My name is Tani. My 26 year old daughter Rose was a healthy, normal girl until things started to change when she was fourteen years old. Currently she is only 66 pounds (at 5'5") and we are trying to raise money for a new tube feeding formula called Liquid Hope and treatments with an Integrative medical doctor that we feel will improve her health greatly. Please read Rose's whole story below to find out how things got to where they are and to understand the complete picture of the situation.
It started with heartburn and then acid reflux, which led to
food coming up to the point that within a couple of years, nothing
would stay down. She couldn’t even make it to the bathroom when she
had to throw up, so she kept a bucket with her and wouldn’t eat during
the day, just so she could go to school.
During this
time, she was of course losing weight and we took her to various
doctors and specialists where she had numerous medical tests, which
showed nothing was physically wrong with her. She was labelled as a
bulimic/anorexic, even though I explained that she wasn’t vomiting on
purpose. An anorexic or bulimic hides her illness and does not walk
around with a bucket and throw up in front of her family. The doctors
wouldn’t believe me.
It was while I was studying for
a medical terminology course that I came across the term,
“Gastroparesis,” which means paralyzed stomach. I had never heard of
this condition before so I did some research and discovered that the
symptoms were exactly what Rose had. I convinced a specialist to test
her for it and even told him what type of test she needed, which was a
nuclear medicine stomach emptying test. The test came back positive
for severe gastroparesis, but no one could tell us what had caused
it. They labelled it as “idiopathic,” or no known cause, and told us
her stomach was pretty much useless and all there was to do was just
monitor her blood levels and gave us no advice or help besides weekly
blood tests.
Rose managed to barely graduate from
high school, but of course college and all her other dreams were out
of the question. Her weight plummeted as low as 71 pounds during high
school (at 5’ 5” tall) and none of the specialists we saw knew much
about gastroparesis, let alone how to treat it, and didn't seem to
take it seriously. In recent months her weight has dropped down as low
as 62 pounds and she is currently only 66 pounds.
I continued my research and found out about an Enterra therapy
gastric electrical stimulator that was being used to treat
gastroparesis successfully for several years in the US, but in Canada
was only implanted by a couple of surgeons for patients with
diabetes.
I narrowed down a surgeon in Montreal and
convinced him to implant one of these devices in my daughter and in
February 2009 we made the trip and were there for one month. The
surgeon also implanted a feeding tube at the same time, which helped
her to slowly gain and she eventually got up to 95 pounds.
After almost two years of trying different settings on the
device and even making a trip to Mississippi to see the foremost
doctor in this type of therapy, where Rose saw him daily for a month,
she turned out to be one of the 5% of gastroparesis patients that this
device didn’t help and so we had to have it removed. We couldn’t find
a surgeon in BC that would remove it, so we had to travel to Calgary,
Alberta for the surgery. Now we were back to square one and didn’t
know what to do next. In the meantime, now that Rose wasn’t eating at
all and relying solely on tube feeding, she couldn’t even digest her
own stomach acid and would throw up a litre or two of it a day, which
led to her needing 23 crowns and 19 root canals and several
abscesses. After all that pain and suffering, she ended up having to
have all her teeth pulled in 2012 at the age of 23 and now has full
dentures.
Of course I continued my research and came
across an online support group for gastroparesis and through that
found out about several people who had total gastrectomies and were
able to eat again, even though it was small amounts throughout the day
and certain foods had to be avoided. We looked into this very
thoroughly because removing your stomach is not to be taken lightly.
Once we decided that this was our only real option, we needed to find
a surgeon.
It turned out that none of the GI surgeons
in BC were willing to do the surgery on a patient with gastroparesis,
so we began to look outside of our province and once again had to go
to Calgary.
Rose had the surgery and after a month of
horrible complications and infections we came home. It has been
almost three years now and unfortunately Rose is still unable to eat
and still tube feeds for nutrition.
It turns out that
the surgeon who removed her stomach left an 8 cm pouch of stomach
because it is stronger than attaching the esophagus directly to the
intestine. Unfortunately that small pouch of stomach still has
gastroparesis and that is why she is unable to eat. Because Rose is
so frail right now there is no way that she could survive another
surgery to remove the last portion of her stomach, but we are hoping
that in the future it will be an option.
