Re: Digest Number 320

[Guest guest]

> Message: 12

> Date: Thu, 27 Apr 2000 12:33:06 EDT

> From: betboys@...

> Subject: Re: Testing alternative cancer treatments -

>

> ,

> Have you ever investigated essiac? This is a herbal formula

> used by a

> nurse for the treatment of cancer.

Yes, Belinda, I am familiar with Essiac, and the story behind it. I have

had a number of discussions with one of the people selling it

at http://www.natheal.demon.co.uk/can-t.htmland

, trying to persuade him to do some survey work on it along the lines of

examples given in my post about testing alternative cancer treatments.

The person running the above web site (Max) claimed to be associated with

oncologists that were doing some work on this in Europe. I have seen no

evidence of this yet and am dubious.

I think it is quite likely that further herbal agents will be found that

affect cancer. About half a dozen of currently used chemotherapeutic

agents are derived from plants. The problem is that it is likely that any

truly effective herbal product will share the same strengths and weaknesses

as those already used. They are part of the plant's defence system against

predators, and are not necessarily designed to be kind to humans.

More below.

She was having great success

> and had many

> doctors who were supportive of her " treatment " for a time (until the AMA

> stepped in and suddenly those doctors tongues were cut, either

> that or their

> license). These doctors even referred their patients to her,

> after they had

> chemo, rad and cut all they could without success. (this

> nurse) was

> sent these patients with a written doctors request for treatment

> (one of the

> conditions for her to treat) and under the condition that she

> could not get

> paid for her services! was to have a reported 80% cure rate, with

> these terminal, doctor-written off patients. Needless to say ,

> word spread,

> and soon people were showing up at her door without the " doctors

> permission. "

> was harassed constantly throughout this time, was threatened

> imprisonment, suffered a nervous breakdown after awhile, was followed,

> stalked, brought to court under the charges of " practicing

> medicine without a

> license. " Hundreds of her patients showed up to testify on her

> behalf, still

> living, breathing, laughing, walking, in general " good Health. "

> They (the

> court) only let a few speak, and then the " experts " announced that these

> " fine " folks were probably misdiagnosed by these physcians OR it

> was actually

> the chemo, rad, etc. that " cured " them since they had these

> treatments also.

> It seems to me that if these doctors were so incompotent to misdiagnois

> cancer and put a patient through this protocal of theirs, they

> should, in my

> opionion have been the ones to lose a license. Or if they were actually

> " cured " using their protocal, and sent for un-necessary

> treatment, one could

> also wonder of their " ethics. "

You've got this garbled up. I am sure they are not asserting misdiagnosis

and medical cure in the same person.

Neither of us has any chance of knowing the truth of such material. Such

evidence would not be normally considered in a simple licensing trial

anyway.

The problems with historical data such as this is why I am advocating

getting current information on Essiac, and other treatments.

> also worked with President Kennedy's personal doctor, who was

> highly esteemed in his profession. He signed an avadavit that he

> cured his

> own cancer (I think it was colon cancer) using essiac alone.

> As far as documentations on alternative practices, I would

> say that this

> is probably the most documented, yet is totally shunned and

> ignored in our

> present based system of medicine. I noticed in a post that you

> were talking

> about them doing trials on Dr. Brunizkyi's (sp?) pancreatic

> therapy. There

> may be something to this, essiac also had a positive effect on

> the pancreas

> thereby increasing its funtioning, but the prelimary results as you have

> stated were rather poor. Now, tell me , why would this

> alternative therapy

> be chosen over that of Essiac?

I may be wrong in my suspicions,

> and forgive

> for being suspicous, but it seems that the AMA, NIH etc want to

> appear to be

> co-operative in this movement, but do not want to " pick " a

> therapy to support

> or fund anything that may prove to be of higher benefit that

> something that

> is in conventional medicine. That way they obtain and keep the

> " upper hand "

> as it were, and if you don't think that the element of power

> plays in this

> agency, you need to look again.

