Re: New Here - Please help

[Guest guest]

JALD,

It's sounds like you have already been able to make the connection that

something in your home/office environment is causing symptoms of ill health.

Pretty serious symptoms I might add. If you have reached this conclusion, then

the number 1 thing would be to remove what is making you ill from the

environment or remove yourself and your daughter from the environment that is

making

you ill.

If you are a tenant, the easiest way to address this is to remove yourself.

If you own the property, then you need to remove what is making you

ill....and you still may need to remove yourself.

In other words, get away from what is making you sick. It may not cure all

of your ills, but it is the first setp to the road to recovery. And you can't

address any other steps until you are healthy enough to do so.

Sharon K.

In a message dated 12/24/2007 10:13:44 A.M. Pacific Standard Time,

JALD111@... writes:

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...sick...and you feel it happ

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...to get up and RUN or do something.

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!!have f

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.

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

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

I didn't see your name anywhere, but welcome to the group. I'm so

sorry for your suffering. You are SO right; we've all been through

this. I was a working RN when we moved into this house, now I'm on

disability, more meds than I can count & have a laundry list of

diagnoses. I can completely identify w/your going away & feeling

better, then going back home & getting ill again; it's so

discouraging, I know. Spent all of past year trying to get myself

well, went to shore for two weeks in Aug. & felt like my old self for

1st time in yrs., but came back home & sick as ever. I want nothing

more than to get my life back, esp. for my kid's sake & to keep them

from becoming as ill as I am. I just had 6 hr. home inspection,

still waiting for results; I refuse to give up! I experience the

same symptoms you mention, even the vomiting w/o nausea, food just

comes flying out, violently; I've gone from size 12 to 2 over past 6

months w/no explanation & the weight continues to drop off of me;

went from days of sleepless nights to sleep apnea w/no explanation &

next to no immune system left. My husband & kids (twin 8 y/o boys)

also have symptoms, but he blames it on everything BUT the house! I

see water stains, hyphae, fungal stains, balls everywhere & the smell

is sickening to me.

Anyway, wanted to just say Hi & hang in there; you'll get lots of

support & answers here. If you ever want to talk, feel free to email

me any time. Hope you can enjoy the Holidays as much as possible &

hope the New Year brings you answers and on a path to healing!

Hugs, Cheryl

[Guest guest]

I first wanted to say that I feel your pain and this group will help

you find comfort and information where it is lacking out in

the " world " .

I also wanted to tell you a few things about your situation that hit

pretty close to home. I do not want to detail my story because I do

not want to lessen what you are going through. However, some of the

things you said, I have been going through or have been through also.

I am 42 and have suffered from all kinds of maladies since I was 19

years old. That was also about the time that I went on the pill but

am pretty sure that just exacerabated my condition. In my first year

of college, I came down with pneumonia and after that developed

chronic fatigue syndrome. We are pretty sure that developed because

my roommate was a really heavy smoker --of which we now know has

always been an issue for me. It was during that time, I started

having female issues also. Over the years since then I have been

diagnosed with allergies of one sort or another until I developed

asthma like symptoms about 12 years ago. Not long after I was in a

car accident and had other " emotional " traumas. In 2000, I finally

broke down and had a hysterectomy because of all the cysts, etc.

problems that had been plagueing me for years. Unfortuntely, after

that the ovarian cysts continued as I only had a partial.

About 3 years ago now, I started losing weight and I mean alot of it.

We now know that was because of multiple chemical sensitivities. Thus

far, I only know of two agents I have been exposed too which is

sulfur volatiles in the water and lead. After I moved out of that

house into another, I continued to have issues but not alot until the

last 3 months I lived there. My weight loss continued in the next

house I lived in and again, I know I was exposed to lead and other

volatiles. What struck me was the burning and the sore mouth you talk

about. I am wondering if you have had your house tested for lead in

addition to the mold? I found that my exposure to the lead made my

sensitivities worse and may even potentiate the effects. Also, it was

found in my situation even though I was tested once and had no

poisoning when they did an EDTA lead test I had enough in my bones to

cause a problem. If you do not know it, two of the functions of bone

are to take up lead in the blood and excrete it slowly and help

regulate the acid/base balance of the body. Unfortunately, when the

body becomes acidotic the bones have the potential to release what

lead is stored in the bone back into the blood. The EPA has yet to

identify a safe level for lead and the levels for which I am

sensitive seem to be a lot lower than normal for an adult.

