Re: Latest RemedyFind Lyme Newsletter Link and Part 2 copy

[Guest guest]

Interesting how she had ALLERGIES before anything else hit.

Allergies to me are antibiotic resistance that flare when your bugs

are being pestered by the environment.Asthma is also the c;assical

finding before autoimmune sets in.

tony

>

http://www.remedyfind.com/newsletter_archives/Jun_05_LymeDisease.html

>

>

> My Lyme Disease Story - Fourteen Years and Ticking

>

> Welcome. My name is , and I have Lyme disease. Before I got

Lyme, I was

> a mountain climber, athlete, kayaker, woods woman,

environmentalist & full

> of energy! I had just graduated college with my Bachelor's degree

in

> Environmental science. I had an exiting career path set out for

me, full of

> endless opportunities in ecology, wetlands, forest ecology,

microbiology,

> soil science, and environmental action. Every day since I learned

how to

> walk, I have been outside, in the woods, working outdoors, playing

outdoors,

> and every chance I got, I sleeping outdoors. Nature and wilderness

are my

> passion, and they always will be. My yard is full of deer, and

there are at

> least 50 deer for every human where I live, an endemic area. As a

child, I

> lived for the woods, building tree forts, camping outside,

wandering for

> hours in the woods, a total tomboy. I was the only kid in my class

to get

> the award for perfect attendance, and was never sick a day in my

life. I

> camped out under the stars more nights than I slept in a bed, and

loved

> every minute of it. I bushwhacked up mountain trails, always

seeking the

> pass less taken. I worked for the Conservation Corps in the

summer, blazing

> trails all day long, working in thick, dense wooded areas. Ticks

were

> crawling all over us constantly. At lunchtime, we would take off

our work

> gloves, and flick them off our arms. When we got home at night, we

would

> then take the tweezers, and pull them out of our bodies, by the

dozens. Back

> then, what was Lyme disease?

>

> Now I know! It is a deadly disease lurking in our backyards. It is

spreading

> all over the USA and the rest of the world. Birds, mice, deer,

pets, they

> are all carriers. Even once Lyme disease was recognized, it was

common

> knowledge that it was " easily treated with a couple weeks of

antibiotics " so

> what is the big risk with that? Then I said, " great, I can use

preventive

> care! " Ideally, we would have had all our skin covered with thick

fabric to

> avoid being bitten. Go ahead, you try to wear thick white cotton

in the 90

> degree heat and humidity of a NY July day, sweating in the sun,

chopping

> logs apart to make trail linings and skree walls. Oh, and I cant

forget to

> mention, the fact that I am anaphylactically allergic to bug

spray. After

> using DEET and Deep Woods OFF, Cutters all that stuff, all the

time, all

> summer long, I started getting skin reactions to the stuff. One

afternoon, I

> swelled up like a hot air balloon, with hives all over my body

from the bug

> spray. Now if it even comes near me the reaction starts with the

itchy hives

> So much for prevention.

>

> So, what was a nature-loving teenager to do? Should I spend all

summer

> indoors? Forget that idea! The outdoors is my life! So, now for

the recipe

> for disaster. Take one healthy human, place in outdoors, on grass,

or in the

> woods, expose skin, bite skin daily, suck on skin, exchange

fluids, become

> host for parasitic organism, let bacteria replicate, slowly simmer

for 10

> years, add steroids to wreck immune system, bite again, add

secondary

> infections, viruses, parasites, and piroplasms, enter babesiosis,

the second

> tick-borne illness to become an unwelcome guest in . Bite

again,

> receive inadequate treatment, add bartonella, the fourth tick

infection I

> have. Add a camping trip, another summer of trail work, and a few

dozen more

> tick bites, bring no bug spray, add in some Ehrlichiosis, and a

few more

> strains of Lyme, bring to a rolling boil, try to survive as a host

organism!

> So when people ask me how I got infected, I tell them I have been

bitten

> over a hundred times. Do you people ever go outside and enjoy

nature? Daily

> exposure + endemic area + bug spray allergy + time outdoors=

infection It

> adds up doesn't it?

