Following is a timeline of events that we have been through and continue to go through in relation to our exposure to toxic mold. We have experienced and learned a lot and we have a lot of work ahead of us to regain our families health. The best advice I have been given through all of this is to FOCUS ON HEALING! I have to remind myself of this daily.
November 1, 2012
We are sooooo excited to finally be moving into a nice
family home back out in the country where we will be able to have more freedom,
fresh air, and more animals!!!!! Before making this move we were a relatively healthy family and only visited the doctor a few times a year for minor issues and hadn't had a hospital stays for six years with the exception of the birth of a baby.
December 1, 2012
We receive the very unexpected and unwanted news that we are
expecting another baby. I go into a 3+ month depression trying to accept this
news and be happy about it. I had just taken off 30 lbs., we have no maternity
insurance, we will have to buy a new vehicle to accommodate a family of 9, we already have three disabled children, and
this will be my 4th c-section which will put me into a very high
risk delivery as my uterine lining was already very thin with my last
c-section.
I had a copper IUD in place at the time of conception. I don't know if there is any connection with our exposure to toxic mold and the IUD becoming ineffective or not. It is not something that I will spend time investigating, but I am throwing that information out there in case anyone else had the same experience.
February 6, 2013
Rachel sees the doctor for cough, congestion, fever, and
vomiting after cough. She is diagnosed with an upper respiratory infection.
February 18, 2013
Spencer goes to doctor with complaints of fatigue, 20 lb.
weight loss in a month, increased urination, increased thirst, decreased
appetite, and abdominal pain. He is diagnosed with Type I diabetes and is taken
by ambulance to Primary Children’s Hospital for a 4 day hospital stay.
February 20, 2013
Larry is called at work to come pick Ben up from school
because he is not feeling well.
February 25, 2013
Enoch is seen by the clinic for a concussion in a skiing
accident. He also reports having had a deep cough since having the flu a month
ago. He is diagnosed as having allergies which is believed to be causing the
cough.
March 7, 2013
Rachel sees the doctor for cough, head congestion, ear pain,
and chest congestion. Her respiratory and cardiovascular seem to be ok and she
is put on an antibiotic for an ear infection.
March 12, 2013
We take our three youngest children (Ben, Bekah, &
Rachel) to their three year visit to John’s Hopkins
hospital in Baltimore Maryland for an evaluation with the rare
disease that they have, ataxia-telangiectasia (A-T). We are so relieved to learn
that overall the twins are doing incredibly well (in fact, they labeled them as
being in the top 5% of A-T children that they have seen from all over the
world) for their age and diagnosis. It is confirmed that Rachel too has A-T at
this appointment.
While at this appointment they are very concerned about our
children’s coughs that they have recently come down with, especially Rebekah
and Rachel’s coughs and we are given studies and an education on lung disease
and how children with A-T die from this condition. They send us home with a
prescription for a very strong antibiotic for Rebekah & Rachel and ask us
to please follow up with our local doctor as this is a potential life
threatening situation for our children.
March 28, 2013
We e-mail the people that we have a rent-to-own contract with and let them know that our intent
is to still close by the end of May. Our income looks good and we are just
waiting to receive an offer on an investment property that we own. We are told by our landlords that if we do not close by the end of May they will be raising the price on the property.
April 4, 2013
We are devastated to come to the realization that we will
probably not meet the May 31, 2013 deadline to purchase the property because the
offer that we thought we were going to get on our investment property falls through. As we are unable to
pay more for the property, we notify them in writing to opt out of our purchase
option.
April 9, 2013
Rachel goes to the doctor for coughing and congestion that
has been going on for 6+ weeks. She is having coughing episodes 3-4 times per
day that sometimes lead her to vomit and the other night she was coughing so
extensively that her face was starting to turn blue. She is diagnosed and
treated for seasonal rhinitis and cough. John’s Hopkins Hospital
is contacted to see if they have any further recommendations. If breathing
problems return we are instructed to return to the clinic/ER asap.
April 22, 2013
Larry has his first pancreatic attack. He toughs it out for
3 days thinking it is gas pain.
May 7, 2013
Larry woke up at 2 a.m. because of excruciating abdominal
pain. Finally went to the clinic in the afternoon for an appointment. Larry is
nauseous and the pain is causing shallow breathing. Larry is hospitalized for three
days and diagnosed with acute pancreatitis.