In addition, I also have learned by trial and error some of my

respiratory problems and back pain were due to my bed --- I got an

organic bed and have had no lower back pain. I can not remember a

time before that I did not have lower back pain. I am positive it is

because of the chemicals in the beds I was sleeping on. Again, I

think one exposure potentiates the effects of exposure of another.

I would also recommend you read my post about Dr. Pall's book,

Explaining " Unexplained Illness. " I would suggest if you can get the

book do and I believe you may find a few things in there very

enlightening. In that post, I detail some things you can do in your

daily life that might help your symptoms. For one, I would get

yourself a good environmental illness doctor -- also explore your

family background to see if there are similar problems in other

family members living and dead.

Feel free to email me with questions. I am sorry I do not know how to

tell you how to access my other post. I can send you a copy

personally if you want it.

Sincerely,

Kramer

Health Education Information and Resource Services (HEIRS)

kkramer@...

[Guest guest]

Welcome to our group but so sorry to hear about all your health problems.

I[m not a Dr. but many of your symptoms sound familiar to me.

I live in MD just about an hr. & 15 mins. from Exton, PA. I know an

excellent environmental inspector that would probably test your home depending

on how

far away you are. He inspects the operating rooms for the Univ. of land

Hospital and I personally know that he is one of the best. Another I know is

in the Arlington, VA area. Both are very nice which you could contact if you

are interested. I don't know how much they charge but it would be money

well spent to find any problems in your home. They first thing to find out is

where you are getting sick!!

Sue

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...sick...and you feel it happ

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...to get up and RUN or do something.

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!!have f

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]

Your letter truly was long, but interesting. At least you have finally figured

that at least part of your health deterioration is environmentally related, and

may hopefully be at least partially reversible, a good starting point. First,

after the Mayo Clinic report a few years back (1999 I believe) describing 95% of

chronic sinus infections as caused by fungal colonization, its probably time to

ditch the doctor who constantly prescribed ineffective antibiotics. This is at

least partly an allergic reaction. Maybe you could try saline sinus irrigation

instead to help control the sinus mold. The timing of your problem probably has

two facets. The first is your age. As we pass forty, the body's natural

production of cortisol, an inflammation controlling hormone, slows down, leaving

us more susceptible to allergic reactions. Perhaps you will notice that many of

us on the sick building board are well past that age. For example, my problems

didn't start until I was 47. Many molds are also immune suppressants, possibly

contributing to some of your other health problems. The second facet is the

building itself. It has aged also. It might have been in great shape when you

bought it, but with ground settling, drought and heavy rainstorms, the

foundation may have cracked and allowed water in. Deterioration of the roof may

have lead to leaks. Perhaps the heating/cooling system has developed leaks,

allowing unfiltered air to enter, bringing in the always present mold spores to

colonize inside.

Your next step is to figure how to reduce your mold exposure, and then maybe you

can reduce your suffering. Mold is always around, getting worse on muggy days,

better on cold dry days. Sometimes we can improve the situation a little or even

a lot.

1. Mold in the attic. Why? Is there a roof leak? If so, that is the first

priority: repair the roof. Mold is nearly always caused by too much humidity,

and particularly from water leaking in from outside. No leak? If so, why is

humidity high enough to cause mold growth? Is the attic adequately vented? Do

you humidify too much in the winter? Perhaps bath or kitchen exhaust goes into

the attic, when it should vent directly to the outside. Perhaps you have no

attic insulation, or insulation with no vapor barrier.

