Re: Penny: IV glutathione - Dan and Rich and Penny

[Guest guest]

Seems reasonable, Dan.

Or Penny might have something quite distinct going on...

Who knows which opportunistic pathogens may climb aboard the Lyme

train, in which of our cases, with which effects? Not even my own

Papal arrogance persuades me that I have that kind of insight, so

when Penny says 'maybe it isn't even Lyme in some cases' I agree and

the case I think of first is Penny's, actually.

There is also the whole sarcoid dealy-wheely, which manifests in

some people as a hyper-agressive reaction to low-grade pathogens, of

the kind that like nothing better than to crash a good Lyme party

and feed off the communal pathogen party plate.

How does Glutathione help or not help when you switch assumptions,

variables, bugs, immune biases...?

Oh uuuuuuu-huuuuu, Rich, are you about? I want to hear from the

Glutathione-Meister about this. Do you have hunches you're willing

to share on what conditions are more or less likely to derive

notable improvements from IV Glutathione, or the treatment duration

that may sometimes be needed before effects are felt?

Hmmm...since I'm thinking along those lines, Penny, can you tell us

what sort of treatment duration marked your disappointing Gluathione

ventures?

All so very interesting.

Da Pope blesses you with his lavender incense and bids you a

wonderful day, your Dan-Ness.

Scha

> > > as for Glutathione (GSH), over at the CFSExpeimental

> board

> > this is talked about quite a bit.

> > >

> > > the two main ways to increase GSH is with the precursor

> amino acids

> > in undenatuterd whey (Immunepro Rx), or also a new

> expensive product

> > called Lipoceutical Glutathione which is supposed to help the

> GSH

> > actually make it into the liver. here's their site.

> > >

> > > http://www.wellnesshealth.com/default.asp?ID=42

[Guest guest]

Da Pope blesses you with his lavender incense and bids you a

wonderful day, your Dan-Ness.

LOL. Thanks Pope ie.

I guess the reason I brought it up was based on my own related

experience with IV treatments. In a last-ditch (or one of many)

attempt to FIX myself, and get back to work (ha!), I went to the

Tahoma Clinic south of Seattle, where part of my treatment was

an IV vitamin/mineral slurpee-drip.

I took a bus down there twice a week for about 5-6 weeks, got my

fix in my own little barcalounger, then proceeded to head back

outside, where I'd wait for the bus to pick me up.

Some days I'd wait 10 minutes, other days 45 minutes. All

during rush hour. I might as well have glued my lips to the back

of an SUV I was breathin in so much crap. I'm quite confident in

my case anyway, that that situation completely negated any

possible benefit of the IV vits, if there were any in the first place.

Just my two cents.

d.

>

>

>

> > > > as for Glutathione (GSH), over at the CFSExpeimental

> > board

> > > this is talked about quite a bit.

> > > >

> > > > the two main ways to increase GSH is with the precursor

> > amino acids

> > > in undenatuterd whey (Immunepro Rx), or also a new

> > expensive product

> > > called Lipoceutical Glutathione which is supposed to help

the

> > GSH

> > > actually make it into the liver. here's their site.

> > > >

> > > > http://www.wellnesshealth.com/default.asp?ID=42

[Guest guest]

Aha...that really makes sense to me, Dan, and man do I relate...

Amazing what income and mobility constraints can do to turn all our

fine calculations about medicinal molecules are into a painful joke.

Of course, all these things are taken fully into account by all

those Pub Med studies...NOT.

OK, I gotta ask you...does the noise of the hydropulse I shipped you

make you want to go all Van Gogh on your ears? Expiring minds want

to know.

Your pal,

Pope ie, aka Agent Scha, Steere Manure Disposal Team...

> > > > > as for Glutathione (GSH), over at the CFSExpeimental

>

> > > board

> > > > this is talked about quite a bit.

> > > > >

> > > > > the two main ways to increase GSH is with the precursor

> > > amino acids

> > > > in undenatuterd whey (Immunepro Rx), or also a new

> > > expensive product

> > > > called Lipoceutical Glutathione which is supposed to help

> the

> > > GSH

> > > > actually make it into the liver. here's their site.

