Re: Dr Cheney's keynote presentation at the 2007 IACFS Conference

[Guest guest]

Hi, .

<einfachzumerken@...> wrote:

>

> Hi ,

>

> that would be really nice. Since I have not been there I wonder how

> such a congress works. Do the specialist all talk about their

> experience and treatment approaches or do they discuss and release

> new studies or info on CFS?

***I didn't attend, but all of this is typically included in such a conference.

>

> Could it be that CFS has different ways of symptom expression in

> everyone of us e.g. some have low Q while others have strong viral

> activy? Unless it's one root cause wouldn't we all need different

> ways of treatment and medication?

***Good question. One of the key points I see is it is both, we do have one

root cause but

the many down stream factors and feedback mechanisms and end-stage damage

further

entrenching the root cause do demand different treatments and combinations of

treatments to work in each case.

>

> Greets

>

>

>

***

[Guest guest]

***You're not a PWC yourself? Does your wife participate at the

CFS_Yasko list to help find ways from other PWCs in how to implement

it with a little less trouble?

She follows the forums but very seldom posts; she is far too ill. Many

days it's hard for her to read two sentences at a time and comprehend

what they say. There are people with an MCS overlay like she has, who

are getting very ill on the protocol. One, maybe, has broken through

after a month of hell. Another had a breakthru and is now relapsed

worse than ever, although she's enough of a drama queen about it that

it's hard to evaluate. Most are just muddling around as best they can.

Unfortunately my wife has very little margin for error and so can't do

much muddling. At present we are clearing gut infestations with Alinia

and Xifaxin and starting on Zithro. She is on BH4 and has added

Molybdenum to her regime ... that is the Yasko / VanK influence at

present. Actually the Xifaxin was Rich's suggestion too, for which we

are grateful as it has resulted in improved bowel motility. Adding the

Alinia exposed a tapeworm infestation we didn't even know about. It was

given for giardia and hopefully dealt with that too. Basically we are

mixing and matching ideas from different sources, including this list,

trying to steer a path between pat theories and what actually works for

her within the constraints she has to deal with. Even so there are

reliably a couple days a month where I'm pretty sure I'm going to lose

her. We have said goodbyes more than once. But she always fights her

way back. She is one hell of a fighter. If I were in her position, I

would have fallen on my sword some time ago. She personifies courage to me.

I think my wife's doctor has a pretty good take. He says that every

practitioner and every researcher has a " story " that frames their

understanding of the disease and each case they treat. He says you

should not fully believe any of these stories, including his own story.

Instead you adapt them by taking what works and skipping what doesn't.

Just as it turns out you seem to be doing. The truth is no one really

is sure of what they are doing and are just trying to find a way through

the forest that seems to work. The truth of human nature is that most

people believe their own " story " far too much, and do not learn much

from their failures, nor from the successes of others. I appreciate

what Yasko and Rich are doing, but I cannot share your enthusiasm at

this point that they have " nailed " anything other than a n arguably new

piece of the puzzle which may or may not be something more than an

interesting, largely unactionable factoid. I don't yet see anyone with

all the pieces, much less all of them assembled. We can't afford to

spin our wheels for months or years in blind trust that if we see it

through no matter what happens, it will be alright because Amy, or Fred,

or Ted say it will. Been there, done that, have the T-shirt and the

lost / wasted years to prove it.

This is not a disease for people who just want to be told what to do,

that's for certain.

Best,

--Bob

[Guest guest]

I'm glad that you said you picked up some stuff from KEN because as

you can observe on his experimental site he is the gold standard of

improvement and a no-nonsense approach to what is

needed.Unfortunately he is basically of the school that addressed the

infection and the blood thickening/coagulation that came with it.

Your going to cut the drugs aspirins/ibuprofen and antibiotics and

going to blow everything out of the water with what you eat and throw

in as the suplemental stuff. Your also one of the very blessed that

doesn't have a sinus problem- just half your heads rotten and you

haven't had this diagnosed yet(my opinion). I wish you well, but

being in the complete dark about your real complaints over the last

decade or so makes you a prime candidate to read yasko and believe in

Rich's theories and offcourse prove to us all we can fix things with

our immune systems.

I also think eriks explanation about contracting the herpes virus

when at your peak of excitement tells us all alot about how good a

job our immune system can do.

And please don't touch antibiotics, nor make an honest attempt at

getting some real answers, or to observe some real issues inside your

damaged body. Remember you've been taught everything is normal and

nothing is OBVIOUSLY WRONG by everyone you've seen.

tony

> >

> > '

> > How can you give this croc when your not addressing TOXIN

CREATING

> > INFECTION???????

>

>

>

> ***This in fact is exactly one of the key things being addressed.

You

> seem to have missed this point.

>

>

> I don't think u realise that infections create toxins

> > that cause harm to humans.

>

>

>

> ***Oh, no, we're in agreement about this. Infections and the toxins

> they create are among the top methylation blocks in CFS, just not

the

> only ones.

>

>

> Not addressing this isn't going to make

> > anyone well- regardless of whatever theory your following.All you

can

> > possably do by following anyones protocol is lower the amount of

> > amino acids, and other proteins not to fuel this onslaught.I

> > definately believe in having a multiple approach but reading that

> > your going to bring home the bacon on rich von kronkrnberger crap

is

> > REDICULOUS...

>

>

>

> ***No it isn't. You agree with him in more ways than you seem to be

> aware.

>

> The guy hasn't the slightest idea what is truly wrong

> > with us. He thinks we have fatigue and have had a lot of

stressfull

> > situations.

>

>

>

> ***Well, you're clearly misconceiving what he is stating about

> methylation blocks. He knows there are a lot more serious things

> going on than just fatigue in CFS and he knows emotional stress

can't

> remotely explain all the bad and persistent symptoms.

>

>

>

> ***You two are closer in views that what you're realizing. And as

far

> as approaches you're the vanguard for antibiotic use more than

> anything and he only part ways with you in that he believes in a

> comprenhensive approach, which for some should include antibiotics,

in

> order to get out of the CFS hole.