2. Is mold in the walls? Again mold is from high moisture content. Is the

exterior brick or siding in good shape? Does the house need painting? Paint's

primary purpose is not to decorate, but to protect the wood from the weather,

causing water to run off rather than soaking into the framing of the house.

Clogged gutters can cause water to back up into walls, particularly older houses

with box gutters. Make sure all this is functioning properly.

3. Your house has a crawl space. Does water flow into this space and pool? If

so, correct the drainage around the house to prevent this. Water sitting under

the house will almost guarantee a mold problem. Perhaps nearby new construction

has altered neighborhood drainage patterns. Maybe drain lines in the crawl space

leak. No water? How about humidity in the crawl space. Ordinary ground water can

generate high humidity. Placing a vapor barrier over the ground in the crawl

space can reduce humidity and retard mold growth. Once this vapor barrier is in

place, you may need to remove insulation in the crawl space and treat the floor

joists to kill mold.

4. You also have a basement. Is this finished? Almost all basements have some

water penetrating the foundation. Paneling, or worse paper backed drywall, can

become very moldy on back without ever showing on front when used to cover

basement walls. Far worse are the few basement walls built with treated wood

instead of concrete or concrete block. Carpet in basements is another potential

problem source. Ground moisture migrates through basement floors. This can lead

to significant mold growth in older carpet, after years of accumulated dust

becomes excellent mold nutrient. Newer homes are built with vapor barriers under

the floor to retard this problem. I suspect your home is far too old for this

extra level of protection. Do you run one or more dehumidifiers in the basement,

preferably ones which go directly to a drain and don't need to be manually

emptied? Do these run while you are away?

5. Are there any plumbing leaks anywhere. Older plastic water lines were prone

to developing leaks. Even copper pipes can develop pinhole leaks after 30-50

years, depending on the water chemistry of the area. Small leaks can go

unnoticed for months or years, but be a significant contributor to mold growth.

6. The description of your problems starting after returning from each trip

after having been healthy prior to these trips suggests to me that something may

be building up in your house while you are away. I suspect your furnace. You

probably turn the furnace or air conditioner off when you are gone. That may be

setting you up for a problem. HVAC must be designed, installed, maintained, and

operated correctly to maintain a healthy environment.

A. Design: it must be sized right for the structure so it heats and cools

adequately, without being oversized. Proper sizing allows it to run most of the

time, providing uniform temperature and humidity throughout the home. Preferably

it is designed with sheet metal plenum and ducts, which are less prone to

microbial growth. Fiberglass ductboard and even metal ducts with interior

fibrous insulation are prone to microbial growth. If you have these, you might

consider replacing them.

B. Installation: the system must be installed such that the AC drain pan drains

correctly. Water sitting in the drain pan when the fan is off is a major

contributor to mold growth. Also, there must be no leaks between the fan and the

filter which could allow unfiltered air to enter the areas of the system with

moisture, mainly the AC drain pan and the humidifier. For extra protection, turn

the humidifier off. Most houses don't need them. Unfiltered air brings mold

spores and dust (mold nutrient).

C. Maintenance: Suitable filters keep dust and mold spores from entering the

moist areas where they would become problematic. Use filters such as 3M Filtrete

or better. Are there any holes in return ducts running through a damp area of

crawl space or basement? These can allow mold to be sucked into the furnace and

throughout the house. Some return ducts are simply the space between floor

joists, allowing any growth on the wood joists to contribute to air quality

deterioration.

D. Operation: operate your fan continuously during air conditioning season. This

prevents humidity buildup in the air conditioning chamber when the AC is not

running. If you do turn the AC off, run the fan for at least two hours to dry

out the AC drain pan before fully shutting down. If your house has moisture

problems, let the AC run even when you are away to keep humidity under the mold

growing range.

Many houses can be successfully cleaned of mold. Be prepared however to realize

when further efforts are futile, and be prepared to move. Loss of health is more

important that a financial loss on the sale.

