New Here - Please help

[Guest guest]

In a message dated 12/24/2007 8:37:02 A.M. Eastern Standard Time, JALD111

writes:

Hi to all. I am new here and in just a few days I am finally seeing some

glimmer of light at the end of a very long tunnel that there might be some

hope to understanding what has happened to my life over the past year.

I am a 42 year old woman. In my life I have been exposed to some pretty

extreme medical conditions and have always faced them head on, never really

letting anything stop me. A very brief history - very, very allergetic as a

child, to almost everything. We later found out that Yellow Dye #5 was a

serious

trigger and once that was removed from my diet (in many, many foods, chips,

relish, etc.) my allergies improved to the point of being almost

non-existent, with the exception of typical hayfever every year at the end of

the summer.

We learned of the Yellow Dye allergy when at 17 years old, I was hit by a

tractor trailer head on. Broke almost everything in my body from head to toe.

But while at the hospital for treatment, it was noted that internally I had

been experiencing some kind of allergic reaction as many internal organs

were swollen and affected. The doctors brought this to my mothers attention

and

learned that I was on a medication - Ortho Novum, a birth control pill

(which I was placed on to control an ovarian cyst of all things) which

contained

high amounts of Yellow Dye. Following the diagnosis of the cyst, then

recovery from the accident - I spent the next 4-5 years developing numerous

Dermoid

cysts, undergoing extensive pelvic operations, underwent a partial

hysterectomy at 18, underwent a total hysterectomy at 19 and then for 4-5 years

following the total hysterectomy continued to develop " ovarian " dermoid cysts

due to

ovarian " tissue " which remained. So...the point of all of this, is simply

to say that I have had more than my share of extraordinary medical conditions,

pain and recovery to deal with. In the end, I believe that going through it

made me stronger and more tolerant of pain than many people.

For the past 15 years, I have worked as a CEO of an international

corporation founded and run by myself and my husband. Our organization

specialized in

providing international aid and services to orphaned children in foreign

countries and often required extensive international travel and very long

working

hours. It was never the type of job however, that made you " ill " from being

a workaholic because we absolutely loved what we did and we got to see the

enormous difference we made in the lives of so many children. So, it wasn't a

" negative " stress situation like many people would associate of a corporate

CEO.

Ten years ago we moved into our current home because it also had a full

office attached to the home, situated on a beautiful heavily wooded lot. It

was

an older home, about 40 years old. Although we noticed " water marks " on the

basement walls, the owners assured us that they had not had water in the

basement in about 20 years since they had a french drain put in. And, I have

to

admit that the basement was full of boxes and old thing being stored that did

not look as if water was a problem. We did however, have a full home

inspection just to be sure - which turned out fine.

I don't think I really noticed anything for a few years but my parents were

the ones that actually started to nag at me about traveling internationally

so much stating that every time I went away - I got sick. I would come home,

get really sick - often with flu-like " allergy " type of symptoms, often

severe enough to be bedridden for several days - but believed that I " picked

something up overseas " . It would often take several weeks to begin feeling

better, when I would need to travel again somewhere else and the cycle would

start

all over. My parents were worried that I needed to stop traveling so much

and felt that it was taking a toll on my health.

At the time, my business was fairly new and I did not have a lot of staff

that could step in and take over the type of responsibility that I handled.

But I did begin working towards this goal by hiring my husband who could do

some of the travel and additional staff that I could begin training to take

over

some of the responsibility. This took a few more years before I really saw

a significant decrease in my international travel. What did become apparent

during that time, was that although my international travel had decreased -

I had now become more involved with advocacy and domestic issues that

required more travel within the continental US. And the cycle continued.

Whenever

I traveled, I seemed to " pick something up " while I was away and always got

sick when I returned home. So, it was suggested to me - that because my

office was attached to my home (and I very seldom got away from my office) that

my body had become accustomed to NOT being exposed to outside germs and

bacteria. And that whenever I traveled, I was probably getting sick simply

because

my immune system had stopped putting up a defense to those germs and

bacteria that people are normally exposed to outside of their home environment.

