Re: Digest Number 2196

[Guest guest]

, I am so sorry you are having such a rough time. I remember you

from when I first joined back in 1999. You and your dog, I remember that

pic. I just resubscribed and had no idea things had deteriorated to the

point where you are listed. I will think the good thoughts that you may be

moved up on the list. Will you start on diuretics in the future?

KayK in Austin

[Guest guest]

In a message dated 4/7/02 12:35:45 PM Pacific Daylight Time, writes:

thanks for writing back. The hospital is university pittsburgh medical center. This is where I will go for my liver transplant if it ever comes through. I am afraid that the same disease will affect any new liver I get.

I live in west virginia and when people found out what I had they made me quit helping at my sons school and I was asked not to help out at the concession stand where my son plays football and baseball. People wher afraid thay might catch it.My church has been very supportive but the people in this rural community are very ignorant. I even have trouble getting dentists to work on me,they are afraid I may get infection since my immune system is now so low and thay are afraid for themselves.

I guess since my family has a hard time understanding everything maybe I expect to much from other people.

again thanks for saying hi,

, can you get some sort of letter from your doctor saying in big letters that AIH is not contagious? I'm terribly sorry you have the additional burden of ostracism -- especially since it's totally misdirected! Someone in the group said that she told her dentist that she might catch something from him, but he couldn't catch AIH from her. You say your dentists are "afraid for themselves." Do you mean that they are afraid of catching something from you? Legally, I don't think they can deny you treatment.

Yes, AIH can recur in a new liver, but that it isn't a reason for not getting a transplant.

Best wishes.

Harper (AIH dx 5/00)

[Guest guest]

Jeanne,

Being on traditional meds doesn't mean you wouldn't have cartilage

loss. I've been on

everything that comes down the block for over 20 years and still am

loosing cartilage.

I've had both knees replaced already on traditional meds. I started on

Enbrel as soon as it

was approved, yet the RA has marched on to other joints. It helps me

but doesn't stop

the progression as I had thought it would. I'm now turning to minocin

in hopes that it

will stop the progression. My doctor's response to it still

progressing is that maybe it would

have been worse without the meds.

a

On Monday, July 14, 2003, at 05:29 PM, rheumatic wrote:

> Message: 11

> Date: Mon, 14 Jul 2003 17:08:07 EDT

> From: now4now5@...

> Subject: Re: AP 2 years, now surgery

>

> Hello Everyone,

>

> I've been reading most posts but haven't posted myself in some time.

>

> I've been on AP since Sept 2001. Last October during a visit to my

> Rheumy she

> informed me I need knee replacement because all the cartilage in my

> knees is

> gone. And although I did go to the ortho surgeon (who also

> recommended the

> surgery) I did not have it done because I have been feeling very well.

>

> However, in April I was feeling poorly so I had the surgeon give me

> steroid

> injections. Those have worn off so now I am looking at synvisc

> injections

> cause I am feeling poorly once again.

>

> I had been feeling so well on AP. I never considered I may be loosing

> cartilage that some of the other drugs may have helped to prevent. I

> am only 48

> years old. My husband wants me to move on to other drugs because he

> is convinced

> I would still have cartilage if I had been taking remicade or (can't

> think of

> the name of) the other drug. What do you guys think? Should I give

> up on

> AP? I'm pretty sure I can't put off knee replacement for too much

> longer.

> Seems if I have metal knees I don't need that darn cartilage anyway ;(

>

> Confused and disappointed,

> Jeanne

[Guest guest]

Hi All,

I saw a rheumy recently who said my lack of joint damage over the last 4 years

was rather remarkable. While he had heard of the AP and didn't prescribe it, he

conceded it was possible that was the reason I had so little damage. Fortunately

I started the AP just a few months after coming down with RA. Hope this helps,

Re: AP 2 years, now surgery

>

> Hello Everyone,

>

> I've been reading most posts but haven't posted myself in some time.

>

> I've been on AP since Sept 2001. Last October during a visit to my

> Rheumy she

> informed me I need knee replacement because all the cartilage in my

> knees is

> gone. And although I did go to the ortho surgeon (who also

> recommended the

> surgery) I did not have it done because I have been feeling very well.

>

> However, in April I was feeling poorly so I had the surgeon give me

> steroid

> injections. Those have worn off so now I am looking at synvisc

> injections

> cause I am feeling poorly once again.

>

> I had been feeling so well on AP. I never considered I may be loosing

> cartilage that some of the other drugs may have helped to prevent. I

> am only 48

> years old. My husband wants me to move on to other drugs because he

> is convinced

> I would still have cartilage if I had been taking remicade or (can't

> think of

> the name of) the other drug. What do you guys think? Should I give

> up on

> AP? I'm pretty sure I can't put off knee replacement for too much

> longer.