> > > > >

> > > > > http://www.wellnesshealth.com/default.asp?ID=42

[Guest guest]

I too have done the IV Glutitione. I did the Meyers Cocktail IV for

about 2 years then the M Cocktail with added Glutithione. I have a

long history of trying this and that. I could fill a page with the

things I have tried. That was when I still had a job and spent all my

disposable income on trying to get well. I don't have any extra money

now that I am on SSDI and Medicare. At the time it would give me

energy so I would go into denial about being ill (I do never wanted to

be ill) go shopping, clean house or otherwise over exert and crash big

time. The effects only lasted a day or two. This was all before I was

diagnosed with pathogens and began treating with antiviral and

antibiotic so it would be interesting to try it with these meds.

Marie

> > > > as for Glutathione (GSH), over at the CFSExpeimental

> > board

> > > this is talked about quite a bit.

> > > >

> > > > the two main ways to increase GSH is with the precursor

> > amino acids

> > > in undenatuterd whey (Immunepro Rx), or also a new

> > expensive product

> > > called Lipoceutical Glutathione which is supposed to help the

> > GSH

> > > actually make it into the liver. here's their site.

> > > >

> > > > http://www.wellnesshealth.com/default.asp?ID=42

[Guest guest]

Hi, .

You know what? There actually was a guy named Meister (Prof. Alton

Meister at Cornell) who did a big part of the research on glutathione,

until his death a few years ago. So you must be psychic to have come

up with that terminology, even though I can't claim that title.

Concerning IV glutathione treatment in people who are depleted in

glutathione, the problem is that while it supplies some glutathione to

quite a few organs, it doesn't get at the problem of the liver, which

is normally the body's main producer and exporter of glutathione to

the other organs. The liver is set up to export glutathione to the

blood, but it doesn't import it very well. Glutathione given by IV

has a half-life in the blood of about 1.6 minutes. It is picked up

mostly by the kidneys, some by the lungs and the rest by a variety of

other organs, tissues and cells. People say that IV glutathione makes

them feel better for a while, but usually the effect wears off by the

next day. I think the problem is that the liver is not up to normal

production, and what is put in by IV gets used up pretty rapidly.

So I think it is wise to build up the liver's production capacity in

addition to doing IV treatments. The recent advances in autism by S.

Jill et al., which I think may bear some similarity to CFS with

respect to its basic pathogenesis, suggest that supplementing with

folinic acid (the bioactive form of folic acid), methylcobalamin

(vitamin B12), and trimethylglycine (betaine) may make up for some

genetic problems with enzymes involved in the sulfur metabolism and

thus help to build glutathione. Other things that are very helpful

for the liver are milk thistle (or its active ingredient silymarin),

selenium, alpha lipoic acid, and the other B vitamins.

As for which conditions involve glutathione depletion, there is quite

a list known now: HIV, chronic fatigue syndrome, autism, cystic

fibrosis, Parkinson's, other neurological diseases, other respiratory

diseases (including COPD, acute respiratory distress syndrome and

interstitial pulmonary fibrosis), and probably multiple organ failure

in critical care. There is some anecdotal evidence that glutathione

is also depleted in Lyme disease. Heavy metal toxicity as well as

several other chronic toxicities necessarily involve glutathione

depletion. Any condition that involves oxidative stress is a suspect,

too.

Rich

> Oh uuuuuuu-huuuuu, Rich, are you about? I want to hear from the

> Glutathione-Meister about this. Do you have hunches you're willing

> to share on what conditions are more or less likely to derive

> notable improvements from IV Glutathione, or the treatment duration

> that may sometimes be needed before effects are felt?

[Guest guest]

Well, I was seeing my doctor regularly for quite a long while, up to

3 x a week, getting all kinds of i.v. treatments. For a while, H202

and colloidal silver infusions, but mainly nutrient infusions,

vitamin C, minerals, ALA, and after those, I usually asked for a

Glutathione chaser. I just can't say that any of it seemed to have

any kind of lasting effect, unlike the abx, which would cause

dramatic improvement, if not permanent. Unfortunately, I always

said I'd keep a treatment & health status diary, but with the

fatigue factor, never quite got around to it. And now dates and

details are fuzzy.

Everything always sounds so good in theory, not much of it ever

seems to really work that well at seriously relieving symptoms. For

me the exceptions have been abx and Benicar. Abx convinced me I'm

dealing with an infection. Benicar convinced me I'm dealing with

Inflammation. Just haven't found the way to eradicate both for

good. :-(

penny

> > > > as for Glutathione (GSH), over at the CFSExpeimental

> > board

> > > this is talked about quite a bit.

