Hyperbaric

[Guest guest]

Dianne: HAVE I GOT INFO FOR YOU ON HYPERARIC. Unrelated to my fibro,

narcolepsy , and GWS I had a rare bone/fungus bacteria called Actinomycosis.

Its actually a disease they often find in cattle (ok no mooo jokes here

girls). Anyway, I tried everything in the whole wide world to kill it. My

maxiiliofacial reconstruct left me in a situation where if the infection

spread anymore I would have to remove everything and start all over again for

a second face reconstruct. NOOOOO WAY. So, I found that hyperbaric

treatments could be used. First I tried them alone for 9 months without IV

antibiotics. But it didn't work for the bone infection so then I had a

central line put in and got 16 million units a day of iv penicillen (no not

for the clap ) and did the hyperbaric. It is a controversial treatment in

the US but very well used in other parts of the world. I must tell you it

was really energizing as a side effect for it. Also my skin looked great.

The idea is that it increases the amount of oxygen in your body systemically.

Thats why just sticking for example your hand or leg in wouldn't workk You

have to breathe it. Its not that bad. First I did it at a hospital but the

patients were all so sick ie: stroke patients, burn patients that I quickly

became extremely depressed. I was lucky enough to switch to a private

facility. It is time consuming. There are 2 types. Monoplace chambers which

i used they put in a big bubble like thing and you can watch tv etc. In the

facility I went to they even changed the tv channel for you. There is

another kind that looks like a submarine where they put a big hood on you. I

liked the monoplace better. I could go on and on. I know alot about it

because the facility hired me to tell my story and recruit doctors to refer

patients which I did quite well. I also know some strategies to get your

insurance to pay. Its good for strokes, bone infections, compromised

wounds...as far as cfs I am not sure what the long term effects would be but

you will feel great during the weeks you do it. Its high priced though. Let

me know if you wantmore info and I can help you find a facility near you.

You might check with Fern about her experience with hyperbaric. xoxoxoxoxox

Shell

[Guest guest]

Re: HyperbaricHi All,

Thought this would be of interest. This is a reply that was forwarded to me

about the use of Portable Hyperbaric chambers. Judy Rudin is a CFS patient

working at a hyperbaric clinic.

Al

Re: Hyperbaric

Judy,

(unrelated text removed)

Vis a vis Al's experience, there's no comparison between what he's doing and

HBO. I'm glad he's getting some benefit, but frankly it's pretty surprising.

As far as I know, those chambers operate on room air and only dive to a very

shallow depth.

Judy R.

___________

Here is a list of protocol questions that should help you in your search for

information. I wrote this up because it's very important when discussing HBOT

to be sure you're comparing apples to apples. If someone says HBOT didn't work

for them, see what the answers to these questions are. In most cases, the

correct protocol was not followed when a person didn't achieve results.

a) Was the chamber approved by the FDA as a Class II Medical Device? (It should

be.)

How long was the dive? (It should be a full 90 minutes.)

c) How deep was the dive? (It should be 48 feet of seawater. If you go to a

lesser depth, you're unlikely to get well without a ton of treatments.)

d) Were you breathing 100% oxygen? (The answer should be yes.)

e) How often was the chamber flushed with oxygen? (It should be every 7-10

minutes.)

f) How many treatments did you have? (There should be at least 10 (15 is

better)).

g) Did the clinic provide these treatments on consecutive days without a break?

(The answer should be yes. This is crucial!!)

h) Did they put you on any kind of maintenance protocol afterward? (It's

important to go on one for many people.)

i) Did the chamber require you to wear a mask or hood? (This is a pretty

uncomfortable way to do HBOT. Our chambers require no masks or hoods. You just

get in and read, watch a video, or listen to music (or sleep!)).

j) Were there windows in the chamber so you don't feel claustrophobic? (Some

are built like steel tubes with just one small window. Ours are pretty roomy

and have 5 windows. We have an " easy chair " option or a mattress option for

comfort.)

