Many Lyme patients fail to
receive any kind of definitive diagnosis even long after the
presentation of
symptoms. Although depression
is common in any chronic
illness, it is more prevalent with Lyme patients than in most other
chronic illnesses. There appears to be multiple causes, including a
number of psychological and physical factors. From a psychological
standpoint, many Lyme patients are psychologically
overwhelmed by the large multitude of symptoms associated with Lyme
disease.
Most medical conditions primarily affect only one part of the body, or
only one organ system. As a result, patients with only a few symptoms
can still work, and do activities, which allow them to take a vacation
from their disease. In contrast, multi-system diseases such as chronic Lyme disease can
penetrate into multiple aspects of a person's life.
This has been the case with me for going on 14 years now. It is
difficult to escape for periodic recovery. In many cases, this 'periodic recovery' results
in a vicious cycle of
disappointment, grief, chronic stress, and demoralization.
I get really frustrated, mad, and just want to swallow an entire bottle
of Biaxin and maybe some bleach and not to kill myself but to kill the
Lyme. The annoying depression is not only caused by psychological
factors, but physical dysfunction can directly cause depression.
Endocrine disorders such as hypothyroidism, which cause depression, are
sometimes associated with Lyme disease and further strengthen the link
between Lyme disease and depression. In my case, the
swelling of the
lining of my brain (Lyme encephalitis) is the cause, in addition to
poor adrenal function; brain lesions and vasovagal syncope, also known
as neurally mediated hypotension (NMH).
My Lyme
disease has done some nasty damage to my central nervous
system. Lyme
encephalopathy (brain damage and swelling)
results in the
dysfunction of a number of different mental functions. This in turn
results in cognitive, emotional, vegetative, and/or neurological
effects. Although many Lyme disease patients demonstrate similar
symptoms, no two patients present with the exact same symptom list.
Again, everyone is different.
Emotional
Suffering & Symptoms
Many other
mental syndromes associated
with late stage Lyme disease, such as attention deficit
disorder, panic
disorder, obsessive-compulsive disorder, etc., may also contribute to
the development of depression. Dysfunction of other specific pathways
may more directly cause depression. The link between encephalopathy and
depression has been more thoroughly studied in other illnesses, such as
stroke. The neural injury from a stroke causes neural dysfunction that
causes depression. Injury to specific brain regions has different
statistical correlation with the development of depression.
Once depression or other psychiatric syndromes occur with Lyme disease,
treating them effectively improves other Lyme disease symptoms as well
and prevents the development of more severe consequences, such as
suicide. Suicidal
tendencies are common in neuropsychiatric Lyme
patients. There have been a number of completed suicides
in Lyme
disease patients and one published account of a combined
homicide/suicide. Suicide accounts for a significant number of the
fatalities associated with Lyme disease. That's why it's
really important to seek treatment or find some kind of help for the
depression that usually accompanies Lyme Disease.
According to
Dr. Bransfield, who has thankfully contributed to many of
the facts stated here in my story, suicidical tendencies
occur in
approximately one-third of Lyme encephalopathy patients. For me, giving
up was never an option! Homicidal dysfunctions are less common, and
occurred in about 15% of these patients. Lyme patients
displaying homicidal tendencies also showed suicidal tendencies. Most
often, these 'homicidal dysfunctions' are considered as "Lyme rages" and are
very scary and
frightening to witness. In contrast, the incidents of suicidal
tendencies are comparatively lower in individuals suffering from other
chronic illnesses, such as cancer, cardiac disease, and diabetes. I
really just want all the
Lyme-ignorant doctors who misdiagnosed me for
10 years to get bit by ticks!
To better understand the link between Lyme disease and its effect on
the human brain, one must understand the complexity of
this disease.
The spirochetes (Lyme bacteria) release poisonous neurotoxins into the
brain of Lyme victims. The mixing of these toxins with brain chemicals
causes the person to become unstable. Some off the symptoms of this
are, extreme fatigue, crying spells, laughing fits, manic hyper
episodes in which the patient is unaware of his/her actions.
Normally
quiet and shy reserved persons have been known to go totally 'whacko',
and become completely and hysterically uninhibited. Panic attacks,
anxiety, and severe depression result from Lyme disease. Most people
(who are ignorant) say that we are depressed because we are sick, like
we are bummed out and sad because we cannot do anything anymore or have
any fun. They do not realize that our
brains are being attacked and
making us crazy and emotionally turning us into zombies on heroin, and
sometimes appear drunk, or so it may seem.
Herxing
Explained In Depth
A "herx",
(also Herxheimer's, herxing) which I will now explain, makes everything worse.
A "herx"
stands for (Jarisch-Herxheimer reaction) is when a Lyme patient gets
temporarily much sicker as a result of the antibiotics killing of
spirochetes. Its like throwing gasoline on a fire, suddenly everything
explodes, and gets worse. Hyperbaric oxygen, Flagyl®
and every single kind of
antibiotic that I took for Lyme made me herx.