Now I must go
back five years ago to when Rose dug a tick head out of her leg while
we were sitting outside on our deck. She first noticed the lump on
her thigh when she was about fifteen. It was a small lump and because
she had another small lump in her arm (still has it) and the doctor
told her it was just a calcium build up she thought that was what the
one on her leg was. As the years went by it got itchy and closer to
the surface and looked kind of dark. She started to pick at it over
the period of a couple of weeks. She saw white at the surface, but
could see something dark underneath. So finally one day got the
tweezers and picked out a hard white thing (probably a calcium build
up) and discovered something dark and squishy underneath. We
immediately thought it might be a tick and went inside and did an
image search of ticks and tick heads, knowing that sometimes when you
get bitten by a tick the body will get knocked off, but the head stays
inside. Sure enough the thing she picked out her leg looked exactly
like the images we saw. We had heard of Lyme disease, but didn't know
much about it, so I did some research and discovered that Lyme disease
can cause digestive issues including gastroparesis! We went to our
doctor and asked if Rose could be tested and she had the standard
Canadian test (the ELIZA, which we have since found out is not very
accurate and most often comes back with false negative results.)
It came back negative, so we moved on and continued to explore other
possibilities
About a year ago a friend of ours was
diagnosed with Lyme disease by a lab in California. This particular
lab specializes in state of the art research and clinical testing for
Lyme disease and associate tick-borne diseases. We sent away for a
test kit, had the test done and the results came back 100% positive
for Lyme disease, not only by the lab’s standards, but by the US
Center of Disease Control standards, which is very rare.
There is no doubt that Rose has been suffering from Lyme
disease since she was fourteen years old and through my research I
have found out that Lyme disease can attack the entire digestive
system and cause among other things, not only gastroparesis, but also
malabsorption.
Looking back and trying to figure out
when Rose might have been bitten by that tick, we remembered that back
when she was fourteen, we lived in an area known for deer ticks and
she used to cut through a grassy, wooded property when walking to her
friend’s house. It was shortly after that time that her symptoms
began to appear.
Lyme disease is easily treated with a
3 week course of antibiotics if caught in the very early stages, but
when a person has been sick as long as Rose, treatment can take months
or even years. Unfortunately here in Canada Lyme disease is very
controversial and doctors do not recognize or treat it, so most people
have to seek treatment in other countries, which is very expensive.
There are some alternative therapies available here in Canada, but
just like the treatment out of country they are not covered by our
health care and can end up costing many thousands of dollars. A
friend told me about “crowdfunding” so I decided to give it a try and
amazingly raised $23,000!! Now we had money, but had to decide the
best treatment facility to go with.
After extensive
research we chose a clinic in Mexico just south of Tijuana and were on
our way there within a month. Between the team of doctors and
specialists, both from Mexico and the U.S., their high tech labs,
state of the art equipment and unlimited restrictions to treat her,
all of the doctors concur that Rose was in much worse shape than we
were led to believe in Canada.
After not being
properly diagnosed or treated for 12 years, many of her body’s systems
had reached dangerously low levels. Every day they all worked together
to address each of these life threatening issues one step at a time.
The doctors had a clear picture of what needed to be done in order to
kill the Lyme and the co-infections and boost all of her body systems,
too numerous to mention. We arrived back home in Canada after 15
weeks, although we would have liked to have stayed a few more weeks at
the clinic in Mexico for another very important treatment therapy
which I will explain, but we had run out of money. As a matter of
fact, the clinic was letting us stay and continue treatment on credit
for 5 weeks and so at that time we owed them $25,000.
Rose had many different state of the art medical treatments while in
Mexico, including 350 million stem cells, some of which that were
directly implanted into her spinal column and small intestine,
anti-infection Lyme program, natural killer cell therapy, gc MAF,
neuropeptide therapy, bio magnetic therapy, as well as daily
nutritional IV's etc. Rose also had many, many tests done in Mexico
including, MRI's, a spinal tap, an endoscopy, etc, she also had weekly
blood tests and her daily IV’s would be adjusted accordingly based on
the results. There were two tests that did show some abnormalities,
one of which was a genetic diagnosis test that tests for 180 genetic
mutations. Rose has 46 genetic mutations that were present, while not
all of them are activated. There was a treatment available and the
clinic in Mexico was ready to go ahead with it, but we already owed
them $25,000 and it would be another $15,000 for the new treatment.
So once again we launched a crowdfunding campaign and raised more
money and we headed back to Mexico for 2 weeks.
The
doctors in Mexico think Rose’s Lyme disease is gone and she will be
getting retested by the premier lab for Lyme disease testing in the
next few weeks. In spite of this, twelve years of untreated Lyme
disease has taken a major toll on her and she needs all the help she
can get to rebuild her taxed body.
Rose has been tube
feeding since 2009 with commercial formulas and we have never felt
very good about it because the main ingredient in all of them is
maltodextrin and the rest of the ingredients are refined and/or
synthetic. I just recently found out about a whole, REAL food tube
feeding formula made in the US that ships to Canada. Please go to
their website and read about it: http://functionalformularies.com/#sthash.X5AUi5WZ.... be
sure to read the story of how and why the formula was developed.