As you can see, i and j are actually comfort questions. These are important to

ask in choosing a clinic, because you'll be spending a lot of time in that

chamber!

I hope this is helpful. The bottom line is that HBOT really works, but CFS

patients are usually so broke, worn out, and sceptical by the time they get to

us that it's hard to convince them they've finally found an answer. I feel

fortunate that I was told about it by a friend who was even sicker than me, and

I got to watch her get better before committing myself to the treatment. Now I

look at those seven years of my life with CFS and FMS as a black hole that I got

sucked into somehow, and which is fortunately behind me.

I hope I get to meet you and show you our clinic. I feel certain we can help

you.

Judy Rudin

Patient Services Coordinator

San Diego Hyperbarics

Bayview Medical Center

446 26th St. - Suite 201

San Diego, CA 92102

toll free (888) 691-1482

judyrud@...

voice (858) 792-4600

cell (858) 232-4474

[Guest guest]

From: Al Melillo [mailto:melillo3@...]

Re: HyperbaricHi All,

Thought this would be of interest. This is a reply that was forwarded to

me about the use of Portable Hyperbaric chambers. Judy Rudin is a CFS

patient working at a hyperbaric clinic.

[skari, M] I'm adding my comments based on my experience so far.

Re: Hyperbaric

Vis a vis Al's experience, there's no comparison between what he's doing and

HBO. I'm glad he's getting some benefit, but frankly it's pretty

surprising. As far as I know, those chambers operate on room air and only

dive to a very shallow depth.

[skari, M] I don't know if I'd go so far as to say there's no

comparison, but there is a big difference. I look at it more as a continuum

with " mild " HBT being on one side of the HBT continuum and a 99 foot " dive "

on pure oxygen as being on the other side of the continuum. There are fewer

benefits on the mild side, but fewer dangers as well. There are many

documented benefits from mild HBT on room air, but they would obviously be

less and take more treatments than major " dives " . With the major dives of

99 feet in pure oxygen there's a danger of oxygen poisoning and seizures

which is not possible in the milder chambers.

Here is a list of protocol questions that should help you in your search for

information. I wrote this up because it's very important when discussing

HBOT to be sure you're comparing apples to apples. If someone says HBOT

didn't work for them, see what the answers to these questions are. In most

cases, the correct protocol was not followed when a person didn't achieve

results.

[skari, M] 1st a clarification in terms. HBT = HyperBaric Therapy

(putting the body under increased pressure using room air and without added

oxygen. this can be as " mild " as 3 lbs/in2 or as much as 45 lbs/in2 or

more) HBOT = HyperBaric Oxygen Therapy is HBT with added oxygen.

Customarily, but not necessarily, this is 100% oxygen. In some HBOT only a

small amount of extra oxygen is added. In many or most 100% oxygen is used.

a) Was the chamber approved by the FDA as a Class II Medical Device? (It

should be.)

[skari, M] I don't agree unless the pressure being put on the body

is greater than 5 lbs/in2.

How long was the dive? (It should be a full 90 minutes.)

[skari, M] I think this is individualistic. My reaction to *mild*

HBOT was that 90 min was too much. Was very dizzy, weak, brain fogged after

90 min. For me, at this time, about 60 min is optimal. The more I use my

chamber, the longer time I can handle without negative effects. I would

agree that anything less than 50 minutes is just not enough.

c) How deep was the dive? (It should be 48 feet of seawater.

If you go to a lesser depth, you're unlikely to get well without a ton of

treatments.)

[skari, M] I agree that if the " dive " is " shallower " more

treatments will be needed, but I disagree that they must be at 48 feet.

HBOT is too new a science that such absolutes can be stated. I've read a

lot of research in HBOT, and everything indicates that the effects are

cumulative and that many " shallow dives " seems to be essentially equal to

fewer " deeper dives " . I was interested to note that the www.ms-selfhelp.org

<http://www.ms-selfhelp.org> centres use " dives " equivalent to 33 feet.

d) Were you breathing 100% oxygen? (The answer should be yes.)

