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FLORIDA
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Paula Arenz - I was dx with RA
December 2005 when I experienced extreme joint pain in my feet,
ankles, hands and knees. Started treatment with IBU then switched to
celebrex. Was tested for Heavy metal toxicity...and tests came back
positive for multiple metals, i.e. tin, mercury etc. Had 60+ IV
chelations done...and no improvement in condition and actually
getting worse-neurotransmitters all messed up, anxiety, panic
attacks, not able to sleep, cronic fatigue, could not drive, nausea,
nutrionally depleated, hair falling out, skin color grey, cried all
the time, depressed, unable to be left alone and take care of
myself..... Changed doctors ....and my new Doctor, thank God,
suggested I be tested for LYME....at that time I had no clue what
LYME was. My test came back Positive in august 2006...so I started
oral abx, along with IV nutritionals, plaquinil and areophyto
therapy.... Today all my symptoms have totally disapeared except for
my RA...which seems to be at lease not progressing ..... I have
currently switched to a vegan diet and hoping this is the fiinal
piece to this puzzle. Today I am driving, playing with my
grandchildren, cooking, traveling with my hubsand, enjoying 90% of
what I used to do. So there is hope....God is GOOD.....KEEP
SEARCHING FOR WHAT WORKS....it seems every LYME case is unique and
different.
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John Branch
- Tick bite in Bay County, FL late 2008. Menengio-encephalitis
infection with psychological, cardiac symptoms and tertiary relapse.
(ocd, dementia, panic attacks,muscular ticks, auditory/visual
hallucinations, insomnia, various levels of catatonia to coma for
weeks, tachycardia) cutaneous neck infection with rash, two positive
elisa's (from different labs), cdc positive western blot(igenx), CD
57 stricker of "4", two 1 cm white matter lesions after 1 year MRI,
raised WBC, raised fever, elevated LP, several false neg lyme tests.
9 months of daily IV abx, 3 hospitalizations= 1 wk(UAB), 3 wk(Bay
Med), 9 wks(NYPCorneil), 11 ECTs, 40 HBOTs @ 2.8 ata. Currently 95%
restored..completing HBOT 5/23/2010
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Karen Duffy - Sometimes do not know where to begin. When I was
helping, volunteering, when able. I listened to 100`s of stories. I
wanted each time to cry from the loses to frustration, treatment
from med. prof, family, friends. Then had to sit back each 1 their
story was mine. Reading the forgotten I fit in most of this. What
incite. ALL TRUE.... Have been a guinea pig many times, work with
numerous groups connecting the dots of many names to illnesses, from
FM/MS/ME/ALS/Lupus/Parkinson's, etc. No diff than cancer, lymphoma,
brain tumors, numerous other names, fast kind slow moving++++. Same
here a link, probably mycoplasma let out yrs. ago by Govt. for bio
terrorism. 2 types let out, 1 that killed right away. Other let you
keep just enough alive you do not want to be. Also side effects
eventually kills, lost few close to me. Yet, not on death cert. real
cause root of tree probably from yrs. research mycoplasma, branched
off. Spirochete form developed some how, it can mutate on own, needs
no host, hides deep, changes to hide from treatment. It is so bad,
growing faster in world than any other problem. I was mis-dxed for
over 10 yrs. Now from an active jock, business owner, non-stop
schooling. Volunteer moocho hrs. to a BLOB. Why women over men, for
some reason tests have proven testosterone is 1 thing that is a
protect-ant, chetes can't break through. Until men get to 50, then
knee prob., heart, neuro, all places likes to hide, after
testosterone diminishes. Most of the names whatever you want to
call, years ago told women they had housewives syndrome. DUH, what
is that same as growing pain when you are not growing, DUH????
My info is lengthy some from whistle blowers. THE TRUTH from
innocent eyes. How sad we let millions with no treatment. Just to
hide the Real TRUTH. It has taken me & my life as I ever knew it. NO
ONE CARES, I can moan all day in pain alone, an animal we cuddle,
hug stroke. I have to force food down, nausea has become so bad. I
am not alone should USE WE. List way tooooooo long to list. I ASK IS
THIS HUMANE????? Not even proper pain meds this will turn against
docs if Leaders Against pain keeps pushing. I won a scholarship to
meet with TOP Drs. who care from around the world. Too sick to make,
made me very sad to lose such opportunity with all my hard work with
no energy to really do. MILLIONS NEED HELP NOW, this is waaaaay out
control.