OK...made sense.

So...the next few years I set about making changes in my life that would

help eliminate more and more of the travel entirely and within the past two

years finally accomplished that goal. However, in the meantime, I have been

diagnosed with type II diabetes, which they have not been able to get under

control despite trying just about every medicine known to man.

Two years ago, I contracted Spinal/Bacterial Meningitis and was deathly ill.

And over the past few years I have progressively lost most feeling in my

feet and ability to move my toes however that was also accompanied by extremely

nerve sensations through my legs and feet,. there was some concern at first,

that maybe the loss of sensation in my legs/feet may have had something to

do with damage from the spinal meningitis and/or the spinal taps performed

during testing for that condition, but later it was determined not to be caused

by that. Eventually (that's how we found out I had diabetes), through

neurological testing it was determined that I had extensive neuropathy, most

likely

resulting from the diabetes. Several medications were tried such as

neurontin, etc. that did not seem to help until they tried Topomax. That is

the

only medication that seemed to help alleviate the problems. They kept me on

the

Topomax until about 18 months ago, when the condition in my legs and feet

cleared up enough that I did not seem to need to continue the medicine.

In the past 18 months - it seems like my entire world has been turned upside

down and shattered. Just about the time that I turned 40, I suddenly began

to lose a lot of weight (not by dieting). I was having extreme difficulty

sleeping. I experienced vomiting, but not necessarily an advanced feeling of

nausea. It would just come on suddenly...I had to throw up. Usually during

or shortly after eating. Afterwards, I would be fine - no residual nausea to

speak of. It coincidentally occurred during a time that my business and

" personal " life were suddenly thrown into an absolute crisis situation and I

believed that while I always thought I handled stressful situations extremely

well, considering all the I had dealt with in my life already - that maybe I

wasn't handling this as well as I thought I could. I also had allergies

suddenly this year that started around hayfever time, and just never went away.

So...to the doctors I went. The doctors prescribed Wellbutrin and said that

should help. They gave me allergy medicine and told me that many people were

complaining of allergies this year because up here in the NJ/PA area of the

country - we had such a mild winter - that it did not " freeze " long enough to

kill off a lot of the things that typically cause allergies in this area.

Ok...made sense.

Well...the past 18 months I have spiraled downhill faster than I could have

ever imagined. I have gone to doctor after doctor after doctor. I have

thought that I am allergic to something and have asked to be referred to an

allergy specialist. The doctor says he does not believe I am allergic. Each

time

that I have gone to him I have massive sinus infections. He puts me on

antibiotics for a two week regimen. It starts to clear up just a tiny bit by

the

end of the two weeks and within a week of stopping the antibiotics, the pain

shooting up my face had been almost unbearable. Then it takes another week

or so to get an appointment. I go back and he starts another round of

antibiotics, but for a 4 week regimen. This has usually been enough to help

clear

it up for at least a couple of weeks before another massive sinus infection

sets in. Then, the cycle starts all over. Pain, doctors, medicine, no med,

excruciating pain, doctors again, more medicine, etc.

My sinus problems progressed to the point where I could no longer lay down

in bed...at all! I began propping myself up on the couch, with all kinds of

pillows around me so that I could try to sleep sitting up. Every time I tried

to lay down, I could feel my sinuses start going crazy and filling up.

Within 15 minutes, or sometimes a half hour or so - my sinuses would be so set

off that I would be in excruciating pain for hours. I also noticed that the

inside of my mouth would itch, burn, hurt and get these massive sores. I have

artificial teeth (because of the accident) but that way the nerve sensations

felt - I would swear that I still had every tooth in place with a tremendous

toothache. The roof of my mouth would swell so bad that I had to take my

teeth out and sometimes I could not get them back in. I kept going back to the

doctor, one day even being lucky enough to be able to physically show him the

big sores in my mouth. He said that was NOT related to the other problems

that I was experiencing and that I should see a dentist.