>

> Early signs of Lyme disease can include flu-like symptoms

(headache, fever,

> muscle aches, joint pain and fatigue) and a possibly a Lyme rash.

Most

> symptoms show up days or weeks and occasionally months following

infection.

> The Lyme rash is referred to as erythema migrans or EM. Most

doctors will

> look at a red bump and call it a spider bite. It is important to

remember

> that the rash may not show up at all, or it may appear too light

in color to

> be noticed. The rash can be shaped like a bulls-eye, it can be

smooth or

> bumpy, it may or may not feel warm, and there can be multiple

rashes that

> can appear at the site of the tick bite or elsewhere on the body.

I had

> rashes, 5 EMs, bulls-eyes. The doctors gave me 10 days of

doxycycline, told

> me I was cured, over and over.

>

> I started to struggle with fatigue in my early teens. I needed so

much sleep

> and I felt tired all day long. All I wanted to do was sleep. It

took me

> about 3 months before my tiredness became severe enough to see a

doctor.

> They told me I had mononucleosis, even though my tests were all

negative. My

> Lyme disease test was positive, and they gave me 2 weeks of

doxycycline. I

> took all the pills even though it really hurt my stomach. I felt

better for

> about 2 months and then I crashed again. My system was fighting

off the Lyme

> even then, and it simmered there like that for the next 8 years.

>

> After another couple doctors, I was told I had chronic fatigue

syndrome

> (CFS), and there was no cure. Okay, I now understood what I had,

and the

> years passed by, overwhelming fatigue, infection...brewing. If I

had only

> known what was about to happen. Once infection becomes

established, symptoms

> of Lyme disease may include; pain in muscles and joints, fatigue,

swollen

> glands, fever, upset stomach, headache, forgetfulness, sleep

disorders,

> depression, and sensitivity to light and sound. What happened to

me? My Lyme

> disease went on for 10 years undetected, undiagnosed and

untreated. The

> bacteria spread deep into my brain and all over my central nervous

system,

> my heart and other organs, tendons and joints. This late-stage

infection can

> result in a wide variety of physical, emotional, and mental or

cognitive

> symptoms. I would rather take my chances with cancer than have

this disease,

> just as I would gladly have an arm or leg amputated if I could be

cured. Its

> is important to remember that every person is different. Some

people may get

> a rash, some may not. Some people may get joint pain, some may

not. Some

> people may get a fever, some may not. There are so many different

strains of

> Lyme disease, and each person may have one, or many different

strains. Some

> people may get just Lyme disease. Some people will get Lyme +

babesia. Some

> people just come down with Ehrlichia. Some people will be unlucky

enough to

> have 4 or more infections at one time (like me). Everyone is

different and

> everyone should be treated as an individual. Many times a person

may not

> remember being bit by a tick. Since it is a relatively new disease

discovery

> scientists and doctors still have no idea what other insects

carry these

> diseases, scientific research is lacking, and anything is possible.

>

> Another important point to make is that you may not get sick right

away.

> Everyone has a different immune system. Some people may get bit in

June, and

> feel perfectly fine until a sinus infection in October, and then

they are

> tired all the time. Some people may come down with a fever and

chills the

> day of the tick bite, some may not. It is very easy to forget

being bitten,

> and to rule it out as time goes by. Sometimes our bodies are

strong enough

> to not show symptoms, again, everyone is different. When you are

bitten, you

> should be treated the same day. The biggest mistake is the " wait

and see "

> approach. For any known tick bite, you must be treated

aggressively with

> antibiotics promptly. You should also take a picture of any rash

you might

> get. If you are treated promptly, you may never get a rash. You

may also

> feel better right away, and then have symptoms creep back slowly

months to

> years later because the disease was not completely killed by the

antibiotics

>

>

> Borrelia Burgdorferi, the Lyme disease germ, is one tough bug to

kill. You

> also must be checked for co-infections. One tick bite can bring

multiple

> infections. If you are still feeling sick after a good strong dose

of

> antibiotics, you either did not kill the bug completely; you have

one or

> more co-infections, or both. I cannot stress enough the importance

of being

> tested for co-infections, and working with a doctor who treats

Lyme disease

> as his/her main practice. We call these doctors LLMD's, which

stands for

> Lyme literate medical doctor. I would say based on experience,

that 95% of

> primary care physicians and family doctors have no idea what they

are doing

> concerning Lyme disease and co-infections. They will probably look

at you

> like you are crazy, misdiagnose and under treat you, not treat you

at all,

> or try to send you to a shrink. Lyme disease is everywhere! It is

very

> serious and it is spreading all over the world. It is really

difficult to

> find a good Lyme disease treating doctor if you are located out in

the

> middle of nowhere, or off the east coast of the United States.

