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09/20/2007 21:11
michele611
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Hello everyone, I am a 21 year old female from Long Island, New York, although I feel like I have the health of an 80 year old woman. I go to college in upstate New York and just began my senior year. This past November, I experience my first of many strange episodes. I was driving home from school when all of a sudden I felt this miserable sensation throughout my body, almost like a hot flash. It felt as if a venom was traveling through my veins from head to toe. I felt as if I was on the verge of passing out and my heart was racing. I was very nauseas, dizzy, and became extremely weak. I called 911 and was taken to the hospital, being released later that day with "anxiety". I didn't think anything of it, and went on with everyday life. However, a few weeks later, the same thing happened and this is where my 10 month journey began. What started off as these random episodes has turned my life into a living nightmare, so much as that I am considering withdrawing from school. These episodes have turned to start resembling seizures (I have severse jerking of my limbs), but do not fall into the common criteria for a seizure. From November until now, getting worse with each month, I feel HORRIBLE everyday. I have had such strange sensations and symptoms that have lead me to over 25 doctors of every type imaginable, and numerous visits to the ER. I have recently pieced together that these episodes occur only 24-48 hours after alcohol use, and since I have stopped drinking, the episodes have stopped. However, the misery that I feel everyday has only gotten worse with time. Although I was tested for Lyme by my Neurologist back in November and had a spinal tap this past July to which both were negative, I FINALLY tested positive 2 weeks ago when I went to an infectious disease doctor. Although my ELISA, PCR and Western Blot iGg test came back negative for Lyme, my Western Blot iGm test came back positive. This doctor still refused to put me on anti-biotics and insisted that I come back in a month to re-test. My mom went to a Lyme Disease Association Forum out in Riverhead and researched a bunch of ILADS doctors considering my infectious disease doctor was of no help. I have recently gone to an ILADS doctor who took a series of bloodwork to be sent to igenex, but it won't be back until next week. I feel so confident that I have Lyme due to the uncanny similarities of my symptoms although I never noticed a rash, but are looking for any reassurance as to whether anyone else has had some of my symtpoms...here goes the list (I might be here for a while )

Everyday Symptoms:

-CONSTANT MALAISE (I can't put my finger on what feels wrong but I constantly feel like something just isn't right)

-Visual disturbances (floaters, flashes, peripheral shadows, what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes)

-Ringing, pulsing in ear

-Feeling the need to "pop" my left ear, pressure

-Uncontrollable muscle spasms (hundreds a day all over body)

-Extreme eye twitch in upper eyelid of my left eye

-Creaking/cracking in the base of my skull/neck that is getting worse with time

-Dizziness/the "spins" sensation

-Head rocking (my head shakes up and down in what seems to by rhythm with my pulse)

-Throbbing/pulsing sensation in my head/neck/face(it feels like I can feel my pulse in my brain)

-Shaky hands, arms, muscles (My hands tremble, I notice it a lot when I read magazines because the pages shake)

-Increasingly worse heart palpitations that have been recorded by my cardiologist

-Sensation when I'm laying down as if I am rocking on a boat

-Body rocking (my body actually rocks back and forth involuntarily on occasion)

-CONSTANT FATIGUE ALL DAY, EVERY DAY

-Inability to fall asleep at night

-Body weakness/heaviness

-Irregular menstral cycle

-Sudden muscle jerks/movements

-Loss of balance/tip over while walking/walk into things

-Vibration sensation in my feet

-Feeling as if I can't take a satisfying, deep breath

-Loss of energy

-The chills

-Pressure and sometimes pain in my knees, hips

-Slowed processing of information

-Inability to keep concentration

-Headaches/ sharp pains in the back of my head that last for a few seconds but are persistent

--I'm sure many more that I am forgetting

I must add that all of this has lead to anxiety and depression which has only made matters that much worse. I do take .25mg Xanex when I feel very sick and although I become relaxed, my symptoms do not decrease. I never have the desire to do anything anymore and I lay around all day because of how sick I feel. I just started 100mg 2 times a day of oral doxycyclene but havn't felt any improvement yet. Has anyone had Herx reaction to anti-biotics and if so, how long did it last?

I need help...I feel like I have no where to turn and my parents feel so helpless. I have had every test imaginable from a colonoscopy to MRI's, MRA's, an EGG, EMG, a spinal tap and countless amounts of bloodwork. I have seen an infectious disease doctor, a neurologist, cardiologist, endocrinologist, GI, Opthamologist, Neuro-opthamologist, movement disorder specialist, and the list goes on. Doctor after doctor has told me that they can't classify my condition or that this is some kind of strange anxiety. I truely feel that I know my body and it's not. If ANYONE can please comment on my story, relay some helpful advice or let me know if you've had any of my symptoms PLEASE DO, I will appreciate it more than you know. The past 10 months have turned my life into a living nightmare and I am losing hope of feeling like my normal, happy self with each day that passes. The only thing that brings me comfort is reading symptoms and stories of other people and feeling as if I'm not alone. I think that it's so wonderful that people can join together to help eachother and offer advice and consolation and hope that this will turn out positive for me Thank you for your time and please feel free to contact me!

