Fw: [] Re: RnaseL

[Guest guest]

> Last September her autonomic nervous system went

> bonkers -- all sorts of arrhythmias, BP fluctuation, loss of body

temp

> control ... presently she can't read, can't watch a video, listen

to

> music ... it's too much input. Overloads her. This is

neurotoxicity.

> I think this has to be dealt with somehow before we can add more

toxins

> into the mix. I assume that the MCS that's developed over the past

5 or

> 6 years reflects the inability to keep bad stuff out, and to get

rid of

> it once it's in.

I had similar things, as did many at Incline according to my near-

namesake . Toxicity can mean almost anything but I take

it you mean the presence of harmful molecules from outside the body -

or of molecules that are being produced by the body in the normal way

but not excreted in the normal way.

But perhaps it could also be inflammation. This involves " toxic "

molecules like TNFa and IFNg, but these always break down very

rapidly and it would be a great shock if anyone had trouble disposing

of them; its their continual high production that causes the agony of

inflammation.

So, consider inflammation as a second possibility alongside that of a

buildup of something. Either way you can get the overload you

describe. There are powerful immunosuppressants such as

corticosteroids that can be used conjunctively with antimicrobial

treatment. This would tend to have some effect both on inflammation

provoked by dispersal of antigen from dead organisms, and also, I

*think* (at least at some dose level) on most kinds of inflammatory

reactions to the medication itself (except the most severe kind which

is anaphylaxis). This is probably something that should be worked out

with a doctor. And some would say immunosuppression could prevent

killing of microbes and result in " water-treading. " I would guess

that that may indeed be conceivable in a given case. However I know

of clinicians I respect who do use immunosuppression. Its also been

used on a *continuous* basis for MAC infection associated with

terminal AIDS in a couple of studies. The patients' symptoms were

improved during the months to few years that they had remaining. That

doesnt mean their infectious load didnt increase - but probably not

by much. The point is that it didnt cause a fulminant MAC eruption.

Personally I think the bacteriology/antibacteriology of MAC might be

very similar to what might be involved in any cases of CFS, RA,

lupus, etc that might be caused by bacteria - but that is only

speculation at this point, and I am only a BA in Biology.

A completely different thing one might consider - especially if

antimicrobial treatment cant be instituted or fails to work after

some years of treatment - is immunoablation with autologous stem cell

transplant. You can look on pubmed and see the astounding effects

being accomplished with this in many immune diseases. I have looked

all over and cant seem to find any report of this procedure ever

being done for CFS (whether intentionally, or adventitiously when the

procedure is being used to treat cancer). Yet it is statistically

almost certain that some CFS patients have been treated this way for

cancer. This may mean that it has a low or zero rate of strong

benefit for CFS patients. I find that confusing since I tend to

expect the pathogenesis of CFS to be pretty similar to those of

lupus, RA, etc.

The chances of getting a doc to do this for you for CFS are probably

very close to zero, I would guess, tho I am not expert there. No CFS

doc is going to up and do this, but if someone gave you a referal to

a group that does this, maybe you might be able to beg for

a " compassionate experiment " or something. It also has certain

failure rates and death rates, and of course it could turn out to be

a disease-worsening disaster if CFS's nature is nothing like the

nature of lupus, RA, etc.

How does it work? I really dont know. The people doing it think they

are killing of lines of patient cells that attack the patient

(autoimmune lymphocytes). That is certainly a major possibility at

this point, but the pathogenic cells that are killed might

conceivably instead be (over?)reacting to foreign antigens such as

microbes. It is also conceivable that the procedure serves to

eradicate or decimate microbes, but that needs detail work before it

can be appraised. In regards to my describing this procedure... I

should disclose that I am extremely curious about the results this

procedure would have on CFS, so I could have a bit of a bias.

