"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ”-Kahlil Gibran
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Life with Morgellons Disease
Imagine living with constant crawling, itching and biting sensations.
Imagine having skin lesions, some small and superficial, others deep non-healing wounds, which break out all over your body and extrude strange, unidentifiable fibers.
Imagine that you have experienced such cognitive and neurological decline that you are no longer able to work.
Imagine that several of your family members have come down with the same symptoms.
Imagine that you are afraid to visit your friends, hug your children, sleep with your spouse because you are concerned about spreading this disease.
Imagine watching your children suffer from a disease that is not recognizedand has no known cure.
Imagine going to your doctor for help and being told that your symptoms are purely psychosomatic.
Imagine feeling so physically ill, and feeling so completely alone and abandoned by medicine...
This is the reality for thousands of Morgellons disease sufferers.
Here are some accounts written by people who have been affected by Morgellons disease:
Robert, New York
I have heard about your Morgellons Research Foundation from a TV program on CNN. I think my son Robert had the symptoms of Morgellons.
My son Robert was born December.
He moved to Sullivan County, New York State and began his life. He bought an abandoned church
in Mountaindale, New York and began his career as an artist and sculptor. He developed Lyme Disease.
At that time no one in this area knew much about it and it was sometime before he was treated with
intravenous antibiotics. His symptoms disappeared and his health appeared normal.
About this time, he began noticing small particles moving under his skin through his hands and fingers. The particles were forcing themselves through his skin on his nose, fingertips and laterall over his hands. He began to notice the particles in other parts of his body (chest, nose, ears). The pressure of these splinters were extremely painful.He could not perform his duties and was forced to resign his position. He decided to alleviate the pressure by softening his skin. He used many creams, covered his hands with tight plastic surgical gloves but nothing helped. He had biopsies on his skin in the chest area. Thankful all were negative for cancer. He decided to soak in warm pressurized water. He purchased and he installed a Jacuzzi tub in his bathroom. He spent hours in the water and the rushing water pressure softens his skin and literally millions of these splinters came out of his body. He captured some of them with a tweezers and began looking at them through a very professional microscope. He took pictures of the splinters and he put them in his computer. He tried to show them to the doctors but not one would look at the photos. They thought his problems were mental and prescribed anti-depressants to help him. Needless to say, they did not. He was very discouraged. He did not know anyone else with this condition. The splinters were like strings piercing his skin. He thought he would die.
I do not think it necessary to tell you about the depression and anxiety this caused him and his parents. Robert committed suicide on August 14, 2006 the day we heard of the research foundation.
Cristina, New York
Carol, New York
I have Morgellons disease and it has changed who I am and how I live in every way.
At one time, I negotiated multi-million dollar contracts. Now I can barely balance a check book.
At one time, I was an editor and managed employee communications for a Fortune 100 company.
Today, writing a simple statement, such as this one, takes days. Not long ago, I was an active
member of my community… president of our middle school PTO, board member of several organizations.
I planned and organized large scale events and successful fundraising campaigns.
Now I consider it a good day if I’m out of bed by noon. I used to taxi our boys and their friends
to scouts, sporting event, movies and other activities. I can no longer drive a car.
For many years our home was the gathering place for friends and family in every season.
When the Morgellons symptoms began, I felt compelled to limit my exposure to others.
I sequestered myself away in fear of passing on this horrific disease. I stopped sleeping with
my wonderful husband. I stopped hugging and kissing my beloved children.
Our eroded finances have changed retirement plans for my hard-working husband and educational opportunities for our children. I planned on going back to work a few years ago when my boys entered middle school. I expected to help pay the tuition for my sons’ college education. Last year, my eldest son bypassed his first-choice college and a $40,000 scholarship in favor of helping us by living at home, assuming a student college loan and attending a local college. Last year, my medical expenses (including doctor’s fees, lab and pathology tests, prescription drugs, and medically prescribed supplements) exceeded $35,000 of which $16,000 was not covered by our medical insurance.