Post edited by: michele611, at: 09/21/2007 09:15

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09/21/2007 06:23
jaime1978
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check your pm
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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09/21/2007 07:52
lpirollo
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Have you had an MRI?

Also,there is a lot of homeopathy docs out there threating lyme disease holistically. I know a nutritionist that may be able to help and a couple of centers/doctors. Two in PA and one in DC. Let me know if you are interested and I will send you the info.

Sorry for what you are going through,

Lori:


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09/21/2007 09:33
SusanRae78
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I completely understand what you are going through. I have experienced many of the symptoms that you have listed. I knew something was very wrong with me,and the doctors that I saw all wanted to label me with anxiety/panic disorder. The thing is is that I had a rash and I know when and where I was bitten, so once I started to have major symptoms, I put it all together and had diagnosed myself even when no one else would touch it.

My advice to you is find yourself a very experienced and knowledgeable LLMD. I also think that your dose of Doxy should be twice the amount that you are currently taking. Do you know if your current doctor has tested you for any of the co-infections? If not, be sure he does. Just from some of the symptoms you described sounds like you may have some of the other stuff going on as well. If you would like more specific information on Lyme and the co-infections and treatment , you need to google Dr. Burrascano's Lyme Treatment Guidelines of 2005. It is a vast wealth of knowledge about this illness with treatment protocols.

I am very sorry that you have been affected by this ilness. Just know that when you get treatment, the right treatment, you will get better. Just be persistant and hang on to your hope!! If you have any questions that I may be able to help you with, I would be more than happy to. Best of luck to you!!

Susan

Post edited by: SusanRae78, at: 09/21/2007 11:36

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09/21/2007 14:31
lpirollo
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Susan,

Not sure you wanted to get back to me. I don't think I listed anything in regards to my symptoms.

Thanks, Lori


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    finding a doctor
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09/21/2007 14:40
SusanRae78
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Message was intended for Michele. Sorry?!
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09/24/2007 02:36
Lab Rat
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4 face area & @ it ...eyes, etc

I learned about MsM plus from Life-Flo Brand

(internet)

My thoughts 4 above:

msm suppose 2 b good 4 pain.

and in cream form you are able to skip the liver.

Using cream form goes rt 2 the pain problem

becuz goes thru the skin.

read pioneer das children w stomach pains moms

placed tobacco on top of stomach to run vermin off

(I dn't know if that works??)

for more protection I just remembered of

an old timey remedy recipe (realy source of Vit C)

using the hottest peppers like scotch peppers.

Mine are yellow to reddish color. I'd put in a

glass jar for couple months. Shaking it from time 2

time. Drain off. Put in sprayer bottle/dropper bottle.

use for many many things.

I use it for my face at times. It can burn you but I

suppose I am use to it using it for mesquito bug

protection. Now I cant live without this tincture.

I call it my closest friend indeed.

there's 2 more ideas that pop to mind but I wont

overwhelm you.

Bless

LAB RAT 90210
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09/26/2007 19:43
michele611
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My IGENEX test came back completely positive today for Lyme!! Finally a sound answer after wayyy too many unanswered months...and the strangest part was that it was completely the opposite of my iGm test, the IGENEX test stated that I've had Lyme for a while now and that it was not a recent occurance. Guess the New York tests aren't too reliable...
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10/02/2007 16:21
AlaskaMom
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Michele,

I've had the same symptoms for quite some time and others as well...I am waiting on igenex results, supposed to be back 10/10. I hope to get some answers then as well. I hope you can get the treatment you need now. Best of luck to you.

Never give up...keep searching for the answers.
http://myspace.com/alaskariverview
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10/02/2007 17:23
jaime1978
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I have had many of the symptoms, if not all, that you describe. In fact, I have over 60 symptoms. I feel like you do, I am 29, my problems started when I was your age. Most people don't remember a tick, or a rash. I actually had 2 burrowed in my back when I was 9 years old...and still docs refuse to think lyme. I found a LLMD who is treating clinically, my tests came back negative, so I know how you feel. It's horrible to not know what is going on, and trying to pretend to have a "normal" life. Hopefully you have a good LLMD and get you on the road to recovery....be patient, it can be a LONG one.
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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