Lots of things weren't adding up or making sense. During this time, a

friend - knowing how sick I had been, offered us their beach house for a week.

Said if it is allergies - there is no better place to be than at the beach

(which I have always known that the salt air helps clear sinuses). I went to

the

beach and within the first day - I was absolutely remarkably like a new

woman!! All symptoms virtually cleared up. By the end of the week I FELT

GREAT!

My kids (I have two young adopted daughters) were so happy that Mom was

feeling better and back to her old self. But when we got home Sunday night -

within 2 hours all symptoms had returned...WITH A VENGENCE! Sometimes that is

even harder...when your body goes through the actual changes of getting

sick...and you feel it happening...and you can't stop it.

Two weeks after that, I had to go out of state for an unexpected situation.

I was away for a week. I was not at the beach, where the salt air would

have helped. The very first night that I was away, I was 60% better. By the

next day, again...I was almost like a new woman. At the end of the week when I

returned home - within a couple of hours I was once again experiencing

terrible pain in my face (for some reason only the left side of my face do I

ever

experience this pain in), massive sinus swelling, sores and swelling of the

mouth, etc. So back to the doctor I go. He still feels I need to see a

dentist because of the problems in my mouth. By now I am so debilitated that

my

husband has to now take me to my doctors appointments as I can't drive and

can barely make it being up for more than an hour or so. I live my life

propped up on the couch. So...he takes me immediately to the dentist. The

dentist

says it is nothing that he could do since all of my teeth have been removed

- I need to go see the maxilofacial surgeon that did all the work. So...we

call and get an immediate appointment to see the maxilofacial surgeon. He can

see that I am obviously in extreme pain. He can see that it is most

definitely affecting the mouth, the nerves to the eyes, etc. But...he doesn't

feel

that it is anything " facially " oriented and feels I should see an ENT. He

calls someone he knows and makes arrangements for me to be seen immediately.

The ENT orders Cat Scans and MRI of the face and sinuses. It does show that

one of the openings on the left side is somewhat smaller, but he does not

believe it is causing my problems and feels I should go back to my family

doctor. NOW WHAT??

Now I'm home and desperately trying to sort out the pieces to this puzzle.

I have now lost close to 100 lbs. in the past 9 months. I went from a

women's size 2x to a JUNIORS size 2. I have not been able to lay down to

sleep in

9 months. My body hurts so bad from head to toe. I have " attacks " where

the left hand side of my face is in such excruciating ungodly pain that I want

to get up and RUN or do something...anything to make it stop. None of the

pain medicine the doctor has given remotely makes a difference. I do not sleep

for days (usually 3-4 days at a time) and then it'll hit and I will sleep -

sitting up propped on the couch, for 18 hours straight and literally be in

almost a drug enduced state where I almost can't even pull out of the sleep.

I became determined to find out what was making me this sick. I started

trying for a few minutes at a time to do whatever research I could on the

internet. I started with facial pain and learned a lot about Facial

Neuropathy.

Everything I read made sense!!!!! So many of the conditions sounded just like

me and described everything I was going through (even people not being able

to lay down to sleep). I printed and read everything I could about the

disease and learned that they were having remarkable success with an

experimental

treatment for this condition - TOPOMAX!! The same medicine that I had been

on before that they stopped about 18 months ago. So...we try the topomax

again. Within two weeks I begin to notice a remarkable improvement in the

excruciating facial pain and in the agonizing nerve sensations that would shoot

through my face. But after 4 weeks, I still have not noticed a difference in

much else.

My sinuses are worse than ever. Last week, these enormous (I hate to be

graphic here) things have been coming out of my nose that look like big worms,

but made of blood and hard, crusty yet gooey something. I will pass 3 or 4 of

these a day and they are extremely painful both prior to and as they are

coming out. I saw a show on Action News about Boric Acid (which they are now

putting on bedding as a fire retardant) on bedding making people sick. It just

so happens we did get a new bed a couple of years ago!! Maybe...could that

be it?????