Less than a year ago, I had become so desperate and sick I was certain I would not live to see my next birthday. After years and countless frustrating and humiliating doctor visits, I finally got some help. A psychiatrist told me he believed I had a Lyme-like disease. Furthermore, he said he had been contacted by a local dermatologist looking for his take on patients coming to him with Morgellons symptoms. We contacted a Lyme-literate doctor in our area with experience treating Morgellons disease patients. In April 2006, I began treatment and have made substantial progress. We actually celebrated Thanksgiving and Christmas at home this year.Wendy, California
I have been suffering with Morgellons for about 3 years. I am suffering with the pain, the
disfiguring lesions (scarring), the endless itching, the fatigue, the cloudy vision, the fibers,
as well as the brain fog. I also experience the tremendous fear that I will soon die
as a result of this disease. Coping with these symptoms is mentally crippling as well
as physically debilitating.
Sue, Maryland
My first symptom was in the late summer of 1980. I was with child at the time,working in garden
and the itching stinging all over hands, lesions shortly to follow on the back of my head.
My baby girl was stillborn; no answers for us, autopsy said well formed 39 week baby so we never
got a answer.
The next year I had my Josh, June, 30, 1982. He was so beautiful, perfect, a gift from God.
Also told us he was a healthy baby boy, but, around age 5 the migraines came, shortly after
that the seizures, learning difficulties, ADHD, and on and on to the skin problems, being too
tired to live a normal life, teeth rotted out, why? Again no reason offered. Then came the brain
cancer, the &%$$ got in my child’s head.
Cynthia, California
I consider myself to be one of the lucky ones, I did not suffer for years not
knowing what was wrong with my body. Within 4 weeks of visual proof I found
Mary M. Leitaos' MRF website and message boards that allowed me to share my
story with others that had been through similar symptoms and events. Without
these message boards I would have had not one person to discuss this cruel
illness with.
Larry, California
I am writing to describe my disease of ten years which some are calling
Morgellons. This disease has cost me dearly both financially and socially.
There are open sores and lesions visible on my face and hands. Other lesions
on my scalp, back, legs and arms. I am constantly distracted or outright
panicked by intense itching especially on my eyes, ears nose and mouth. I
have completely lost my faith in the medical profession as doctors have
labeled me delusional and psychiatrists have told that I am not delusional
and have no mental disease other than depression and anxiety (treatable) and
that I should see a dermatologist. So back and forth wasting money and hope
that I might be helped.
Dana, unknown
Our
family has been fighting this illness for several years now. It began with
overwhelming fatigue and a blood test that revealed ANA's, slowly
progressing to the full list of symptoms and from me to the rest of my
family. I underwent psychiatric testing and the MMPI revealed no psychiatric
pathologies, however the IQ test I took revealed a significant decline from
an earlier test as a teenager, from 140 to 125. I have been unable to find
or afford a physician who will treat me for other than psychiatric issues
and asthma and so have placed myself on oxytetracycline intended to treat
cattle. This does the bare minimum to keep me upright and functioning, while
I continue to have more progressive signs of organ involvement, particularly
heart/lungs. I have petechiae arising in scattered patches, shortness of
breath that seems to originate AROUND my lungs rather than IN them,
unexplained bruising on calves, and episodes of tachycardia, in addition to
the common morgellons symptoms. In the last two months I have lost nearly
twenty pounds and struggle to maintain my weight at 110 lbs. My vision is
affected by floaters that do not go away but slowly increase in size and
number, swelling around the eyes that causes blurred or double vision, and
photophobia. I wake up everyday with my eyes, face, and neck swollen and
feeling very foggy or confused until I have taken enough Ibuprophen to
decrease the swelling. I do not know for sure, but it SEEMS like the
swelling may be very close to or in the brain, and this is the cause of the
'fogginess.' We are desperate for answers, as if this has an end stage, then
I am approaching it. Please use my story in any way necessary to further aid
in this matter.
Jenny, California
Morgellon's
disease is real. It needs to be studied. My life is normal now, but there
was a time when I knew I was dying a slow death and I actually welcomed the
end of the suffering I endured for an entire year of my life.
Judith, California
My
elderly parents and I contracted this disease from a "new puppy" .
We thought he had fleas. The vet said that it wasn't fleas, but some kind of
mites. He tried everything and couldn't make him well. He was euthanized.