[skari, M] Again, I look at this as a continuum. HBT (without

added oxygen) has definite health benefit, but the higher % of oxygen is

definitely better. However, the longer 100% O2 is used, and the greater the

" depth " of the " dive " , the greater the chance of seizures and oxygen

toxicity. However, while other people gain benefit from simple " mild HBT " I

think this is " not enough " for someone with serious problems like CFS. I

really think added oxygen is essential for PWCs.

e) How often was the chamber flushed with oxygen? (It should be every 7-10

minutes.)

[skari, M] All chambers must be flushed with air or oxygen

continuously or repeatedly or you can get CO2 poisoning.

f) How many treatments did you have? (There should be at least 10 (15 is

better)).

[skari, M] I agree here completely. With as " mild " as my chamber

is, I didn't start getting benefit until about 15 sessions. All research

indicates that the effects of HBOT are cumulative.

g) Did the clinic provide these treatments on consecutive days without a

break? (The answer should be yes. This is crucial!!)

[skari, M] I agree. Even though the effects are cumulative, there

seems to be some sort of " critical mass " that must be reached and this can

only be done if there is not too much time separation between sessions.

h) Did they put you on any kind of maintenance protocol afterward? (It's

important to go on one for many people.)

[skari, M] From what I've read, the benefits of HBOT degrade over

time. Some benefits degrade within hours, while others may take as long as

5 years to degrade. It seems that maintenance sessions may be the key to

sustaining benefits.

i) Did the chamber require you to wear a mask or hood? (This is a pretty

uncomfortable way to do HBOT. Our chambers require no masks or hoods. You

just get in and read, watch a video, or listen to music (or sleep!)).

j) Were there windows in the chamber so you don't feel claustrophobic?

(Some are built like steel tubes with just one small window. Ours are

pretty roomy and have 5 windows. We have an " easy chair " option or a

mattress option for comfort.)

[skari, M] Claustrophobia is a serious question. Some people are

just too claustrophobic to do this. Just as some people are too

claustrophobic to dive. Some people cannot stand the feeling of being " cut

off " from the world while they are in the chamber.

Patti

--

[Guest guest]

I tried it, 20 times , 2.5 hrs per. didnt help at all.

erik

Hyperbaric

I asked the N.D. about hyperbaric chambers and here's what she said:

OH- we had a presentation of the Hyperberimetruc Oxygen therapy with NAET at

the symposium. It was really impressive if done right. Getting oxygen to

the brain requires the help of good RBC's that are not hampered by toxins.

Those people with CFS need to be Stabilized, Cleared of the top TEN, treated

for the antibody factors that have made certain, virus's, bacteria,

mycoplasms etc. turn against thebody.

[Guest guest]

,

Hyperbaric O sounds promising. Did you see these results after one

treatment? I am going to look into it.

Bay Area, California

Re: Blood gases test results--for Tim

Rich,

The link showing 83% PWC improved using hyperbarics was:

http://www.drys00384.pwp.blueyonder.co.uk/hbot.htm

This UK author shares my view that hyperbarics should be

systematically assessed for treatment of CFS.

After a reread, a more correct statement would be that out of 336 PWC

tested in 2 groups, between 70-83% reported some improvement, while a

small number (2 of 36 in one reported sample) got worse.

The most common improvement was reduced fatigue which is consistent

with my experience. I fit into your hypercoagulated (2 positives on

Hemex ISAC panel) category, with some sensitivity to altitude. So

you are correct to predict that I would benefit from hyperbaric O2.

Specifically I have 2 main groups of symptoms. The symptom group

thankfully relieved by hyperbarics has been:

1) Subjective 95% reduction of low grade infections I almost always

had: sore throat, swollen neck lymph nodes, dermatitis, unidentified

stomach bug. Now I just feel the edge of these when tired.

