Hi, I have been sick for over 5 months. I feel like I am dying b/c I feel better then worse, it's debiliating and I'm only 31. I have been tested for everything, Lyme titer was negative. WAiting on more specific Lyme tests results. Lived in Southeastern PA for years, moved to TN four years ago. Been bitten by HUNDREDS of ticks b/c I hike all the time, always in woods. Never saw a rash. Nothing else fits my symptoms so clearly and I am soooo sick. Wondering if anyone can tell me some of their feelings/symptoms for LATE PHASE to hear it from a real person rather than lists of symptoms. I am scared and I feel horrible, just HORRIBLE. HELP!!!!
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What you really need to do is get a Western Blot test thru Igenex Labs. If you were tested thru Quest or Lab Corp, I doubt it will come back positive.
It MIGHT, but not too likely as they do not test for all the Lyme-specific bands.
Do you have any of these symptoms??
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Mb, I think it'd be helpful to find out if there's a support group in your area you can also connect with.
Like Lymetoo said, you need to be tested properly, and you will need treatment with a good LLMD.
It is all very difficult, and we are here for each other, to try and figure out what's going on and what acould be the next steps to take.
If you were to post more specifically about your symptoms, people could make more comments about what's going on and what they try to do for alleviation.
Posts: 13116 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Mb,
Welcome!
Sorry to hear you are so ill....I was there before I was dx.
Please get a Western Blot through Igenex and find a Lyme Literate Medical Doctor (LLMD) to treat.
Sorry that you had to find this group, but glad that you did.
Given that you've been bitten hundreds of times, the likelyhood of Lyme must be pretty good.
Hang in there. You've come to a wonderful place, full of people who have or are dealing with
Lyme disease and co-infections. Lymenet has helped saved my life and my sanity as well as given
me the opportunity to have friendships with an incredible group of courageous people.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E !*)*)!*)!*!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
welcome to lymenet. you've come to the right place.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
up for mb
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Hi Ya'll! How sweet of everyone to welcome me. It's so comforting to hear someone who takes me seriously. Just got back from the Rheumatologist. My PCP referred me to him after not knowing what is wrong with me. GUESS WHAT? Dr. Rheumatologist feels that I am suffering from a combination of physical symptoms that are a manifestation of something traumatic or from depression/anxiety. YEP!!! He did test my blood for something called, firbro spondylitis or something like that, can't remember. But, he believes it is most likely from psychological problems. He stressed that he believes my symptoms are real. NO kidding my symptoms are real. Anyway, I am discouraged and so sad. I found a support group here in Nashville and hopefully someone there can give me the name of an LLMD in the area. I guess that is my only hope? Why are the docs so undeducated on this subject? My doc put me on two weeks of Doxycycline while awaiting the Lyme PCR and Wester n Blot tests. Two weeks wouldn't do a darn thing anyway, right????? Help!
Posts: 7 | From nashville | Registered: Apr 2007
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Someone mentioned that I should go into more detail on my symptoms. Let me know if any of you feel this way.....The symptoms vary a lot, they come and go day to day, hour to hour...Joint pain in my knees, fingers, hands...muscle numbness, sometimes my arm or leg will just feel numb and incredibly heavy...these HORRIBLE shooting pains that go through my feet, hands, calves, quadriceps...terrible lower backaches that feel like someone is just punching me...dizziness...headaches although they aren't that frequent and aren't too bad...I used to hate taking naps, now I need naps for two to three hours a day, every single day...I never feel rested...sometimes it's hard to just walk...does this sound like anything familiar to any of yall? does it sound like i am missing something fundamental to the symptoms? or do i have a symptom that is completely unrelated? I'd love to hear back..thanks.. mb
Posts: 7 | From nashville | Registered: Apr 2007
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posted
Hi lymetoo!
Posts: 7 | From nashville | Registered: Apr 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Ah HA! There you are. I have been watching this post to see if you were real or not. HA!
Hope you are able to get to an LLMD soon so you will know one way or the other.
I would suggest an LLMD that is a member of ILADS or recommended by the Lyme Disease Association or people on this site.
I went to a few docs who said they knew about lyme and then were not able to read the test results from Igenex.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Welcome mb!! We're in TN too. Have been LLMD in MO. I heard recently of a doctor in nashville area who treats for lyme, but we haven't been there yet.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Hi Boomerang, How far is the drive to the doctor in MO? I'm willing to do almost anything. Where did you hear about the doctor here in Nashville? Help! Hope you're feeling okay. MB
Posts: 7 | From nashville | Registered: Apr 2007
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Hi Mb, I'm here in Nashville. Are you going to the meeting Monday night? If you want to talk just PM me. Sara
Posts: 81 | From Nashville Tennessee | Registered: Oct 2006
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