While we treated him for mites, we all contracted them. We all have immune
deficiency problems, and they literally took over our bodies. We had open
lesions that would not heal, and we had crawling sensations all over our
bodies. We started having threadlike particles come through our pores, and
as they did they stung. We would feel the stinging or biting almost all of
the time. I had to take Mom and Dad to urgent care and then to the hospital
for help. I went to the hospital in Apple Valley
for the second time when I had large, unhealing lesions. The Dr. said he
knew how to treat it and prescribed psychotic medicine. He felt it was all
in my head even though he could see the lesions. I understand that he
probably thought the lesions were results of self-mutilation.
I am 66 years
old, have a college grade point average of 4.0 and will be graduating from
college in June with an A.A. in business administration. I also have my
Paralegal certificate and will have my Bookkeeping Certificate this April. I
am not stupid or paranoid. I have gone from a Primary Care Dr, to a skin specialist, to a dermatologist. No one really knows what this
is. My primary care doctor has tried to help me, but no one really knows
what to do about this. It is easier for them to say I am psychotic than to
take the time to find out what it is and to treat it adequately.
In
the interest of other people I stay away from them so they won't get these.
I was not able to go to a Grandson's college graduation, two grandchildren's
graduations, the birth of a new Grandchild and two Great Grandchildren. I
had to stop going to classes at college and quit teaching bible study at
church in the interest of protecting others. One of my granddaughter had
leukemia and had a compromised immune system, too. This has been going on
for over two years. The medical profession has got to get interested in
helping the thousands of people who have this disease. It is painful,
isolating, and can be depressing. If I didn't have faith in God, I would
have given up at the height of this event. Hope would have disappeared.
Arlene, California
On
March 12th, it will have been exactly five years that I have been living
with this affliction. The first six months was like living in a Stephen King
horror film...and I was the star, surrounded by 'things' biting at me,
getting into my skin and producing more of themselves, and coming out of my
pores. Having the house fumigated again and again, did nothing to kill them.
It finally became impossible to live in my house.
Helen, New York
I
am suffering terribly at this time as I am not able to be comfortable within
my own skin, literally, and my body. My family and I reside on Long Island,
New York . One yr. ago from this past summer the soles of my feet begin to
itch terribly, non-stop each and every night. As fall arrived, I begin
to feel something different also quite often. A 'creepy crawler"
feeling was occurring under the skin of the soles of my feet...and my scalp,
usually at the same time. It was something that I had never felt before.
Worried, I made an appt. to see a dermatologist. My visit was somewhat
strange. I was told from across the rm. very quickly by the doctor that my
feet had psoriasis, and that as far as the thinning of my hair I needed to
see an endocrinologist, My "creepy crawler" comment basically
seemed to be ignored. I was given a script for psoriasis for my feet, which
did nothing at all for me. Dissatisfied with this visit of 5 mins. or so, I
sought another dermatologist. With the same complaints given, I was told I
had dry feet, a normal amt. of hair, and that the 'crawler' feeling most
likely was from sensitive nerve endings. I mentioned that I had cats, and
that I felt like maybe I had some sort of mites causing the problem. She
said to try moisturizing for my feet, and gave me nothing for my head
symptoms, and said to come back if needed. I needed to go back. as my
symptoms only progressed. I practically forced a script for permithirin
creme from the doctor, went home and did the treatment.[can't use above the
neck she said] so I was "over the counter" for that as she had
told me. I used lice shampoo, and the permithirin, to no avail. I sort of
gave up for a bit, not knowing what to do next, as symptoms persisted, and
now I had some 'nodules' under the skin of my scalp too. Spring arrived, and
systemically I was feeling "not well', and VERY fatigued. I begin to
get some itchy 'bite marks' now on various parts of my body, that looked
like sores, and that sometimes gave a biting feeling from under my
skin. I went back to the dermatologist, who NOW believed I might have a
parasite of some sort, and she gave me ivermectin. It didn't help me.