[Guest guest]

If she's truly reactive to all abx, how about things like chlorella and charcoal and iodine for some detoxing? Even Miso? Can she tolerate those? Then perhaps some probiotics (yogurt's good) to help her break down the stuff she ingests so that she can make some room and tolerate some antimicrobials? You've probably already tried all these things, but just thought I'd throw them out there. I'd try to help her relieve some of her toxic load with anti-inflammatories and detoxing agents (natural and gentle) and then try to knock down that microbial load a bit. She could start with natural things that have antimicrobial and antiinflammatory properties, and work her way up to harder hitting stuff? It's surprising how many things can be helpful, i.e. things like lemon juice, etc. I'd start very gentle and very natural since she's already in such a reactive state. Either that, or get her into a hospital where they can

monitor her 24/7 and give her some serious treatment, but I know how likely that is. Even things like epson salt baths and iodine washes can reduce the bacterial numbers a bit and may help her feel a little better. Plus, mino is a drug that many people react very badly to. I can't take it at all without getting extremely sick. That's a bad one to guage her ability to take abx. Has she tried others? Like Cipro or penicillin vk? If she tries one, and gets an immediate boost from it, then you'd know that amx could help her along quite a bit. penny Bob Grommes <bob@...> wrote: Well now some 8 to 10 years too late we have figured out that this might be a useful band-wagon, too. The problem for my wife is that she is so desperately ill with MCS on top of CFS, that she is reactive to almost everything. For example, just 50 mg of mino causes her *violent* stomach pain that takes weeks to blow over. We have a doctor who wants to treat her for Lyme and myco, but feels like his hands are tied because virtually everything he gives her makes her ill in other ways. Even healthy people struggle with die-off toxins; my wife can scarcely detox at all.Anyone else have this experience where their detox pathways are shot, no elbow room for anything? Anyone know a way

out?--Bobpjeanneus wrote: I think the problem we are up against is that even smart doctors like Cheney do only routine lab tests for various infections. In the mid 90s he and others looked at the mycoplasma issue. I know a surgeon from Knoxville who was Cheney's patient. He was one of the few who talked Cheney into trying a lot of antibiotics on him. Unfortunately for him and a lot of the rest of us this patient did not recover on antibiotics. I was treated by Dr. Flechas at this same time. He was involved with Aristo Vojdani in a research study. I tested positive by PCR for the mycoplasma, got antibiotics, knew I had to take them a couple of years at least and began to recover. If I had quit the antibiotics at the end of 4 months I would still be like the patients I saw for years

at the Charlotte support groups - dragging in, walking with canes, in wheel chairs, spaced out, on various brain altering drugs trying desperately to keep going from one hour to the next.Did Cheney et al test their patients? Do they? Well, just to give you one clue - ask them what lab they use to test all their cfs and fms patients for borrelia. How much do you want to bet it is Quest or LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It makes me sick to realize what is being done to this community who have a chronic infection of one sort or another.Tony, move over, I want to join your camp.a

[Guest guest]

There's at least one Mexican clinic doing the stem cell treatments, for around $10k a pop. And Dr. Darryl See, in L.A. who's had a rocky history and has been quite maligned (justifiably, I can't say), was experimenting with stem cell treatments in pwc, but he had to do it out of the states. He has a chronic illness himself, so he's motivated. penny <usenethod@...> wrote: > Last September her autonomic nervous system went > bonkers -- all sorts of

arrhythmias, BP fluctuation, loss of body temp > control ... presently she can't read, can't watch a video, listen to > music ... it's too much input. Overloads her. This is neurotoxicity. > I think this has to be dealt with somehow before we can add more toxins > into the mix. I assume that the MCS that's developed over the past 5 or > 6 years reflects the inability to keep bad stuff out, and to get rid of > it once it's in.I had similar things, as did many at Incline according to my near-namesake . Toxicity can mean almost anything but I take it you mean the presence of harmful molecules from outside the body - or of molecules that are being produced by the body in the normal way but not excreted in the normal way. But perhaps it could also be inflammation. This involves "toxic" molecules like TNFa and IFNg, but these always break down very rapidly and it

would be a great shock if anyone had trouble disposing of them; its their continual high production that causes the agony of inflammation.So, consider inflammation as a second possibility alongside that of a buildup of something. Either way you can get the overload you describe. There are powerful immunosuppressants such as corticosteroids that can be used conjunctively with antimicrobial treatment. This would tend to have some effect both on inflammation provoked by dispersal of antigen from dead organisms, and also, I *think* (at least at some dose level) on most kinds of inflammatory reactions to the medication itself (except the most severe kind which is anaphylaxis). This is probably something that should be worked out with a doctor. And some would say immunosuppression could prevent killing of microbes and result in "water-treading." I would guess that that may indeed be conceivable in a given