So...out with the bed it is. But still not improvement. So...we decided

to hire an environmental company to come and test our house. They did. They

have found that our house is just infested with MOLD. Everywhere!!! The

basement, the crawl space, both attics. And within a few days of their first

and second visit - it is spreading very fast!!!!

Help!!! I don't know what to do next or where to turn. I have ended up

losing my business this year. My husband and I are now both out of work. I am

almost completely bedridden. My 10 year old daughter also has severe

allergies and throws up 3-4 times a week. She has also been diagnosed with

cognitive disorders, associative disorders, anger/rage management disorders,

etc. At

this point, due to the terrible decline in the housing market in our area -

we owe more on the house than we could even sell it for. And we are both out

of work, so we have no money to leave the house and go anywhere. I just

don't know what to do next.

I am so sorry for such a long post - but reading all of yours the past

couple of days I finally found others who are also experiencing much of what I

am

going through and I just pray that some of you may have some information that

may help me.

Please feel free to contact me off list as well with anything that you may

know of that could possibly help. I can't count on the medical profession

right now and am trying to figure this out on my own.

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[Guest guest]

What I am about to suggest, should not be evaluated on the basis of morality,

because what we are talking about is a matter of life or death; YOUR life or

death. In such circumstances, you must do whatever is necessary to stay alive,

and keep your family alive. If, as you say, the housing market is depressed, you

must RENT your home to someone else, and use their rental money to move

elsewhere to RENT a place for YOU to live, even if that rental money means that

you may ALL have to live in a single room, at your new location. The NEW

location will allow your body to heal and regain it's strength, so you can think

clearly enough to make long-term plans. Don't worry about your NEW single room

being too small to take any of your stuff with you, because you CAN'T do that

anyhow, as it would contaminate your new environment.

The morality of dumping your old problem house on someone else, can be

justified with the comforting thought that only a small percentage of people

have our " sickbuilding " illness, and you are most likely going to be renting to

a non-sufferer, who will think that they are living in a wonderful house, at a

bargain rental. Just don't collect their rent money by going back to that house.

Have them mail it, instead, or arrange for their checking account to be debited,

once a month, and automatically deposited into your checking account. You will

be a " Moldie " for the rest of your life. Once you have " healed " , after this

initial exposure, you will notice that even tiny exposures, such as picking up a

rent check at a moldy house, is enough to make you sick again.

Every minute you continue to stay in your present moldy environment, you are

damaging your body. At some point, when you have escaped your moldy environment,

you will heal and your symptoms will get better, but the damage already done to

your body will be permanent. You will notice that you are not the same person

you were BEFORE your exposure. If you can create the mental image of one of your

fingers and toes falling off, every week in your current moldy environment while

you are sick, and realize that once you are out of that environment, you will be

healthy, but NEVER get those fingers and toes back, for the rest of your life,

you will grasp what I am saying. Our REAL damage is internal, and not visible.

But the devastating reality is the SAME.

Below is the 8 year old news release, from the Mayo Clinic, that a previous

poster referred to, which states that almost all CHRONIC sinusitis is caused by

fungi (mold), and not by bacteria. So your doctor can have you squirting

antibiotics up your nose, forever, and it won't do any good. Only ACUTE

sinusitis is bacterial in origin, and can be cured by antibiotics. If you are

wondering why your doctor is unaware of this 8 year old reality, it is because

the drug companies have not yet figured out how to make buck$$$$$$$$$$$$$, from

this reality, so your doctor is not being educated by the people who give him

his daily " continuing medical education " - the drug " pushers " from the major

pharmaceutical manufacturers.

In May 2007, the Mayo Clinic got a $2.4 Million grant from the National

Institute of Health (NIH), to develop therapies based on their 8 year old

discovery. Please guys, figure out a way to make the drug companys even richer

[sarcasm] cause its the only way the truth will get out to the doctors. Oh yeah,

please also make the new therapy a way that the doctor can get even richer

[double sarcasm], or WE will never get cured.