Pancreatitis is an inflammation of the pancreas and requires
immediate medical attention. 80% of pancreatic attacks are caused by alcoholism
or gall stones, neither of which applies in our situation. Recurring pancreatic
attacks can lead to death (because of damage done to the pancreas and the need
to remove portions of it), diabetes, or cancer. It is at this time that we
learn that Larry’s grandmother died of pancreatic cancer at the age of 49.
Larry is 46. Cancer is ruled out at this time, but could be in the future if
these attacks continue to reoccur.
We start to question if there is something in the house that
is making us sick?????? We start to wonder if maybe there is a reason why we
have not been able to purchase the property??????
May 10, 2013
We have basic water tests run (Total Coliform and
Escherichia Coli) from four different sources in the house (our shower, laundry
room sink, upstairs bathroom sink, and the kitchen sink). All of the tests come
back normal except for the Total Coliform test taken from the kitchen sink. The
sample did contain total coliform which indicates an increased probability of
disease causing organisms being in the sample. The sample did not meet the
specification for potable water as established by EPA. We contacted the public
health department and were told that because the kitchen sink was the only
water source with a problem that it was most likely the aerator in that sink
causing the problems. We took the aerator off and boiled it and swabbed it with
a chlorine solution. After talking to our landlords we learned that the water
testing they had done in the past had come back very good and their well was
200+ feet deep so we turned away from water contamination possibilities even
though there are several other tests that could still be run.
May 15, 2013
I wake up in the middle of the night and the thought comes
into my mind that it is the birds in the roof causing us problems! Birds in the
roof, what do they have to do with anything???? I had never really paid much
attention to them flying into the roof until I had that thought. I spent the
whole night researching diseases caused by birds. I read about how “airborne
spores from drying feces in air ducts and vents can settle on exposed food and
transfer diseases.” Another interesting fact that I learned was that bird feces
if microscopic pieces break off and become airborne they can contain dormant
fungi and/or bacteria. When breathed into the lungs, the warm, moist
environment of the lung lining provides a breeding ground for the infectious
agents. These type of infections can also cause coughing, restricted breathing,
and general body fatigue.
I also read that in rare cases infectious agents, such as
candida, can cause pancreatitis through bird droppings.
May 16, 2013
I call our landlord and express my concerns about the birds flying
into the roof and causing possible problems. I briefly share with her the
severe health problems that our family has been through since moving into their
house. She dismisses our health problems as just a trial that our family is
going through and is very adamant that it has nothing to do with their house.
There is not even a commitment or offer to come and look at and/or fix the
problems with the holes in the roof. This is very frustrating to us as we have
tried to be good tenants always paying our rent early and taking care of the
property. This is the first time we have contacted them about any concerns with
the house and we are quickly shot down even though having a holy/leaking roof
is a huge problem that should not be ignored by any landlord.
May 17, 2013
I spend most of my day on the phone with pesticide companies
trying to find out how to have our roof inspected. In the end I learn that they
will do nothing without the Landlords permission.
May 18, 2013
I receive a phone call from the landlords that they are on there way
to Malad to inspect the roof. She is still very adamant that there are no birds
flying into the roof. After a brief inspection from the master bedroom window,
they witness the birds flying into the roof and commit to come back the next
weekend and repair the holes.
While at our house they experience a couple of Rachel’s
coughing/breathing attacks and the landlord comments how she probably needs to be
checked out as it almost sounds like pneumonia. Her sickness is something that
I have been dealing with and trying to get help with for several months now!!!
I also express my concerns again that there is something in
the house that is making us have constant health problems. Once again our landlord is
very adamant that there is nothing in the house causing these problems.
May 20, 2013
Rachel is seen at Primary Children’s hospital for her
continued cough and throwing up mucus. Whooping cough, RSV, and fluid in the
lungs are ruled out. She is diagnosed with a viral infection and sinusitis. We
are given a strong antibiotic and told to contact an ENT doctor if symptoms do
not clear up in a week or so.