The entire
first year of my
therapy was one big blur of "feeling worse before feeling better"
herxing, and misery. As part of this reaction, many patients
describe becoming suddenly aggressive without warning. When I
herx, I get foggy in the head, confused, slur my speech, get totally
exhausted, shaky, weak and want to be left alone. How can this be
explained?
I flew into several Lyme
rages where I had no idea what was happening,
I started breaking windows and throwing things around and had the most
painful herx, right in front of my family. A bad herx can last from
several hours to several weeks. I herxed for almost all of 1999-2001,
and on and off thru 2002, I am still herxing now on and off. But, I never
quit taking my antibiotics during a herx.
Some people back off them, I
kept going, it is the fighter in me, and I won't let the germs win.
Flagyl® was a real eye opener for me. After I would take a
pill, a few
hours later my muscles would twitch like crazy all over my body, my
muscles would get stiff, I am my whole body would be swollen and in
pain. Flagyl® made me so tired I could sleep for weeks
and wake up
acting like a drunken zombie.
Once the disease has spread into the
peripheral and central nervous system, hang on tight! It can
begin as tingling sensations anywhere on the body, but for me it felt
like
shooting and stabbing pains from head to toe.
Some Very Scary Stuff Can
Start
Happening With Lyme...
One day in 1997, I was driving my car while running an errand for my
boss at work. I was driving along looking at the mountains when I felt
a shooting pain across my chest, right below my bra line. I thought,
hmm, must be the bra, maybe its too tight. It was the beginning of
paralysis, and in the following weeks, I began slurring my speech,
stumbling, getting lost, going out in my car and having no idea where I
intended to go.
That is scary,
and I started to wonder if I had some
kind of mental illness, since I was so confused in the head. I started
to forget more and more. I could not remember what errands I was
supposed to run, I wandered, lost track of time, got lost in my own
town, spent 4 hours in the supermarket for no reason. My eyes hurt,
they aches from the inside out, my vision went blurry, I could no
longer sleep with the blinds down, or the window open. The slightest
spot of light in my bedroom sent a violent shock wave through my entire
body.
It was very painful, the
only way I can explain it to a healthy
person would be to compare it to not having slept in 48
hours, being
punched in both eyes, while having the flu, then drinking a 1 pack of
beer, getting smashed, finally going to sleep, after puking, sleeping
for 4 hours (while having nightmares of dying) and then someone opens
the window, the sun hits your face, and you scream, no!
It
was so
horrific, it literally took to much energy to scream. I
needed to sleep with a blindfold
on, and wear sunglasses at night. I also did really dumb things without
realizing it, like putting my clothes in the refrigerator and a box of
cereal in the dishwasher. "Lyme brain" is what that is
called. A few days after the shooting pains started going
down my legs and across my face, and my face sagged, I had the first of
many tearing episodes while driving my car.
While on my way to work one
morning, my eyes
suddenly went haywire and I could not see. They were
super sensitive and could not take the light. I swerved and pulled over
on the highway, and tried to recover. I must have allergies I thought.
It was so scary, and it would not stop. Tears were streaming down my
face, and I could not see. I also felt dizzy, cold sweats and
exhaustion. I needed 12 hours of sleep per night, and still woke up
tired.
Something is really wrong with
me. I thought to myself. What am
I allergic to now, all I eat are vegetables, rice and apples. The
steroids that have made me gain 30 pounds are supposed to block
allergic reactions, so what the heck is going on here. It was the most
boring of all food allergy diets, and the most expensive. I closed my
eyes until I could see clearly again, and then drove on to work, still
screwed
up.
Now, looking back, I
know that was a major sign of neurological damage,
light sensitivity. My ears were next, to go, and I became a very light
sleeper. When I tried to sleep, I needed to run a fan right next to my
ears. The sound of the phone ringing, car horns, music, and especially
car alarms and motorcycles were so loud.
When you have
Lyme, every sound
gets amplified, and its like you can feel every little
sound vibrate
through your whole body. Damage to your nervous system makes you
ultra-sensitive, and puts your startle reflexes on overdrive. People
around you will be scared, and not understand. Its best to refer them
to this website, or to talk with a doctor who will help them
understand.
It takes a
lot of time and patience to understand the
complex nature of this disease. If you are a family member
or friend of
a loved one going through anything like this, you have to be strong for
them. It is not their fault that they are sick. Be as loving, giving
and sweet as you can. Let them sleep, be quiet, and take care of them. Although this
is not easy to watch, you cannot give up on people you
love. My loved ones had to deal with me sleeping in a
closet with no
windows, my cave, my little womb, the safe haven where I could get what
my body craved… precious sleep!
As
my symptoms increased, I sought the help of over 40 doctors.