> > > >

> > > > the two main ways to increase GSH is with the precursor

> > amino acids

> > > in undenatuterd whey (Immunepro Rx), or also a new

> > expensive product

> > > called Lipoceutical Glutathione which is supposed to help the

> > GSH

> > > actually make it into the liver. here's their site.

> > > >

> > > > http://www.wellnesshealth.com/default.asp?ID=42

[Guest guest]

My experience is different.

As soon as I started doing weekly IV's (minerals particularly

magnesium, and some Vitamin C and b's) my periodic low grade fevers

went away, nerve/muscle pain reduced, sleep improved (I'm not saying

the latter are gone, the last 2, tho the 99 degree fevers have been

gone for about 4 years). I find them crucial.

When I added in a glutathione chaser that was another help, small but

significant.

IVIG has made a significant differenc ethat I think I now got

accustomed to...

ANd of course hyperbaric oxygen is the most important, gamma and

magnesium are close seconds.

Antibiotics, in turn, are horrible for me and never cured it. I onnly

took them in the beginning.

For some reason, the germanium I " ve been taking has had a weird/bad

effect on me, I don't know why.

I will report back on the comitras when I gulp, swallow, and pay

through the nose for it. But I have a feeling it will help, since it

downregulates the MMP's. Since upregulated MMP's make blood vessels

leaky they probably just make various cell membranes leaky, maybe it

is a way that borrelia adheres, penetrates and spreads better. Their

side effect of course is inflammation which is why we feel bad.

I'm really focussed now on finding ways not to kill it, but simply to

take its weapons away, to outsmart it.

I still hope will study the sugars for me but if not I guess

I " ll have to myself.

[Guest guest]

I'm sorry, but this doesn't make sense to me at all. You're

bombarded with this toxic environmental stuff all the time.

Shouldn't the infusion of high concentrates of the good stuff, being

pumped directly into the blood stream, have at least some kind of an

effect?

If not, then it's a waste of time, energy and money. One thing I've

found is that when something works, my body lets me know. I want

more of it, I crave it, I don't forget to take it. Kind of like

being addicted to stimulants or pain killers. Whereas the thousands

of dollars worth of supplements that sit expiring on my shelves (or

in the land fill) haven't called me in the same way. At some point,

the effort it took getting myself to my doctor's office, took far

more energy than any gain I was hoping might materialize.

penny

> > > > This is just a guess, but glutathione is depleted by so many

> > > > things, polution, pesticides, the chemicals in frankenfoods,

> > and

> > > > DRUGS, etc., that I would think -- emphasize THINK -- that

if

> > you

> > > > were exposed to a lot of these chemicals, then that may have

> > > > reduced or negated the IV gluathione?

> > > >

> > > > d.

> > > >

> > > >

[Guest guest]

I think oxygen is important, but again, I don't think hyperbaric is

any kind of guarantee AT ALL. And I'm talking from the experience of

many, many people who've had numerous dives for serious infections.

It helps heal wounds, we know that for sure, but I haven't met one

doctor who operates those things who believes they'll outright kill

an entrenched infection.

I had a portable hyperbaric unit. I sold it. From what I can see, at

best, the mild hyperbarics (which are very expensive) can help some

symptoms, maybe enhance treatment; at worst, the big chambers and

really low dives can screw up your eyesight, blow out your ear

drums, or even cause a stroke.

I'm not down on hyperbarics. It's just like everything else. For

some, it may make a difference, for others, not worth the trouble or

humongous expense. But from what I've seen, it's not THE answer!

Maybe it would make sense to try some of the simpler and cheaper

methods of increasing oxygen intake? Unless you do the really low

dives, the mild ones aren't doing much more than that, and the deep

pressurization units have risks. Remember that doctor who was

on the MP forum for a while? She ran her own hyperbaric clinic

before closing it down. She said as much. Her results with patients

were less than thrilling, helpful for some, although I don't think

she personally was one. :-(

Sorry to be a downer, but I feel like we're turning into all these

other lists that recycle the same treatments over and over and over.