I start to research other possible causes of chronic and
even life threatening sickness that we have experienced as a family since
moving to our new home. I research everything from formaldehyde, to radon, and
finally molds. The one that seems to be the most fitting for what we are going
through is toxic mold. Even though we have not visibly found the mold (we also
have not looked very hard) we have several of the highest risks factors in our
house for mold—leaking roof, wallpaper, a basement, and an unvented bathroom.
We order an ERMI mold kit to test for what mold species are present in the home.
May 22, 2013
Jill sees doctor for sore throat and nasal congestion. Strep
test comes back negative. Diagnosed with allergies.
May 23, 2013
Thanks to some very generous family members who were willing
to watch our children, we are finally able to get away for a few days for our
anniversary. We have a wonderful time. One of the things that we discussed
while away was our concerns with all of the sickness that our family had
experienced while living at our new house, especially with a newborn on the
way.
After reading about how infants can experience pulmonary homorraging
and die from repeated exposure to mold we decide that this is not something that
we can even take a chance with. This information coupled with the high risks
for all of our A-T children and our whole family for that matter, we make the
decision to move before our baby is born in mid July.
May 25, 2013
Our landlord returns to patch the holes in the roof. While there he comments that the roof
really needs to be replaced.
Jill wakes up with half of her face numb. By the afternoon
her eye is going blurry. As we are on vacation, we go to an instacare clinic in
Utah County on our way back to pick up our
children. Stroke is ruled out and I am diagnosed with Bell’s Palsy and put on
an anti-viral medication and a steroid. The next couple of weeks are very
challenging as I have to now take medication that is always a risk when you are
pregnant, I have a hard time eating and seeing out of the one side of my face,
and I have to wear sunglasses and constantly put eye drops in my eye because I
am not making tears and my eye is severely dilated.
We miss being able to visit with our family and get home late
to see our children because once again we are at the doctor.
May 27, 2013
I talk to our tenant who is in the house that we had moved from, who is now on a month to month contract, and ask her if they can please be out by
the end of June.
I call our landlord and inform them of our intent to move out by
July 15th because of our continued health problems.
May 30, 2013
Larry goes to the ER because of an accident at work. He ends
up with 20 stitches in his finger and is very lucky that he missed his tendons
or he would have had to have had surgery.
Right before the accident happened, he reported that he had
a sudden crushing pain in his lungs on the left side. He was hooked up to the
EKG machine and several other heart tests were performed. Luckily, everything
checked out to be ok.
May 31, 2013
Enoch sees the doctor for breathing problems that have been
going on for 4+ months. He has been having a hard time since his last cold in
Jan./Feb. He gets really short of breath, wheezes, gets nauseated, lightheaded
and feels a burning in his chest every time he exercises. He denies problems
with breathing during rest and is short of breath only when he exercises. The
problems of allergic rhinitis and exercise-induced bronchospasm are addressed.
June 4, 2013
My friend, Jen, from Pocatello (a town 45 min. away from where we live)
learns of our situation and offers her furnished, unused basement to us to live in if we need it. I
tell her thank you, but we only have to make it to the end of the month so we
should be ok. I am praying that we make it to the end of the month before we
experience anymore health problems, but I am relieved that we have somewhere to
go if we need to. It is very difficult to find a place to temporarily relocate
with a family of eight.
June 5, 2013
I have known for about a week now, after visiting with other
moms who have been through similar situations as ours, and doing research on
the internet, that if stachybotrus (black mold) spores are found in our house
that the only way to get better is to literally leave everything behind and
start a new life. The spores get into everything and they are so dangerous. The
only way to get rid of them is with 500 degree+ heat. If we were to move out
and take our possessions with us we would cross contaminate our new home and
bring the problem with us.
I call the insurance company that we have our renter’s
insurance through and am devastated to learn that we are only covered for water
damage or fire and they have completely washed their hands of any mold issues,
even though they know that black mold is just as destructive to possessions as
fire. We are very upset by this news because of the unknown to our future and
the financial debt that we are already drowning in because of all of our
medical bills, time off work, gas bills and specialty items that we are having
to buy because of our situation are starting to pile up.
June 6, 2013
Larry has another pancreatic attack and is admitted to the
hospital for a 3 day stay. We are thinking that we might be taking Jen up on
her offer as we are really starting to believe that there really is something
in our environment triggering these episodes.
The trip that I had planned to Nevada for my niece and nephews graduation
and to visit with my family has to be cancelled. I was really looking forward
to getting away for a few days, but once again I have to take care of my SICK
family.