>

>

>

>

>

>

> Please spare me and just get to the ingredients required

> > for people not to fuel there inflammatory state.

> > tony

>

>

>

> ***The ingredients are several and will be variable according the

> individual PWCs needs. My individual use of treaments which has

> lowered infectious load and toxins in me, consequently reducing

> inflammation, is comprehensive and my own invention, borrowing from

> several doctor's protocols.

>

>

>

>

> ***I'm not ready to offer this yet in detail and really prefer to

get

> my improvements to the point where I can in fact say I've conquered

my

> CFS completely from what I'm doing. Nevertheless, bits of Dr

Cheney's

> work, bits from Rich's suggestions for treatment in the Experimental

> list archives, bits from Ken's suggestions, bits of Yasko's approach

> and Payne's in Virgnia are the general building blocks to my

> individual cases improvements.

>

>

>

> ***Antibiotics don't apply at this point and may never apply. They

> certainly didn't do anything much for me in the past, but that's

just

> my case.

>

>

>

> ***

>

[Guest guest]

>

> Cheney has apparently been using Corvalen D-ribose for at least six

months - thats another energy inducer - I wonder how thats going.

>

> Cort

----------------------------------

I heard it was going pretty well for his " not-so-sick " patients.

But it wasn't going well for the sicker patients. It seemed to retard

their progress, gave them intestinal gas, and maked them sicker.

Probably, it goes on a case by case basis.

I don't think he sees this as an essential compontent of

his treatment plan.

Zippy

[Guest guest]

Hi, Vinod.

<vinod3x3@...> wrote:

>

>

> >

> > Hi, Cort.

> >

> >

> >

> > My take is Rich's hypothesis of pathogenesis of CFS is a dramatic

> > discovery, but even more so, the most rational and grounded theory of

> > cause to date, something Dr Cheney seems to miss.

> The most important issue in many of these cases is the ANS imbalance -

> the overstimulation of the Sympathetic system and the underactivation

> of the Parasympathetic causes a chronic excess of circulationg

> catecholomines these catecholomines are the cause of the excess high

> tonus of the SNS which does not allow one to ever fully relax ( a huge

> stress)- this is the cause of the diastolic dysfunction that Cheney

> referes to - the heart never relaxes.

***Downstream to the glutathione depletion-methylation blocks as you note some

like

metal toxins, I agree ANS imbalance may be an additional factor not allowing the

the heart

cells to relax, resulting in diastolic heart dysfunction.

***I've found RenewPro helps with glutathione replenishment(I don't seem to have

a CBS

upregulation issue) and some of Dr Yasko's recommendations for GABA/glutamate

balancing, like nerve calm RNA, aggression RNA , vinpocetine, magnesium citrate,

low

dose zinc and limiting drinking milk to limit calcium influx inflammation of

nerve cells I do

and have found in my case these reduce the overstimulation of the brain or

Sympathetic

system as you note more precisely.

***

>

[Guest guest]

Penny,

The company that makes the impedance cardiograph machine is Cardiodynamics at 800-778-4825, cdic.com. However, that machine is not used do diagnose PFO. It's only used to evaluate blood flow pumped by the heart and the metacapillary pump. PFO is diagnosed with a bubble injection and an echo machine.

Tim

I tried to get my cardiologist to perform the heart tests for this PFO thing (I think it's possible I have it as well considering my history with fatigue and migraines) and he laughed me out of the office. Actually, that was one of the worst appointments I've ever had. I was actually reduced to tears, and ended up telling him to stop patronizing me. The company that makes the machine that does the test can refer you to doctors who use it. They're here in San Diego but I never followed up. I posted it somewhere a long time ago, but would be hard pressed to find it in the archives. Anyone remember the name of the machine? We could do a search and perhaps locate the phone number for references for Amy or anyone who wants to be tested.penny

[Guest guest]

Really well said, Bob. My prayers for your wife's recovery and relief for both of your suffering. pennyBob Grommes <bob@...> wrote: ***You're not a PWC yourself? Does your wife participate at the CFS_Yasko list to help find ways from other PWCs in how to implementit with a little less trouble?She follows the forums but very seldom posts; she is far too ill. Many days it's hard for her to read two sentences at a time

and comprehend what they say. There are people with an MCS overlay like she has, who are getting very ill on the protocol. One, maybe, has broken through after a month of hell. Another had a breakthru and is now relapsed worse than ever, although she's enough of a drama queen about it that it's hard to evaluate. Most are just muddling around as best they can. Unfortunately my wife has very little margin for error and so can't do much muddling. At present we are clearing gut infestations with Alinia and Xifaxin and starting on Zithro. She is on BH4 and has added Molybdenum to her regime ... that is the Yasko / VanK influence at present. Actually the Xifaxin was Rich's suggestion too, for which we are grateful as it has resulted in improved bowel motility. Adding the Alinia exposed a tapeworm infestation we didn't even know about. It was given for giardia and hopefully dealt with that too. Basically we are mixing and

matching ideas from different sources, including this list, trying to steer a path between pat theories and what actually works for her within the constraints she has to deal with. Even so there are reliably a couple days a month where I'm pretty sure I'm going to lose her. We have said goodbyes more than once. But she always fights her way back. She is one hell of a fighter. If I were in her position, I would have fallen on my sword some time ago. She personifies courage to me.I think my wife's doctor has a pretty good take. He says that every practitioner and every researcher has a "story" that frames their understanding of the disease and each case they treat. He says you should not fully believe any of these stories, including his own story. Instead you adapt them by taking what works and skipping what doesn't. Just as it turns out you seem to be doing. The truth is no one really is sure of what they are doing and

are just trying to find a way through the forest that seems to work. The truth of human nature is that most people believe their own "story" far too much, and do not learn much from their failures, nor from the successes of others. I appreciate what Yasko and Rich are doing, but I cannot share your enthusiasm at this point that they have "nailed" anything other than a n arguably new piece of the puzzle which may or may not be something more than an interesting, largely unactionable factoid. I don't yet see anyone with all the pieces, much less all of them assembled. We can't afford to spin our wheels for months or years in blind trust that if we see it through no matter what happens, it will be alright because Amy, or Fred, or Ted say it will. Been there, done that, have the T-shirt and the lost / wasted years to prove it.This is not a disease for people who just want to be told what to do, that's for

certain.Best,--Bob

[Guest guest]