Just wanting so badly for one treatment to be the miracle cure (Hey,

I'm guilty, I'm the one who thought Marshall had really maybe done

it this time - at least his theory WAS new). But we keep getting on

these same band wagons. I've been run down by so many band wagons, I

can't begin to count them. What sometimes gets to me is to see them

continuously coming around again, and again. I'm on the band wagon

carousel. :-(

penny

Speaking of oxygen, and the latest of band wagons, anyone hear of

this strange new treatment?

http://www.bio-resonance.com/airnergy.htm

p.p.s. Jill, are you doing the intensive Katz protocol IVIG? Or are

you just getting periodic injections?

> My experience is different.

> As soon as I started doing weekly IV's (minerals particularly

> magnesium, and some Vitamin C and b's) my periodic low grade

fevers

> went away, nerve/muscle pain reduced, sleep improved (I'm not

saying

> the latter are gone, the last 2, tho the 99 degree fevers have

been

> gone for about 4 years). I find them crucial.

> When I added in a glutathione chaser that was another help, small

but

> significant.

> IVIG has made a significant differenc ethat I think I now got

> accustomed to...

> ANd of course hyperbaric oxygen is the most important, gamma and

> magnesium are close seconds.

> Antibiotics, in turn, are horrible for me and never cured it. I

onnly

> took them in the beginning.

>

> For some reason, the germanium I " ve been taking has had a

weird/bad

> effect on me, I don't know why.

>

> I will report back on the comitras when I gulp, swallow, and pay

> through the nose for it. But I have a feeling it will help, since

it

> downregulates the MMP's. Since upregulated MMP's make blood

vessels

> leaky they probably just make various cell membranes leaky, maybe

it

> is a way that borrelia adheres, penetrates and spreads better.

Their

> side effect of course is inflammation which is why we feel bad.

>

> I'm really focussed now on finding ways not to kill it, but simply

to

> take its weapons away, to outsmart it.

>

> I still hope will study the sugars for me but if not I guess

> I " ll have to myself.

[Guest guest]

If I recall correctly, aren't you the person who couldn't figure out

how to operate hers?

I know you're feeling bad right now, so your posts seem a bit

aggressive and I understand when you feel better you'll calm down a

bit.

Who knows what " outright kills an entrenched infection. " Maybe

controlling it and clinical improvement/wellness is a better goal.

I had a portable hyperbaric unit. I sold it. From what I can see, at

> best, the mild hyperbarics (which are very expensive) can help some

> symptoms, maybe enhance treatment; at worst, the big chambers and

> really low dives can screw up your eyesight, blow out your ear

> drums, or even cause a stroke.

I would disagree here. " Help some symptoms. " I gained a great deal of

quality of life from mine. And still do. As for the big chambers

blowing our your eardrums or causing a stroke, I never heard of such

a thing. I do agree in sensitive individuals, as for exmaple me, a

ton of longterm hyperbaric has affected my lens but its more than

worth it to me as I keep doing it.

>But from what I've seen, it's not THE answer!

Is there " THE answer " ? All I know is mine has changed my life and I

would never give it up. It was not a cure and I have gone on to add

other things and am still searching for still other helpful aids, or

something to get rid of lyme if at all possible.

> Maybe it would make sense to try some of the simpler and cheaper

> methods of increasing oxygen intake? Unless you do the really low

> dives, the mild ones aren't doing much more than that,

Oh yes they are and I know from experience.

I can get out of a herx anytime I want, by getting in the chamber. I

can stop a paralyzing migraine. I can quench inflammation. I can gain

energy. I can improve sleep. Etc etc.

Please don't speak for others. I'm sorry it didn't work for you, but

as I recall, you didn't know how to operate it properly and gave it

to your doctor for a while.

and the deep

> pressurization units have risks. Remember that doctor who was

> on the MP forum for a while? She ran her own hyperbaric clinic

> before closing it down. She said as much. Her results with patients

> were less than thrilling, helpful for some, although I don't think

> she personally was one. :-(

I went to . She has bad tickborne illness now. She and I have

argued in a friendly way back and forth as I believe the mild

chambers are sufficient and she doesn't.

>

> Sorry to be a downer, but I feel like we're turning into all these

> other lists that recycle the same treatments over and over and

over.