I was
mis-diagnosed with chronic fatigue syndrome (CFS),
fibromyalgia (FMS),
multiple sclerosis (MS), immune dysfunction, hypoglycemia, rheumatoid
arthritis (RA), Lupus, chronic mononucleosis, and Addison's disease. Most of the
doctors I saw referred me to specialists because they had
no idea what was wrong with me. I have had some horrifying
encounters
with doctors. The worst of them all are infectious disease specialists,
since the testing for Lyme disease is so poor, many of my blood tests
were normal. As a result, two-thirds of the doctors I saw told me I
thought I was perfectly healthy on paper, and suggested that I should
see a
shrink.
Ironically
enough, when I finally did see a shrink, it was he who
thought I was really sick, so it went in circles for years. I was the
victim of verbal abuse my three different doctors (who were all
conspiring
against me) back, to back to back. The infectious disease doctor,
rheumatologist, and neurologist were all probably getting kickbacks
from my insurance company to not order tests, or diagnose Lyme.
Insurance companies do not want to have to pay for the extremely
expensive long-term treatment for Lyme disease, so they pay these
doctors to dent that it exists. (This is, of course, my
personal opinion.)
An
immunologist told me I had
Epstein- Barr virus and that I had less then 2 years to live.
A gastroenterologist
in NY
infectious disease doctor in NY told me that all cases of
Lyme disease
were easily cured in 3 weeks. Since I had the 3 weeks and I was cured,
and to try some Prozac®.
To make
matters even worse, a really heartless and stupid Infectious
disease doc in Colorado told me I had all the symptoms of active
AIDS. Infectious disease 'ducks' also told me that babesia did
not exist, and that if I had Ehrlichia my organs would be
failing by
now. Infectious disease doctors I have found to be among the most
heartless, cruel, and stupid of all doctors. I have had so many nights
full of panic and worry that I was dying from some mysterious deadly
infection that it's a wonder I am still here.
Doctors who
know nothing about Lyme disease are referred to by the
majority of the Lyme community as "ducks." To say I went
through a lot
is not telling the whole story. I
went through hell, and enough of it
for a lifetime. I was so sick and desperate, I would sit there in the
waiting room dripping sweat, 102 fever, my left side numb, my face
drooping, my feet purple, having slept 16 hours and woken up tired,
with no appetite, massive anxiety, nausea and facial flushing that made
me look like a homeless drunk, and I would be dismissed as 'perfectly
healthy' by the doctors. They would go on about me finding a chronic
fatigue support group and continue to tell me that I needed a shrink.
What
everyone
needs to realize is that chronic fatigue, fibromyalgia,
and arthritis are not diseases by themselves. Of course,
they are real,
but they are symptoms,
not diseases. If you go to the doctor, and
complain of being tired all the time, for 6 months or more, you are
probably going to be diagnosed with chronic fatigue. You have to use
common sense here.
You have a
symptom, and you are being diagnosed with
a symptom. It makes no sense! You need to find out the
cause!
Lyme
disease, and the bacteria B.burgdorferi are the cause of the chronic
fatigue. People join chronic fatigue support groups, they
go on
disability, they tell their family "I know what's wrong with me now,
and I have chronic fatigue." I still find it amazing just how many
people get sucked into this giant conspiracy and line of thought. None
of it makes any sense, yet we are so happy to have a diagnosis, we
accept it. Meanwhile a cause is not found, and the person is left with
an undiagnosed and untreated infection.
Many
thousands of people believe they have fibromyalgia, chronic
fatigue syndrome, depression, multiple sclerosis and more, and still
they have no idea what the cause is. Wake up people and
think with your
brains! Normal, healthy people do not just suddenly come down with MS,
or are exhausted all the time for no reason, there is always a cause.
Do not buy into the word syndrome either; it is just a word for a
collection of symptoms for which the doctors label a syndrome because
they have no idea what is wrong with you.
The same thing is true for
treatment of diseases. People
seek out a cure, and what they get is not
a cure, but medication to treat the symptoms. An example
of this in
Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed
to treat painful joints. The medications will work on the symptom, the
pain, but the cause of the pain goes untreated.
Logically, the smartest treatment
would be antibiotics, which directly kill the cause, plus supportive
prescriptions to treat the symptoms and make the patient more
comfortable. Therefore, in the previous example, the patient benefits
from treatment aimed at the cure, plus they get symptom relief. Seek
the cause, people, always seek the cause.
Palliative measures are always temporary and do not get to the root of
the problem!
In my story, I set out for a diagnosis, and treatment for my cause. I
was misdiagnosed as a crazy person with chronic fatigue. I
heard the previous responses from so many different doctors and medical
staff that I have lost count of them all. I was told
repeatedly that I was crazy, in perfect health, depressed, have chronic
fatigue and that I could not possibly still have Lyme disease. It
is
all one huge Lyme conspiracy.