In the meantime, run, run, run. Get out of there. Stop wasting your time and

money on testing your house. You own body has " tested " the house many times, in

your account of your suffering. When you are there, you are sick. When you are

NOT there, you are NOT sick. Duuuuuuuuuuuh. Run.

Best of luck.

Joe

Mayo Clinic Study Implicates Fungus As Cause Of Chronic Sinusitis

ScienceDaily (Sep. 10, 1999) — " We can now begin to treat the cause of the

problem instead of the symptoms "

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

ROCHESTER, MINN. -- Mayo Clinic researchers say they have found the cause of

most chronic sinus infections -- an immune system response to fungus. They say

this discovery opens the door to the first effective treatment for this problem,

the most common chronic disease in the United States.

An estimated 37 million people in the United States suffer from chronic

sinusitis, an inflammation of the membranes of the nose and sinus cavity. Its

incidence has been increasing steadily over the last decade. Common symptoms are

runny nose, nasal congestion, loss of smell and headaches. Frequently the

chronic inflammation leads to polyps, small growths in the nasal passages which

hinder breathing.

" Up to now, the cause of chronic sinusitis has not been known, " say the Mayo

researchers: Drs. Sherris, Eugene Kern and Jens Ponikau , Mayo Clinic ear,

nose and throat specialists. Their report appears in the September issue of the

journal Mayo Clinic Proceedings.

" Fungus allergy was thought to be involved in less than ten percent of cases, "

says Dr. Sherris. " Our studies indicate that, in fact, fungus is likely the

cause of nearly all of these problems. And it is not an allergic reaction, but

an immune reaction. "

The researchers studied 210 patients with chronic sinusitis. Using new methods

of collecting and testing mucus from the nose, they discovered fungus in 96

percent of the patients' mucus. They identified a total of 40 different kinds of

fungi in these patients, with an average of 2.7 kinds per patient.

In a subset of 101 patients who had surgery to remove nasal polyps, the

researchers found eosinophils (a type of white blood cell activated by the

body's immune system) in the nasal tissue and mucus of 96 percent of the

patients.

The results, the researchers say, clearly portray a disease process in which,

in sensitive individuals, the body's immune system sends eosinophils to attack

fungi and the eosinophils irritate the membranes in the nose. As long as fungi

remain, so will the irritation.

" This a potential breakthrough that offers great hope for the millions of

people who suffer from this problem, " says Dr. Kern. " We can now begin to treat

the cause of the problem instead of the symptoms. "

More research is underway at Mayo Clinic to confirm that the immune response

to the fungus is the cause of the sinus inflammation. The researchers are also

working with pharmaceutical companies to set up trials to test medications to

control the fungus. They estimate that it will be at least two years before a

treatment will be widely available.

The researchers distinguish chronic sinusitis -- sinusitis that lasts three

months or longer -- from acute sinusitis, which lasts a month or less. They say

that the cause of the acute condition is usually a bacterial infection.

Antibiotics and over-the-counter decongestants are widely used to treat

chronic sinusitis. In most cases, antibiotics are not effective for chronic

sinusitis because they target bacteria, not fungi. The over-the-counter drugs

may offer some relief of symptoms, but they have no effect on the inflammation.

" Medications haven't worked for chronic sinusitis because we didn't know what

the cause of the problem was, " says Dr. Ponikau. " Finally we are on the trail of

a treatment that may actually work. "

Thousands of kinds of single-cell fungi (molds and yeasts) are found

everywhere in the world. Fungal spores (the reproductive part of the organism)

become airborne like pollen. Some people develop allergies to fungi. The new

evidence from the Mayo study suggests that many people also develop a different

kind of immune system response.

Adapted from materials provided by Mayo Clinic.

[Guest guest]

In a message dated 12/29/2007 9:20:33 A.M. Pacific Standard Time,

josephsalowitz@... writes:

I am astounded at the unanimous vituperation that my suggestion has

generated. Please read her above words, again, so you can " hear " her

desperation.

ph,

We did read her words. We have read her words over and over and over again

as they were written by many from all walks of life over the years. And we

don't want to read them again, from the family you are suggesting she dupe in

order to safe her own family's finances. Do you want to read these words

written by yet another family? What if it was YOUR family that she rented the

moldy house to, would that be okay with you?