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Sandi Lanford - My story is one of Chronic Lyme Disease. It
started at a very early age when suddenly a rash appeared on the
palms of my hands and feet. I was just 12 years old. My parents took
me to a pediatrician who must have thought I had Syphillus because
he put me on
antibiotics. They worked and the rash disappeared, but after that I
suffered with mild panic attacks, fatigue, and mild depression. I
also had problems with dyslexia. No one paid any attention to my
complains, so I struggled alone silently for several years. Then at
21 years of age I got staff infection. It spread from my hand to my
leg to my ears. I was put on IV antibiotics in the hospital and
stayed on oral antibiotics for over a year. Then one day I was well
and felt better than I ever remembered feeling. I decided to go to
college. I was an A student in college, and graduated in three
years. I got married and worked for about ten years before I had my
first child at age 37. I had tried to get pregnant but was told by a
doctor I probably would never have a child. At the time I got
pregnant I had just started taking Shaklee vitamins, and was working
at a Spa. I was in good health and felt good. My baby was born very
health, but I couldn't get my strength back and started having aches
and pains, fatigue, and sleeplessness. Fast forward.....I was
diagnosed with Chronic Fatigue, Fibromyalgia and finally LUPUS. For
27 years I suffered living a sub-normal life....I would explain it
as feeling like I was pushing a wheel barrel filled with rocks up a
hill. Then a miracle happened! Dr. Whitaker, the developer of the
Bowen Q-RIBb test for Lyme disease walked into my kitchen. She had
been invited by Florida State University Golf Association to return
to FSU and be honored at one of the college tournaments. My husband
who was the Golf Coach at that time invited her. Dr. W. had rec'd
her undergraduate degree in microbiology from FSU before she went to
Wake Forest Med School. Dr. W. diagnosed me with Lyme. My Bowen Q-RIBb
test for Lyme disease was positive. All the other test I had taken
before - the Western Blot, Elisa, Luat were all negative. I was
treated for the Lyme disease by a doctor in Pennsylvania, a Dr. S.
After being on antibiotics and continuing with a Shaklee vitamin
regimen all my Lyme symptoms disappeared. That was three and a half
years ago and I'm still doing great. The only complaint I have is
sometimes my right knee bothers me, but I don't take any drugs
except a maintenance dose of antibiotics. I do take thyroid
medication, but nothing else except natural supplements. I wanted to
tell my story because I think people should know that there is HOPE.
I started a support group in Tallahassee called LIFELYME. In the
last four years hundreds of people have been locally diagnosed with
Lyme disease in our community through the efforts of our support
group. Presently, I am a consultant for the Central Florida
Research. I talk to approximately 200 people a month from all over
the US, Canada, & Europe. I am passionate about educating as many
people as possible about Lyme disease - the tests, the diagnosing,
the importance of seeing a Lyme literate physician, and the latest
research. Knowledge empowers us, so we must keep the Faith!
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Celeste Luther -
My story is really about my husband and
his suffering. It all started back in 1998 when he became deathly
ill with a sinus infection. After a bout with antibiotics he was
over his infection but still feeling fatigued and run down. He was
told that it was normal and he must slow down. He began not sleeping
and always felt tired. Even if we went to bed a t 8 pm the night
before he would sleep till 1 or 2 the next day. Thinking that it was
his hectic travel schedule, he cut back on his job. We took a
vacation and decided that he needed to take a leave of absence from
work. Then came the chest pains. They were so hard and so heavy that
we actually left a store and rushed to the ER. Nothing came back
from his test so we were sent home and told to follow up with his GP
the next day. So we did, he was diagnosed as having pluracy. We went
home and he started taking antibiotics. Within minutes he was in the
bathroom and having what we thought was a severe allergic reaction.
He was taken off the drug immediately. As time went on he was
feeling worse and worse. He began to not travel outside a certain
distance and he began to feel fatigued and panic. His insides were
constantly shaking and his ears were ringing. He would always tell
me that he thought he was fighting the flu. As we continued our
search, time and again we were told that it was all in his head and
that he suffered from severe panic and anxiety. So the psych meds
came. And they did nothing but continue the uneasiness that he felt.
They did horrible things to him. Hallucinations, drug induced mania,
disassociation and nerve tingling. He became afraid of his own body.
He had every test you could think of and when that doctor could find
nothing we moved to another. Same story over and over, even once he
asked his GP if it could be Lyme and he laughed us out of the
office. Finally this year my husband began to suffer bells palsy
like symptoms. He started antibiotics and within an hour he had
become so ill that he spent the next 4 days in bed unable to walk or
move. We went back to the GP and we were given something else. That
lasted for awhile and the same symptoms of herxing came back and
once again were so difficult that he was unable to continue. We went
back to the Gp and asked for a different dose so that we could work
up to the IV and we were told no. They refused to give him anything
and 7 doctors later we are still looking. I would have never guessed
that once we finally found out what was causing my husband's pain
that we would not be able to take care of it. I am so angry, so sad
and so frustrated at the system. Slowly we are trying to piece it
together, but I doubt that he has that much time. I pray for all of
you and only want what we want a cure or at least doctors who can
and will treat us without feeling scrutiny or feeling like they will
be sued.
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