Re: TONY -Latest RemedyFind Lyme Newsletter Link and Part 2 copy

[Guest guest]

Tony, for me it was allergies too...the first symptoms. That is what

led me to my then immunologist who dx the immune deficiency within

three months. (quick in todays comparrison)

My story is similiar to this, unfortunetly.

While a patient of dr shoemaker, I asked three times for a lyme test,

using the experience of bypacking through the mountains and being

eaten alive by mosquitos with my son as something that connected us

to our similiar symptoms. I dropped the point after dr. shoe screamed

at me that I didn't have Lyme. I didn't realize that had he tested me

and it came out positive it would have thrown a monkey wrench in his

then current study and theory. After he dropped me because his staph

phage lysate protocol gained gov attention, I went to dr. harvey and

Yes I did test positive for lyme. End result = wasted about ten

months.

Were you saying that allergies is a hallmark of beginning symptoms ?

thanks

Peg

> >

>

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]

Lanelle

These ilnesses are so transparent for me. Since the advent of

antibiotics and there rediculous prescribing bacteria have taken on

NEW TRAITS- they FIRE OFF ANTIBIOTIC DEGRADING TOXINS TO KILL OFF AN

ATTACK, this switch on, switch off mechanism isn't around for people

with normal not twisted bugs.The fact that you went to a duc that

sells CRAP and another DUC that also TALKS CRAP is no answer for WHY

YOU HAVE THE PROBLEM.

Most people are on forums because they are YUPPIES that TRIED TO

LOOK AFTER THERE HEALTH BY VISISTING DUCS and spending the dollars

to save teeth as opposed to pulling teeth.Everything your health

care proffesional or doctor do for you is DANGEROUS, my own doctor

at 65 years of age TAKES NOTHING not even an advil when he gets a

headache, they virtually don't beleieve in the crap they use on

there patients because as I firmnly believe most treatents build

resistance very quickly.

> > >

> >

>

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