Parasitic testing came up negative, as did a biopsy punch done into one of
the lesions on the nape of my neck. I was told by this dermatologist that
she could only help check for skin infection and give me topicals for
itching for my skin, and that I should go to an infectious disease doctor
for my now wt.loss of 30 lbs, gastrointestinal complaints, sinus problems,
edema at times, and the now multiple lesions on my body that bite 'from
under' with a quick sting, itched, and burned at times. Infectious Disease,
however declined to see me since all prior tests were negative (blood work,
stool samples, etc). I went back to my primary doctor who blatantly looked
me in the eye and coldly stated “I can't help you”'. As I am trying to
move this along here. I will tell you that since the Spring I had realized
(from my trying to research and diagnose this problem on my own since
symptoms were rapidly progressing without any beneficial help from doctors
I’d seen thus far), that I fit Morgellons symptoms. Even my experience with
doctors matched incredibly others with these symptoms. I actually have
asked my dermatologist fairly recently, as this horrific syndrome has become
more media exposed. if she knows of it , and she said she knew of what I
spoke, and said that unfortunately there is no specific protocol of how to
treat it since symptoms of sufferers are of a commonality, but within
that commonality the symptoms are widely varied, according to
the CDC, and she added, IF this does indeed exist. SOOOooo,to bring this
letter current, I would like to say that I am on my own to try to do what I
can to tolerate the following: painful sores that sometimes have
fibers within them that seem to move within and at times OUT of these
lesions, Hair that may BE fiber, nodules with extremely painful sores
present on my scalp, and to withstand a never ending battle by my own
body. My hair is now extremely thin, and I am not sure if it even is
hair any longer as it now has bizarre characteristics since my scalp
symptoms have worsened drastically. I am at a loss as to what to do from
here...other than to try antibiotics and de-wormers that I must attain
myself. The presence of this inescapable nightmare (Morgellons disease)
consumes and destructs my life now as it tortures me each and every day and
night with it's horrific dermal and systemic existence in my body. The three
other family members in my household also are suffering, as half way through
the progression of my symptoms, they also begin to present with similar
symptoms. Each day we pray that SOMETHING WILL BE DONE to help us and others
to BE RID OF THIS so as to gain our health, peace of mind and body, and our
lives back again. Morgellons disease has taken these things away by the
immense,
inhumane suffering it causes as it flourishes, unchecked, within us. A cure
MUST be sought and found for our sake here in New York, the sake of other sufferers
everywhere, and all mankind, IMMEDIATELY!!!
PLEASE!!!
Artie, New York
My
name is Artie, I'm 47 and grew up and live in
For
almost 2 and 3/4 LONG years this disease has spread throughout my entire
body. I see a therapist and must take sleeping medication or I lay in agony.
Anxiety runs my life. My hands are the most "infected" and I wake
EACH day to hands so painful it feels as if they are in boiling water. I run
to the sink and cool water eases the pain after 10 minutes. I have lost all
my interests and dreams and have no hope of finding another girlfriend (I'm
widowed). My business is sinking fast and bills are killing me. I feel
bites, have black, green and red fibers coming up from small welts that come
from below. I've been to 27 doctors, dermatologists, travel doctors, ER's
and 6 NYC hospitals including NY Skin and Cancer. The two doctors actually
got mad for "wasting" their time. I walked out and wanted to step
in front of a truck and almost did.
I have lost my friends and my family
thinks I'm crazy. My own Mother "doesn't want to hear it." I spend
about $40 a week on laundry; can't wear anything twice or the bites start.
Clean sheets every other night and I shower twice a day and I still have a
"fuzzy" feeling. I can't think straight; I forget everything. I've
gone through 9 "pocket microscopes" and have tried to figure
what's happening to me but with ignorant pompous doctors it's probably going
to be "discovered" after some high-profile people mandate a study
and hopefully a cure. I exist a day at a time and as my self-created
business slowly dies I feel like I'm going the same way. Cure or not, I will
never again think of doctors as "gifted people" for they turned
their backs and left me in a dark nightmare totally hopeless. YES folks,
this disease is very nasty, spreading fast and it may be knocking on your
door very soon for nobody is safe and due to the ignorance of the medical
community, a cure seems far off. Thank you.
Judy, New York
In
1990 while living in Aromas, CA, near
I am a plant pathologist with a background in microbiology and access to a
microscope. Over the years I have attempted to identify something
microscopically in my nasal secretions which might explain my condition, and
have routinely found blue, clear, and red non-septate fibers and round brown
or black structures (and Alternaria spores). (And have not been able to
convince any physician to examine this material!). An overheard conversation
in 2006 regarding a non-healing lesion from which blue fibers emerged lead
me to investigate the description of Morgellons disease and I feel that I do
have some form of this disease.