There are a

> few LLMD's out there, but it's not easy to find one. If you have a

difficult

> case, and you are far away from NY, CT, and PA, consider flying in

to see

> one of the best doctors, nothing is more important than your

health.

>

> If you go untreated for weeks, months or years, the late-stage

list of

> symptoms is long and confusing. Symptoms include arthritis, heart

> abnormalities, Bell's palsy (paralysis of one or both sides of the

face) and

> severe cognitive or mental dysfunction including memory loss,

confusion, and

> psychiatric problems. Lyme disease is often referred to as

the " great

> pretender " because the symptoms of Lyme disease can so closely

mimic the

> symptoms of other diseases. Lyme patients have been misdiagnosed

with

> chronic fatigue syndrome CFS/CFIDS, fibromyalgia, lupus, multiple

sclerosis

> (MS), rheumatoid arthritis (RA), depression, Alzheimer's disease,

and Lou

> Gehrig's disease (ALS). I was misdiagnosed with all of these but

Alzheimer's

> My symptoms included: low energy, poor stamina, sore throat,

unexplained

> menstrual irregularity, upset stomach, abdominal pain, chest pain,

rib

> soreness, shortness of breath, cough, heart palpitations, pulse

skips, heart

> murmur, joint pain, joint swelling, stiffness of the joints all

over my body

> muscle pain and cramping, twitching of the face or other muscles,

neck

> pinches and cracks, neck stiffness, neck pain, tingling, numbness,

burning

> or stabbing sensations, shooting pains, skin hypersensitivity,

facial

> paralysis, (Bell's palsy), double, blurry, increased floaters,

light

> sensitivity, buzzing, ringing, ear pain, sound sensitivity,

increased motion

> sickness, vertigo, major facial flushing and bizarre skin rashes,

poor

> balance, lightheadedness, wooziness, panic attacks, anxiety,

tremors,

> confusion, difficulty in thinking, difficulty with concentration,

> forgetfulness, poor short term memory, poor attention,

disorientation,

> getting lost, going to wrong places, difficulty with speech or

writing, mood

> swings, irritability, depression, disturbed sleep, too much sleep,

too

> little sleep, the overwhelming need to sleep for 4 hours every

afternoon,

> and a complete intolerance to alcohol. I believe I had every

symptom you can

> have with the exception of testicular pain and impotence.

>

> Many Lyme patients fail to receive any kind of definitive

diagnosis 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. 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 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. 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.

>

> 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 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 appear drunk, or so it may seem.

>

> A " herx " , 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 antibiotic 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 in 2004. 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 wont 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, for me

it felt

> like shooting and stabbing pains from head to toe.

>

> 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. 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, everything 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.

>

> 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 '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 that I should see a shrink. 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, 100 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 that I needed a shrink.

>

> 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%. My adrenal glands were

shot and

> not producing cortisol, and I was diagnosed with '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.

>

> 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,

> 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!

>

>

> The day my journey of pain and suffering, misunderstanding and

abandonment

> came to a halt was the day I walked into the office of Dr. ph

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.

>

> I cried tears of joy! Finally, someone had listened to me, and

finally I

> found a doctor who understood this awful disease. 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. 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.

>

> I started on IV antibiotics on new years 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 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 IM 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 HBO in March of 2000. 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 IVs. 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 3 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. 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 people talking had me shrieking

in pain

> from my brain. All I did besides sleep was stare at my lava lamp

for hours.