Gil Vice

_________________________________________________________________

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[Guest guest]

I am sorry to hear of all you are going through. Somehow you have got

to get out of your house, at least until you somehow get the water

damage repaired and have someone find and remove the mold.

I wanted to suggest two excellent doctors regarding the sinus

problems. They are both in the Buffalo, New York area - Dr.

Sherris and Dr. Jens Ponikau. They have done some research about

allergic fungal sinusitis. To read about it, look at this link...

sinuseducation.org/studies/ponikau_74_99.pdf -

I had sinus problems similar to what you're describing and I have been

treated by Dr. Sherris with Amphotericin B. It's a nasal wash. It

has helped me tremendously. It kills the live mold spores and washes

away the dead spores. If you cannot get to the Buffalo area, you may

want to ask your ENT about this treatment.

I hope that in the new year you will find better health.

[Guest guest]

Hello,

So sorry to hear that you aren't feeling very well. There are lots

of supportive people here, so you have come to a place where you

will receive some help and support.

I can't answer all of your questions, and I am not a doctor and can

only speak from my own experience, so here goes...

I was just wondering about the discrepancy between the TSH levels in

your test results that were taken 3 weeks apart. What time did you

have your blood tests done? My docs always told me to have my

thyroid tests done as early as possible in the morning (I usually

have them done around 8.00am / 8.30am if possible). Perhaps you

could ask your endocrinologist to repeat the tests and get them done

early in the morning so you can compare the results with the first

results you were given, especially since there was such a variation

in the results over a three week period. Try and use the same

pathology lab so you can compare apples with apples, so to speak.

At the moment, it is difficult to know what is going on inside your

body because the two labs have come back with two quite different

results.

You mentioned a number of symptoms that you have. I have problems

with my thyroid and like you, I often have a lot of brain fog and my

memory is terrible. Like you, I also get out of breath very

easily. I didn't lose the hair on my head, but I hardly have any

eyebrows left! I also get the occasional dizzy spell but I'm not

sure whether this has to do with thyroid or something else.

Do you think you have post natal depression or do you think it is to

do with your thyroid or both? Did the doctors consider that it may

have something to do with the operation? The reason I ask is

because you don't mention having any depression until a while after

your thyroid op.

P

[Guest guest]

Hi everyone. I was hoping some of you might be able to help me with some of your advice and experience.

Hi Cocoa, and welcome to our happy little band of Thyroidians. I hope you get the help and support you need here.

I had my first child in April 2007, and last October discovered a large nodule in my right thyroid (I'm 39). The blood tests and biopsy I had were normal, but because the lump was large (about 4cm x 5cm) I had it removed in January of this year along with the right and central parts of my thyroid. The surgeon explained that I have been left with far more thyroid than necessary for it to function normally, and that the blood test I had a month after the op showed that everything was fine.

Many people can have such nodules and part of their thyroid removed and continue to produce thyroid hormone absolutely fine, but this is not the case for everybody

I was diagnosed with post natal depression about 2 months after the operation and prescribed a relatively mild dose of antidepressants which I have been taking for 5 months.

This is the first thing a doctor looks at and off they go to prescribe antidepressants, but never once do they try to find out the cause of your depression. In many cases, this can be caused clinically through a lack of the active hormone T3. T3 has to get into every cell in your body and brain to make them function, and a brain with a shortage of T3 will bring about short term memory, 'brain fog' and feelings of depression. Usually when treated with T3, these lift naturally.

The thing is I am still really not feeling myself at all. I was sent home from work last week because I got myself in such a state. My hair is falling out again (this happened about a year ago after having the baby, but grew back again). I get dizzy spells, my hands shake and I can't focus my mind; sometimes I feel like there is a tennis ball in my head and I have lost half of my brain function. My memory is awful, I get out of breath easily and I´m very down. I know a lot of this can happen after you've had a child, but I can't help thinking surely it's all too much of a coincidence and must be to do with my thyroid.