We also realize at this point that Larry will not be going
on Trek with our older boys scheduled for June 18th as the risks with his
attacks are too high. He and the boys are very disappointed about this.
I call EMSL lab to check when the mold results will be back.
They tell me Tuesday and I beg them to please get them to us ASAP.
June 7, 2013
We receive the mold test results back from EMSL Analytical.
The ERMI Interpretation of mold comes back at a level 3 for moderate to
relative moldiness. Further investigation is needed to determine if sources of
mold exist. Although we are EXTREMELY RELIEVED to learn that the stachybotrus
(black mold) spores are not showing up in the testing, all of the detected
molds in the sample are considered dangerous and toxic, particularly
aspergillus flavus which produces aflatoxins.
Aflatoxin is a type of mycotoxin produced by aspergillus molds.
Aflatoxins are very toxic and highly carcinogenic. When a person takes in a
high amount of aflatoxins in a very short time it can cause a variety of health
problems including disruption of food digestion, hemorrhaging, coma, or death.
June 8, 2013
Larry is released from the hospital and spends the day with
the children at Enoch’s ball games. I frantically work hard gathering up our
belongings so that we can move to Pocatello
and be in a different environment. I am so exhausted by the end of the day (I am now about 8 mos. pregnant) from
washing and packing that I am literally crawling up the stairs and wincing in pain to get
everything we need and get our family to a “safe” place.
June 9, 2013
We all stay home from church and have a much needed day of
REST!
June 12, 2013
Enoch sees doctor for throat pain and runny nose. He is
diagnosed with an upper respiratory infection that appears to be viral.
June 18, 2013
Larry has another pancreatic attack. He takes his pain meds
and we take him to the Portneuf Emergency room where he is once again admitted
to the hospital. By the time we get to the hospital, he is very weak and passes
out while having an IV put in. This really freaked me out as my husband has
always been very strong and I have never seen him so weak before.
The much needed shopping trip that I had planned was put on
the back burner because once again I was taking care of my SICK family.
June 19, 2013
I spent a large portion of the day over at the hospital with
Larry. They are having a hard time finding the cause of his pancreatitis and
are seriously considering taking out his gall bladder. We both highly suspect
that it is possibly mold related. 70% of all pancreatitis is caused by alcohol
which is a toxin. The aflatoxins that are produced by some of the molds
detected in our rental home are also toxins that can build up in your body and
cause all kinds of health problems, including inflammation which is what pancreatitis is--inflammation of the pancreas. Larry is getting headaches from all of the
medicine and is not feeling well and I spend much of the day researching diets
for him to cleanse his body and help him get better.
I had planned on being in Malad today packing up the house,
but once again I am taking care of a family member who is SICK.
End of June 2013
Ben is at his cousins house playing while we are madly trying to get our things moved. I receive a phone call that he has fallen off of his bike and they think he has broken his arm. I meet them at the Emergency room and it is confirmed that his arm is broken. This is the first broken bone that we have ever had with any of our six children.
July 2013
We get moved back into our old house two weeks before our baby is born. Nathanael Joseph joins our family on July 19th and he appears to be healthy (phewww!)
Everyone seems to be doing better--coughs have went away and no more asthma complaints.
August 2013
Larry has his 5th pancreatic attack when Nathan is just 3 weeks old. While in the hospital my very manly husband calls me crying because he has tried talking to the doctor on call about the possibility of his recurring pancreatitis being related to toxic mold and she has essentially called us "idiots"! She is very adamant that he just needs to get his gall bladder out and
that will take care of the problem even though the testing that they
have done shows no signs of gall bladder blockage. I am not very surprised by her reaction as I have tried to tell EVERY
doctor that we have encountered about our "families" experience and our
suspicion that this is related to toxic mold that we moved into. Not ONE took the time to
look at all of my documentation, records and information from doctors in
their own field. We did have one doctor in Pocatello who ran a mold
test that came back negative. I don't believe it was the right kind of
test and I sense that he ran it just to get me to shut-up!