>

> 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 over 125

> 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 year, I sometimes spent months without

leaving my

> house and weeks without getting out of my bed. The IV's gave me

Herxheimer

> after Herxheimer, and knocked me down hard for what seems 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.

>

> Remember, it took about a year of constant therapy for me to

feel " anything.

> 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. If you have a PICC

line or a

> Hickman, please be very careful, and alert for any sign of sepsis.

Ask your

> treating doctor what to do when or if it happens!!

>

> It has been three years since I began Lyme disease treatment.

After the

> first year of IV antibiotics and HBO, I switched to oral pills. I

have been

> taking a combination of rocephin and bicillin IM shots twice per

week,

> magnesium sulfate shots, methycobalamin B-12 injections, and

stomach meds

> for h.pylori. On a " good day " , I am 60% functional. On a bad day,

I cannot

> handle anything but being in bed. The steroids and beta-blockers I

am on

> make me gain weight, but if I go off them, I feel so much worse.

It gets

> very frustrating, daily life, and such uncertainty. I continued

HBO until

> April of 2001, after which I was well enough to take a trip out to

Colorado.

> I was so exited to be alive again, and feeling halfway decent too,

I ended

> up over doing it big time, and put 3000 miles on the rental car &

drove from

> Denver to the grand canyon! I was alive again! Dr. Burrascano

saved my life!

> Hooray!

>

> Lyme disease is still active in my body since I was reinfected so

many times

> and had it untreated for 10 years, I am still on oral antibiotics,

and see

> Dr. Burrascano every 7 -8 weeks. I can now drive myself out to

East Hampton,

> and back in one day! I still get very tired, and still need my 10-

12 hours

> of sleep every night! I am still unable to kayak, or do aerobic

exercise,

> but I am 100% determined to get back to my life! I am still

fighting Lyme

> and more recently bartonella and helicobacter pylori, or h. pylori

is a

> stomach bacteria that has made me feel nausea, pain, cramping,

bloating and

> dizzy for most of 2003. My joint pain had increased in 2003, and

I need

> painkillers now to get through the day. It is not easy, and it is

very

> frustrating when people say, " you're still sick? " it drives 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.

>

> I am now a dedicated Lyme activist working hard to spread the word

to others

> who are suffering from this life-sucking beast of an illness. As

the dearly

> departed Reeve said, I am " Still me. " Only stronger! I

am still

> the same person, I just have limitations. I have made some

wonderful friends

> who I love dearly, who also have Lyme. We look out for each other,

and take

> care of each other, offer support and inspiration. I spend hours

each day

> helping others. My outlook on life has changed very much. I feel

very lucky

> to have been saved, and even though I am by no means " cured, " I

am very

> grateful to be alive. It is amazing that I am even here! How am I

even

> alive? Sepsis not once, but twice, triple infections, bacterial

pneumonia

> twice, meningitis, encephalitis, car crashes, wow! I like to

surround

> myself with people, who respect and appreciate life, like to have

fun, laugh

> have open hearts, and never diminish your dreams no matter how

bad it gets.

> Remember, if you have hope, you have everything.

> Top

>

>

>

> 3. Need Your Help

> Please take a couple of minutes to help others with Lyme Disease.

Click RATE

> IT next to any of these that you have tried.

> Have you tried any of these treatments?

> Antibiotic Therapy: Biaxin etc. (Clarithromycin)

> Antibiotic Therapy: Doryx etc. (Doxycycline)

> Antibiotic Therapy: Rocephin etc. (Ceftriaxone)

> Combination Therapy (Antibiotic; Antiprotozoal): Azithromycin;

> Hydroxychloroquine

> Diagnostic Testing: IgG Western Blot Test (IGeneX Criteria)

> Diagnostic Testing: IgM Western Blot Test (IGeneX Criteria)

> Diagnostic Testing: Polymerase Chain Reaction (PCR)

> Electromedicine: Rife / etc. (Intestinal Parasite Zappers)

> Samento etc. / TOA-free Cat's Claw (Uncaria tomentosa)

> Vitamin B-12: Injections

>

> Visit the Lyme Disease home page to see how these and other

treatments have

> been rated.