Think about this: insurance companies do not want to pay
for long-term IV antibiotics that can coast upwards of $3400 per week,
so they pay these dirty doctors to misdiagnose and under treat possible
Lyme patients, diagnosing them instead with chronic fatigue or similar
made up disorder so they do not have to pay anything. I have been
severely wronged for 10 years and too sick and poor to do much about
it. (Please read my Lymelinks for more information about the
New York
OPMC and the Lyme conspiracy.)
As
the months
dragged into years, I kept getting sicker. A few doctors
took blood, and some interesting things were found. I tested positive
for rheumatoid arthritis, HHV-6 and Epstein-Barr virus. I was told I
had a stealth virus infection that I got from a contaminated childhood
polio vaccine. I took ganciclovir and other anti-virals, all of which
did nothing. The MRI of my brain showed white matter lesions on my
frontal lobe, and I was told I have MS. My natural killer cell level
and function were low; I had a result of 3, and a function of 88%.
Furthermore,
my
adrenal glands were shot and not producing cortisol, and I was
diagnosed with Addison's disease. My red blood cells were
low, my
platelets low, and my immune system was weak. I was put on prednisone
for almost 3 years for my bad adrenals. Now I know that was a huge
mistake, and is one of
the worst things a person with Lyme disease can
take. They make you gain water weight like a hippo and
there is nothing
you can do.
I tried many
alternative treatments, diets, and supplements. I had all
my mercury fillings replaced, and I did the protocol's chelation. I
even traveled to the Dominican Republic to a special chronic disease
clinic seeking help. There I tried treatments from Europe. I was
treated with anti-viral drugs combined with a supposed "targeting
agent" called hyaluronic acid (HA). I had to pay $12,000 to receive the
HA, since it was illegal to use in the United States. I later found out
that patients of this doctor were getting it "sneaked" into their
nutrient and antibiotic IV treatments without having been to the
Dominican Republic.
My treatment
also included hydrogen peroxide IV's,
ozone, UV-B photo ox therapy, IV vitamin C drips upwards of 75 grams,
multi-mineral and vitamin IV's, detox therapy, Chinese herbs,
homeopathy, and poly-MVA that was being used for cancer. I also did a
German vaccine at the clinic. They took my blood and sent it
to Germany, separated out all the bed stuff in my blood, and made a
vaccine out of it that I would later inject to supposedly cure me. I
know now that most of these clinics are just big money scams, preying
on sick people with their wallets open. Be careful!
While I was seeking help in the Dominican Republic, I came down with a
life
threatening bacterial pneumonia. My throat closed up and I was rushed
to the ER in that awful city of Santo Domingo third world medicine
nightmare! Nobody spoke English, now did they have any
idea what was
wrong with me or all the different chemicals and treatments that I was
taking.
I
was on a
breathing machine, and was out of it until I woke up
in the clinic with IV's in both arms, a 105 fever, shaking, sweating,
and could not talk. It was scary, and even though I was 24, I wanted my
Mommy! The doctors at the hospital gave me IV
antibiotics for
the pneumonia. I was very weak, and I had no idea what was happening to
me when I got worse upon the addition of antibiotics. Now we know that
was the first big herx of the previous untreated Lyme 10 years of hell
and suffering. The ducks in the Dominican waited until I
could get on a plane, and I flew back to New York so my parents could
take care of me.
I was supposed to fly back to home cured,
and have a happy life, but that did not happen.
Strangely, after a month in NY, I felt a little better. I know now it
was because some of my Lyme was killed off by the pneumonia treatment,
which were IV antibiotics. At the time, I thought it was the IV vitamin
C that was making me feel better. I got ready to fly back home
(Colorado), but that never happened.
The time
finally came when I could no longer work or take care of myself,
and
I
was confined to bed.
I
truly began
to believe that I was not
going to make it. My symptoms had progressed to the point
of complete
exhaustion, where I was too weak to brush my teeth, or even sit up to
drink some water. If I did get up to go to another clueless doctor, I
would be dead for 3-4 days afterwards from the exertion. I spent weeks
in the hospital, still untreated for Lyme. I was given painkillers,
anti-inflammatory drugs, and diagnostic tests up the whazoo!
Even
while
lying in a hospital bed, my Lyme tests which are usually false
negative, were all positive, including the ELISA, western blot, even by
the obnoxiously flawed CDC criteria, my tests were positive.
Still, I got
no treatment, and I was released and sent home with antidepressants and
rheumatoid arthritis drugs, and yet another diagnosis of CFS.
A very
important point to make is how terrible
the testing for Lyme
disease is. All of the tests that are available have problems. The
ELISA and western blot are notorious for yielding false negative
results. Please refer to my LymeLinks page for more in-depth
information on this very vital topic.
Bitten
AGAIN!