Thanks Tim! I'm not up on my terminology. PFO may not be what I meant, as I've kind of stopped following the Cheney saga and don't really know much about where he's at now. I just thought it was an acronym for something I'd forgotten. But I did think the hole in the heart made sense when I first read about it, considering my own situation and the high rate of migraines and other blood pressure and coagulation symptoms among PWC. Whether the hole is caused/exacerbated by infection, or inducive to infection, I don't have a clue. Would you be good enough to tell us in a nutshell what PFO is and the difference between the two procedures/conditions and why that difference is significant? And how easy is it to get a doc to perform this bubble injection test? thanks again, penny candtcampbell@... wrote: Penny, The company that makes the impedance cardiograph machine is Cardiodynamics at 800-778-4825, cdic.com. However, that machine is not used do diagnose PFO. It's only used to evaluate blood flow pumped by the heart and the metacapillary pump. PFO is diagnosed with a bubble injection and an echo machine. Tim I tried to get my cardiologist to perform the heart

tests for this PFO thing (I think it's possible I have it as well considering my history with fatigue and migraines) and he laughed me out of the office. Actually, that was one of the worst appointments I've ever had. I was actually reduced to tears, and ended up telling him to stop patronizing me. The company that makes the machine that does the test can refer you to doctors who use it. They're here in San Diego but I never followed up. I posted it somewhere a long time ago, but would be hard pressed to find it in the archives. Anyone remember the name of the machine? We could do a search and perhaps locate the phone number for references for Amy or anyone who wants to be tested.penny

[Guest guest]

, I will try to reply politely and briefly, not wishing to waste

my time as I have stated before. Please look for PAULA REPLIES.

>

> Hi, a.

>

>

> " pjeanneus " <pj7@> wrote:

> >

> > DAvid and all,

> > I hope we can continue this discussion on this email list.

Thanks,

> > , for your thoughtful replies. I wish I could find some hope

in

> > Yasko, just as I wish I could find some hope in rife machines.

>

>

>

> ***Your use of analogy is amazing, genius!

> Thanks for your genuine and thoughtful thanks

a replies: I guess in my opinion Yasko and rife machines have

about as much evidence that either works. No, actually, I know more

patients who do well on rife machines. BUT IN NO WAY DID I WRITE THIS

AS AN INSULT. I was deadly serious, not sarcastic. Nothing about Lyme

disease is funny, certainly not its victims. More on victimhood later.

>

>

> >

> > You suggest that I have not done my homework.

>

>

>

> ***Well, no, actually at this point, it is clear you have NOT.

a replies: I think I made it perfectly clear that I have not done

my homework on Yasko and do not intend to until you and others can

write some summaries I have time to read. This means short, concise

information on cause - effect - treatments. You tell me what Yasko

claims are the causes of cfs, what are the symptoms of those causes

and then link treatments to symptoms - I see no reason why this would

not be about as effective as genetic testing.

>

>

>

> I must admit after 11

> > years and some level of recovery I don't want to do that much

> > homework. I went to her site and was just overcome with the

> > impossibility of finding information. Now you tell me she has a

book

> > on autism. Do I want to spend my money, and more importantly, my

> > time?

>

>

>

> ***YES, you do, against you're own " better " judgement

a replies: I am offended by your insult here. You may think I

have insulted you, but I am simply asking for you, who are promoting

Yasko, to make your case. So far, you have not made it in my opinion.

I am not convinced the homework is worth doing.

>

>

> >

> > When I took time to look for some sort of a chart linking

infection

> > to genetic deficiency to treatment I could not find anything.

What I

> > did find in terms of treating just borrelia was stuff most Lymies

> > have tried for decades to no effect.

>

>

>

> ***And what other methylation blocks did you address, besides what

> those particular treatments might do, that could make all the

> difference to getting well?

a replies: Okay, , here is your big chance to convince some

of us. What other methylation blocks would I look for? What would be

the symptoms of these? What treatments would you then apply to these

symptoms? I have only seen Yasko give a full page list of herbs and

such. I am serious, a list one column long and one full page. I am

not investing in such a group of products without more logic behind

it.

>

>

> >

> > So convince me. What are you taking that you didn't take before

that

> > is now working for you?

>

>

>

> ***It's posted at the Experimental list in detail. Since it's not

> according to the Yasko protocol, it would be misleading here to

simply

> discuss the few narrowly focused issues I addressed using just a few

> of her treatments in just a short period of time among her

overarching

> model, which does require immersing oneself in it over nine months

or

> possibly longer(I think previous and ongoing use of RenewPro or

> ImmunePro in a PWC may shorten this process to six months or less to

> start to see some very good results).

a replies:

I seem to recall seeing a lenghty post there in which you listed a

list of products you are taking. Would it be possible for you to give

a link to that post? (Maybe one reason I don't want to go hunt over

there, among others, is that I am not very sick after 11 years of

antibiotics and would rather be cooking dinner today and writing my

next book than writing or reading here. I think that is a good sign

that antibiotics may have some good effects.)

>

>

>

> You say that Rich has already answered me. I

> > don't think he has.

>

>

>

> ***Yes, he did. Apparently, you missed it.

a replies:

I have read every email from Rich and have saved most. He says he

cannot produce a chart at this time - that I must at least get the

basic genetic tests done. I am not convinced that is worth it at this

time.

>

>

>

> Oh, he has written a lot to me, even stating that

> > it is not so simple as the chart I request: infection - genetic

> > issues - treatment. But I say when I read Yasko's beginnings of

such

> > a chart I see nothing worth trying AGAIN, especially not samento.