>

> Top

[Guest guest]

Another classic oversight with this observation of strictly lyme is

that you will get multiple species of staph bacteria from ticks

transferring deer bacteria. Every deer has staph bacteria so your

possably getting more than you bargain for and when there's no

spirochetes to be seen this may be the reason.

Transferring skin bacteria staph epidermis/staph areus would be a

smart thing to look for in spots of constant bother, even the

original tick bite site may have colonies of staph areus.

>

http://www.remedyfind.com/newsletter_archives/Jun_05_LymeDisease.html

>

>

> My Lyme Disease Story - Fourteen Years and Ticking

>

> Welcome. My name is , and I have Lyme disease. Before I got

Lyme, I was

> a mountain climber, athlete, kayaker, woods woman,

environmentalist & full

> of energy! I had just graduated college with my Bachelor's degree

in

> Environmental science. I had an exiting career path set out for

me, full of

> endless opportunities in ecology, wetlands, forest ecology,

microbiology,

> soil science, and environmental action. Every day since I learned

how to

> walk, I have been outside, in the woods, working outdoors, playing

outdoors,

> and every chance I got, I sleeping outdoors. Nature and wilderness

are my

> passion, and they always will be. My yard is full of deer, and

there are at

> least 50 deer for every human where I live, an endemic area. As a

child, I

> lived for the woods, building tree forts, camping outside,

wandering for

> hours in the woods, a total tomboy. I was the only kid in my class

to get

> the award for perfect attendance, and was never sick a day in my

life. I

> camped out under the stars more nights than I slept in a bed, and

loved

> every minute of it. I bushwhacked up mountain trails, always

seeking the

> pass less taken. I worked for the Conservation Corps in the

summer, blazing

> trails all day long, working in thick, dense wooded areas. Ticks

were

> crawling all over us constantly. At lunchtime, we would take off

our work

> gloves, and flick them off our arms. When we got home at night, we

would

> then take the tweezers, and pull them out of our bodies, by the

dozens. Back

> then, what was Lyme disease?

>

> Now I know! It is a deadly disease lurking in our backyards. It is

spreading

> all over the USA and the rest of the world. Birds, mice, deer,

pets, they

> are all carriers. Even once Lyme disease was recognized, it was

common

> knowledge that it was " easily treated with a couple weeks of

antibiotics " so

> what is the big risk with that? Then I said, " great, I can use

preventive

> care! " Ideally, we would have had all our skin covered with thick

fabric to

> avoid being bitten. Go ahead, you try to wear thick white cotton

in the 90

> degree heat and humidity of a NY July day, sweating in the sun,

chopping

> logs apart to make trail linings and skree walls. Oh, and I cant

forget to

> mention, the fact that I am anaphylactically allergic to bug

spray. After

> using DEET and Deep Woods OFF, Cutters all that stuff, all the

time, all

> summer long, I started getting skin reactions to the stuff. One

afternoon, I

> swelled up like a hot air balloon, with hives all over my body

from the bug

> spray. Now if it even comes near me the reaction starts with the

itchy hives

> So much for prevention.

>

> So, what was a nature-loving teenager to do? Should I spend all

summer

> indoors? Forget that idea! The outdoors is my life! So, now for

the recipe

> for disaster. Take one healthy human, place in outdoors, on grass,

or in the

> woods, expose skin, bite skin daily, suck on skin, exchange

fluids, become

> host for parasitic organism, let bacteria replicate, slowly simmer

for 10

> years, add steroids to wreck immune system, bite again, add

secondary

> infections, viruses, parasites, and piroplasms, enter babesiosis,

the second

> tick-borne illness to become an unwelcome guest in . Bite

again,

> receive inadequate treatment, add bartonella, the fourth tick

infection I

> have. Add a camping trip, another summer of trail work, and a few

dozen more

> tick bites, bring no bug spray, add in some Ehrlichiosis, and a

few more

> strains of Lyme, bring to a rolling boil, try to survive as a host

organism!

> So when people ask me how I got infected, I tell them I have been

bitten

> over a hundred times. Do you people ever go outside and enjoy

nature? Daily

> exposure + endemic area + bug spray allergy + time outdoors=

infection It

> adds up doesn't it?