2) Major increase in general energy level and in also terms of a

feeling of reserve strength in muscles that I had almost forgotten

about.

3) Relief of FM type symptoms: sore/stiff neck, general body and

muscle soreness.

My other symptoms relate to adrenal insufficiency per 24 hour

cortisol testing. These include extreme intolerance to exercise,

cold all over (not just extremities as in Reynauds), excessive day

and night sweats, delayed sleep, and fatigue if I push the above

limitations. These have not yet improved significantly with

hyperbarics.

But hyperbarics remains incomparably better than the literally dozens

of remedies I have tried over 20+ years. I feel that knocking out

half the symptoms gives me a much better foundation to go after the

rest.

I like your O2 transport or partial Krebs blockade model. It it is

consistent with how different PWC are in what ails and helps them.

It also suggests that it is easy to predict who will benefit from

hyperbaric O2, making it a potentially very useful treatment.

Beyond the model I feel the issue to understand in terms of the PWC

community is:

(1) What portion of PWC are in the group with O2 transport defects

rather than a Krebs blockade?

(2) Is hyperbaric a viable treatment relative to other options for O2

transport improvement?

On the first question, my impression from Hemex/Dave Berg is that a

majority of chronic fatigue cases suffer hypercoagulation. I can't

quote a percent, and I would welcome any information or correction of

this assumption.

On the second question the standard treatment for hypercoagulation is

heparin, usually by injection. Like most medications there are

potential side effects: osteoperosis, hair loss, and bleeding.

The beauty of hyperbarics by contrast is that it is not invasive and

vitually without side effect. While forcing oxygen to the cells for

aerobic ATP production, it also tends to kill off anerobic baterica,

mycoplasmasm, even Lyme Disease, improve white cell production, and

clear the mind. It does not create a serious herx reaction.

Moreover, successful outcome does not depend on isolating exact

pathogens as with many protocols. And it is good for you to the

point where athletes are using it to improve performance.

Nevertheless hyperbaric O2 is almost untried for CFS. I was the

first CFS customer at the local HBOT center (there was 1 successful

outcome FM before me). If you grant that hyperbarics should help the

group with poor O2 transport then I am one person closer to getting

this potentially vital point across.

Regards,

[Guest guest]

Hi

A couple comments on your message (which was interesting by the way.) All

the people I had heard from found they didn't get benefit, or they did but

it wore off after a few times.

> On the second question the standard treatment for hypercoagulation is

> heparin, usually by injection. Like most medications there are

> potential side effects: osteoperosis, hair loss, and bleeding.

This is somewhat exaggerated, as the doses taken by us are so low. I have

never heard of any side effects from low dose heparin but that doesn't mean

there aren't some. They just aren't common.

> While forcing oxygen to the cells for

> aerobic ATP production, it also tends to kill off anerobic baterica,

> mycoplasmasm, even Lyme Disease, improve white cell production, and

> clear the mind. It does not create a serious herx reaction.

I don't understand the mechanism by which you can kill bacteria and not get

a herx. Unless you are killing it more slowly, and thus a reduced herx.

But if the herx is caused by the body's inability to pull the toxins out

fast enough, how does this not happen with hyperbaric?

Finally, what I believe you are saying is that instead of treating the thick

blood, you are instead getting oxygen to your cells in another way. I don't

believe you're claiming hyperbaric thins the blood. The problem with this

is that you still have thick blood, and people might have a bunch of other

symptoms related to that which aren't being touched. For example, heart

disease and strokes are associated with thick blood. When I took heparin my

lifelong extreme menstrual pain stopped, my interest in sex returned, my

orthostatic intolerance improved, my hands and feet weren't cold all the

time. I'm sure there are things I'm not remembering. The point is there

are other reasons that thick blood is bad besides not getting enough oxygen.

So it seems like the best thing would be to do both heparin and hyperbaric.