To
make
matters worse, I got bit by another tick in the summer of 1999.
I found the little sucker right on the side of my armpit, it was so
tiny. It was full of blood and had been there for 2-3 days. I checked
myself all the time, and yet since it was so tiny, about as big as the
period at the end of this sentence, I missed him. That night after I
pulled off the tick and was sleeping, I woke up to a drenching sweat
all over my body. My heart was pounding, and I was shaking. I thought I
must have an allergy to something, or have a stomach flu.
That
miserable tick did this! At daybreak, I had a
friend
drive me to you guessed it, the ER. They took blood, recorded that I
had a 103 degree fever, and gave me 2 weeks of Ceftin, another
antibiotic. They sent me home with orders to rest, that I had
Lyme...again. Oh my god! It kept getting worse. My heart went crazy, it
was pounding at 150 beats per minute while I was lying
down trying to
sleep and it never calmed down.
At the spot where the tick was attached
I had a really annoying muscle
twitching going on. The twitching spread
to my entire body and never stopped. I had horrible sweating, a really
weird, out of it feeling in my head, low blood sugar, nausea, and
vomiting. I know now that is the exact day that my NMH started and that
the babesia blasted me into a whole new evil realm of infection hell.
The
spot of
the bite twitched for weeks, calmed down, then started back
up again. The hospital results showed a
positive ELISA
and western blot
for Lyme. They told me to take all of my Ceftin®
and I
would be fine. At least I received some treatment that time. Of course,
they did not check for babesia
or Ehrlichia.
So now, guess what gets to
brew? Yes, my babesia started to brew and it went untreated.
After
four
more mad dashes to the emergency room, now knowing I had
Lyme
disease, from a myriad of neurological symptoms, I finally found a
piece of information that held hope. I bought the book, "Everything you
need to know about Lyme disease" and found the name of a doctor in NY
who seemed to know a lot about Lyme. After reading the book, I had a
breakthrough, and I had found out what was wrong with me.
The saddest
part about this, is that I did it all
on my own because all those doctors could not figure it out, but I
could read
a book, and it all made sense. After being verbally
abused in the
hospital for 2 weeks by infectious disease ducks, rheumatologists, and
shrinks, I left the hospital once again, sicker then when I arrived,
and half paralyzed on my left side with my skin feeling like razor
blades, because they took away my antibiotics. I was
released and sent
home with more painkillers, Vioxx®, and steroids for
inflammation. I went home sick with tingling pain sensations
all over my body, the numbness, and unable to feel most sensations on
my skin.
The
doctors ALL had refused to address my Lyme disease.
It was then
that I went onto the Internet and found LymeNet, a
wonderful online forum for Lyme patients and a wonderful source of
information. After posting a desperate plea for help, I got an answer,
and along with it the address and phone number of the doctor. I dragged
myself out of bed for an hour a day and went on the internet having no
idea how to use the thing, and I
found help, answers, and treatment
guidelines. I knew I could not give up now, I finally knew
what was
wrong with me since I was a young teenager!
The day my journey of mental and emotional pain and suffering,
misunderstanding and abandonment came to a halt was the day I walked
into the office of Dr. Joseph
J. Burrascano, Jr. of East Hampton, NY.
He read over my folder full of lab tests, and my 20 pages of typed
personal history of the previous 10 years. He told me he knew
what was wrong with me and said he could make me better. He said I had
been grossly under treated and mis-diagnosed.
He said that
although my health history was bad, that it was not unusual to him. He
has seen thousands of patients just like me, who are so sick and
desperate. He examined me, talked to me, discussed my diagnosis, and
what treatment I would need. He said my case was severe,
and that I may
get over this all together but it will take a long time.
Tears of Joy!
I cried tears of joy!
Finally,
someone had listened to me, and finally
I found a doctor who understood this awful disease.
It
is the
same central
line to the heart through the chest port that chemotherapy patients
have to use. The relief I could finally let out! I found
help! My Mom
took me to the ocean in East Hampton after the appointment, and we
cried tears of joy!
The love and gratitude
I felt for this new doctor
was overwhelming. How do you thank someone who saved your life? I told
him I would never give up, that I was a fighter, and that I would climb
mountains again no matter what! He gave me a big hug, and sent me on my
way to start the journey back to health. My entire website is
dedicated to Dr.
Burrascano.
My treatment began with IV antibiotics on New Year's Eve 2000.
My co-infection
testing proved positive for babesia,
Ehrlichia,
and bartonella.
I had no idea, just how much sicker I would get! When you
start Lyme treatment, you get sicker before you get better. I had this
herx sickness, which is a worsening of all symptoms, plus the addition
of some new ones for 8 months.
I could not
function at all, and lay bedridden
with my IV's dripping day after day. My blood pressure
dropped so low with the herxing that Dr. Burrascano prescribed IV fluid
bags for me to do every day, just to keep my pressure up. I dripped the
4 hours of IV saline solution and magnesium sulfate into me, followed
by the 2-hour drip of IV Zithromax.