I am sure others feel the same way about other favoured alternatives.

I believe it has come about because some SYSTEMATIC, rather than anecdotal,

information was provided for this treatment, and because one patient in the

eleven is still alive (or was at the time of publication--it was ,

not Burzhynski (sp)). If any message is being sent to AM it is " forget

testimonials, that may tell of a one-in-a-thousand event, give us some

response rates " .

If it was all " the conspiracy " , as you seem to imply, why the several trials

of shark cartilage, and a lot of trials actually showing quite promising

results for PC-SPecs for prostate cancer? Also hydrazine sulphate, Vitamin

C trials, the Di Bella treatment in Italy -- a lot of alternatives have been

trialed in conventional settings, but still " the AMA/FDA/ pharmaceutical

conspiracy " theory prevails, even though, as I hope to show, it is

destructive to your own hopes regarding the proving of alternatives.

I say again, there is NO worldwide conspiracy against researching

alternatives. There may be some bias, I agree, but the following is how it

REALLY is, as seen by someone who understands both camps fairly well---.

There is nothing at all wrong with someone reading a book or web site about

a cancer treatment and saying " that sounds reasonable to me-- I will give

it a try " . It is not a scientific decision, it is a decision based upon

hope and some level of trust, especially where cancer is involved.

But those who hold the purse strings for cancer research are hard-nosed

scientists. They are also very familiar with what standards of evidence

have proved reliable within past experience. When they look at the same

material, what do they see? To them it is, in all honesty, only hearsay,

second hand stories that would not even be accepted in any court of law,

unverifiable anecdote, and sometimes a little unpublished and/or unsupported

experimental data. In some cases it is obvious to them that the treatment

is unlikely to work because of well-trodden ground within conventional

cancer research that promoters of the treatments don't know about.

No one else would dream of bringing a research project to them for funding

with so little background preparation. It completely lacks the " look and

feel " of proper research. Where can we inspect all the case histories with

the actual biopsy reports and the results of staging of those who are said

to have been cured by this product? Who holds the pathology slides so we

can review the diagnoses? Can we have a list of their names and phone

numbers please? Why not? Where are the sheaves of working notes that this

laboratory research should have generated? Why have the results not been

published somewhere so others can review the data and confirm it? And why

are those promoting and selling the treatment not here supporting it if they

truly believe in it, rather than leaving others to be pressuring for such

research?

They also know how testimonials can mislead. The diagnosis or staging of

cancer may be shaky. Very commonly the same outcome would be expected from

conventional treatment that the person has had, but it is regarded as

impressive by the AM believers who think conventional treatments never work

(this distorts SO many AM perceptions!). Any subject to such uncertainties

HAVE to be excluded from consideration if one is to get at the truth. There

will be others with convincing data if the treatment works.

I am sorry, but this is how it is. Understanding this is the key to

breaking the paralysing influence of the conspiracy, and the substitution of

useful action. Unless you can persuade those who are in a position to do

so to produce some current, well-documented and verifiable simple research

along the lines mentioned in a previous post there is little hope that you

will ever have more concrete data about Essiac or any other alternative than

you have now. It's the only way. Those who won't do it should have their

products shunned.

You should also be prepared to ask about the conspiracy theories: " Cui

Bono? " Who TRULY benefits from them? To whose operations do they lend an

air of importance and authenticity, and an excuse for never bothering to

firm up any knowledge about the products/services they sell? At least some

older cancer alternatives emanated from reasonably credible medical

pioneers who were probably trying hard to find an answer to cancer, and

attempted to validate their treatments in normal ways. Anything goes these

days. As several probable frauds have demonstrated in recent years, why

bother? Hell, no! Just go straight to Mexico and set up shop.

> I can refer you to a very good book on the history of essiac

> called " The

> Canadian Cancer Cure - The Essiac Report. " It contains alot of the

> documentation, but it was done mainly as a promotion of the FlorEssence

> brand. That does not however, negate its contribution.