Laurie, New York
I am a professional woman who has continued to work and yet, suffered
for the last 10 years with what I KNOW is Morgellons Disease. This has NOT
been easy. I have changed doctors, been to 5 dermatologists and finally
thought I may be crazy as they told me I was. I was told by one
dermatologist to see a psychiatrist and by another that he had no idea what
I had. The scars, lesions, and sores that don't heal for a very long time are real.
Doctors, family, friends, employers and general people see them. I have
brought samples of fibers from my skin and hair in to be examined. I have
had a "punch biopsy" done and guess what - a hairlike fiber was
the culprit. I have copied Morgellons material and given it to the doctors
and they act like they
never read it or paid any real attention to the symptoms, etc. I have wasted
money and time to be told I am imagining what is TRULY happening. A
co-worker of mine came to work one day and said he saw something on CNN
about a new disease - described Morgellons. I stood and said nothing - I
don't want to be deemed crazy by persons who respect me. I can tell you more
of the suffering and pain - the embarrassment of sores and continual spots
and the tiredness that I feel. The best thing I ever found was the
Morgellon's Foundation - my daughter in
Please pay attention
because it exists and someone in your family may contract it next. It is not
a disease you can discuss with friends, employers, or doctors. You go it
alone and hope your family doesn't have to endure what you do. You often
don't sleep, you often can't think - you try your own remedies - I am
willing to go public if I feel I have backing. I cannot afford to have
people think I am crazy in my profession.
Thank
you for the opportunity to express myself. And, by the way, I have donated
to Okalahoma Research to help with this disease - please know it is real.
Mary, New York
I
wouldn’t wish this disease on my worst enemy. For three years I have dealt
with a condition that has made my life very difficult. My skin has lesions
that never go away including on my face, back, arms and legs. I have trouble
sleeping at night and during the work day trying not to touch
my skin to dig out what’s moving underneath. There is a constant sense of
crawling and biting all over my body and things coming out of my skin. I
initially thought it was a reaction to being bit by various bugs, but spring
came and went many times over and have had my apartment exterminated
numerous times and I still have the problem. I sought the advice of
dermatologist after dermatologist with numerous diagnoses. These ranged from
scabies, to arthropod reaction, hives, hypersensitive skin and that I had a
psychological condition.
Maureen, South Carolina (Maureen
lost custody of her son after he began exhibiting symptoms of Morgellons.)
I have finally felt months of no symptoms. I
have finally found a compassionate doctor that cannot fix Morgellons, but he
doesn’t think I’m a nut. He saw the fiber in my hand after I said hello
to him for the first time.
Lynne, California
After
a tick bit me in March of 2006, I exhibited many symptoms of Lyme disease
and was treated by my primary care physician for several months with very
strong antibiotics.
I also fear that this disease may be a contagion, and that I may pass it on to those people
that I come in contact with, family, friends, and the public. I have lost my boyfriend because
of this. I willingly isolate myself from dating and socializing as I am embarrassed as to how
I look and I fear I may infect those that I get in close contact with. I believe that it is my
right as a United States Citizen to have this disease taken seriously, studied, and a treatment
protocol established. I have also spent time, money, and have had to experiment on my own with
medications and supplements as I am desperate. My doctors do nothing, as they need knowledge
to base their treatments on, at this time there are none. This disease is not recognized in the
medical community. Please help me and everyone who is suffering from this disease.
Now we get put off wait, wait, answers will come, but not in time for my child. All that is
left is an empty room of dreams and memories of the horror watching our sweet child suffer
and die.
When will I feel peace, when will I be able to say he didn't die in vain? WHEN THEY FIND THE
ANSWERS FOR ALL OF OUR CHILDREN, THAT’S WHEN. They want to live, love, learn, they want to be
able to move without pain, they want to feel pretty, spend time with friends, worry parents.
Not much, they just want to be KIDS. Really that’s all; just normal life, that’s all they want,
to live.
Dear God, please help our children to have a normal life and please hold close the children
we've lost to this horror, they only wanted to live and to love. I'm so broken I can't even
get my thoughts out the way I need to. I feel like a second grader when I try to type my thoughts.
I want my son. I want all the others that have lost a child to wake up and find it's all been a bad
dream. I want the parents that have to watch their babies suffer so badly to wake up tomorrow
and watch them run and play, live and laugh and love.