Thanks,

Doris

[Guest guest]

Just adding my two cents ) There are numerous other ways to

thin the blood as well. Just a small example - Ginger, Gingko and

Garlic all affect the platelets to some degree.

Dawn

> Hi

> A couple comments on your message (which was interesting by the

way.) All

> the people I had heard from found they didn't get benefit, or they

did but

> it wore off after a few times.

>

> > On the second question the standard treatment for

hypercoagulation is

> > heparin, usually by injection. Like most medications there are

> > potential side effects: osteoperosis, hair loss, and bleeding.

>

> This is somewhat exaggerated, as the doses taken by us are so low.

I have

> never heard of any side effects from low dose heparin but that

doesn't mean

> there aren't some. They just aren't common.

>

> > While forcing oxygen to the cells for

> > aerobic ATP production, it also tends to kill off anerobic

baterica,

> > mycoplasmasm, even Lyme Disease, improve white cell production,

and

> > clear the mind. It does not create a serious herx reaction.

>

> I don't understand the mechanism by which you can kill bacteria and

not get

> a herx. Unless you are killing it more slowly, and thus a reduced

herx.

> But if the herx is caused by the body's inability to pull the

toxins out

> fast enough, how does this not happen with hyperbaric?

>

> Finally, what I believe you are saying is that instead of treating

the thick

> blood, you are instead getting oxygen to your cells in another

way. I don't

> believe you're claiming hyperbaric thins the blood. The problem

with this

> is that you still have thick blood, and people might have a bunch

of other

> symptoms related to that which aren't being touched. For example,

heart

> disease and strokes are associated with thick blood. When I took

heparin my

> lifelong extreme menstrual pain stopped, my interest in sex

returned, my

> orthostatic intolerance improved, my hands and feet weren't cold

all the

> time. I'm sure there are things I'm not remembering. The point is

there

> are other reasons that thick blood is bad besides not getting

enough oxygen.

>

> So it seems like the best thing would be to do both heparin and

hyperbaric.

>

> Thanks,

> Doris

[Guest guest]

,

The result after 3 treatments was a big relief of muscle pain and

tightness. At first the treatments made me relaxed and sleepy but

not sick. After 5 I knew I had something good going and after 10 I

felt I had a home run in terms of increased energy.

Typically a course of 20-40 treatments is recommended but from my

experience 5 will give an indication and 10 was plenty for an

unabiguous outcome.

One issue is that you need sufficient pressure. The center I went to

used 1.5 atmospheres absolute. I asked for a higher pressure based

on reading that showed bacterial infections respond to higher

pressures in the 2-3 ATA range. For example Lyme Disease requires

2.36 ATA. My first set of treatments were at 2-2.2 ATA and now I am

using about 2.8 ATA.

> ,

>

> Hyperbaric O sounds promising. Did you see these results after one

> treatment? I am going to look into it.

>

>

> Bay Area, California

> Re: Blood gases test results--for Tim

>

[Guest guest]

Hi Doris,

Thanks for your excellent comments. It is great that you did so well

with Heparin. Although I had 2 positive ISAC panel tests (1 is

considered positive if you have CFS more than 10 years per Berg) my

doctor was not impressed and therefore unwilling to prescibe

heparin. He focused instead on trying to reduce hypercoagulation by

increasing adrenal function and hence immunity using sublingual ACE.

That approach did not work for me.

Instead I tried every OTC anticoagulant I could find: garlic,

bromelain, turmeric, piraceteam, aspirin, fish oil, cocoa and ginkgo.

These helped little, although I did enjoy the cocoa. So I decided to

try hyperbaric.

> A couple comments on your message (which was interesting by the

way.) All

> the people I had heard from found they didn't get benefit, or they

did but

> it wore off after a few times.

More than " A few times " is required. You need to get the infections

down enough so that coagulation reduces and O2 transport gets to

normal range. Consistent once or even twice per day is needed for a

few weeks. Also I believe most HBOT is done at insufficient pressure

for bacterial and mycoplasma infections. For example, 1.5

atmospheres is a standard treatment but it requires 2.36 atmospheres

to defeat Lyme's disease.