> FlorEssence is not

> what was using when she was getting her 80% cure rate, this is the

> formula that was " concocted " or " improved " when she was working with

> Kennedy's doctor and therefore does not have the amount of case histories

> attached to it.

> Just wanted your thoughts on this alternative therapy and to

> see what you

> think.

>

> I might also add, that we may well become the proverbial " cat

> chasing its

> tail " , in the area of cancer if we don't start to address its

> causes, thereby

> eliminating future incidences.

One area that is avoidable and highly

> unregarded as an area of cancer causes, is that of personal care

> products.

> Many other countries ban chemicals known to be carcinogens in

> their everday

> products and food supply, while the USA does nothing. Another political

> arena to deal with, to be sure. We should pressure and force the FDA and

> chemical companies to be more responsible, and to not allow these

> ingredients

> in our products if we ever truly want to drastically reduce the cancer

> numbers. For those who already have cancer, an effective,

> non-toxic solution

> is needed. For those who do no have cancer, prevention is the BEST

> medicine.....

>

I agree with this. Failing that, get it early and get it cut out. You can

talk about other treatments then.

Moran

> Belinda T

>

>

[Guest guest]

In a message dated 04/28/2000 6:34:23 PM Central Daylight Time,

pjmoran@... writes:

<< I think it is quite likely that further herbal agents will be found that

affect cancer. About half a dozen of currently used chemotherapeutic

agents are derived from plants. The problem is that it is likely that any

truly effective herbal product will share the same strengths and weaknesses

as those already used. They are part of the plant's defence system against

predators, and are not necessarily designed to be kind to humans. >>

From your above statement, it is clear to me that you haven't the slightest

understanding of herbology.

>>You've got this garbled up. I am sure they are not asserting misdiagnosis

and medical cure in the same person.

Neither of us has any chance of knowing the truth of such material.<<

No, its not garbled up. They were saying that there was no " cure " , because

" obviously " this person had been misdiagnosed, in their opinion. You can read

all the books on Essiac and you should be able to get a copy of the court

proceddings to read for yourself. I am sure that Canada probably had court

reporters at that time and the case should be accessible from their law

library. I can also put you in touch with a lady who has been researching

Essiac for the past 8 years, who can also fill you in on a lot of inquires.

There are still some alive that knew and of Essiac. The truth is there

Dr. Moran, you just are unwilling to accept it.

>>The problems with historical data such as this is why I am advocating

getting current information on Essiac, and other treatments.<<

This is a wonderful idea! But who will support and fund it? Will you and

those at your hospital? You already seem to be of the opinion that it will

not work? I think that maybe you are more concerned with promoting your own

agenda, and that is conventional treatment for cancer than you are interested

in someone discovering a cure that may cut your paycheck in half. Maybe we

should open a Not-for-profit alternative cancer organization, take at least

half of the money that the Not-for-profit cancer system the conventional side

has set up and conduct our own treatments. I am sure that at least half of

all donations from people would be interested in re-directing their funds for

a possible inexpensive, safe, non-toxic cure, esp. since the cancer society's

track record is so pitiful. Then, in all fairness, half of that federal

funding from the government, should rightly go to this new not-for-profit

organization. A director should also be put in place to keep a " cap " on

expenditures on both sides, so that as Art says, no more than 22% of its

funds should go into operating expenses.

Also, I have another question for you . Have you ever recommended that

one of your patients try chealtion therapy, before you cut one of their body

members off. Chealtion can well save many an amputation. Is it not

supported because it is in the patients best interest or yours?

>> am sure others feel the same way about other favoured alternatives.>>

, I don't have a " favorite " alternative treatment. I have no emotional

attachment to any treatment, I just go with what works with the highest

results. Isn't that what you should be doing also?