The unlucky victims of this disease are mothers, who right now, are watching
their children lose their childhood. Some children are dead, some are still
being misdiagnosed by doctors who refuse to believe.
This disease is ahead of its time, way ahead of our doctors.
I no longer trust physicians, nor respect them. This disease has destroyed
all hope and dreams of the future. I can no longer work, and at times must
rely on the kindness of neighbors just to get by day to day. My savings are
gone and I was forced to sell my home. I live like a hermit, scared to death
I will infect someone else with this nightmare. The disease has disfigured
my face and body to the point where I hate my body so much. I can no longer
hug a friend, or kiss a lover. When my dog showed signs of this disease I
had to let him go.
I have attempted suicide when the disease became unbearable, what brought me
back, I might never know. When it becomes unbearable again, I will succeed
this time. For what sense does life make, when I can no longer be of
assistance to others, nor even take care of myself.
I have suffered greatly from this disease. I am free of it for the most
part now, but a year of my life was literally taken away from me while I
suffered in misery and pain. I don't know what it is. The black specks seem
like they could easily be bacterial such as spores or parasitic or both. The
stinging sensations could logically be accounted for by something bacterial.
I can say this, though......... My boyfriend and I both had it. He went to
his Primary Care Physician and they swabbed one of his sores. We were both
covered with these. His result came back as being an "arthropod bite
reaction." His doctor said that could mean anything, like that he was
simply bitten or that he ate shrimp and was allergic. Seeing as how both of
us had these and neither one of us are allergic to seafood of any kind, it's
a logical assumption that these possibilities did not really apply to the
situation we were dealing with.
I also had a swab taken and was told that the bacteria from the sample was
found to be resistant against just about everything with the exception of
Cipro in large dosage. So that's what he prescribed for me along with some
external medicine.
I can attest that the feeling of Malaise is very extreme. The fatigue is
overwhelming. The sting and the inflammatory reaction that is caused by
these things is excruciating. Eventually a sufferer will start to feel
effects on the nervous system. Doctors make it even more of a living
nightmare to the point that people suffering would just rather die. That is
literally what the sickness along with how the doctors treat people who are
infected does. I was told I had Impetigo week after week until I demanded
that someone explain to me how that could even be physically possible to
have a never-ending case of Impetigo. Finally, I ended up being diagnosed
with Parasitosis. Delusional, that is. The people who I depended on 100% to
try to help me turned out to make my life 30X more miserable than it had
already become. My hair started coming out in gobs. My beautiful face was
hideous, the stinging got worse, my shower scrungies were literally
inundated with black and blue specks. All I know, is once I moved out of
that apartment, I break out every once in a while and it's never gone away
completely. However, it's somewhat manageable now. The attacks are acute,
vs. chronic and the condition is no longer completely debilitating to me
like it once was. Every six months I self medicate with large doses of Cipro
for 1-2 weeks and an anti-parasitic medication that can only be taken 1-2
times yearly, anyway.
Please help to find the cause of this painfully debilitating and depressing
disease. Something desperately needs to be done to identify exactly what
this is and change needs to be implemented in the medical community as to
how people that are truly sick and need medical attention are treated. It's
an absolutely inexcusable and horrific ordeal to be put through by the very
people you are depending on to help you -- only to be treated like a person
having "delusions"
Children and infants have been infected. People literally do lose their
sanity in a way. Fatigue and Malaise and Brain Fog and stinging pain and
horribly ugly sores with black things and doctors humoring and acting
condescendingly like this is all a very sad mental problem that is pitiful
and requires antidepressants and a dose of reality, while the infected
person is worrying about what the heck is happening physically and mentally
and emotionally and dropping out of society due to being exhausted and in
pain and looking like a leper and worrying about infecting other
people----------It is enough
to finally break a person who most likely was used to a normal life of
health, work, school, social life and who could never have imagined
something so graphic, morbid, scary and surreal happening to them.
I pray continually to God to comfort those who
are suffering the way I once did and that this nightmarish sickness will be
given enough attention that the medical and scientific communities will stop
this adamant laziness and do the necessary research needed to identify it
and that eventually there will be treatment available to those in need.