> Seems if I have metal knees I don't need that darn cartilage anyway ;(

>

> Confused and disappointed,

> Jeanne

[Guest guest]

In a message dated 1/3/2005 5:03:14 AM Eastern Standard Time,

writes:

He was rushed to the emergency room

that day with an asthma attack. He went to the Mayo Clinic and they

put him on steriods and maybe singulair, I can't remember. This is

the Mayo clinic that knows all about fungus and sinuses, yet they

gave no antifungal to him.

He obviously did not have an infection. Asthma is not a pathogenic illness.

Antifungals are like antibiotics, they only work against the living pathogens

that have invaded and are living in the body.

Armour

Armour Applied Science, LLC

Cleveland, OH

440-546-7068

[Guest guest]

In a message dated 1/3/2005 5:03:14 AM Eastern Standard Time,

writes:

Truckee High School, the start of the

CFS epidemic.

Pardon, what is " CFS " ?

thanx in advance.

Armour

Armour Applied Science, LLC

Cleveland, OH

440-546-7068

[Guest guest]

In a message dated 1/3/2005 5:03:14 AM Eastern Standard Time,

writes:

There is valley fever,

cork workers lung, air conditioner lung, Ohio Valley lung, hystoplasmosis,

etc.

These are all the same diseases, type III hypersensitivity brought on by

excessive exposure to air borne fungi. Many of these are listed on the CDC

site

as known mycotoxicoses.

Sharon, aren't you talking about HP, Hypersensitivity Pneumonitis? This is

quite different from a general, non-specific or 'hypersensitive' response to

allergans.

If so, the difference in exposures (quantity of mold over time and in a

single dose) is what keeps the CDC and environmental health professionals from

crossing the line.

I understand the typical difference of concentration to be several factors

or more, which is a huge difference. (e.g., 1 billion spores per m3 in the

agriculture setting compared to 10,000 per m3 in the office is 100,000 times

greater an exposure!)

So too do we need to make sure we are talking about the same illness. HP is

quite differnet from asthma. As is pathogenic illness (e.g., aspergillosis)

quite different from asthma. We must make sure we differentiate and

discriminate when discussing illness relavent to different occupations.

This is key for the enviro health pros and occu doc's! We need then (us) to

understand that the exposure is something much different, the illness is

something much different, and the 'fix' is something different too .

Armour

Armour Applied Science, LLC

Cleveland, OH

440-546-7068

[Guest guest]

In a message dated 1/3/2005 5:03:14 AM Eastern Standard Time,

writes:

The hay from the

horse feed had got wet and a mold developed which caused all symptoms. This

is an aflatoxin and extremely dangerous

Jeff, I am absolutely intrigued by the line of discussion you just opened.

Perhaps you can elaborate on the 'borna' illness and the known symptoms,

maybe provide other documentation or other cases histories, maybe some details

of the environmental information, like species. And, for this aflatoxin, why

is it extremely dangerous? Is it the carcinogenic properties or some other

toxic effect?

Thank you,

Armour

Armour Applied Science, LLC

Cleveland, OH

440-546-7068

[Guest guest]

CFS = Chronic Fatigue Syndrome.

Yes, I know that many people suffered from this illness before

Incline Village and " Yuppie Flu " , but when the symptoms were

categorized as a " syndrome " that came to be called " CFS " , it was the

NIH response to Dr Cheney and Dr s identification of the

concurrency involved in the complaints that led to the creation of

the term.

-

[Guest guest]

Hi ,

Thank you for your reply. If I understand you correctly, you are

agreeing that the single dose response study (RAO), which was the basis of the

ACOEM " evidence based statement " is irrelevant in understanding the effects of

dose response on habitants of contaminated environments?

I know that asthma is different from HP. As I understand it, HP is a

very serious type III mediated immune response that is caused by infection of

fungal spores. The Merck Manual also calls it " pulmonary mycotoxicosis " .

Asthma is also quite serious, but as I understand it is not based on infection,

merely immediate response to exposure.

The point is: We are sick from molds in our indoor environments. And

I don't care if it is asthma, hypersensitivity types I, II,III, IV, or even

type MCIII! It is well established that excessive exposure to fungi can

elicit illness. Why is it that this seems to be understood and studied to

death,

IF the illnesses occur from exposure everywhere else on this entire planet

except our homes, offices and schools?

We are sick from mold exposure, no matter where the exposure occurred.

And we need to be properly treated, whether it's illness caused by

someone's property investment or not. It would be my suggestion that the

medical

community set up a dictionary of terms so that everyone is on the same page.

Rather than having Farmer's lung, allergic aeloitis, hypersensitivity

pneumonitis, pulmonary mycotoxicosis, cork workers lung, valley fever, etc,

that are

all THE SAME DAMN ILLNESS, define it under one understood terminology so all

can work from the same page.

Does that make sense?

Sharon

[Guest guest]

> Hi ,

> Out of interest, I looked up info. on Incline Village, there was

not ONE reference to mold!! I dont get it! Kathie

Hi Kathie.