We have a host of really useful documents in our FILES section. Go to the Home Page of this forum, and in the left hand side Menu, you will see FILES. Click on that and scroll down until you see a file called 'Adrenal Questionnaire' and also 'Candida Questionnaire'. Answer the questions there and let us know how you scored. If high, you would need to get the 24 hour adrenal salivary profile done to see where your cortisol and DHEA levels lie at four specific times during the day. You may also need to check to see whether Candida Albicans is your problem. We can tell you more about these after you have done the questionnaire. You should also ask your doctor to test your ferritin level (stored iron) as the symptoms you mention could be caused if this is very low - and it could very well be. A low reading would require you to take some form of elemental iron such as Ferrous Sulphate 200 mgs - probably twice a day. All of these are very treatable and will make a load of difference to how you feel once treated.

I had some blood tests taken 4 weeks ago - a 6 month post op check - and when I went to collect the results I asked the GP (not my usual doctor) about a connection between my symptoms and thyroid problems. He was adamant I have "severe post natal depression" and told me that it was definitely nothing to do with my thyroid. When I asked for a copy of my test results, he told me I should ignore the TSH result as it was completely normal. These were the results:

TSH 6.094 mIU/l (range 0.41 – 4.01)

Free T4 12.72 pmol/l (range 11.0 – 20.4)

Free T3 6.20 pmol/l (range 3.1 – 7.5)

This is disgusting - he should be put out to grass - or you should run a million miles away from such a plonker. Your TSH is way outside of the reference range and shows that you are hypothyroid and should be commenced on thyroid hormone replacement. Your Free T4 is also low - it is best to have your Free T4 in the upper third of the reference range. However, your Free T3 is high, so you are converting T4 into the active hormone T3.

After doing a bit of research on the internet, I went to see my usual GP last week and she was much more open to the possibility of my thyroid being the cause of my symptoms. She has told me to go and see an endocrinologist, and also did some more blood tests including antibody tests. She called me on Friday with the results which she says are normal, but still thinks I should see an endocrinologist.

Last week´s results (done 3 weeks after test above):

TSH 4.30 (range 0.35 – 4.94)

Free T4 9.03 (range 9.00 – 19.04)

Free T3 3.24 (range 2.62 – 5.69)

In such a short space of time between your last blood test and this blood test, yes, your TSH has dropped, but so has your Free T4 (at the VERY bottom of the range) and your Free T3. This could be an indication that you actually ARE having antibody attacks, even though your antibody results appear normal. If your antibodies are attacking your thyroid, your reading would be high, but if there is no particular attack at the time you were having your blood tested, then your antibody results would be low. These need testing again.

Antibodies antithyroglobin 41.86 UI/mL (range 0.00 – 50.00)

Antibodies TPO 13.57 negative

Can anyone help me work out my results and offer any advice. I've really been losing the plot because I haven't felt right and I was so sure that my thyroid was responsible. Now I don´t know what to think and am totally confused.

You are in good company when it comes to "losing the plot" - this is why the majority of us are here. It is the NHS that has lost the plot, not you. Take up the consultation with the endocrinologist, and if you go to our FILES again, you will see one there called 'First visit to Endocrinologist'. Read through that and it will help you in what you should do to get the message over to him/her about your state at the moment. Anymore questions you want to ask - just shout and somebody will be along to help you

[Guest guest]

Hi there,

You're not rambling at all! Reads similarly to my own first post.I'm

sure you will soon feel supported on tpa, I can relate to your

position entirely. I first had an enlarged thyroid within a year or

two of my last child being born, and had a partial thyroidectomy. The

Dr's told me exactly the same story, 'more than enough left to

function!' That was twenty years ago, and I have to say apart from

very mild symptoms I have been ok. This year it enlarged again, main

nodule in excess of 4cm x 2cm, all checked out and ok (fingers

crossed) but this time rip roaring symptoms for the last year,

affecting life, just as you describe. Sadly, no diagnosis and no

subsequent treatment.