>

>

>

> ***So, what?

a replies: I don't understand your question. You have just told

me I didn't do my homework and if I had read your posts at

Experimental and read Rich's posts my questions would be answered.

Basically, Rich has told me he can't answer my questions yet. What am

I missing?

>

>

> >

> > Rich suggests I get Yasko's tests done. I just spent $2000 for

dental

> > work my insurance didn't cover. Then I will have to pay $350 a

month

> > for diflucan my insurance rejected in the face of my doctor's

> > prescription. My husband and I are old school teachers, not

> > millionaires. I think I have done enough homework to determine

that

> > some others are going to have to recover on Yasko before I try

> > walking on water.

>

>

>

> ***Theres no rule that says a has to be the early adopter for

> this. It's obviously valid to watch n' see, but I do suggest your

> ongoing sob story, as if you're special and unique in you suffering

> and financial difficulties, stops, for you're own sake.

>

>

>

> ***It's simply not true that you're a victim. " Getting off it "

about

> this could go along way in your finding a way to making whatever you

> choose to about your health and life work.

a replies: Ha, ha, ha. Of course, I'm a victim. Welcome to the

real world. I don't care. I have been victimized in many ways, as

have we all. The fact is I do not choose to spend any of my money at

this time on genetic tests. I fear that this would perhaps make me a

greater victim, no, call that fool. I recall spending a fair amount

of money in the past on things that did nothing and some made me much

worse. Buyer beware.

>

>

>

> >

> > I get your point about the PFO not being the problem. So why is

> > Cheney making it the problem? Same old Cheney - beat the details

to

> > death without getting at the UNDERLYING INFECTIONS.

>

>

>

> ***He has his blind spots and you have yours.

a replies: Oh, yeah. We are all fools and victims at times -

" Everybody's somebody's fool " an old song from when I was a kid. I

respect Cheney and think he knows a LOT, just totally disagree on the

root cause - infection - and that we need to evolve treatments for

the INFECTIONS that work, not worry so much about the genetic causes

until more research gets done.

>

>

>

> >

> > I agree with you that a simplistic use of antibiotics will not

fix

> > these infections. But I also agree with Tony that antibiotics

> > appropriately used may well fix all of us.

>

>

>

> ***Tony has his contributions, but if this is what he thinks, it is

a

> blunderous thought. It doesn't comport with the reality of CFS and

> end-stage Lyme.

a replies: You may well be right. But we don't have a lot of

choices just now. Personally I plan to keep taking ImmunoPro and try

Dr. Schardt's protocol with the Diflucan. I want to repeat, like many

on this list, I have recovered to about 80% using mainly Zithromax

plus some other antibiotics over 11 years. A lot of people are doing

great on the Marshall Protocol. But I try to keep an open mind.

Convince me Yasko is on to something.

[Guest guest]

Not quite true either .. in real sepis - which is the closes to

TRUE herx.. steroids don't do a thing to control it.

Of course Steroids can be used anytime as suppressives- not without

cost to the body though.. there are other drugs that can supress the

immune system not so far upstream.... matter of fact alot of abx are

suppressive..

Barb

Tony wrote:

> > Whether you chose to buy into Yasko's approach or stick with a

more

> > traditional antibiotic assault on chronic infection, an important

> > missing link is how to deal with herxing, especially in the

presence

> of

> > impaired detox pathways. In both camps, all they really have to

> offer

> > is a couple of supplements that might help some, and other than

> that,

> > just tough it out.

>

ERic replies:

> Not quite 100% true. While I have no knowledge/opinion on such

> practices myself, I think at least a few doctors have used potent

> immunosuppressives, including steroids, in conjunction with

> antibacterial therapy. For example, Stratton mentions such in his

> patents. How effective it is, I have no information on.

>

[Guest guest]

Bob and all,

Let me start by saying I never jump on Cheney's bandwagon. Anyone who

thinks Klonopin protects the brain needs his head examined, but I

digress.

One thing that confounded me was Cheney's comments on the one patient

who got the hole fixed with the standard surgical treatment which is

to implant a nickel patch. I've done biotech research for so long

that this idiocy (not Cheney's) does not surprise me.

But who the heck would make a patch for a heart wall out of nickel?

Any woman with pierced ears knows that most of us cannot wear cheap

nickel posts in our ears LET ALONE IN OUR HEARTS.

That family should find out what idiot biotech company is making

nickel heart patches and SUE THEM.

a Carnes

>

> , Yasko does not claim the PFO is " completely correctable " .

I'm

> not aware that she makes any particular claims about the PFO or

indeed

> says anything at all about it and I've spent some time reading her

> material, or at least I did about 2-3 months ago. The only direct

way

> to treat the PFO that I know of, which is installing a patch to

close

> it, is strongly advised against by Cheney himself. Cheney is doing

a

> trial for a growth factor that he hopes will help, but has no

result to

> report yet. So I'm curious how you can call it " completely

correctable "

> and imply that this comes from Yasko (among others). I would

actually

> like to follow up any citations you have because I think this is

one of

> the problems my wife has and I would love to see it " completely

corrected " .

>

> Yes, Yasko's protocol, followed in the correct order, is supposed

to

> ease detox and get detox working more effectively. In theory.

However,

> it is extremely non-trivial to figure the protocol out, especially

when

> you have a lot of food allergies / chemical sensitivities to work

> around. It's literally a full time job just to sort through the

dogpile

> of posts on Yasko's online forum. In my wife's case by the time

you

> find the intersection of what Yasko recommends / prohibits for food

and

> supplements and what my wife can tolerate, she has already been

taking

> what she can for some time; everything Yasko recommends is either

not

> new or not tolerable.

>

> If Yasko works at all, for people who are far enough gone, it's

going to

> require an inpaitent clinic setting to manage treatment I think.

>

> That of course is not to say it might work well for relatively less

ill

> people, as-is, although even there, I think it's overly complex for

the

> average person to grok, much less the average brain-fogged person.