>>But those who hold the purse strings for cancer research are hard-nosed

scientists. They are also very familiar with what standards of evidence

have proved reliable within past experience. When they look at the same

material, what do they see? >>

This may be, but where is the attribute of honesty? Dr. Sugiura was an

Honest scientist and did the studies on B17, he stated that after 5 years of

testing that amygdalin B17 in his opinion was the most effective anti-cancer

agent he had tested. Sugiura's allegince lay more with the truth of his

findings than with Sloan Ketterings political and financial consderations.

Can this be said of all scientists? I think not. You seem to be of the

opinion that only honest, self-sacrificing indivduals are scientist and

should be fully trusted. I beg to differ, our established medical system is

far from such " purity. " This " test " of B17 was done due to public pressure,

and I'm sure the results even surprised Sloan Kettering. This is also the

same reason many other alternatives are so " tested. " Documents have been

falsified and research has been cover-up many times. If you think that

" corruption " does not exist in this one area of " humanity " , maybe you need to

look deeper.

Belinda

[Guest guest]

chemo agent derived from plant: vincristine

source:periwinkle

historical use of periwinkle:slave cooks would use it to poison the master's

food *best hidden in cakes for some reason*, KIDS were usually the first

ones to die

historical use vincristine: CHILDHOOD leukemia/lymphoma

hmm...I'm sold

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[Guest guest]

chemo agent derived from plant: vincristine

source:periwinkle

historical use of periwinkle:slave cooks would use it to poison the master's

food, KIDS were usually the fisrt ones to die

historical use vincristine: CHILDHOOD leukemia/lymphoma

hmm...I'm sold

_______________________________________________________

Get 100% FREE Internet Access powered by Excite

Visit http://freelane.excite.com/freeisp

[Guest guest]

periwinkle old cancer plant from ndians

[Guest guest]

Hi All, Here's my profile:

Debbi Barer

DebraLGB@...

Kids: Logan, 6/29/94

Eli (DS) and Milo, 9/6/96

Weston, CT

I would be interested in a get-together. I know lots of DS families and lots

of twin families. I'm so glad to find a place where those two worlds

intersect! And as my kids are getting older and more " aware " I think it

would be great for them.

, I'm glad my note touched you. I sometimes feel I'm the only one

feeling this way, I'm glad to hear I'm not the only one. So glad.

love debbi

[Guest guest]

does anyone know of anything that can help get rid of the pain? the

gallbladder attacks cause real air pressure, right? because i once made

myself throw up just to get the air out. but that only worked the one time.

this is the worst pain on earth! i'd GLADLY have surgery but medical care

isn't for the poor. so it's not an option.

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[Guest guest]

Hi,

Most of us in this group have chosen to avoid surgery

and are willing to change our eating habits

permanently in order to do so.

Some of us have had our gallbladders out and still

regret the decision and/or are still in pain.

I was diagnosed with a fatty liver too. I was most

concerned about getting it back in order.

Please take the time to read the past emails. A lot

of good information, resouce websites and suggestions

exist there.

I know this probably doesn't help your situation, but

I live in a Country that provides paid health care. I

could have the surgery if I pushed my Doctor for it.

I don't want it or the risks of surgery or the other

risks after surgery.

I want to be healthy and pain free and feel better.

I have found that changing my diet, removing the junk

food and eating properly has made a huge difference.

This means no french fries, no chocolate, no butter or

margarine, no pizza, no pop (diet or otherwise). I

eat lots of fruit and vegetables, beans, brown rice,

pasta and vegetable sauces, etc. I have cut out meat

except for a couple of times a week. I also make

salad dressings using flax seed oil and olive oil plus

take primrose oil and Vitamin E. I drink lots of

filtered water too!

I also started walking and doing simple " at home "

weight lifting. I feel better than I have in years

and haven't had pain in months. By avoiding the " bad "

foods I've also lost weight which was part of the

problem in the begginning.

I wish you luck. I believe that healthier eating and

flushing is a much better to go. I hope you can find

some helpful ideas from our group.

Suzanne

--- not important <luvsvikings@...> wrote:

> does anyone know of anything that can help get rid

> of the pain? the

> gallbladder attacks cause real air pressure, right?

