the job done right. http://chronicneurotoxins.comDr. Shoemaker's site, contains full explanationsonline VCS tests, and references to Shoemaker'sresearch and papershttp://moldwarriors.comDr. Shoemaker's books "Desperation Medicine" and "MoldWarriors" can be purchased here. These are suitablefor patients and physicians alike. Doc Shoe's quite astoryteller. I hope this is of some help to you.J.