That's because the doctors haven't quite figured it out yet.

Have you read " Osler's Web " ?

When CFS first showed up at Truckee High School in the basketball

team and in a group of ten teachers, the only commonality between

those teachers was that they used a common conference room to take

their breaks. One of the teachers felt so crappy in that room that

he took his lunch out and sat in his car even though it was snowing

and extremely cold (Truckee is consistently one of the coldest places

on the weather map).

That teacher was the only one who escaped CFS.

Now isn't that odd?

I'm a graduate of Truckee High School and I remember how bad that

place made me feel - it just took me apart and I was an emotional

mess. The dean of students, Mrs Corelli was a wonderful person and

really tried to help me survive that damned school. But eventually

she too was almost destroyed by blinding headaches and fatigue and

wound up doing the same rounds of doctors that everyone else did.

After years of suffering and getting no help from ANY doctors, I had

that fight with Dr and left to pursue my own strategy of

extreme mycotoxin avoidance, which involved identifying the mold that

I considered to be responsible for my illness. After I did so, and

demonstrated the results in no uncertain way by leaving Dr s

ampligen program and recovering to such an extent that his

receptionist told me " His failure to look into your information is

criminal " , I found that all the other CFSers I came into contact with

were reeking with the same " mold hits " that I had identified as

Stachy. And then I learned that Stachy had been found in Truckee

High School and was involved with a smaller cluster of sick teachers

and students at North Tahoe High school.

As I've said so many times before, I gave Dr an education in

mold but he showed no apparent interest.

At least he refused to talk to me about it after I proved him wrong.

But what he did do, is advise a couple of his " ampligen success

stories " to bail out of their mold ridden houses after they relapsed.

I was pretty stunned to find out that Dr reversed himself on

the importance of mold to CFSers but didn't bother to talk to the

person who debated the point with him and then demonstrated the

relationship; -me.

Even the people who wrote this abstract haven't learned about the

Stachy-CFS connection yet although this scenario is being recreated

all over the world. http://infoventures.com/osh/abs/sbs0001.html

It was only recently that I learned that at the AACFS conference,

Kenny DeMeirleir and Suhadolnik had somehow learned about the

mold at Truckee High School and made the connection between

the " teacher incident " and the initiation of chronic illness.

So the reason you haven't heard about the mycotoxin connection to CFS

is that doctors aren't talking about it. Sick people have been left

totally on their own to figure it out for themselves.

People generally dismiss my story after they ask me " What doctor did

you learn this from " and I have to tell them " None. I had to figure

this out on my own " .

Somebody had to do it.

-

[Guest guest]

In a message dated 1/4/2005 9:16:21 AM Pacific Standard Time,

erikj6@... writes:

Sick people have been left

totally on their own to figure it out for themselves.

That is a very true statement - one that makes me very saddened. This

illness is akin to AIDS in many ways - the attack on the immune system that

generates terrible systemic reactions - the ostracizing that people receive who

have

it - though AIDS patients are probably treated far better by the medical

profession and general public, now, through the efforts of the gov't and special

interest groups who insisted on that.

We need to be a protected class who may not be discriminated against. We

should be but aren't treated as such. Companies, doctors, employers, attorneys,

friends and relatives - all may treat us very differently - that is what makes

it worse than many other diseases. At least with the other diseases, there

is some degree of sympathy and humane treatment.

We need to form our own special interest group and demand that we also be

treated fairly and justly, perhaps. Maybe a case with the ACLU would help.

SB

[Guest guest]

Hi ,

I am taking samento for lyme (and using my zapper with a lyme program

driver, together with the parasite driver & the blue one), also taking ALA

for recent (4 months ago) amalgam removal and also taking goats whey

(Capra). Would this product help me? Would I have to stop taking anything

else I am taking?

Val

did you try pca-rx as a metal detox? a lot of

lyme/autism / normal people are geting real good

results.

www.maxamlabs.com

roger

[Guest guest]

samanto can drive the lyme into cyst form, just like

abx do, you need to rotate it!

the hg is a big problem with lymes too.

i donot know if a zapper has the power to get into the

gut organs cells and tissues, they are not used on the

groups i am in, they didnot help me, does the zapper

help you?

there are so many coinfections with lyme.some need to

use artemisinin. (sweetwormwood).

read www.lymephotos.com try the salt-c- some are

getting good results.

roger

--- valerieforster <ambney1@...> wrote:

> Hi ,

>

> I am taking samento for lyme (and using my zapper

> with a lyme program

> driver, together with the parasite driver & the blue

> one), also taking ALA

> for recent (4 months ago) amalgam removal and also

> taking goats whey

> (Capra). Would this product help me? Would I have

> to stop taking anything

> else I am taking?

>

> Val

>

> did you try pca-rx as a metal detox? a lot of

> lyme/autism / normal people are geting real good

> results.

>

> www.maxamlabs.com

>

> roger

>

>

>

>

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