I also had to do intramuscular
injections (Bicillin shots)
and swallow a ton of
pills. I was concurrently being treated for the
other tick infections I had, babesia and Ehrlichia. The medication for
babesia (Mepron) is an anti-malaria drug, a yellow nuclear looking
liquid I had to swallow. I did not leave my house for 9
months except
go travel to see Dr. B, with a bed in the back of the car, and my IV
bag hanging on the coat hanger of the SUV. I was too weak to do
anything except sleep. Reading was impossible, and talking
to others
made me have anxiety and panic attacks.
I started
Hyperbaric Oxygen treatment in March of 2000. My treatment
plan began with a series of 60 treatments in a monoplace (single
person) chamber. I did two treatments daily, Monday-Friday at 2.4 atm.
The first dive took a little getting used to, but I did really well
thanks to my "divers ears." The chamber was nice and comfortable with a
nice mattress to lie on, a pillow and a blanket if I needed it.
The
hyperbaric chamber was great! I could watch TV, movies,
and listen to music in
there. You have a Hyperbaric technician, a nurse and a doctor all there
for you while you do your treatment. It feels very safe. In the
beginning, all I did was sleep. It takes about 10 minutes to dive to
pressure depth, during that time you have to equalize your ears. I
found that very simple with the procedure the technicians taught me.
Once at pressure, I could sleep the entire time.
The worst of
my neurological symptoms came out during this therapy. I
had panic attacks, hallucinations, nerve pains, muscle spasms,
encephalitis, meningitis, brain swelling, herxheimer hives and fevers,
flushing, joint swelling, edema, and total exhaustion. I
grew too tired
to handle it and had to have my Mom come stay with me all the time,
feed me and help me with my IV's.
The flushing in my face was so bad it
felt like I had a severe sunburn 24-7 and it was not only
disgusting to
look at, but it hurt and I was so dizzy because all my blood was in my
skin. After the initial 6 weeks of HBOT, I went home to lie in bed
while the herx cleared (the worst it ever got, or so I thought)
hallucinations and anxiety so bad I needed a Xanax pill just to go to
the bathroom.
My hypersensitivities became so severe that I could not sit at the
table to eat. I could not handle
lights being on, cars driving by the house, any noises or sounds. Even
hearing people talking had me shrieking in pain from my brain.
All I did
besides sleep was stare at my lava lamp for hours. Those chambers made
me herx so hard, I had visible shakes and muscle twitching, rashes and
nerve pain during my dives.
Hyperbaric
Oxygen was a HUGE factor in my success. I continued with
the
treatments in the monoplace chamber for over a year. I started with 60
dives, and then did 10-15 treatments each month as maintenance. I
infused my IV an hour before each treatment to maximize the effect. I
also did hyperthermia treatments before and after each dive.
He
outlined my
treatment, consisting of IV antibiotics, hyperbaric oxygen therapy
(HBO), nutritional supplements and adequate rest. I had to undergo an
operation to have a Hickman catheter, central line put into my heart so
I could do my IV treatment at home with a nurse. Single (monoplace) Hyperbaric
Chamber VS Multiplace Chambers
Right in the middle of my treatment,
I decided to try a different type
of oxygen chamber, the multiplace (multi-person) chamber. It was less
expensive than the monoplace, and closer to home, so I gave it a try.
I
wish I never tried it! My experience in the multiplace chamber was not
pleasant. It is very different.
First of all, I was with other people,
and it was very
uncomfortable. Instead of being able to relax
and lie down, you have to sit up and wear a mask over
your head. The mask kept leaking air out of the neck gasket and
deflating on my face. The other patients in the chamber were not
instructed how to equalize their ears, and my treatments were
interrupted countless times. You cannot rest, and forget about
sleeping, that is impossible in there.
Consequently,
I got no help from those multiplace
treatments; I got no herx, and felt no effect at all. I
found out later
from Dr. B that in the multiplace chamber, I did not absorb the
pressurized oxygen through my skin, which is where spirochetes like to
hide. The hood had a design flaw, and it lost its potential
effectiveness through air leaks.
Every single
one of my multiplace
treatments were either delayed, or ruined by other
patients who were
claustrophobic, could not equalize their ears, or complained about the
pressure depth and wanted to stay at 1.7 or 2.0 atm. I needed 2.4! It
was very frustrating, and wasted a lot of time and money. Before I knew
the facts, I tried another multiplace chamber. This one was a bit
different. There was only one other patient with me who also had Lyme.
We dove to 2.4 but it never felt like it.