Larry is transported by ambulance to the Ogden Regional Hospital where he stays for 4 days. While there they determine that it is most likely not his gall bladder causing the problem and they fail to give him adequate fluids with the amount of pain killers that they were pumping through him. For reasons unbeknown to us, they send him home still SICK and he ends up back in our local hospital that night on an IV to get all of the junk flushed out of his system.
August 27, 2013
Because
the medical community was not finding any answers as to the cause of
his pancreatites (which is usually caused by alcohol or gall stones), we
felt it was important to do further investigation as to the root of this
problem and we paid $700 out-of-pocket to send in a urine sample to real time labs and have his body tested for mycotoxins which are caused by
certain types of molds. Mycotoxins are some of the most toxic substances
in existence and can wreak havoc on your health.Larry tested positive for tricothecenes, the most toxic mycotoxin there is. Tricothecenes are produced by common species of mold such as aspergillus, penicillium or stachybotrys (black mold) and they can be inhaled or ingested. Our rental home had tested positive for aspergillus and pencillium.
After receiving these test results, I spoke with one of the leading toxocologists in the United States, Dr. Thrasher, whose specialty is toxins and how they affect human health. After reviewing the dust sampling that was taken out of our rental home, Larry's test results, and the types and series of health problems that we experienced while living in the home he
verbally confirmed that our health problems were directly related to our
exposure to toxic mold while living in your home. He also indicated that he wasn't so sure that there was not stachybotrys (black mold) present at the home, but it may not have shown up in the dust test because they are very sticky spores and we may not have gotten them in the sample we took. This opens up the question of whether or not we have severe cross-contamination issues because we chose to move all of our stuff. Grrrrrr!!!
December 28, 2013
Our 4 month break from pancreatitis is short lived and Larry returns to the hospital from another attack after a family Christmas party. He is lying there in the ER in horrific pain and I keep asking the nurse when the doctor is going to be there. He replies that the doctor legally has 30 min. to respond to an ER call. I am thinking where can you go in little old Malad that you couldn't be there in 10 min. or under. The doctor comes walking in 30 min. later and says, "Are you going to listen to me this time? Have you had enough?" At that moment I realized that this was the doctor that had been emotionally abusive to him at our August visit. Larry sat up and said, "Listen lady are you going to help me or am I going to walk out of here?" As calm as I could speak from being so appalled I said, "this is not the time or place for that, please get his pain under control and we will talk about this out in the hall."
The pressures we felt to get his gall bladder out were relentless--work, church, friends and medical workers, but I KNEW that his gall bladder was not the cause of his pancreatitis and still NOONE would look at my folder full of documentation!!!
We were essentially held hostage at the hospital for a week waiting for Larry to be well enough to have his gall bladder taken out. I ask him several times if he wanted to just walk and not have the operation, but he felt SO much pressure that he felt it was something that he had to do. They say that his gall bladder had sludge in it and were certain that they had taken care of the problem. We were both somewhat optimistic that maybe, just maybe this would fix the problem.
March 2, 2014
The day after returning home from our son's state wrestling tournament Larry has another attack and spends another 4 or 5 days in the hospital. After being released, he goes back into the hospital gain because his pain flares up again. We are both VERY DISCOURAGED!
While he is in the hospital, my sister-in-law comes over and we clean out all processed food out of our refrigerator. With each hospital stay I have cleaned up our eating more and more, but it has been a VERY difficult process with a newborn baby and still trying to get settled from our moved.
March 26, 2014
After much experience, research, testing and talking to experts I have come to the following conclusions:
1. We were poisoned by toxic mold.
2. We very likely have a cross-contamination issue that continues to affect us at some level. One of the doctors I spoke with was adamant that we needed to get rid of all of our things, but this seems like such a drastic step to take when there are still so many unanswered questions (what is the ERMI level in our home now) and we are struggling so much financially.
I really liked Dr. Mary Short-Ray's advice to hepa vacuum and wipe down all of our belongings with a mold killing solution, especially the wood, and then buy air filters (available on toxic-mold-syndrome.com website) that should help take most of the mycotoxins out of the air.