I'm not sure why I brought this up, or if you did, but I have helped

people with it. Melody and her husband, whoever they are, I think

they're on lymestrategies, and are both ill, tried an hour in the

mild hbot yesterday and wrote me that it helped a great deal, just

one session. Some RN wrote me from a few years ago, she and her

husband have a seacrest. I think that's a hardchamber if I'm correct.

She wrote me on my email and I don't even recall earlier emails

iwth her but they find it invaluable and also they help another

lymie. They feel it helps all the neuro symptoms.

So for some it is a life changing and invaluable tool

> Just wanting so badly for one treatment to be the miracle cure

(Hey,

> I'm guilty, I'm the one who thought Marshall had really maybe done

> it this time - at least his theory WAS new). But we keep getting on

> these same band wagons. I've been run down by so many band wagons,

I

> can't begin to count them. What sometimes gets to me is to see them

> continuously coming around again, and again. I'm on the band wagon

> carousel. :-(

>

>

No reason to feel guilty. YOu just feel bummed out now because you

thought you were getting well on MP and you didn't. I never thought

that protocol made much sense.

Anyway, on to my next post.

[Guest guest]

No, that's not true at all. I could operate my unit. I was just too

fatigued and in too much pain to manage doing it much. It's not easy

if you're really sick.

And after hearing case after case of people doing hyperbarics, both

mild and deep, I realized that it's probably not worhth the $10,000

or so required to own one, or hundreds of dollars per dive for

treatment in the big ones, especially when you need a lot of dives.

I don't know how much practitioners charge for the mild hyperbaric

dives, but I don't think they're worth the expense, or going to help

much more than say, whey protein is, if you're on a limited budget.

You have to remember, I know and talk to a lot of people who've used

these things extensively. For people who don't have the disposable

income, there ARE breathing techniques people can do that are free.

The big dives are a different story, but if you've been in one, as I

have, then you know that you are well informed by the doctor of the

medical risks, which involve stroke, permanent vision damage and the

possibility of having tubes put in your ears to prevent ear damage.

I said I'm not down on HBOT, but I guess I just get worried to hear

HBOT, or anything else that's been well round the block being touted

as such a great healer, when in fact, it's not very proven at all.

Maybe it's been great for you, and I celebrate that, but I

personally don't think it's going to be the answer for someone as

sick as Scha, and getting his hopes up that it is, gets me

worried. I've had my hopes dashed too many times, and he's sicker

than I am. If I knew he had unlimited financial resources, and

someone who could help him manage all these treatments, I'd say go

for it. But that's not the case.

And regarding your comments about the MP. Actually, a big portion of

the MP HAS worked for me. The Benicar has removed all of my symptoms

except fatigue. And antibiotics remove fatigue for periods of time,

until they stop working and it's on to finding the next one. So the

principles of the MP still hold promise. But where I think it falls

short is in the understanding of our organisms, the seriousness of

our disease states, and in the limited abx choices. Plus an

overemhpasis on D dysregulation, which is not clearly understood at

all yet. Not to mention the dictatorial approach that comes with the

protocol, and the fact that you can end up being sued, as I was, for

disagreeing with the " creator " of the protocol.

But despite my reservations about much of it, aspects of the MP,

well, Benicar, has still had a far greater impact on my health than

anything else I've tried other than my intial response to certain

antibiotics that can relieve my fatigue. I'd still take all the

other symptoms I've had back, if I could trade them for relief of

the relentless exhaustion and fatigue.

penny

> If I recall correctly, aren't you the person who couldn't figure

out

> how to operate hers?

>

[Guest guest]

Penny, I *was* really sick and that's why I did it--it's not 'hard'

to operate if you are facing disability, or otherwise get in it and

zip it up, let it pressurize, and rest while breathing 02 under

pressure.

Who are the people you talked to who own a chamber who were not

helped? I hear good feedback. It certainly is worth it--you talk

about thousands of $ of supplements unused...

It is unfair to say its not worth the expense for others, or to say

that it is being touted as the magic bullet (I'm certainly not doing

that).

Please tell me publicly or privately who the people are who had mild

chambers for lyme that got rid of them because they didn't feel they

were helping. I don't know any such people.

I also did deep dives--one month, and then later 2 months. You keep

mentioning these risks of stroke, vision damage and tubes in your

ears. Where are you getting this information from? I never met one

person or heard of one person who had a stroke or had to have tubes

in their ears as a result of deeper dives. I agree about vision

damage to a small # of people. Its still worth it imo, though I have

argued that all people should close their eyes in the deep dives, and

probably just use a mask not a hood.