> because i once made

> myself throw up just to get the air out. but that

> only worked the one time.

> this is the worst pain on earth! i'd GLADLY have

> surgery but medical care

> isn't for the poor. so it's not an option.

>

________________________________________________________________________

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> http://www.hotmail.com

>

>

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[Guest guest]

What really helped me, were homeopathic tablets " lycopodium clavatum " . I had infections (or must I say inflammations) in the gallbladder-area and had pain for almost all day. I couldn't walk for longer than 10 minutes, was very tired. Now I can do everything again, the pain has gone, (alltough I sometimes have a little discomfort) but I'm still taking other stuff " berberis vulgaris " , trying to crush the stones.

I hope you can find something that helpes you.

[Guest guest]

In a message dated 6/1/00 7:08:13 AM Eastern Daylight Time,

luvsvikings@... writes:

<< Does anyone know of anything that can help get rid of the pain? >>

I do not experience severe pain with my gallstones, but have a lot of success

alleviating the discomfort I have with phazyme or gas-x. I have also used

alka-seltzer with some success. Hope this helps. Judy

[Guest guest]

Hi, ...

I don't think you have mentioned your age (not asking) but I will be 62 in

July. Having led a very active physical life, I am having a lot of difficulty

saying " no " to physical challenges. As I shared with you before, I have had a

lot of neck problems in addition to all the other problems in the past, which

may or may not have been CMT related. I look at it like this ... We are all

standing in a line. At the end of the line is a door through which we all

must walk. The only thing we don't know is exactly what place in line we all

hold. Now then, we all get to the door in a different manner, but through the

door we will go. What I am attempting to do, is to maintain my place in line

for as long as possible. I have found that regular exercise, good diet and a

positive mental attitude are essential. I have found that I have had to cut

back on my walking program but I can still work out at the gym with weights.

My energy level is less than it used to be, so I am not as efficient at my

job anymore ... (I sell real estate). So, I have reduced my expenses and

living standard. I don't buy a new car every two years anymore, opting for

used cars four to five years old. Got rid of the huge house and bought a nice

double wide mobile home in a nice park then took in a room mate to help with

expenses ... etc. In the middle of September, I will be getting my first

Social Security check, so that will help in the slowing down process as well.

One of the hardest things for me to come to grips with is the fact that I

must slow down and stop beating my body up so much. I just love the physical

activity for both physical and mental well being. I have done everything from

motorcycle racing in the California desert, competitive bicycle racing. And

now ... its all over except my weight workouts at the gym. Looking back on

things ... If I had it to do all over again, the only thing I would have

changed is, I would have taken better care of myself early on with diet and

supplements. You haven't said what part of the country you live in ... (not

asking). I live in the Thousand Oaks area of Ventura County in California. I

am south of Santa Barbara and north of the San Valley, all of which

is north of Los Angeles the Damned. ) Have to go ... have to be at the

office by 8:30 ... Hope to talk with you later ... Hang in there.

[Guest guest]

Hi

I also have the foot pain.....I limp a lot but still get around on

foot....guess its my attitude saying to heck with it I still gotta do!!!

It hurts pretty bad sometimes but I grin and bear it.....I call it the

CMT waddle..LOL!! I am very unbalanced and look sometimes like I have

been on a drinking binge by the " waddle " ......can't go to fast

either......so I just do the " Waddle On " ...LOL!!! I know there are a

lot of folks who are much worse than I and need other means to get

around....I also have a cane and have used it before......but me being

me I grab hold of the nearest thing if I feel the need stair railing

grocery cart whatever I can to help me balance.

CSCluv**

http://community.webtv.net/cat926/CATHYSCOOLCATCORNER

[Guest guest]

where can I find the powdered honey? also looking for a good source for

shea butter and other supplies. By the by. I was in the Body shop and ran

across Mango butter, Shea butter and Olive butter. Does anyone have a

recipe for making any of these yourself??

Thx

V.