3. Larry, and possibly several of us, suffer from "Mold Illness". Many patients “don’t look that bad.” But those people are struggling with an illness that causes them to lose their quality of life. These patients don’t know that they have a genetic susceptibility to develop this illness based on their immune response genes (HLA–DR). They don’t know that the inflammation that makes them ill comes from within: it is due to an assault by their own unregulated innate immune system responses. Because of exposure to the interior environment of a water-damaged building, these patients will have a series of abnormalities in innate immune responses that will not self heal; will not abate in severity [actually increase!] and will continue to cause illness from blood- and tissue- based inflammation as well as alteration of the regulation of fundamental genomic activity. At the core of why one person becomes ill from this exposure and another doesn’t is their gene susceptibility (or predisposition) – what is built into their DNA. Every person’s innate immune system is personal and genetically coded – thus, it works differently for each of us. When the body is faced with a foreign substance, it immediately begins to process that substance – recognize it, determine if it is good or bad, a friend or a foe, and throw it into the antigen presenting machinery that will normally generate an effective antibody response. If the body determines the substance is a foe, it will develop antibodies to bind these substances, called antigens. Normally the next time a non-mold susceptible person walks into a WDB, his antibodies will target the antigen and clear it out fast. That protection from so-called acquired immune responses just doesn’t happen in mold patients.
The genetics are clear: occurrence of specific HLA types are found in about 25% of the population. It is in these people that we find the sickened ones almost always (nothing is 100% in biology). In these people, the antigens stay in the body, and our own defenses bombard our body in response to those antigens. What you now have is a person who is defenseless against new exposures and is suffering daily from inflammation.
It is a vicious cycle – the foreign antigens (substances) stay in the body, causing the immune system to constantly fight back. This causes so much inflammation in the body that it leads to chronic illness, and the occurrence of many symptoms. Our entire being suffers from friendly fire from our own innate immune system."--Dr. Shoemaker
4. The most critical thing that we need to start doing immediately is to get on binders (see toxic-mold-syndrome.com). These pull the toxins out of your body and from what I've been told things may get worse before they get better. I've been told that the average healing time is 8 mos. to a year.
5. We have got to practice clean eating continually and specifically nourish the pancreas and digestive tract. to avoid future pancreatic attacks. The most helpful cookbook I have found to cook from is called "Nourishing Traditions" by Sally Fallon. I HIGHLY recommend this book. At some point we may go on the "mold killing diet".
6. We are not going to get the help for toxic mold exposure that we need from the mainstream medical community. We will have to go to an environmental MD that specializes in mold poisoning. There are only a handful of them in the United States and they are very hard to get into. Larry has an appointment with Dr. Janette Hope MD and mold survivor in Santa Barbara CA at the end of April.
Ideally we would all be able to visit Dr. Hope, but with our shortage of finances Larry has to be the priority.
Some of us continue to have sinus issues, vision problems, and brain fog.
December 28, 2013
Our 4 month break from pancreatitis is short lived and Larry returns to the hospital from another attack after a family Christmas party. He is lying there in the ER in horrific pain and I keep asking the nurse when the doctor is going to be there. He replies that the doctor legally has 30 min. to respond to an ER call. I am thinking where can you go in little old Malad that you couldn't be there in 10 min. or under. The doctor comes walking in 30 min. later and says, "Are you going to listen to me this time? Have you had enough?" At that moment I realized that this was the doctor that had been emotionally abusive to him at our August visit. Larry sat up and said, "Listen lady are you going to help me or am I going to walk out of here?" As calm as I could speak from being so appalled I said, "this is not the time or place for that, please get his pain under control and we will talk about this out in the hall."
The pressures we felt to get his gall bladder out were relentless--work, church, friends and medical workers, but I KNEW that his gall bladder was not the cause of his pancreatitis and still NOONE would look at my folder full of documentation!!!
We were essentially held hostage at the hospital for a week waiting for Larry to be well enough to have his gall bladder taken out. I ask him several times if he wanted to just walk and not have the operation, but he felt SO much pressure that he felt it was something that he had to do. They say that his gall bladder had sludge in it and were certain that they had taken care of the problem. We were both somewhat optimistic that maybe, just maybe this would fix the problem.
March 2, 2014
The day after returning home from our son's state wrestling tournament Larry has another attack and spends another 4 or 5 days in the hospital. After being released, he goes back into the hospital gain because his pain flares up again. We are both VERY DISCOURAGED!
While he is in the hospital, my sister-in-law comes over and we clean out all processed food out of our refrigerator. With each hospital stay I have cleaned up our eating more and more, but it has been a VERY difficult process with a newborn baby and still trying to get settled from our moved.