> Maybe it's been great for you, and I celebrate that, but I

> personally don't think it's going to be the answer for someone as

> sick as Scha, and getting his hopes up that it is, gets me

> worried.

Your personal feeling is just that, a personal feeling. Anyway it's

clear to me is taking a very different approach to his care than

I would if I were n his body and he has every right to do that. His

situation sounded so dire I meant to offer help but it came across as

bossy, interfering, etc, so I stop. Also, he's nowhere near a chamber

and won't be able to get to one easily given his disability so in

fact, its not a great choice for him, unfortunately.

My problem with what you are saying is you never gave the chamber a

good chance yourself, and I recall that. You were mad at oxyhealth

but they can't give you support as they sell them. Lance can give

that support being a former lymie and now extremely busy, travelling

a lot, and still uses the portable regularly to keep himself well. In

addition, I don't know who the anonymous people are who have home

portables and say they don't work because I don't know of one such

person.

> And regarding your comments about the MP. Actually, a big portion

of

> the MP HAS worked for me. The Benicar has removed all of my

symptoms

> except fatigue.

Sorry but I don't trus tit. Like all immunomodulating therapies I

think the long-term consequences for some people will be serious--by

which I mean, worse infection, or cancer. I would never do it myself.

If it helps your quality of life now then that is good. I undestand

the need for that.

[Guest guest]

Jill,

I feel you're reading an awful lot into my posts that's not there.

Regarding the risks of HBOT: They're very real, although

probably " rare " . Just do some google searches on HBOT. Reviewing the

risks of HBOT is part of the " interview " process I had before an

HBOT physician would allow me in a big chamber. Did you not get

this? It's standard. It's also when they tell you what they'll do in

case of a fire, which is a very serious situation in an oxygen rich

environment. If you've got sinus problems for example, you might not

be allowed in or have to get x-rays and ear tubes first. I got into

one before I knew I had sinus disease. Luckily, I didn't blow my ear

drums out. Of course, the small, mild chamber you're using doesn't

go anywhere near the same pressure depth, so it's a completely

different ball game risk wise. But if the benefits are so mixed with

the BIG chambers, how can they be anything but mixed with the mild

chambers?

I also didn't mean to say anything about people " selling " their

portable units (other than a reference to myself). I do know one

woman, who I'm sure you know as well, who returned hers, because she

also felt it was very difficult to use. You must be in better shape

than we are, because we both really struggled with using the chamber

at home. Not to mention, she wasn't even informed of the need for an

oxygen concentrator so was sold a basically useless device for many

thousands of dollars. At least she was able to return hers. I

definitely feel the woman at the manufacturer's headquarters

misrepresented her product and her company's service to us. I would

never ever recommend their service. They need to remember who their

customers are and that they're dealing with sick people here, not

just people who've got money to spend on fancy gadgets.

I DO know MANY people who've done HBOT therapy (in the big

chambers). I know a lot of people sick with a lot of infections

other than lyme, and I listened very carefully to their experiences

with HBOT. Again, I'm not down on it, I think it has its place, but

I think it's very expensive with very little in the way of proven

results for treating infections. It promotes healing, that's proven,

but I feel pretty confident (and supported) that HBOT alone can't

eradicate infections. There's actually no real research that I even

know of to support that it can. The portable chamber makers can't

say so, and the doctors I've talked with who run the big chambers

are pretty adamant that they don't believe they can. The bulk of

research on HBOT is mainly for wound healing (after surgeries),

diabetic osteonecrosis (bone death due to osteomyelitis), crushing

injuries, cancer surgery, things of that sort. The mild chambers, on

the other hand, were designed for people who are suffering from

problems like exposure and altitude sickness and carbon monoxide

poisoning, or people with the bends from diving, right? And the

jury's even out on some of these applications. There's more research

being done, but nothing much that applies to us yet. Doesn't mean it

might not be helpful, but certainly not proven.