-----O

[Guest guest]

also recipe for black soap??

V.

[Guest guest]

Donna and ,

Glad to see you both back and posting. I'll be following you, tummy tuck the

end of this month, arms and boobs first of Oct. I had a breast reduction, 6

plus pounds removed 20 years ago. It was surprisingly pain free. The tummy

tuck is being done in conjunction with the hernia repair - again. That hurt

last time, not unbearable, but definitely knew that I had had surgery.

continued good healing, you skinnys,

in Chapel Hill

[Guest guest]

Just wanted to let you know that I am out there and my son and yours sound

similat.Mine is 6 and has been getting speech and OT since he was a little

over 2 years. They first came to my home and then when he turned 3 he went

right on to pre school where he continued receiving services.He is now in

first grade and still receives speech 5 times a week in a small group setting

and OT one on one twice a week.He still has trouble saying some words but

everyone understands him and the frustration level has decreased.I am really

lucky because the school district that I am in is excellent in providing

services for special needs children and so every service that I have received

has been free. This is a wonderful group.I only wish their were people closer

then an hour away. Anyway,welcome and glad you are apart of this

group.Gretchen mother to who is 6

[Guest guest]

>I am

> really

> lucky because the school district that I am in is excellent in providing

> services for special needs children and so every service that I have

> received

> has been free. This is a wonderful group.I only wish their were people

> closer

> then an hour away. Anyway,welcome and glad you are apart of this

> group.Gretchen mother to who is 6

>

>

Did your son have to enter the school system through it's early childhood

program or through a regular preschool? Just wondering in Jan my son

will be into the school system and I think I'm going to have to fight to keep

him out of its early childhood. I just don't think it's the place for him to

be. thanks, Lori

[Guest guest]

To Gretchen mother of with apraxia:

Hi I am Kerry and my son is 7 thanks for responding

to my letter it seems alot of the people do have young children still so i

was looking for a child about Steve's age. Steve's frustration level has

gone down also. When he's excited he talks in a really high pitched level

making it even harder to understand. He's is starting a new program in our

school district this year. He's in the communiction handicapped program.

He's going into second grade and academically he's not on his grade level

either, they say the speech issues have alot to do with that and that

hopefully in time he'll catch up. I'm taking one day at a time but never

stop worrying. How's your son doing?

Kerry

[Guest guest]

Hi :

Amie first saw Dr. Arnon Lambroza, 212-517-7570 for the Motility study.

He referred her to the Surgeon that performed the Myotomy: Dr. Dennis

Fowler: 212-746-5599.

I wish you the best of luck.

Ron

Re Medication and other questions

> >

> >

> >

> > Hi !

> >

> > Do any of the UK members take any medication for their achalasia ? I

am

> > only limiting this question to the UK members 'cus I don't recognise

any

> of

> > the drugs you friends across the water talk about in my BNF ( National

> > Formulary )

> >

> > Are the drugs the others of you mention , (far away across the water !!)

> > for pain or reflux or what ?

> >

> > Somebody mentioned the other day (and please forgive me for having

> > accidnetly deleted all the old messages before noting a few names )

about

> > something for stimulating saliva production ...as I have Sjogrens

syndrome

> I

> > was interested .... please can you let meknow again ? thanks

> >

> > On the same note somebody else asked ' Do you get dry eyes and mouth ? '

> > ... the answer is 'yes I do ' but thats because I have Sjogrens Syndrome

..

> > Perhaps you might mention it to your Medical Practitioner ... especially

> if

> > it is not improving ... I'm not saying you have Sjogrens , however don't

> > leave unidentified symptoms as there might be a resaon and some help .

for

> > example I have saliva replacement spray and eye drops to help these tow

> > symptoms of that condition . Let me know how things are .

> >

> > thanks everyone .