case. However I know of clinicians I respect who do use immunosuppression. Its also been used on a *continuous* basis for MAC infection associated with terminal AIDS in a couple of studies. The patients' symptoms were improved during the months to few years that they had remaining. That doesnt mean their infectious load didnt increase - but probably not by much. The point is that it didnt cause a fulminant MAC eruption. Personally I think the bacteriology/antibacteriology of MAC might be very similar to what might be involved in any cases of CFS, RA, lupus, etc that might be caused by bacteria - but that is only speculation at this point, and I am only a BA in Biology.A completely different thing one might consider - especially if antimicrobial treatment cant be instituted or fails to work after some years of treatment - is immunoablation with autologous stem cell transplant. You can look on pubmed and see

the astounding effects being accomplished with this in many immune diseases. I have looked all over and cant seem to find any report of this procedure ever being done for CFS (whether intentionally, or adventitiously when the procedure is being used to treat cancer). Yet it is statistically almost certain that some CFS patients have been treated this way for cancer. This may mean that it has a low or zero rate of strong benefit for CFS patients. I find that confusing since I tend to expect the pathogenesis of CFS to be pretty similar to those of lupus, RA, etc.The chances of getting a doc to do this for you for CFS are probably very close to zero, I would guess, tho I am not expert there. No CFS doc is going to up and do this, but if someone gave you a referal to a group that does this, maybe you might be able to beg for a "compassionate experiment" or something. It also has certain failure rates and death

rates, and of course it could turn out to be a disease-worsening disaster if CFS's nature is nothing like the nature of lupus, RA, etc.How does it work? I really dont know. The people doing it think they are killing of lines of patient cells that attack the patient (autoimmune lymphocytes). That is certainly a major possibility at this point, but the pathogenic cells that are killed might conceivably instead be (over?)reacting to foreign antigens such as microbes. It is also conceivable that the procedure serves to eradicate or decimate microbes, but that needs detail work before it can be appraised. In regards to my describing this procedure... I should disclose that I am extremely curious about the results this procedure would have on CFS, so I could have a bit of a bias.

[Guest guest]

Penny:

You're right, all these things have been tried.

Yes my fantasy is a clinic or hospital that is truly MCS-safe, treates

multiple chronic infections and can correctly micromanage this stuff.

Dream on!

All:

I really appreciate your responses, just unable to keep up with &

respond in real time right now. Partly because I'm also marinating my

own Lyme in abx ...

Best,

--Bob

Penny Houle wrote:

If she's truly reactive to all abx, how about things like

chlorella and charcoal and iodine for some detoxing? Even Miso? Can she

tolerate those? Then perhaps some probiotics (yogurt's good) to help

her break down the stuff she ingests so that she can make some room and

tolerate some antimicrobials?

You've probably already tried all these things, but just thought

I'd throw them out there. I'd try to help her relieve some of her toxic

load with anti-inflammatories and detoxing agents (natural and gentle)

and then try to knock down that microbial load a bit. She could start

with natural things that have antimicrobial and antiinflammatory

properties, and work her way up to harder hitting stuff? It's

surprising how many things can be helpful, i.e. things like lemon

juice, etc. I'd start very gentle and very natural since she's already

in such a reactive state. Either that, or get her into a hospital whe

re they can monitor her 24/7 and give her some serious treatment, but I

know how likely that is.

Even things like epson salt baths and iodine washes can reduce

the bacterial numbers a bit and may help her feel a little better.

Plus, mino is a drug that many people react very badly to. I

can't take it at all without getting extremely sick. That's a bad one

to guage her ability to take abx. Has she tried others? Like Cipro or

penicillin vk? If she tries one, and gets an immediate boost from it,

then you'd know that amx could help her along quite a bit.

penny

Bob Grommes <bobbobgrommes> wrote:

Well now some 8 to

10 years too late we have figured out that this might be a useful

band-wagon, too. The problem for my wife is that she is so desperately

ill with MCS on top of CFS, that she is reactive to almost everything.

For example, just 50 mg of mino causes her *violent* stomach pain that

takes weeks to blow over. We have a doctor who wants to treat her for

Lyme and myco, but feels like his hands are tied because virtually

everything he gives her makes her ill in other ways. Even healthy

people struggle with die-off toxins; my wife can scarcely detox at all.