>

> Early signs of Lyme disease can include flu-like symptoms

(headache, fever,

> muscle aches, joint pain and fatigue) and a possibly a Lyme rash.

Most

> symptoms show up days or weeks and occasionally months following

infection.

> The Lyme rash is referred to as erythema migrans or EM. Most

doctors will

> look at a red bump and call it a spider bite. It is important to

remember

> that the rash may not show up at all, or it may appear too light

in color to

> be noticed. The rash can be shaped like a bulls-eye, it can be

smooth or

> bumpy, it may or may not feel warm, and there can be multiple

rashes that

> can appear at the site of the tick bite or elsewhere on the body.

I had

> rashes, 5 EMs, bulls-eyes. The doctors gave me 10 days of

doxycycline, told

> me I was cured, over and over.

>

> I started to struggle with fatigue in my early teens. I needed so

much sleep

> and I felt tired all day long. All I wanted to do was sleep. It

took me

> about 3 months before my tiredness became severe enough to see a

doctor.

> They told me I had mononucleosis, even though my tests were all

negative. My

> Lyme disease test was positive, and they gave me 2 weeks of

doxycycline. I

> took all the pills even though it really hurt my stomach. I felt

better for

> about 2 months and then I crashed again. My system was fighting

off the Lyme

> even then, and it simmered there like that for the next 8 years.

>

> After another couple doctors, I was told I had chronic fatigue

syndrome

> (CFS), and there was no cure. Okay, I now understood what I had,

and the

> years passed by, overwhelming fatigue, infection...brewing. If I

had only

> known what was about to happen. Once infection becomes

established, symptoms

> of Lyme disease may include; pain in muscles and joints, fatigue,

swollen

> glands, fever, upset stomach, headache, forgetfulness, sleep

disorders,

> depression, and sensitivity to light and sound. What happened to

me? My Lyme

> disease went on for 10 years undetected, undiagnosed and

untreated. The

> bacteria spread deep into my brain and all over my central nervous

system,

> my heart and other organs, tendons and joints. This late-stage

infection can

> result in a wide variety of physical, emotional, and mental or

cognitive

> symptoms. I would rather take my chances with cancer than have

this disease,

> just as I would gladly have an arm or leg amputated if I could be

cured. Its

> is important to remember that every person is different. Some

people may get

> a rash, some may not. Some people may get joint pain, some may

not. Some

> people may get a fever, some may not. There are so many different

strains of

> Lyme disease, and each person may have one, or many different

strains. Some

> people may get just Lyme disease. Some people will get Lyme +

babesia. Some

> people just come down with Ehrlichia. Some people will be unlucky

enough to

> have 4 or more infections at one time (like me). Everyone is

different and

> everyone should be treated as an individual. Many times a person

may not

> remember being bit by a tick. Since it is a relatively new disease

discovery

> scientists and doctors still have no idea what other insects

carry these

> diseases, scientific research is lacking, and anything is possible.

>

> Another important point to make is that you may not get sick right

away.

> Everyone has a different immune system. Some people may get bit in

June, and

> feel perfectly fine until a sinus infection in October, and then

they are

> tired all the time. Some people may come down with a fever and

chills the

> day of the tick bite, some may not. It is very easy to forget

being bitten,

> and to rule it out as time goes by. Sometimes our bodies are

strong enough

> to not show symptoms, again, everyone is different. When you are

bitten, you

> should be treated the same day. The biggest mistake is the " wait

and see "