>

> The past doesn't equal the future? Hm. I'd have never guessed

they

> were two different things. How stupid of me. I will say though,

that

> " past is prologue " in the real world. My wife has dealt with CFIDS

for

> 30 years and I've been with her for 13 of those years. And it's

all

> been downhill, overall, and this is not by any means the first

> breathless account of some new bleeding edge protocol we've heard.

> Forgive us our bad attitude, if that's what you want to dismiss it

as,

> but check back with me in a decade or so and we'll see how *you're*

> doing. By then you'll either be well, or strangely silent about

the

> wonders of the Yasko Protocol.

>

> Incidentally, we've spent about $2K on Yasko tests and supplements,

read

> two of her books, watched a couple of her videos, so I think we

have a

> fairly decent grasp, and we gave it a fair shake, thank you very

much.

> Even so, I don't think we've completely given up on it, and came

away

> with some insight; I just don't think it's quite ready for prime

time in

> my wife's case, and her doctor feels that some of Amy's conclusions

are

> a bit of a stretch. My wife has seen some tangible benefit from

BH4

> supplementation, though, and we feel that at least we got that much

out

> of it. But I don't think the Yasko protocol is a slam-dunk for

everyone

> with CFIDS by any means.

>

> Best,

>

> --Bob

>

> davidhall2020 wrote:

> >

> > > directly addressing infection may be helpful and arguably more

> > important

> > > than focusing on the PFO, which is not directly treatable in any

> > > meaningful way in any case, with our current medical technology.

> >

> > ***This thought is in error. It's completely correctable with the

> > approaches such as the Yasko approach and OTHERS, even including

some

> > antibiotic therapies, although alone it should be regularly noted

that

> > these have predominantly failed in CFS and end-stage Lyme.

> >

> > >

> > > Whether you chose to buy into Yasko's approach or stick with a

more

> > > traditional antibiotic assault on chronic infection, an

important

> > > missing link is how to deal with herxing, especially in the

presence of

> > > impaired detox pathways. In both camps, all they really have to

offer

> > > is a couple of supplements that might help some, and other than

that,

> > > just tough it out.

> >

> > ***No. You obviously have not done your homework on Yasko. The

> > enevitable side effects from an effective antimicrobial and detox

> > protocol she has many several very well thought out support

treatments

> > for people, not just a couple supplements.

> >

> > That's grand if you can do so. However, some

> > > patients are so badly impaired in this area that you are just

asking

> > > them to go through a living hell which they can't endure, and

may

> > > permanently damage them, if not kill them. Even in the best case

> > > scenario you are talking months or years of " feeling worse so

you can

> > > feel better " . This requires tremendous faith on the part of the

> > > patient, who in turn generally gets little real support and is

pretty

> > > much on their own. In other words, in the real world it ain't

gonna

> > work.

> >

> > ***False. It has been working for autistics, who have much of the

> > same underlying pathology involved as CFS and Lyme. Even the PWCs

who

> > have successfully conquered their illness, as few as these numbers

> > seem to be, fit the basic pathogenesis proposed by Rich in how

they

> > accomplished this task.

> >

> > >

> > > A final comment. At this stage of the game I don't think either

abx

> > > therapies or Yasko's protocol are sufficiently advanced for the

simple

> > > reason that I don't see people lining up to testify how they

> > > unambiguously have their lives back. The closest Yasko comes is

a few

> > > autistic miracles that happen from time to time that she (maybe

> > > legitimately) takes credit for and may or may not be somewhat

> > > transferable to CFIDS cases. And the closest the abx camp comes

is a

> > > few turnaround / remission stories that happen from time to

time that

> > > they (maybe legitimately) take credit for. This does not

impress me.

> > > It isn't a cure. It isn't even very helpful most of the time.

> > >

> > > --Bob

> >

> > ***Your cynisism is clear and even understandable. However, this

> > attitude and understanding of it doesn't make the reasons for it

true.

> >

> > ***The past doesn't equal the future and the fact that you are

making

> > errors in simply grasping particular aspects of glutathione

> > depletion-methylation block approach's should hint at that your

> > overall conclusions might be errant as well.

> >

> > ***

> >

> >

>

[Guest guest]

Kate, you could look at the expense as your contribution to research.

On that basis I would contribute, but maybe not to Yasko. Genetic

research has a long way to go, not just a few years. I just read some

fascinating stuff on HIV - the genetics of those who cannot get

infected, and then there is obesity and gut flora. But I am not

holding my breath on the obesity thing except to hold my stomach in

so I don't look quite as fat.

a Carnes

>

> > Incidentally, we've spent about $2K on Yasko tests and

supplements,

> > read two of her books, watched a couple of her videos, so I

think

> > we have a fairly decent grasp, and we gave it a fair shake,

thank

> > you very much. Even so, I don't think we've completely given up

on

> > it, and came away with some insight; I just don't think it's

quite

> > ready for prime time in my wife's case, and her doctor feels

that

> > some of Amy's conclusions are a bit of a stretch. My wife has

seen

> > some tangible benefit from BH4 supplementation, though, and we

feel

> > that at least we got that much out of it. But I don't think the

> > Yasko protocol is a slam-dunk for everyone with CFIDS by any

means.

> >

> > Best,

> >

> > --Bob

>

> I suspect it's like any other treatment. If your problem happens

to

> be exactly what a protocol addresses, then it's going to help. A

lot

> of us just don't really know what our problem is. I think it's

pretty

> clear that none of these protocols are ready for prime time

anyway,

> but people are just muddling along with some promising ideas. My

> guess is that information about our own genetic makeup might be

more

> helpful in the near future as more discoveries are made, so I'm

> thinking that testing might not be a total waste of money.