Of course we wanted to get Rose going on this
formula immediately, but tube feeding formulas are very expensive. The
one she was using costs about $1000 a month, and is covered by the
provincial government, whereas this amazing whole food formula is
not.
We are about to embark on a fight to have the
government cover this new one, but it could take some time to
do because it is from the US and not on the list of covered formulas
in British Columbia.
We have fought the government
before and we have won! We were the first to ever have our provincial
medical plan cover treatment at the gastroparesis clinic at the
University of Mississippi hospital and also to cover the cost of
having Rose's gastric electrical stimulator surgically implanted in
Montreal! I am hopeful we can win this fight too! The new formula
costs approximately $1300 a month, including shipping.
Rose is on disability and only receives $900 a month, so there is no
way she can afford to pay for her own formula. I am working very
limited hours because of my own health condition (Multiple Sclerosis)
and we have no savings to dip into. My husband is working, but we live
paycheque to paycheque. While we are battling to have the cost of
this formula covered, we wanted to get her started on this potentially
lifesaving whole food formula asap and so another crowdfunding
campaign was launched! We raised enough money to order a three month
supply of Liquid Hope and Rose began the slow process of transitioning
to the new formula.
The good news is that since Rose
started on Liquid Hope her blood test results have really improved!
For example, her hemoglobin, iron, albumen, magnesium, kidney function
and phosphorus levels are the best they have been in years and she has
only just increased to three servings a day. She has also gained 3
pounds! Can you imagine the improvement when she is up to the full 4
servings a day??!!
The bad news is that so far we
haven't heard anything back on whether disability is going to cover
the cost of the new formula and we only have enough funds to order a
few more cases. It could take months to get the approval and so we
really need your help!!
In addition to raising money for Liquid Hope we are also want to take Rose to an Integrative medical doctor in Vancouver who comes highly recommended. Several months ago Rose saw an endocrinologist and had extensive hormone testing as well as a bone density scan. It was suspected that her hormone levels would be totally out of whack due to her extremely low body weight for so many years and considering she hasn’t menstruated since she was 14 years old. It turns out that some of her hormone levels are so low they can’t even be measured on the blood tests! Rose also has the lowest bone density that the endocrinologist has ever seen which means she has severe osteoporosis. Because Rose is so young, the endocrinologist did not feel comfortable putting her on synthetic hormones and suggested bio-identical hormone replacement therapy (BHRT) instead, but explained that the treatment is not covered by MSP and is very expensive. Here is a brief description of what BHRT is:
The term “bio-identical hormones” was coined to describe a hormone that is the exact same molecular structure as the hormone naturally produced by your body. It is “Mother Nature’s” design as opposed to the synthetic hormones created by pharmaceutical companies. A bio-identical hormone may be synthesized in a lab, but care is taken to create a molecule that is identical in structure to the natural form of the hormone. Substrates such as soy or wild yam are used because they happen to contain substances that are easily changed into the desired bio-identical structures.
The integrative MD that we want Rose to see is an expert in BHRT as
well as many other therapies that could benefit Rose as she tries to
rebuild her health and we want to be able to go ahead and try
everything she believes could help. This of course could be very
expensive.
Our goal is set at $8,000. Please donate
what you can and help us make 2015 the year that things finally turn
around for Rose!!
Time is of the essence. This is literally a matter of life and death.
Below is a comparison of the formula the government
will pay for that Rose was using since 2009 and Liquid Hope. After
looking at the difference in the ingredients of both, I think it will
be pretty obvious why she NEEDS to switch permanently to Liquid Hope.
Liquid Hope ingredients:
Filtered
water, organic garbanzo beans, organic green peas, organic carrots,
organic whole grain brown rice, organic whole grain rice protein,
organic flax oil, organic sprouted quinoa, organic sweet potato,
organic broccoli, organic almond butter, organic kale, organic garlic,
organic turmeric, organic rosemary, organic ginger, organic wakame
(seaweed), vitamin blend and mineral blend (all natural for high
absorption)
Peptamin AF ingredients:
Water, Maltodextrin, Enzymatically Hydrolyzed Whey Protein (from
Milk), Medium Chain Triglycerides (from Coconut and/or Palm Kernel
Oil), and less than 2% of Cornstarch, Refined Fish Oil (Anchovy,
Sardine), Soybean Oil, Fructooligosaccharides (Soluble Fiber), Soy
Lecithin, Inulin (Soluble Fiber From Chicory) vitamin and mineral
blend (mostly synthetic)