Again, no herxing, no
nothing! The mask was better than the hood at the first place, but it
still felt "whimpy." It is very frustrating to deal
with the lack of individual attention in a multiplace
chamber. Treatments are started and stopped so
many times it
can take hours just do do a single dive. Even though the multiplace
chamber says you are at 2.4 atm, its more like 2.0, and I could really
feel the difference. I got fed up with the lack of results,
and went back to the monoplace chamber.
WOW! WOW! WOW! Big difference. As soon as I got to pressure my herxing
began, the twitching, the nerve pains, the rashes coming back again on
my skin from the original tick bites...amazing things! It knocked me down hard, and my
herx was so powerful I needed medical
intervention to calm it down, and a break from the meds.
After 2 days
rest, I continued my dives, and did 90 more after that.
During my first few months of Lyme treatment, another medical discovery
was made. I had a tilt
table test (TTT) with
Isuprel challenge done.
This is an invasive test
done by a cardiologist. You are strapped onto
a table with your arms spread out, and the rest of you tied up in
Velcro like Hannibal Lector in "Silence of the Lambs." Your tilted
upright, strapped in and your heart and blood pressure are monitored
closely.
After that, you are given isuprel and your heart beats at its
maximum while you are lying still, kind of like that scene in "Aliens"
when
the baby alien rips its way out of the guy's chest. When my heart rate
reached 180 beats per minute, they tilted me up vertically and I passed
out in a second. My
heart rate dropped from 180 to 65 in one beat, and my BP dropped from
140/70 to 50/0 and I fainted and was out cold until they stopped the
test and administered the anecdote to the Isuprel.
It was an
exhausting
experience, basically human torture.
However, this
test turned out to
be one of the most significant tests and discoveries of my health
journey. I had a combined neurocardiogenic and vasopressor
response, a
double fail. This means that the Lyme infection has inflamed my vagus
nerve, which is the major communicator between my heart and my brain.
This inflammation caused the nerves to misfire sending the wrong
messages to the brain, to stop the heart. The treatment for the
symptoms is beta-blockers, Florinef, Zoloft, high salt diet, extra
hydration and to avoid heat and stress. All these meds made me gain
tons of weight, and its no picnic! Still, at least I could walk around
without fainting.
During this time, my blood pressure was typically
80/50 (very low) and I fainted a few times. One time I fainted in the
shower and passed out and smashed my head into the stone sink, and
sliced my scalp open. I crawled to the phone and called 911 and the
ambulance came gain, and said my
blood pressure has fallen to 70/35,
and my blood volume was dangerously low. I got 3 big bags of IV's,
talked to some more clueless doctors and went on the steroids after
that. Steroids are nasty!
They make you huge and wreck your
immune
system. When I fell
asleep for the night, I often wondered if
I would ever wake up again. It was really scary.
Many times, I felt my body ache with exhaustion so bad that it took too
much energy just to breathe. As time passed, and I kept on living, I
did 120 more hyperbaric treatments, and 9 months of IV Zithromax and
Claforan. I gradually
grew stronger, and watched happily as many of my
symptoms began to disappear.
During this particular year,
I sometimes spent months
without leaving my house and weeks without getting out of my bed.
Remember,
it
took about a year of constant therapy for me to feel
"anything." A few times during my IV therapy, I had real
bad times.
Once I was attempting to shower in my "no faint" chair and I blacked
out and smashed my head on the window and lying there alone, came back
to it, and dialed 911...again.
This fainting accident was caused by low blood pressure
again, and
the NMH had flared up, I needed more beta-blockers and
florinef. I got 2 liters of saline and more atenolol and went back
home. I do remember one vague other time when I fainted in the ER
waiting room when I took myself there for not being able to feel my own
skin and having a 101 fever. I have come to literally hate
hospitals.
I ended up switching from IV to oral antibiotics in September of 2000
due to two serious cases of blood infection (septic shock) from the IV
line. It happened
suddenly and without warning, but I got a 106 fever
and total delirium and went into septic shock (which kills most people)
because a bad, gram-negative bacterium got into my IV line. When I
started my infusion, I flushed it into my heart, and all hell broke
loose in my body.
Once again, I
called 911, threw up all over my bed, turned white,
shook uncontrollably and passed out. It is a miracle I lived.
It is an
even bigger miracle
that I could even dial 911 because most
people just
die right then and there from the sepsis. The police
kicked in my front door to
get to me, unhooked my IV's and the ambulance came and got me, and I
had emergency surgery to remove the catheter. The doctors in the ER had
no idea what was wrong with me when I first came through the doors.
They thought I had contracted west Nile virus since my temperature was
so high, 107 degrees.
The
IV's gave me Herxheimer after Herxheimer, and knocked me down hard for
what seemed like forever. The IV Zithromax got rid of many of
my most annoying and painful symptoms, but it took many months for them
to clear. Treatment for babesia took away my fevers, night sweats,
chills, flushing, hallucinations, panic attacks, and anxiety. I absolutely insisted through my
babbling valium-induced stupor that
they call Dr. Burrascano.