> >

> > Chris

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

http://www.kalindra.com/

http://www.delphiforums.com/ has forums on sacroiliac

problems plus scoliosis and revision surgery (salvaged

sisters)

I am almost 48 and will be having revision surgery in

Jan with my fusion extended to the sacrum. Were you

having pain before surgery or did all this start after

surgery. While I am not looking forward to surgery

the fusion to the sacrum has been one of the things I

am particularly worried about, however I don't think

there is anyway around it. I hope the above sites

help you. Any words of wisdom for me before surgery?

Becky

[Guest guest]

Hi Becky,

I was 57 when I had the surgery. Although I already had considerable pain,

I was told that the surgery was not a guarantee for pain relief. More, the

surgery was to protect the ability to breathe. I have had pain after

surgery, but less as time has gone on. I have had a lot of help in learning

to handle and/or diminish that pain and have never regretted the surgery. I

have a feeling that is what you really are asking. I feel lucky to have had

the surgery when I did, when it has been perfected, when recovery is faster,

and when the surgeons have had much experience with the surgery! Early on,

people accepting surgery were really guinea pigs, don't you think? Good

luck, pain free 2002, and hoping to hear from you,

Carole

----Original Message Follows----

From: Becky Wetherell <rawetherell@...>

Reply-Scoliosis Treatment

Scoliosis Treatment

Subject: Re: Digest Number 320

Date: Thu, 29 Nov 2001 23:47:40 -0800 (PST)

http://www.kalindra.com/

http://www.delphiforums.com/ has forums on sacroiliac

problems plus scoliosis and revision surgery (salvaged

sisters)

I am almost 48 and will be having revision surgery in

Jan with my fusion extended to the sacrum. Were you

having pain before surgery or did all this start after

surgery. While I am not looking forward to surgery

the fusion to the sacrum has been one of the things I

am particularly worried about, however I don't think

there is anyway around it. I hope the above sites

help you. Any words of wisdom for me before surgery?

Becky

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[Guest guest]

In a message dated 3/15/2003 3:43:44 AM Eastern Standard Time,

writes:

> Global Candlelight Vigil for Peace: Sunday, March 16 7:00 PM

>

>

Bob and I are very proud to be taking part in our local vigil in Decatur, Ga.

If you can't take part in your area burn a candle in support on Sun. 3/16/03

from 7:00 pm to 9:00pm. Peace is the only answer. Love and peace to us all,

Vickie

[Guest guest]

Tempe-

I don't know how LPS endotoxin markers can be

measured, but for sure there is no way short of

microbiology biopsy of knowing whether the organisms

are dead and toxic or alive and toxic! I think the

high LDL is at least suggestive. Our " expert " on Cpn

also notes that the " poor man's porphyria " marker " in

general, a high-normal hemoglobin and high-normal

hematocrit are both good indicators of porphyrins. " So

I'd look at that too.

Anyone know a " poor man's marker " for endotoxin

levels?

Jim

Message: 3

Date: Sat, 24 Sep 2005 17:48:25 -0000

From: " tempelx0 " <tempelx0@...>

Subject: Re: Digest Number 318

Jim:

You made several good suggestions. As I replied to

Tony, I will go

in to see what blood tests show at this point. I've

noted your

comment about cholesterol spikes -- my LDL WAS

unusually high in

2003, but hasn't been tested since then.

Your information about " endotoxin (LPS- I think the

same as in

Lyme's) from the dead bacterial " envelopes " can remain

in tissue

causing inflammation for up to 4 weeks " is really

crucial. It is

definitely inflammation in the CNS that I am feeling.

Your thought

about the cause seems more likely than reduction of

brain swelling

that I just posed in my reply to Jill1313.

If that is the case, are there markers in the blood

that would show

up differently when continuing inflammation is caused

by dead

bacterial envelopes than when caused by live bacteria?

Or should a

person wait 4 weeks after going off of abx to have

blood tested?

I didn't feel these parathesias on days 1-5 off of

rocephin, though;

not until about day 6 off. Would that be relevant?

My current LLMD agrees with you, by the way, that

flagyl kills

borrelia in cystic form.

Thank you. Tempe