March 26, 2014
After much experience, research, testing and talking to experts I have come to the following conclusions:
1. We were poisoned by toxic mold.
2. We very likely have a cross-contamination issue that continues to affect us at some level. One of the doctors I spoke with was adamant that we needed to get rid of all of our things, but this seems like such a drastic step to take when there are still so many unanswered questions (what is the ERMI level in our home now) and we are struggling so much financially.
I really liked Dr. Mary Short-Ray's advice to hepa vacuum and wipe down all of our belongings with a mold killing solution, especially the wood, and then buy air filters (available on toxic-mold-syndrome.com website) that should help take most of the mycotoxins out of the air.
3. Larry, and possibly several of us, suffer from "Mold Illness". Many patients “don’t look that bad.” But those people are struggling with an illness that causes them to lose their quality of life. These patients don’t know that they have a genetic susceptibility to develop this illness based on their immune response genes (HLA–DR). They don’t know that the inflammation that makes them ill comes from within: it is due to an assault by their own unregulated innate immune system responses. Because of exposure to the interior environment of a water-damaged building, these patients will have a series of abnormalities in innate immune responses that will not self heal; will not abate in severity [actually increase!] and will continue to cause illness from blood- and tissue- based inflammation as well as alteration of the regulation of fundamental genomic activity. At the core of why one person becomes ill from this exposure and another doesn’t is their gene susceptibility (or predisposition) – what is built into their DNA. Every person’s innate immune system is personal and genetically coded – thus, it works differently for each of us. When the body is faced with a foreign substance, it immediately begins to process that substance – recognize it, determine if it is good or bad, a friend or a foe, and throw it into the antigen presenting machinery that will normally generate an effective antibody response. If the body determines the substance is a foe, it will develop antibodies to bind these substances, called antigens. Normally the next time a non-mold susceptible person walks into a WDB, his antibodies will target the antigen and clear it out fast. That protection from so-called acquired immune responses just doesn’t happen in mold patients.
The genetics are clear: occurrence of specific HLA types are found in about 25% of the population. It is in these people that we find the sickened ones almost always (nothing is 100% in biology). In these people, the antigens stay in the body, and our own defenses bombard our body in response to those antigens. What you now have is a person who is defenseless against new exposures and is suffering daily from inflammation.
It is a vicious cycle – the foreign antigens (substances) stay in the body, causing the immune system to constantly fight back. This causes so much inflammation in the body that it leads to chronic illness, and the occurrence of many symptoms. Our entire being suffers from friendly fire from our own innate immune system."--Dr. Shoemaker
4. The most critical thing that we need to start doing immediately is to get on binders (see toxic-mold-syndrome.com). These pull the toxins out of your body and from what I've been told things may get worse before they get better. I've been told that the average healing time is 8 mos. to a year.
5. We have got to practice clean eating continually and specifically nourish the pancreas and digestive tract. to avoid future pancreatic attacks. The most helpful cookbook I have found to cook from is called "Nourishing Traditions" by Sally Fallon. I HIGHLY recommend this book. At some point we may go on the "mold killing diet".
6. We are not going to get the help for toxic mold exposure that we need from the mainstream medical community. We will have to go to an environmental MD that specializes in mold poisoning. There are only a handful of them in the United States and they are very hard to get into. Larry has an appointment with Dr. Janette Hope MD and mold survivor in Santa Barbara CA at the end of April.
Ideally we would all be able to visit Dr. Hope, but with our shortage of finances Larry has to be the priority.
Some of us continue to have sinus issues, vision problems, and brain fog.
7. Our whole family needs to be taking the herbal supplement, protandim (see abcliveit.com for more info.). Protandim has been clinically proven to reduce oxidative stress by an average of 40% after only 30 days. Oxidative stress is a huge component of damage done by toxic molds (see scientific article by Dr. Janette Hope at http://www.hindawi.com/journals/tswj/2013/767482). Some of the members of our family that fared the best through our mold exposure were religiously on protandim because of other medical conditions that they had. I regret not having them on it sooner.
8. This experience may cost us our livelihood. We own the local feed store and grainery and my husband is constantly working in grain dust that is full of mycotoxins. For now he will wear a mask.