When
they
finally did, and he saved my life
over radio dispatch from the ambulance and he told them to "pull that
IV line right away, she has sepsis and could die! Give her IV cipro
stat!" I have never been that sick, I barely remember
calling 911 as I
shook violently and vomited all over my IV lines. It was a disaster,
period. That call saved my life because the doctors in the ER were so
stupid and Lyme illiterate, they were not even going to pull the line. You cannot
even imagine how sick I was, you don't want to, it was that
bad. I woke up packed in ice and really scared. I
remember then that my Dad
came in and I woke up.
After 2 days,
I was home with the line out, a hole in my chest, and an
appointment with the surgeon in Southampton to get another Hickman
catheter put in. To make a long story short, I had the
operation to get
the new IV line put in. This time the new IV line lasted 21 days before
I got sepsis again! The second time it happened I called
911 again, and
deteriorated over 3 minutes time to a ghost-white-faced seizuring,
dying
person.
I was rushed by ambulance to the hospital again, and this time
knew what to do, but yes, Dr. B was called and he told the ER docs what
to do and he saved my
life again! I was due for another six months of
IV, but after that Dr. B and I agreed to stop IV, and have been on oral
meds ever since. The woman who pulled out my IV yanked the catheter out
of my chest and dropped in on the floor, it hurt like hell and she was
supposed to use sterile procedure and culture the tip of the
catheter. If you
have a PICC line or a Hickman, please be
very careful, and stay alert for any sign of
sepsis. Ask your treating
doctor what to do when or if it happens!!
After the first year of IV antibiotics and HBO (hyperbaric oxygen), I
switched to oral
pills. I took a combination of Rocephin and Bicillin IM shots twice per
week, magnesium sulfate shots, and methycobalamin B-12 injections. I
continued aggressive HBO until April of 2002, after which I was well
enough to take a trip out to Colorado.
I
was so
excited to be alive
again, and feeling halfway decent too, I ended up
over-doing it big
time, and we put 3000 miles on the rental car & drove from
Denver to the Grand Canyon! I was alive again! Dr. Burrascano saved my
life! Hooray!
I over-did it big time in Colorado, and felt totally wiped out upon
return to New York. I
still say it was worth it to feel alive again in
the mountains, and not be attached to my IV pole. But,
because of this, back into the
monoplace chamber I went! I took high dose combinations of oral
antibiotics, and did hyperbaric oxygen during the week.
On a break from
my monoplace hyperbaric treatments, I
tried out a portable, mild
hyperbaric chamber that a friend of mine bought. What a
joke! It did
nothing for me, even after daily treatments. The inflatable plastic
chambers can only go to 1.3 atm. Some people even tried to convince me
that these chambers would cure me, what a laugh! What a huge waste of
money! I also tried 2 types of Rife machine, none of it
did anything.
Back to the chamber or herx power I went!
"You're STILL Sick??"
Many times
throughout the years people would say, "You're still sick?" It
drove me crazy! People do not realize, or take the time to read
about Lyme and understand it. You are not going to get better in a few
weeks to months if you have been ill for half of your life. Lyme
patients are generally treated like dirt. We get little to no respect,
and are not taken seriously because we "look" fine. This
is not the
common cold people! We have no cure yet, so stop asking us why we are
"still" sick! Fighting this disease is harder than any full time job.
You have no
idea just how
precious life is until you lose your health.
The
combination of aggressive IV and oral antibiotics,
treatment for
babesia and bartonella, and my Hyperbaric oxygen therapy made an
enormous difference in my life. I went from being a bedridden pain ball
to alive again. My quality of life improved tenfold. I can do
everything anybody else can do now; I just have to pace myself. Even
after 3 years of treatment, I had to keep on top of the
Lyme. For years, I needed antibiotics to function,
and without them, I felt terrible.
Ketek® was the last antibiotic I was on. It was powerful, and
did a
great deal of killing spirochetes!
After that, my Lyme symptoms
lessened significantly. My Lyme is so much better! I have been off
antibiotics for a long time now and doing well. I have had some gastrointestinal
problems (one of the side effects of long term
antibiotic use) but overall, I am doing well.
My stamina
and
endurance, although improved, have never returned to their pre-Lyme
strength. I still have spells of lightheadedness
and near
syncope, and brain fog
from the NMH. Ever since that
re-infection tick bite in 1999 got me, my heart has been a
mess.
The NMH, whole body inflammation, neurological
symptoms, muscle weakness, and fatigue still affect me.
Everything else I consider minor and can deal with it! I will never
give up! I am a fighter
and a determined Lyme Warrior on a quest for a
100% healthy life! I can kayak wild rivers, travel,
backpack and climb
mountains. Life is so much more grand and beautiful because of where I
have been!
A
Few More Words
From Wild
Condor
below...
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