>

> - Kate

>

[Guest guest]

Tony, I love my RECUPERAT-ION, and I didn't even do much homework on

it. Hey, it works.

a Carnes

>

> This is another half truth, silly wive's tale. Most serious

> treatments taking place in a hospital setting don't involve

> herxheimer reactions. The herxheimer reaction was something that

> dates back to the middle of ladst century when most drugs and

> bacteria weren't as clear as they are today.Your also a living in a

> fools paradise if you don't understand that pill antibiotics are

> created to deal with todays infectious acquisistion tommorrow.All

> there testing involves animals given an infection then treated- no-

> one gives a rats ass about an infection that goes in and causes

> severe damage that needs prolonged therapies to treat scar tissue

and

> the like...and twhat's never discussed is the low levels of

> stimulation that many treatments bring to these area's...Low level

of

> drug reaching infection often stimulates it's growth..

> Another irritation for me is the freakin crap that keeps getting

> served up. The most oimportant element in a hospital setting is

> potassium.. -when you have muscle weekness- the main ingredient

is

> POTASSIUM.How the fuck can I sit here time and tiome again and read

> yasko this, cheney that, when they don't even consider what's

common

> medical practise as EXTREMELY RELEVANT TO OUR CAUSE.. Remember the

> most succesfull protocol is blasi salts which are loaded with

> potassium and even then the levels are possably nowhere near enough

> to cater for a long term inflammed individual...

> tony

>

>

>

> >

> > > Whether you chose to buy into Yasko's approach or stick with a

> more

> > > traditional antibiotic assault on chronic infection, an

important

> > > missing link is how to deal with herxing, especially in the

> presence

> > of

> > > impaired detox pathways. In both camps, all they really have

to

> > offer

> > > is a couple of supplements that might help some, and other than

> > that,

> > > just tough it out.

> >

> > Not quite 100% true. While I have no knowledge/opinion on such

> > practices myself, I think at least a few doctors have used potent

> > immunosuppressives, including steroids, in conjunction with

> > antibacterial therapy. For example, Stratton mentions such in his

> > patents. How effective it is, I have no information on.

> >

>

[Guest guest]

On Jan 15, 2007, at 2:04 AM, dumbaussie2000 wrote:

> Remember the

> most succesfull protocol is blasi salts which are loaded with

> potassium and even then the levels are possably nowhere near enough

> to cater for a long term inflammed individual...

> tony

>

Some individuals notice improvement from taking these salts and

others don't notice any difference at all. Just like some people

benefit from nystatin and others don't at all. Etcetera etcetera.

We're not all the same.

- Kate

[Guest guest]

Bob, I plan to print and save your post here. You and your wife are

both amazing. I pray something works for her and you both get many

good years to come.

a Carnes

>

> ***You're not a PWC yourself? Does your wife participate at the

> CFS_Yasko list to help find ways from other PWCs in how to implement

> it with a little less trouble?

>

> She follows the forums but very seldom posts; she is far too ill.

Many

> days it's hard for her to read two sentences at a time and

comprehend

> what they say. There are people with an MCS overlay like she has,

who

> are getting very ill on the protocol. One, maybe, has broken

through

> after a month of hell. Another had a breakthru and is now relapsed

> worse than ever, although she's enough of a drama queen about it

that

> it's hard to evaluate. Most are just muddling around as best they

can.

> Unfortunately my wife has very little margin for error and so can't

do

> much muddling. At present we are clearing gut infestations with

Alinia

> and Xifaxin and starting on Zithro. She is on BH4 and has added

> Molybdenum to her regime ... that is the Yasko / VanK influence at

> present. Actually the Xifaxin was Rich's suggestion too, for which

we

> are grateful as it has resulted in improved bowel motility. Adding

the

> Alinia exposed a tapeworm infestation we didn't even know about.

It was

> given for giardia and hopefully dealt with that too. Basically we

are

> mixing and matching ideas from different sources, including this

list,

> trying to steer a path between pat theories and what actually works

for

> her within the constraints she has to deal with. Even so there are

> reliably a couple days a month where I'm pretty sure I'm going to

lose

> her. We have said goodbyes more than once. But she always fights

her

> way back. She is one hell of a fighter. If I were in her

position, I

> would have fallen on my sword some time ago. She personifies

courage to me.

>

> I think my wife's doctor has a pretty good take. He says that

every

> practitioner and every researcher has a " story " that frames their

> understanding of the disease and each case they treat. He says you

> should not fully believe any of these stories, including his own

story.

> Instead you adapt them by taking what works and skipping what

doesn't.

> Just as it turns out you seem to be doing. The truth is no one

really

> is sure of what they are doing and are just trying to find a way

through

> the forest that seems to work. The truth of human nature is that

most

> people believe their own " story " far too much, and do not learn

much

> from their failures, nor from the successes of others. I

appreciate

> what Yasko and Rich are doing, but I cannot share your enthusiasm

at

> this point that they have " nailed " anything other than a n arguably

new

> piece of the puzzle which may or may not be something more than an

> interesting, largely unactionable factoid. I don't yet see anyone

with

> all the pieces, much less all of them assembled. We can't afford

to

> spin our wheels for months or years in blind trust that if we see

it

> through no matter what happens, it will be alright because Amy, or

Fred,

> or Ted say it will. Been there, done that, have the T-shirt and

the

> lost / wasted years to prove it.

>

> This is not a disease for people who just want to be told what to

do,

> that's for certain.

>

> Best,

>

> --Bob

>

[Guest guest]

It was an alloy of nickel and

something else, but still ... I agree with you.

No doubt, the inventor was male. ;-)

--Bob

pjeanneus wrote:

Bob and all,

Let me start by saying I never jump on Cheney's bandwagon. Anyone who

thinks Klonopin protects the brain needs his head examined, but I

digress.

One thing that confounded me was Cheney's comments on the one patient

who got the hole fixed with the standard surgical treatment which is

to implant a nickel patch. I've done biotech research for so long

that this idiocy (not Cheney's) does not surprise me.

But who the heck would make a patch for a heart wall out of nickel?

Any woman with pierced ears knows that most of us cannot wear cheap

nickel posts in our ears LET ALONE IN OUR HEARTS.