Tests We Have Had Done
1. ERMI (emsl.com) about $300 This is the test we did at our rental house to confirm the presence of toxic molds.
ERMI is the Environmental Relative Moldiness Index – the combination of EPA research, powerful PCR technology, and a new method to screen homes for mold.
The ERMI test involves the analysis of a single sample of dust from a home. The sample is analyzed using mold-specific quantitative polymerase chain reaction (MSQPCR), a highly specific DNA-based method for quantifying mold species. A simple algorithm is used to calculate a ratio of water damage-related species to common indoor molds and the resulting score is called the Environmental Relative Moldiness Index or ERMI.
2. ehaplabs.com this lab tests for symptoms of mold exposure and mold sickness in the human body. The mycotoxin test that we had done was about $700. You can submit this testing to insurance as long as you have them include the appropriate codes.
If your doctor is willing they can sign up with Real Time Labs and order the tests for you through the doctors office. If they do this and you do a repeat tests it is only $200 instead of $700. The lab has a structure in place to train open minded doctors to treat this condition.
3. Visual Contrast Sensitivity (VCS)--available to take at survivingmold.com
Pricing:
1 Test: $15
4 Tests: $40
10 Tests: $75
50 Tests: $250
The VCS APTitude is designed to help identify contrast vision loss from exposure to a variety of environmental sources of illnesses.
I was very skeptical about this test until some of our family had taken it and I have received the thumbs up from the doctors that I have visited with. I really expected most of our family to fail it, except for Dallin, who never seemed to have any toxic mold illness. So far our results are as follows:
2. Jill--failed both
3. Enoch--failed both
4. Dallin--passed both!
This test is designed so that as you start to heal and get the toxins out of your body, your vision will improve! This gives us a fairly inexpensive way to track progress for our whole family.
If you have an unexplained illness, you should consider toxic mold poisoning! To learn more go to the references below:
Other Recommended Links, Websites, & Books
1. www.toxic-black-mold-syndrome.com This is Dr. Mary Beth Short Ray M.S., D.O.'s website. She is the author of "Surviving Toxic Black Mold Syndrome" which I highly recommend. This book was specifically written for doctors. She is a doctor who has been through toxic mold poisoning.
Dr. Mary Ray also does phone consultations for $50 per half hour. I have had a couple of them with her and found them to be well worth the money. Most environmental drs. charge anywhere from $250--$500/hr.
2. momsaware.org This is Andre Fabre's website. This is the website that I originally came to when I started learning about toxic mold. They had 9 children and left everything behind because they were so sick and had been exposed to toxic black mold for several years. She has been a good friend through this whole experience. I would encourage you to read their story and spend time looking at her website. She has some EXCELLENT info. on there.
3. Following is a link to a medical journal article written by Dr. Janette Hope, President of the American Academy of Environmental Medicine. This is an excellent well documented article that is at least worth skimming through. http://www.hindawi.com/journals/tswj/2013/767482/
4. sponauglewellness.com
This is a detox center in Clearwater, Florida that was recommended to me by Dr. Baker, from Pocatello, who also went through toxic mold poisoning. There are some very interesting testimonials on this website, but they don't show any pricing which makes me a little nervous.
5. ehcd.com
This is the Environmental Health Center in Dallis, TX where Dr. Baker also suggested that we go after going to Dr. Sponagle in Florida. Dr. Mary Ray also recommended that we go here and visit Dr. William Rea. There protocol looks very promising. Again, just wondering how much they charge???
6. survivingmold.com. This is Dr. Richie Shoemaker's website. He is one of the leading doctors in treating toxic mold illness. This website contains a wealth of information.
7. Jack D. Thrasher, PhD (thrasher.org) is an immunotoxicologist who has assisted hundreds of individuals injured by toxic chemicals and molds. Dr. Thrasher has been a consultant and expert witness for cases involving environmental toxicology and immunotoxicology. He has been very helpful to us in putting togetther all of the puzzle pieces.
8. Mold: The War Within by Kurt & Lee Ann Billings--Lessons Learned from Katrina
This is just the tip of the iceberg of everything that I have learned over the past 10 months. I would love to hear your experiences and feedback after reading this. In the meantime, I am going to keep putting one foot in front of the other and FOCUS ON HEALING!