Anyone else have this experience where their detox pathways are shot,

no elbow room for anything? Anyone know a way out?

--Bob

pjeanneus wrote:

I think the problem we are up against is that even smart

doctors like

Cheney do only routine lab tests for various infections. In the

mid 90s he and others looked at the mycoplasma issue. I know a surgeon

from Knoxville who was Cheney's patient. He was one of the few who

talked Cheney into trying a lot of antibiotics on him. Unfortunately

for him and a lot of the rest of us this patient did not recover on

antibiotics.

I was treated by Dr. Flechas at this same time. He was involved

with Aristo Vojdani in a research study. I tested positive by PCR for

the mycoplasma, got antibiotics, knew I had to take them a couple of

years at least and began to recover. If I had quit the antibiotics at

the end of 4 months I would still be like the patients I saw for years

at the Charlotte support groups - dragging in, walking with canes, in

wheel chairs, spaced out, on various brain altering drugs trying

desperately to keep going from one hour to the next.

Did Cheney et al test their patients? Do they? Well, just to give you

one clue - ask them what lab they use to test all their cfs and fms

patients for borrelia. How much do you want to bet it is Quest or

LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It

makes me sick to realize what is being done to this community who have

a chronic infection of one sort or another.

Tony, move over, I want to join your camp.

a

[Guest guest]

Hi Audrey,

The link here re MCS

may interest you.

Rosie

P.S. How’s the sleeping /Amitrip. Going –

are you continuing with it or did you decide to give it up?

Except that nebulizers

have plastic tubing, to which she is reactive. That's the trouble once

you are reactive to VOC's -- they are everywhere.

Tony, people with MCS can and do react in terms of asthma attacks and the like,

but that is often the least of it. The basic problem is the wrong

molecules crossing the blood/brain barrier, that getting in through the

gut. The responses include brain fog / cognitive difficulties, tremors

and other neurotoxic syx, digestive problems, skin reactions, general

inflammatory responses, etc.

It's thought that the process starts with what's called " kindling "

.... causing neurons to fire at lower and lower thresholds.

An excellent overview is here:

www.ilru.org/html/publications/bookshelf/MCS.html

Are pathogens involved? Probably. Whether MCS itself is sustained

by pathogens, or merely set in motion by them, or exacerbated by them, I don't

pretend to know. My wife definitely has Lyme and mycoplasma, and needs

abx ... the MCS overlay gets in the way of that.

--Bob

dumbaussie2000 wrote:

Bob

It's all in the slime. The srtuff that keeps drippin down her throat

that is being manufactured in the sinus. Unless she has dried up like

those sjogren's patients?The sinus and respiratory system are loaded

with pathogens that are highly antimicrobial resistant and jump at

the first sign or hint of incoming chemical threat.I would go a

heavy, salty, saline nebulizer attack to break some of this stuff

down..Just reproduce an ocean mist on her respiratory system.

tony

> >

> > I think the problem we are up against is that even smart doctors

like

> > Cheney do only routine lab tests for various infections. In

the

> > mid 90s he and others looked at the mycoplasma issue. I know a

surgeon

> > from Knoxville who was Cheney's patient. He was one of the few who

> > talked Cheney into trying a lot of antibiotics on him.

Unfortunately

> > for him and a lot of the rest of us this patient did not recover

on

> > antibiotics.

> >

> > I was treated by Dr. Flechas at this same time. He was

involved

> > with Aristo Vojdani in a research study. I tested positive by PCR

for

> > the mycoplasma, got antibiotics, knew I had to take them a couple

of

> > years at least and began to recover. If I had quit the

antibiotics at

> > the end of 4 months I would still be like the patients I saw for

years

> > at the Charlotte support groups - dragging in, walking with

canes, in

> > wheel chairs, spaced out, on various brain altering drugs trying

> > desperately to keep going from one hour to the next.

> >

> > Did Cheney et al test their patients? Do they? Well, just to give

you

> > one clue - ask them what lab they use to test all their cfs and

fms

> > patients for borrelia. How much do you want to bet it is Quest or

> > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am

yelling. It

> > makes me sick to realize what is being done to this community who

have

> > a chronic infection of one sort or another.

> >

> > Tony, move over, I want to join your camp.

> >

> > a

> >

> >

>