Almost worse than the affliction, was the behavior of the doctors I called
on to help. They listened to my story, looked at my rashes, cavalierly gave
quick shrift to my samples, and declared me to be delusional, and sometimes
worse. . .one university etymologist rudely asked it I saw mosquitoes flying
through walls. After six months of a living hell, I finally met a dermatologist who
believed me. She tried several methods to rid me of these things which
worked temporarily, but the disease returned even more determined. Having
given up, she sent me to someone she referred to as a genius, who cures
those patients she can't. He was an Oriental Medicine doctor, a Dutch Jew,
who did his 'oriental' thing and made a formula which remarkably stopped the
'comings and goings' of these 'things' in four days.
I have recently learned of others--through friends and neighbors aware of my
plight--who are suffering. One actress was unable to attend the Golden
Globe, for which she and her husband had invitations, due to the terrible
rashes on her face and body. I know about those. They are nothing short of
horrendous. The itch is unbearable, and the lack of being able to control
things in one's own body can drive a person crazy...in which case, the smug,
arrogant and insensitive doctors would ultimately be right...we'd end up
crazy..or their word, "delusional."
Imagine trying to find answers and being treated like I am a delusional nut
as opposed to an educated person who worked in healthcare for over fifteen
years. I have lost all respect for the dermatology profession. I went to
other specialists too, infectious disease, allergists who all told
me to go back to see a dermatologist. One doctor began to refuse to do a
biopsy because “my patients don’t tell me what to do”. I told him my
gynecologist, cardiologist and internal medicine all told me to come and get
a four punch biopsy. I am still suffering and with few answers.
I found out about the Morgellons Foundation through the New York City Health
Department Epidemiology Department. Since
My son was ripped from me and sent to my parents while I was in hell with
this Morgellons. Alone I was bombarded with doctors calling me crazy, the
Department of Social Services claiming I harmed my son.
I made sure to get a court appointed attorney while I did everything social
services asked me to do (drug tests, parenting classes, anger management,
the whole works ). All testing came back that I was ok (I knew I was) and
found a compassionate doctor who gave me antibiotics and a kind smile. This
war for my family began in August, but my hell with Morgellons has been two
years going to date.
The most horrifying thing in all this is that my son, now 13 years old, is
showing many signs of Morgellons: the sores, the itching, fatigue to the
point he would fall asleep in class, and his teeth
rotting out of his head ...now that was blamed on me and neglect was on the
Judges lips when she got a dental report. As soon as my son was taken, I
began to do whatever it took to get better.
I kept doing what I had learned from other Morgellons people to get me
better. I became so well that when it came time to go to court. I looked so
good that three people asked me if I was an attorney. I could walk for the
first time in years without a cane, my thinking and speech were normal and I
was beyond better. Not cured, but this was soo sweet!
Phew.. I am the old gal again but the court visit was beyond heart
wrenching. I used to be so frail I could hardly walk, who used to look like
a cancer survivor with leprosy, who was loosing weight faster than an
anorexic could and was barely 118 pounds and dying in August, was now a 140
pound, knockout looks back, and a mind that was sharper than a tack, even
the attorney was stunned at the transformation (Its not just the antibiotic
-- I have changed everything about me here.. the products I use to clean
with no chemicals the supplements and more and I am on a fixed income so it
wasn't expensive.
After she started, the Judge said to me that I was doing a great job taking
care of me but the dental report showed neglect and this is all I stayed to
hear. I knew my son was not coming home the Judge had no idea what I used to look like, so she could not see
the transformation and I knew my son was not coming home.
There are many people in my life that know I got better and the horrific
thing is my son has this but there is no one who can DX morgellons in him at
this time. I have hollard till the cows came home late for dinner about my
son. I know I could get him to my doctor perhaps and of course I would hope
he'd miss out on the hellish nightmare I and many others have lived through,
but at this writing my family is torn and this mother's heart feels more
sorrow than one could imagine.
This is inhumane folks, this is why we all need to pull together and support
the Morgellons research foundation to get this in a respectable
compassionate hand and under a microscope to end these horror movies.
I have spoken to many warm smart people in my journey and will many more.
Some gave up, some have lived in a car so infested, a fire ant hill would
feel like the plaza hotel. The heart wrenching terror that Morgellons causes
is nothing we signed up for, but we have it!