First thing to realise, IT IS NOT YOU don't worry, it's a common

story being told to ignore the blood test results. I'm sure the good

folk of tpa, more knowledgeable than myself, (I'm a newish member)

will shortly be queuing up to tell you that your blood results tell

the story, your thyroid is not working as well as your Dr's might

believe. Your tsh is high and your free t4 low. Good news is that

you're off to see an endicrinologist, hopefully soon.

You've come to a good place and at the right time, you will feel more

empowered to meet with Dr's and put your case. You'll read that many

of us have a similar tale to tell, and that there are some serious

shortcomings in the nhs system, for folk with dodgy thyroids.

It would be good if you do some reading up, I have found this so

helpful in understanding what is happening to me, that in itself is

healing. There's some great files on this site, just click the files

link, to browse, also thyroiduk, another website has sound info based

on similar philosophies as here.

Take care for now, keep reading, don't worry it is possible to get

better. What's your name by the way?

x

>

>

>

> Hi everyone. I was hoping some of you might be able to help me with

> some of your advice and experience.

>

>

>

> I had my first child in April 2007, and last October discovered a

large

> nodule in my right thyroid (I'm 39). The blood tests and biopsy I

> had were normal, but because the lump was large (about 4cm x 5cm) I

>

[Guest guest]

Thanks so much for all your kind replies. I have done the two tests and scored 139 on the Candida one. For the adrenal test - total questions answered = 41, total points = 99, severity = 2.41, number of asterisks = 3.Do the antibody results I posted look normal? I haven´t managed to find any info about those tests. As far as I remember, both blood tests were taken at around 10.00 am. I really don´t know what to think about my depression. I had it for some time before I had the operation, but it´s hard to pinpoint when or why it started. I had a good pregancy and my husband and I were delighted to have our son, who is fantastic. When I found the lump in my thyroid I was very scared and upset. Both my parents died of cancer when I was quite young (I don´t know which type). My mum died first aged 47 when I was 7, so when I found the lump I thought a lot about whether or not it would be serious. It really made me imagine how my mum must have felt to know she was dying and leaving her husband and child behind. My GP put my depression down to a combination of going through all this and it being the first year of having my son, and diagnosed post natal depression.It´s only recently that I started to research more into thyroid symptoms because I know I´m really not myself and it´s been going on for months. I used to be a really easygoing and happy person and would make the best of everything. But the last few months I have become bitter and resentful and quite horrible. I get so angry and frustrated and my poor husband gets the brunt of it. I know this isn´t me and I just get really upset about it all, I´m not very good at coping at the moment.Thanks again for posting back to me.Liz x

[Guest guest]

Hi Liz

It could very well be that your depression came about because of your worry about your Mum and Dad's deaths, both due to cancer - and then the birth of your son and the operation to remove part of your thyroid - that would make the majority of us quite depressed.

The results you posted show you do not have antibodies to worry about, though this doesn't mean to say that you don't have them. They could have just been very quiet when you had your blood test done - at other times, the antibodies may have been very active and these would have showed higher. I would get them tested again if things don't wettle down.

You do need treatment for your hypothyroidism, even if your GP thinks you don't, and you do need to see a specialist in thyroid disease, and not an endocrinologist who's only speciality is in diabetes. Have a read on our website about the presence of Candida Albicans with hypothyroidism and see what you think. www.tpa-uk.org.uk - click on Hypothyroidism and on the drop down menu, click on 'Associated Conditions' and then click on Candida. Also, ask your GP to test to see whether you have a low ferritin level (stored iron) as you can get the symptoms you mention with a low reading.

Luv - Sheila

> > It´s only recently that I started to research more into thyroid> symptoms because I know I´m really not myself and it´s been going> on for months. I used to be a really easygoing and happy person and> would make the best of everything. But the last few months I have> become bitter and resentful and quite horrible. I get so angry and> frustrated and my poor husband gets the brunt of it. I know this> isn´t me and I just get really upset about it all, I´m not very> good at coping at the moment.