hello all .. new member here needs lots of help and support

[Guest guest]

Our mold story

My name is , 39 yrs old.

12/2005 I started having neurological problems (stuttering, confusion,

getting lost, very little short term memory, loss of balance). Other

symptoms included nausea, hypersensitivity to pain, dizziness, extreme

fatigue, and depression. I had to stop working at my job as a

customer service rep with BlueCross BlueShield because I was no longer

able to perform my job duties and went on short term disability. I

had worked there for 3 1/2 years and loved my job. I was falling down

all the time and would get lost at work and in my own house. I

suddenly could no longer " read out loud " the things on my computer

screen. Sometimes I can't remember my own children's names. I am a

diabetic and have hypothyroidism but have had both of these for 13 yrs

but these symptoms seem to be pretty fast onset and my doctors don't

seem to be able match my symptoms fully to any of my diagnosis. I

have extreme pain from peripheral neuropathy in my arms and legs and

shooting pains through my whole body but because they couldn't

diagnose me, so they wouldn't treat me. I was tested for so many

things …. MS, Alzheimer's, dementia, and Lyme disease.... And anything

else they could think of. All negative. My grandmother saw a show on

court TV about a family sick from mold and she thought of us. She

bought us a home tester for the mold in our house and the thing showed

toxic mold... With this we decided to test further. We had the mold

in our home tested. They did a tape sample and had it sent out to a

lab. When the results came back showing we had penicillium,

aspergillus and cladosporium. The house was not air tested. I went on

line to look these up and was amazed to see so many of my symptoms ...

I went to my primary care provider of 20 plus years and was told that

mold is not part of the American Medical Journal and there for it does

not cause neurological problems. He told me that if I mentioned mold

again I would be asked to leave. It wasn't even a possibility. (I

haven't been back since). In the mean time I have been unable to work

for more than a year. I was also told this American medical journal

thing by my neurologist and psycho therapist. My psych test shows I

am just depressed (need to take an antidepressant, see my social

worker and go back to work) and have somatoform disorder.

What is somatoform disorder?

People with somatoform disorder have a number of different symptoms

that typically last for several years. Their symptoms can't be traced

to a specific physical cause. In people with somatoform disorder,

medical test results are either normal or don't explain the person's

symptoms. People who have somatoform disorder often become very

worried about their health because they don't know what is causing

their health problems. The symptoms of somatoform disorder are similar

to the symptoms of other illnesses. People with this disorder may have

several medical evaluations and tests to be sure that they don't have

another illness. (From: http://familydoctor.org/162.xml )

Now with this diagnosis my short term disability has been denied and

so have my SSI and SSD…. And now I sit in appeals on all.

The home we lived in was a duplex we live there for 3 years and the

house flooded 5 times and we were told by property management to sand

bag and they never came out to clean up the water. Every 6 months we

had home inspections by the property management and showed them the

mold and water damaged carpets thru the house. Nothing was ever done

until the last flood in 1/2006 when the owner showed up and called the

property mgmt. They sent out a carpet guy. His answer was that we

had too much stuff and he could not replace all the carpet with our

stuff in the house. With that we were given a no cause eviction so

that they could come in and do repairs to the home. While we were

trying to pack and clean up for the move we started vomiting and

coughing so bad we could not continue. We had to walk away… from all

of it. Things that meant nothing and so much that meant a whole lot.

The hardest part is watching our kids have to go thru so much. No

matter how much you try to hide it from them …. They know. We had to

borrow money to buy a travel trailer and move into a camp ground to be

in a clean air environment.

September 2006 I was seen by Dr. Kaye Kilburn at Neuro-Test, Inc.,

(http://www.neuro-test.com/ ) who diagnosed me with chemical

encephalopathy due to mold/mycotoxins, peripheral neuropathy due to

mold/mycotoxins, and chemical intolerance due to mold/mycotoxins. One

of the most important things he told me was that my depression

accompanied confusion and tension/anxiety usually accompany severe

impairment and intolerance to chemical due to mold/mycotoxins. My

mild depression fits this connection and is neither independent nor

causing impairment. This was very important to me because others

providers had tried to convince me that all my symptoms were in my

head and from my depression.

And how about these connections:

In September of 2002 I had a neck surgery, which was successful. I

recovered from the surgery inside the duplex. 10 days after my

surgery, I was admitted for emergency surgery for an infection around

my spinal cord. With this surgery I had to stay for a week because

they were not able to identify the type of bacteria that was growing.

In May of 2003, my brother spiral fractured his leg and recovered on

our couch in the duplex. Drs were baffled as to why his leg would not

heal properly. Finally they did surgery to find out what was going on

and found an unidentified bacteria growing. His leg is still painful,

swollen and purple marbled looking.

In the 3 years we lived in the duplex, my 13 yr daughter missed many

days of school due to extreme back pains, many UTIs, and sharp

shooting pains in her legs and hands much like my own. She is having

testing for peripheral Neuropathy.

We believe my 5 yr son may also have peripheral neuropathy. He hops

around the house saying he has a broken leg and we have to rub his

legs often due to leg pains. He has some learning disabilities, speech

problems and delay of fine and gross motor skills. His doctor wants

to send him to a specialist for his pains.

My fiancé is still working but is in a lot of pain with his feet and

legs but has no insurance to go to the doctor. He also has a problem

with confusion and is having problems with his short term memory.

The latest: because of my balance problems and dizziness I fall a

lot…. Just found out that I have 2 messed up disc in my neck and will

most likely be back in surgery…. Also had to have MRI of rotor cuff

and x-ray of hand for possible broken bones…. Still waiting on the

results

TO BE CONTINUED……

additionally:

I want to put out a huge " Thank you!!! " to all my friends and family

at BlueCross BlueShield. Without your love and support, I don't know

how we would have made it. When we had to move into a travel trailer

the fridge was not working, they showed up with a really nice fridge

and food to fill it. When we needed clothes because we left all ours

behind, they showed up with clothes for all and even from the office

across the state. One of my friends had a home jewelry show and

donated her profits to help us out when we really needed it the most.

And the jewelry she sent to my daughter and I, make us feel girlie

again. Then we got a letter from our BCBS friends that they wanted to

adopt us for the holidays. It really was an emotional scene with all

of us crying tears of joy and the 4 yr old thinking we have all lost

it. Without them we would not have had a Thanksgiving dinner or

Christmas dinner. Not to mention all the gifts from Santa. This

turned out to be more of a holiday season then I could have ever

imagined giving to my family.

My family and I would like to show our Thank You and appreciation by

spreading the word. So we have started sharing our story by starting

this support group. We are new to this diagnosis and have a lot to

learn ourselves. Please help us out by helping to spread the word

thru out Oregon.