That family should find out what idiot biotech company is making

nickel heart patches and SUE THEM.

a Carnes

[Guest guest]

One of the things that bothers me about Yasko is that the SNPs she

checks for are present in many healthy people. It isn't just the

genes, but how they are expressed. More and more gene researchers are

heading in the direction of epigenetics which considers environment the

main driver of gene expression, rather than considering DNA what

governs. To be fair to Yasko, she realizes this and doesn't claim to

fix anything ... rather she bypasses undesirable gene expressions by

manipulating diet and by attempting to dislodge pathogens by fixing

broken pathways that she feels are largely responsible for the

pathogens not being effectively dealt with by the body.

It all sounds great on paper but I suspect the true picture is quite a

bit more complex than even her baroque protocol would suggest.

Particularly in individual cases.

--Bob

pjeanneus wrote:

Genetic research has a long way to go, not just a few years.

[Guest guest]

First I've heard of a "nickel" patch. Seems silly to me. Everything I read mentioned a mesh that slowly dissolves as the heart tissue grows together to close the hole??? pennypjeanneus <pj7@...> wrote: Bob and all,Let me start by saying I never jump on Cheney's bandwagon. Anyone who thinks Klonopin protects the brain needs his head examined, but I digress.One thing that confounded me was Cheney's comments on the one patient who got the hole fixed with

the standard surgical treatment which is to implant a nickel patch. I've done biotech research for so long that this idiocy (not Cheney's) does not surprise me. But who the heck would make a patch for a heart wall out of nickel? Any woman with pierced ears knows that most of us cannot wear cheap nickel posts in our ears LET ALONE IN OUR HEARTS.That family should find out what idiot biotech company is making nickel heart patches and SUE THEM. a Carnes>> , Yasko does not claim the PFO is "completely correctable". I'm > not aware that she makes any particular claims about the PFO or indeed > says anything at all about it and I've spent some time reading her > material, or at least I did about 2-3 months ago. The only direct way > to treat the PFO that I know of, which is installing a patch to close > it, is strongly advised against by Cheney himself.

Cheney is doing a > trial for a growth factor that he hopes will help, but has no result to > report yet. So I'm curious how you can call it "completely correctable" > and imply that this comes from Yasko (among others). I would actually > like to follow up any citations you have because I think this is one of > the problems my wife has and I would love to see it "completely corrected".> > Yes, Yasko's protocol, followed in the correct order, is supposed to > ease detox and get detox working more effectively. In theory. However, > it is extremely non-trivial to figure the protocol out, especially when > you have a lot of food allergies / chemical sensitivities to work > around. It's literally a full time job just to sort through the dogpile > of posts on Yasko's online forum. In my wife's case by the time you > find the intersection of what

Yasko recommends / prohibits for food and > supplements and what my wife can tolerate, she has already been taking > what she can for some time; everything Yasko recommends is either not > new or not tolerable.> > If Yasko works at all, for people who are far enough gone, it's going to > require an inpaitent clinic setting to manage treatment I think.> > That of course is not to say it might work well for relatively less ill > people, as-is, although even there, I think it's overly complex for the > average person to grok, much less the average brain-fogged person.> > The past doesn't equal the future? Hm. I'd have never guessed they > were two different things. How stupid of me. I will say though, that > "past is prologue" in the real world. My wife has dealt with CFIDS for > 30 years and I've been with her for 13 of those years. And

it's all > been downhill, overall, and this is not by any means the first > breathless account of some new bleeding edge protocol we've heard. > Forgive us our bad attitude, if that's what you want to dismiss it as, > but check back with me in a decade or so and we'll see how *you're* > doing. By then you'll either be well, or strangely silent about the > wonders of the Yasko Protocol.> > Incidentally, we've spent about $2K on Yasko tests and supplements, read > two of her books, watched a couple of her videos, so I think we have a > fairly decent grasp, and we gave it a fair shake, thank you very much. > Even so, I don't think we've completely given up on it, and came away > with some insight; I just don't think it's quite ready for prime time in > my wife's case, and her doctor feels that some of Amy's conclusions are > a bit of a stretch.

My wife has seen some tangible benefit from BH4 > supplementation, though, and we feel that at least we got that much out > of it. But I don't think the Yasko protocol is a slam-dunk for everyone > with CFIDS by any means.> > Best,> > --Bob> > davidhall2020 wrote:> >> > > directly addressing infection may be helpful and arguably more> > important> > > than focusing on the PFO, which is not directly treatable in any> > > meaningful way in any case, with our current medical technology.> >> > ***This thought is in error. It's completely correctable with the> > approaches such as the Yasko approach and OTHERS, even including some> > antibiotic therapies, although alone it should be regularly noted that> > these have predominantly failed in CFS and end-stage Lyme.> >> >

>> > > Whether you chose to buy into Yasko's approach or stick with a more> > > traditional antibiotic assault on chronic infection, an important> > > missing link is how to deal with herxing, especially in the presence of> > > impaired detox pathways. In both camps, all they really have to offer> > > is a couple of supplements that might help some, and other than that,> > > just tough it out.> >> > ***No. You obviously have not done your homework on Yasko. The> > enevitable side effects from an effective antimicrobial and detox> > protocol she has many several very well thought out support treatments> > for people, not just a couple supplements.> >> > That's grand if you can do so. However, some> > > patients are so badly impaired in this area that you are just asking> >