> approach. For any known tick bite, you must be treated

aggressively with

> antibiotics promptly. You should also take a picture of any rash

you might

> get. If you are treated promptly, you may never get a rash. You

may also

> feel better right away, and then have symptoms creep back slowly

months to

> years later because the disease was not completely killed by the

antibiotics

>

>

> Borrelia Burgdorferi, the Lyme disease germ, is one tough bug to

kill. You

> also must be checked for co-infections. One tick bite can bring

multiple

> infections. If you are still feeling sick after a good strong dose

of

> antibiotics, you either did not kill the bug completely; you have

one or

> more co-infections, or both. I cannot stress enough the importance

of being

> tested for co-infections, and working with a doctor who treats

Lyme disease

> as his/her main practice. We call these doctors LLMD's, which

stands for

> Lyme literate medical doctor. I would say based on experience,

that 95% of

> primary care physicians and family doctors have no idea what they

are doing

> concerning Lyme disease and co-infections. They will probably look

at you

> like you are crazy, misdiagnose and under treat you, not treat you

at all,

> or try to send you to a shrink. Lyme disease is everywhere! It is

very

> serious and it is spreading all over the world. It is really

difficult to

> find a good Lyme disease treating doctor if you are located out in

the

> middle of nowhere, or off the east coast of the United States.

There are a

> few LLMD's out there, but it's not easy to find one. If you have a

difficult

> case, and you are far away from NY, CT, and PA, consider flying in

to see

> one of the best doctors, nothing is more important than your

health.

>

> If you go untreated for weeks, months or years, the late-stage

list of

> symptoms is long and confusing. Symptoms include arthritis, heart

> abnormalities, Bell's palsy (paralysis of one or both sides of the

face) and

> severe cognitive or mental dysfunction including memory loss,

confusion, and

> psychiatric problems. Lyme disease is often referred to as

the " great

> pretender " because the symptoms of Lyme disease can so closely

mimic the

> symptoms of other diseases. Lyme patients have been misdiagnosed

with

> chronic fatigue syndrome CFS/CFIDS, fibromyalgia, lupus, multiple

sclerosis

> (MS), rheumatoid arthritis (RA), depression, Alzheimer's disease,

and Lou

> Gehrig's disease (ALS). I was misdiagnosed with all of these but

Alzheimer's

> My symptoms included: low energy, poor stamina, sore throat,

unexplained

> menstrual irregularity, upset stomach, abdominal pain, chest pain,

rib

> soreness, shortness of breath, cough, heart palpitations, pulse

skips, heart

> murmur, joint pain, joint swelling, stiffness of the joints all

over my body

> muscle pain and cramping, twitching of the face or other muscles,

neck

> pinches and cracks, neck stiffness, neck pain, tingling, numbness,

burning

> or stabbing sensations, shooting pains, skin hypersensitivity,

facial

> paralysis, (Bell's palsy), double, blurry, increased floaters,

light

> sensitivity, buzzing, ringing, ear pain, sound sensitivity,

increased motion

> sickness, vertigo, major facial flushing and bizarre skin rashes,

poor

> balance, lightheadedness, wooziness, panic attacks, anxiety,

tremors,

> confusion, difficulty in thinking, difficulty with concentration,

> forgetfulness, poor short term memory, poor attention,

disorientation,

> getting lost, going to wrong places, difficulty with speech or

writing, mood

> swings, irritability, depression, disturbed sleep, too much sleep,

too

> little sleep, the overwhelming need to sleep for 4 hours every

afternoon,

> and a complete intolerance to alcohol. I believe I had every

symptom you can

> have with the exception of testicular pain and impotence.

>

> Many Lyme patients fail to receive any kind of definitive

diagnosis 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. 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 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. 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.

>

> 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 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 appear drunk, or so it may seem.

>

> A " herx " , 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 antibiotic 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 in 2004. 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 wont 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, for me

it felt

> like shooting and stabbing pains from head to toe.

>

> 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. 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, everything 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.

>

> 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 '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 that I should see a shrink. 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, 100 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 that I needed a shrink.

>

> 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%. My adrenal glands were

shot and

> not producing cortisol, and I was diagnosed with '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.

>

> 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,

> 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!

>

>

> The day my journey of pain and suffering, misunderstanding and

abandonment

> came to a halt was the day I walked into the office of Dr. ph

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.

>

> I cried tears of joy! Finally, someone had listened to me, and

finally I

> found a doctor who understood this awful disease. 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. 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.

>

> I started on IV antibiotics on new years 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 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 IM 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 HBO in March of 2000. 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 IVs. 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 3 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. 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 people talking had me shrieking

in pain

> from my brain. All I did besides sleep was stare at my lava lamp

for hours.

