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12/05/2007 18:57
Franky
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Hi everybody,

My name is Francois but call me Franky...I'm french so don't laught at the spelling...ok?

I tested positive for Lyme 2 years ago and was treated with oral antibiotics for 2 weeks after spending 7 days in a hospital with a swollen left knee and temprature that was going up and down with the rise and fall of the sun, it took my doctors 1 month to figure out that i had Lymes, witch is pretty good right?

They already started treating me for gonaria (even thaught i didn't have it)and the treatment made me feel a litle better for about 2 weeks.

That's when the fun started, my Doc was convinced i was cured, even thought i kept telling her that i didn't feel right, against her better jugement she finally agried to put give me more antibiotics with a ivpic for 3 weeks(she said she was doing me a personal favor)I felt much better (almost back to normal with a few exeptions) for about a year than the symptoms came back with a vangence, it's hard to discribe how i feel...i just know something is not right, i'm sore all over my body all the time, my head feel hot , i have no resistence,i can't sleep even thought i'm dead tired, i cry for no reason, my knees kill me, sore and tight neck and my wewe don't work like it used to but as far as my Doc is concern I'M CURED...i'm now at my 3th Doc in one year and guess what? They all think it's in my head...my head makes my nose run all the time...i didn't know a head could make a nose run!I need some courage to keep going...i need to know that i'm not crasy...SO NOW WHAT?

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12/05/2007 20:11
Julie4848
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HI:

Welcome. Someone will come on the board and help you find a doctor. I found mine by calling and calling until I found someone that knew about lyme (and he is still learning by what I give him). I also have the neck and knee pain. I found out I have lyme in August of this year. I was bitten in July of this year.

Here is the list.

Please know you are not crazy.

Borrelia, Babesia, Bartonella, and Ehrlichia

The following symptoms were excerpted from Diagnostic Hints And Treatment Guidelines For Lyme And Other Tick Borne Illnesses, by Joseph J. Burrascano Jr., M.D. (Fourteenth Edition, November, 2002).

Borrelia

(Borreliosis, neuroborreliosis; also known as Lyme Disease)

Spread primarily though the bite of infected ticks that live on a wide range of mammalian species; secondary human-to-human transmission through semen, breast milk, and possibly in utero

Bladder dysfunction

Burning or stabbing sensations

Cardiac impairment

Change in bowel function

Chest pain

Confusion

Depression

Difficulty thinking

Difficulty with concentration and reading

Difficulty with speech, writing

Difficulty finding words; name blocking

Disorientation: getting lost, going to wrong places

Disturbed sleep: too much, too little, fractionated, early awakening

Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity

Exaggerated symptoms or worse hangover from alcohol

Eyes/Vision: double, blurry, increased floaters, light sensitivity

Facial paralysis (Bell's palsy)

Fatigue, tiredness, poor stamina

Forgetfulness

Headache

Heart block

Heart murmur

Heart palpitations

Heart valve prolapse

Increased motion sickness

Irritability

Irritable bladder

Joint pain or swelling

Lightheadedness

Mood swings

Muscle pain or cramps

Neck creaks & cracks

Neck stiffness, pain

Numbness

Pelvic pain

Poor attention

Poor balance

Poor short-term memory

Problem absorbing new information

Pulse skips

Rib soreness

Sexual dysfunction or loss of libido

Shooting pains

Shortness of breath; cough

Skin hypersensitivity

Sore throat

Stiffness of the joints or back

Swollen glands

Testicular pain

Tingling

Tremor

Twitching of the face or other muscles

Unavoidable need to sit or lay down

Unexplained breast pain

Unexplained fevers, sweats, chills or flushing

Unexplained hair loss

Unexplained menstrual irregularity'

Unexplained milk production

Unexplained weight loss or gain

Upset Stomach or abdominal pain

Vertigo

Wooziness

Babesia

(Babesiosis)

Babesia is a protozoan spread by ticks, blood transfusion, and in utero. Despite there being 13 known forms to date, current testing only looks for two of them.

Air hunger

Cough

Fatigue

Fevers

Headache

Hemolysis

Imbalance without true vertigo

Mild encephalopathy

Shaking chills

Sweats

Bartonella

(Bartonellosis, also known as cat scratch fever)

Spread by bites from infected ticks and in utero

abnormal liver enzymes

encephalopathy

endocarditis

flu-like malaise

headache

hemolysis with anemia

hepatomegaly

high fever

immune deficiency

jaundice

lymphadenopathy

myalgias

myocarditis

papular or angiomatous rash

somnolence

sore throat

splenomegaly

weakened immune response

Ehrlichia

(Ehrlichiosis)

Bites from infected ticks

elevated liver enzymes

headaches

myalgias

ongoing fatigue

persistent leukopenia

thrombocytopenia

At the moment I'm on abx and have been since 10-16-07 and will be for a while...Its not a few weeks and you are better.

Lyme will not win, we will and we WILL…

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12/06/2007 03:35
tina.r
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Bonjour Franky,

So glad to meet another European here, my name is Tina and I am from Sweden but have lived i Georgia since 2000.

This is my second and worst round of Lyme since 2003.

Sweden has a huge problem with ticks, one day I picked 16 ticks of my two year old. Where are you located? Did you catch Lyme here or in France. I am trying to research the possible coinfections for Northern Europe.

Through my own experiences you need to take care of your sleeping problem, sleep depravation can do so much damage. I thought I was going crazy and was so depressed. As soon as I started to take the strongest dose of Ambien I felt better. Lunesta did not help at all. Also, day light and excercise seem to improve my sleep. If you do not get enough sleep the body can not fight a disease very well. After about two weeks I manage to get of the med.and have since then started to feel better.

It sound like it would be good to find a LLMD, you can get a referral through the Lyme Disease Foundation, www.Lyme.org, 1-860-870-0070. You can fill out a form online and mail it to them including a $5 check.

This is a link where I always find good info:

http://www.ilads.org/files/burrascano_0905.pdf

I will keep you in my thoughts,

Tina

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12/06/2007 06:04
jaime1978
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WElcome. It sounds as though you are going thru what many of us do, it's all in your head, we don't know, here's 3 weeks of abx, your cured. you may possibly have put the lyme into remission for a while, but anything can trigger it again. An illness, stress, ect. You will probably be told you have post lyme syndrome.... bologna! no such thing. you need to be treated again and the sooner the better. where are you at? are in overseas?
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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12/06/2007 13:41
Franky
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Hi everybody and thank you for your replies,

I'm french canadian, not from europe and i live in Montreal...and yes i'm looking for a Doctor that knows a bit about Lymes...but all the doctors aroud Montreal seem to stick together, they all say the same thing...it's all in my head...i'll keepooking till somebody listen...and that's that!

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12/10/2007 03:34
jaime1978
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many many people come from canada to us for treatmetn. it is expensive... this disease is aweful. for starters you can start taking cats claw (it's an herb) and artimisin, also herb. many have been helped with that. My geography sucks big time...didn't always, but I have amnesia thanks to the lyme! what state could you get to, and I will find a doc closest to that...you need a LLMD, lyme literate doc. pm me
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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12/10/2007 04:59
tina.r
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Same thing happens in Sweden, lots of dr. don't believe in long term antibiotic treatment there and Swedes are now traveling to Germany to get a better treatment
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