I imagine similarly that Heparin is required for quite some time

until your body has defeated the anerobic bacteria that hide behind

fibrinogen deposits.

> > On the second question the standard treatment for

hypercoagulation is

> > heparin, usually by injection. Like most medications there are

> > potential side effects: osteoperosis, hair loss, and bleeding.

>

> This is somewhat exaggerated, as the doses taken by us are so low.

I have

> never heard of any side effects from low dose heparin but that

doesn't mean

> there aren't some. They just aren't common.

I grant you that heparin is not a risky medicine and is a good choice

for hypercoagulation. At the same time given the sensitivies PWC

have, it is nice to have a drug free alternative. Heparin may be an

exception but I have read many cases where pharmaceuticals either

have unintended consequence or stop working well after a few months.

Moreover, Herparin only treats hypercoagulation. Other failures in

O2 transport including anemia, low blood volume, and deformed RBCs

can be treated by Hyberbarics but not Heparin.

> > While forcing oxygen to the cells for

> > aerobic ATP production, it also tends to kill off anerobic

baterica,

> > mycoplasmasm, even Lyme Disease, improve white cell production,

and

> > clear the mind. It does not create a serious herx reaction.

>

> I don't understand the mechanism by which you can kill bacteria and

not get

> a herx. Unless you are killing it more slowly, and thus a reduced

herx.

> But if the herx is caused by the body's inability to pull the

toxins out

> fast enough, how does this not happen with hyperbaric?

This is a great question. My hypothesis is that the increase in body

function that results immediately from getting a huge supply of O2 to

starved cells offsets the toxins released from a massive killoff of

bacteria. To be clear in the first few days of treatment I did not

get ill, but I did sleep a lot. Also, to be fair, I have read

reports of Herx reactions in Lyme disease patients so it may depend

on the patient and degree of infection.

> Finally, what I believe you are saying is that instead of treating

the thick

> blood, you are instead getting oxygen to your cells in another

way. I don't

> believe you're claiming hyperbaric thins the blood. The problem

with this

> is that you still have thick blood, and people might have a bunch

of other

> symptoms related to that which aren't being touched. For example,

heart

> disease and strokes are associated with thick blood. When I took

heparin my

> lifelong extreme menstrual pain stopped, my interest in sex

returned, my

> orthostatic intolerance improved, my hands and feet weren't cold

all the

> time. I'm sure there are things I'm not remembering. The point is

there

> are other reasons that thick blood is bad besides not getting

enough oxygen.

> So it seems like the best thing would be to do both heparin and

hyperbaric.

>

Dave Berg's theory is that a coagulation deficit + an immune insult =

hypercoagulated blood. Within a hypercoagulated blood system

anerobic bacteria are protected from lethal oxygen and white blood

cells by fibrinogen (blood clotting) deposits on capillary walls.

Heparin works by dissolving the clots, so your body then can attact

the anerobic bacteria. When the bacteria are defeated, normal

coagulation returns.

Hyperbaric works by forcing O2 under pressure into body tissues to

kill the anerobic bacteria directly, thus removing the immune insult

and allowing coagulation to normalize. So hyperbaric does thin the

blood although via a less direct mechanism.

Note too that pressurized O2 is not only forced into RBCs but also

into blood plasma, spinal fluid, and lymph fluid to completely wash

the body in O2. Thus hyperbarics has the ability to kill pathogens

inaccessible to the circulatory system.

An open question is whether hyperbarics or heparin produces a quicker

result. In my case, I got the benefits after about 10 sessions, or 2

weeks with reasonable benefit in 5 sessions. In my 20 years of CFS

this kind of quick positive change was unprecedented. How long did

it take to get your good results on Heparin?

Regards,

[Guest guest]

Does anyone know of any hyperbaric therapy clinics that treat autism in or near

Barefoot Beach Florida?