I'm not here to argue about what does or doesn't work for you, or

what works or doesn't work for me. It's not the point. I'm not here

to convince anyone of anything. I just get concerned when I see

something so expensive being touted as such a great healing aid,

when I've heard and experienced much to the contrary. I strongly

encourage people to do a lot of research, and talk to a lot of

people who've been there before embarking on an expensive therapy

like HBOT. Besides, I think there's still a group devoted to

HBOT isn't there? Maybe you can provide the link. It's a pro-HBOT

site, but at least the discussion is focused on HBOT.

It's not such a big deal financially, experimenting with supplements

or dietary modifications. Sure they add up, but taken individually,

they're not so bad. For me, it's more a matter of continuous

disappointment that gets to me. But making a mistake with a big

ticket item can be hard to recover from. I know from experience. I

lost money on my HBOT experience, and know people who've spent

thousands out-of-pocket for their HBOT treatments. And others who've

gone to Mexican clinics, or raw food clinics, etc., etc., etc. I'm

still paying for my nursing care for the I.V.s I had two years ago.

I think we should let people know all the possibilities before

touting expensive therapies.

These days I'm very interested in the intensive IVIG therapy, and

I'm hearing some great results, but I'm definitely biding my time on

that one, because it's fantastically expensive, and I want to hear

from more than just a few people. I'd still love to discuss it from

the stand point of why it might be working and if there's anything

we can learn for applying to our own treatments. That's why I

suggested that if HBOT is really helping, then discussing

alternative methods of oxygenation would make sense.

I've already gotten burned more than once by jumping on band wagons.

I'm not challenging that HBOT works for you. I just want people to

go into things with a balanced view. I've learned the hard way what

happens when you don't.

penny

> Penny, I *was* really sick and that's why I did it--it's

not 'hard'

> to operate if you are facing disability, or otherwise get in it

and

> zip it up, let it pressurize, and rest while breathing 02 under

> pressure.

>

> Who are the people you talked to who own a chamber who were not

> helped? I hear good feedback. It certainly is worth it--you talk

> about thousands of $ of supplements unused...

>

> It is unfair to say its not worth the expense for others, or to

say

> that it is being touted as the magic bullet (I'm certainly not

doing

> that).

>

> Please tell me publicly or privately who the people are who had

mild

> chambers for lyme that got rid of them because they didn't feel

they

> were helping. I don't know any such people.

>

> I also did deep dives--one month, and then later 2 months. You

keep

> mentioning these risks of stroke, vision damage and tubes in your

> ears. Where are you getting this information from? I never met one

> person or heard of one person who had a stroke or had to have

tubes

> in their ears as a result of deeper dives. I agree about vision

> damage to a small # of people. Its still worth it imo, though I

have

> argued that all people should close their eyes in the deep dives,

and

> probably just use a mask not a hood.

>

>

[Guest guest]

This is really annoying, and I am getting off this list for a good

long while. I am tired of your posts about hbot. And you have no right

assuming I was in better shape than you when I got my home chamber. In

fact it speaks of absolute desperation that I got one, that I had to

get one.

, I wish you well. ERic, thanx for your posts. I don't need this

list and I will keep it bookmarked but it was only 's posts that

made me want to help. I never posted much on this list.

So fine, diss HBOT ie damn it with faint praise and complain about the

manufacturer and talk about strokes, seizures, blown eardrums and

mixed results. Its your list and you can have it your way.

[Guest guest]

Jill,

If you're not willing to discuss both sides of something, then it

probably isn't the best list for you. We've been doing that all along

here with no problems. I'm not exaggerating anything either, and I'm

not trying to discredit you. I'm not censoring you. I'm just asking

for balance.

Unfortunately, I just responded to 's post and lost it to cyber

space and no longer have the energy to reconstruct it. Perhaps you'd

understand better what this list is about, if it hadn't vanished.

Regardless, you're welcome to come or go, just as people here are free

to have differing opinions.

penny

> This is really annoying, and I am getting off this list for a good

> long while. I am tired of your posts about hbot. And you have no

right

> assuming I was in better shape than you when I got my home chamber.

In

> fact it speaks of absolute desperation that I got one, that I had to

> get one.

>

> , I wish you well. ERic, thanx for your posts. I don't need this

> list and I will keep it bookmarked but it was only 's posts that

> made me want to help. I never posted much on this list.

>

> So fine, diss HBOT ie damn it with faint praise and complain about

the

> manufacturer and talk about strokes, seizures, blown eardrums and

> mixed results. Its your list and you can have it your way.