Sharon K

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[Guest guest]

" New Here-Please help " wrote the following words, as part of a very long, and

terrifying, account of her suffering:

.................................................................................\

.....................................

" Help!!! I don't know what to do next or where to turn. I have ended up

losing my business this year. My husband and I are now both out of work. I am

almost completely bedridden. My 10 year old daughter also has severe

allergies and throws up 3-4 times a week. She has also been diagnosed with

cognitive disorders, associative disorders, anger/rage management disorders,

etc. At

this point, due to the terrible decline in the housing market in our area -

we owe more on the house than we could even sell it for. And we are both out

of work, so we have no money to leave the house and go anywhere. I just

don't know what to do next. "

.................................................................................\

....................................

My suggestion to her, in my previous post, was that she rent out her mold

house to someone else, and use that rental money to pay her rent on a new

mold-free rental for herself and her family. Even that suggestion will only

work, if the holder of her mortgage will temporarily give her a " compassionate

suspension " of her mortgage payments, to prevent forclosure. Given the current

large volume of forclosures, her mortgage holder might go along with the idea.

I am astounded at the unanimous vituperation that my suggestion has generated.

Please read her above words, again, so you can " hear " her desperation. As I

write these words, I am looking at my 91 year old father who is dying from

mold-related issues. I warned him, at his time of 2 year long mold exposure,

that it would kill him. But, he chose to ignore my warning. This is MY world.

Read this woman's description of HER world, above.

We are ALL faced with the decision of what to advise a woman who is asking for

alternatives to staying in her mold-house. We ALL know that staying there will

kill her. I have not yet seen a single OTHER posting on this board, which offers

her an alternative to sure death. So please stop wasting your time calling me

the " Grinch " of the mold community, and devote your efforts to keeping her

alive, with your own advice. Remember, the only BAD suggestion, is the one NOT

given.

I am a very moral person, and have risked my own life, many times, in the

cause of morality and justice. This woman's life depends on " drastic " solutions.

If you believe otherwise, please offer her your less-drastic (more moral)

solutions.

Joe

[Guest guest]

We are all desperate!! It still doesn't justify that. It would also make them

liable. Can they afford to get sued?

Sharon what you wrote was write on the money, I liked it so much I forwarded it

to some people that needed a wake up call.

Thank you !!

a

snk1955@... wrote:

In a message dated 12/29/2007 9:20:33 A.M. Pacific Standard Time,

josephsalowitz@... writes:

I am astounded at the unanimous vituperation that my suggestion has

generated. Please read her above words, again, so you can " hear " her

desperation.

ph,

We did read her words. We have read her words over and over and over again

as they were written by many from all walks of life over the years. And we

don't want to read them again, from the family you are suggesting she dupe in

order to safe her own family's finances. Do you want to read these words

written by yet another family? What if it was YOUR family that she rented the

moldy house to, would that be okay with you?

Sharon K

**************************************See AOL's top rated recipes

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[Guest guest]

Joe,

I understand why you said that but its obviously a bad thing to do, if

the house isn't remediated,

because the house will make someone else sick like they are, if it is

sold or rented without

the problems being fixed and then the house cleaned up FIRST.

This is happening to people all around the country and the kind of

rigid thinking that

everyone seems to be engaging in is getting us nowhere. You are a

smart guy, can you

think of any other ideas?

The problem is that people who rent a place like that do it because

they are cheaper.

They do it often because they don't realize how dangerous it is. Often

these people

have families that THEY ARE MAKING DECISIONS FOR.

Children can't live on their own. If a child doesn't want to be

sickened by a moldy

home, they can't say " Dad, I don't want to be sick for the rest of my

life so I will

just go rent my own apartment "

Its an involuntary situation.