> them to go through a living hell which they can't endure, and may> > > permanently damage them, if not kill them. Even in the best case> > > scenario you are talking months or years of "feeling worse so you can> > > feel better". This requires tremendous faith on the part of the> > > patient, who in turn generally gets little real support and is pretty> > > much on their own. In other words, in the real world it ain't gonna> > work.> >> > ***False. It has been working for autistics, who have much of the> > same underlying pathology involved as CFS and Lyme. Even the PWCs who> > have successfully conquered their illness, as few as these numbers> > seem to be, fit the basic pathogenesis proposed by Rich in how they> > accomplished this task.> >> > >> > > A final comment. At this

stage of the game I don't think either abx> > > therapies or Yasko's protocol are sufficiently advanced for the simple> > > reason that I don't see people lining up to testify how they> > > unambiguously have their lives back. The closest Yasko comes is a few> > > autistic miracles that happen from time to time that she (maybe> > > legitimately) takes credit for and may or may not be somewhat> > > transferable to CFIDS cases. And the closest the abx camp comes is a> > > few turnaround / remission stories that happen from time to time that> > > they (maybe legitimately) take credit for. This does not impress me.> > > It isn't a cure. It isn't even very helpful most of the time.> > >> > > --Bob> >> > ***Your cynisism is clear and even understandable. However, this> > attitude and

understanding of it doesn't make the reasons for it true.> >> > ***The past doesn't equal the future and the fact that you are making> > errors in simply grasping particular aspects of glutathione> > depletion-methylation block approach's should hint at that your> > overall conclusions might be errant as well.> >> > ***> >> >>

[Guest guest]

Are you talking about the recent news report that a study shows that obese people have a much higher percentage of a certain gut bacteria than others? pennypjeanneus <pj7@...> wrote: Kate, you could look at the expense as your contribution to research. On that basis I would contribute, but maybe not to Yasko. Genetic research has a long way to go, not just a few years. I just read some fascinating stuff on HIV - the genetics of those who cannot get infected, and

then there is obesity and gut flora. But I am not holding my breath on the obesity thing except to hold my stomach in so I don't look quite as fat.a Carnes>> > Incidentally, we've spent about $2K on Yasko tests and supplements, > > read two of her books, watched a couple of her videos, so I think > > we have a fairly decent grasp, and we gave it a fair shake, thank > > you very much. Even so, I don't think we've completely given up on > > it, and came away with some insight; I just don't think it's quite > > ready for prime time in my wife's case, and her doctor feels that > > some of Amy's conclusions are a bit of a stretch. My wife has seen > > some tangible benefit from BH4 supplementation, though, and we feel > > that at least we got that much out of it. But I don't think the > > Yasko protocol is a slam-dunk

for everyone with CFIDS by any means.> >> > Best,> >> > --Bob> > I suspect it's like any other treatment. If your problem happens to > be exactly what a protocol addresses, then it's going to help. A lot > of us just don't really know what our problem is. I think it's pretty > clear that none of these protocols are ready for prime time anyway, > but people are just muddling along with some promising ideas. My > guess is that information about our own genetic makeup might be more > helpful in the near future as more discoveries are made, so I'm > thinking that testing might not be a total waste of money.> > - Kate>

[Guest guest]

Yeah, well dentists are still using nickel under their "porcelain" crowns, and a dentist told me that nickel is actually more toxic than mercury in the body. pennyBob Grommes <bob@...> wrote: It was an alloy of nickel and something else, but still ... I agree with you.No doubt, the inventor was male. ;-)--Bobpjeanneus wrote: Bob and all,Let me start by saying I never jump on Cheney's bandwagon. Anyone who thinks Klonopin protects the brain needs his head examined, but I digress.One thing that confounded me was Cheney's comments on the one patient who got the hole fixed with the standard surgical treatment which is to implant a nickel patch. I've done biotech research for so long that this idiocy (not Cheney's) does not surprise me. But who the heck would make a patch for a heart wall out of nickel? Any woman with pierced ears knows that most of us cannot wear cheap nickel posts in our ears LET ALONE IN OUR HEARTS.That family should find out what idiot biotech company is making nickel heart patches and SUE THEM. a Carnes

[Guest guest]

" her baroque protocol "

Priceless wordage, Bob.

a C.

[Guest guest]

Penny,

Wow. I’ve got some white fillings. Might

there be nickel in them?

-Mark

Yeah, well dentists are still using nickel under their

" porcelain " crowns, and a dentist told me that nickel is actually

more toxic than mercury in the body.

penny

[Guest guest]

To my knowledge "white"

fillings are composite (as opposed to amalgam = mercury) and are

generally composed of various plastics. The other place one might have

mercury, nickel, tin, etc., is as a component of crowns.

Even composite fillings can be toxic, just in different and presumably

less harmful ways than heavy metals. I'm told that a good biological

dentist will make some effort to test you with different materials to

find something that you are not sensitive to, if you ask.

--Bob

ma ni wrote:

Penny,

Wow. I’ve

got some white fillings. Might

there be nickel in them?

-Mark

Yeah, well dentists are still using nickel

under their

"porcelain" crowns, and a dentist told me that nickel is actually

more toxic than mercury in the body.

penny

[Guest guest]

How old are they? I went to a dentist who told me that many dentists (this was about 3 years ago) passed off "porcelain" crowns which were actually porcelain coated nickel. They did this because the nickle's really cheap and they make money and the patient doesn't know the difference. You might want to ask your dentist. Hopefully it's not the case for you. I know that some people say they can see metal showing through their crowns. That would be a pretty good sign that you don't have 100% porcelain. penny ma ni <statonberg@...> wrote: Penny, Wow. I’ve got some white fillings. Might there be nickel in them? -Mark Yeah, well dentists are still using nickel under their "porcelain" crowns, and a dentist told me that nickel is actually more toxic than mercury in the body. penny

[Guest guest]

Yeah, sorry, I was specifically speaking of porcelain crowns, which aren't actually always porcelain. pennyBob Grommes <bob@...> wrote: To my knowledge "white" fillings are composite (as opposed to amalgam = mercury) and are generally composed of various plastics. The other place one might have mercury, nickel, tin, etc., is as a component of crowns.Even composite fillings can be toxic, just in different and presumably

less harmful ways than heavy metals. I'm told that a good biological dentist will make some effort to test you with different materials to find something that you are not sensitive to, if you ask.--Bobma ni wrote: Penny, Wow. I’ve got some white fillings. Might there be nickel in them? -Mark Yeah, well dentists are still using nickel under their "porcelain" crowns, and a dentist told me that nickel is actually more toxic than mercury in the body. penny