>

> 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 over 125

> 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 year, I sometimes spent months without

leaving my

> house and weeks without getting out of my bed. The IV's gave me

Herxheimer

> after Herxheimer, and knocked me down hard for what seems 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.

>

> Remember, it took about a year of constant therapy for me to

feel " anything.

> 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. If you have a PICC

line or a

> Hickman, please be very careful, and alert for any sign of sepsis.

Ask your

> treating doctor what to do when or if it happens!!

>

> It has been three years since I began Lyme disease treatment.

After the

> first year of IV antibiotics and HBO, I switched to oral pills. I

have been

> taking a combination of rocephin and bicillin IM shots twice per

week,

> magnesium sulfate shots, methycobalamin B-12 injections, and

stomach meds

> for h.pylori. On a " good day " , I am 60% functional. On a bad day,

I cannot

> handle anything but being in bed. The steroids and beta-blockers I

am on

> make me gain weight, but if I go off them, I feel so much worse.

It gets

> very frustrating, daily life, and such uncertainty. I continued

HBO until

> April of 2001, after which I was well enough to take a trip out to

Colorado.

> I was so exited to be alive again, and feeling halfway decent too,

I ended

> up over doing it big time, and put 3000 miles on the rental car &

drove from

> Denver to the grand canyon! I was alive again! Dr. Burrascano

saved my life!

> Hooray!

>

> Lyme disease is still active in my body since I was reinfected so

many times

> and had it untreated for 10 years, I am still on oral antibiotics,

and see

> Dr. Burrascano every 7 -8 weeks. I can now drive myself out to

East Hampton,

> and back in one day! I still get very tired, and still need my 10-

12 hours

> of sleep every night! I am still unable to kayak, or do aerobic

exercise,

> but I am 100% determined to get back to my life! I am still

fighting Lyme

> and more recently bartonella and helicobacter pylori, or h. pylori

is a

> stomach bacteria that has made me feel nausea, pain, cramping,

bloating and

> dizzy for most of 2003. My joint pain had increased in 2003, and

I need

> painkillers now to get through the day. It is not easy, and it is

very

> frustrating when people say, " you're still sick? " it drives 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.

>

> I am now a dedicated Lyme activist working hard to spread the word

to others

> who are suffering from this life-sucking beast of an illness. As

the dearly

> departed Reeve said, I am " Still me. " Only stronger! I

am still

> the same person, I just have limitations. I have made some

wonderful friends

> who I love dearly, who also have Lyme. We look out for each other,

and take

> care of each other, offer support and inspiration. I spend hours

each day

> helping others. My outlook on life has changed very much. I feel

very lucky

> to have been saved, and even though I am by no means " cured, " I

am very

> grateful to be alive. It is amazing that I am even here! How am I

even

> alive? Sepsis not once, but twice, triple infections, bacterial

pneumonia

> twice, meningitis, encephalitis, car crashes, wow! I like to

surround

> myself with people, who respect and appreciate life, like to have

fun, laugh

> have open hearts, and never diminish your dreams no matter how

bad it gets.

> Remember, if you have hope, you have everything.

> Top

>

>

>

> 3. Need Your Help

> Please take a couple of minutes to help others with Lyme Disease.

Click RATE

> IT next to any of these that you have tried.

> Have you tried any of these treatments?

> Antibiotic Therapy: Biaxin etc. (Clarithromycin)

> Antibiotic Therapy: Doryx etc. (Doxycycline)

> Antibiotic Therapy: Rocephin etc. (Ceftriaxone)

> Combination Therapy (Antibiotic; Antiprotozoal): Azithromycin;

> Hydroxychloroquine

> Diagnostic Testing: IgG Western Blot Test (IGeneX Criteria)

> Diagnostic Testing: IgM Western Blot Test (IGeneX Criteria)

> Diagnostic Testing: Polymerase Chain Reaction (PCR)

> Electromedicine: Rife / etc. (Intestinal Parasite Zappers)

> Samento etc. / TOA-free Cat's Claw (Uncaria tomentosa)

> Vitamin B-12: Injections

>

> Visit the Lyme Disease home page to see how these and other

treatments have

> been rated.

>

> Top