posted
Mine is non restorative sleep. I get absolutely NOTHING out of my sleep. I am ALWAYS completely, 100% exhausted.
I'm very curious what you all would list as your #1 worst symptom. Is it also horrible sleep/exhaustion?
Posts: 83 | From Minnesota | Registered: Jan 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
headaches and muscle pain
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
For me its the weird spacey feeling...and anxiety. It really just depends on the day
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Low grade fevers everyday since March. Then it would have to be horrific fatigue and brain fog. If I could get rid of these 3 symptoms, I could probably deal better with all of the other 50 symptoms.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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posted
I'm with jackie81...I feel like I'm tripping on some form of drugs for the most part of my day and then get nervous about feeling like that.
...not that I'd KNOW what it feels like to take trippy drugs, but that's all I can think of...
Posts: 183 | From ... | Registered: Oct 2011
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posted
mine is exhaustion too. I don't sleep well and don't feel rested at all. I also wake up multiple times during the night.
Posts: 287 | From somewhere | Registered: Oct 2011
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
general overall feeling bad like a never ending flu. I guess the technical term is malaise?
Weakness used to be my worst symptom but treatment seems to have helped that!
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
FATIGUE...the worst part of that is people just think I'm "tired"! I hate that word, "tired"... I am not tired I literally can't move.
PAIN...it never ends, but if the fatigue was gone I could deal with the pain.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
intermittent malaise, fatigue, depression, and anxiety
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
SEvere vertigo...feeling like im going to pass out, vomiting, numbness, feeling like im out of my body, fear of dying
Posts: 651 | From ct | Registered: Sep 2011
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posted
Before diagnosis was dizziness and headaches and brain fog.
Now it's fatigue, depression and anxiety.
Posts: 33 | From Maryland | Registered: Nov 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Pain!!!
All over, but the neck pain and stiffness is the absolute worst!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
It was depersonalization,now it is sleeplessness and pain.
Posts: 342 | From northern california | Registered: Dec 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Numbness/tingling/buzzing.
Jennifer -- I have to tell you.... fatigue/exhaustion/non-restorative sleep were a BIG part of my picture for years. One HUGE thing that has helped is a gluten-free, dairy-free and sugar-free diet. I cannot believe that I wake up with energy and can last through the day. I have only been doing this for a few weeks and it has made an enormous difference, I cannot believe it. Although I really dislike the limits it imposes. But I keep telling myself it will be temporary until I am healthy and well. Also, I notice a surge of energy after I do some parasite treatments. Although they can sometimes be difficult to tolerate (depending on the treatment), once I go off treatment, my energy soars.
Good luck. Happy New Year.
Posts: 2238 | From East Coast | Registered: Jul 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Depersonalization, confusion, taking me from who I am. Hate it.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Fatigue , brain fog .... I no longer have pain after ABX . The fatigue and cognitive issues are far better , but still " in my face " .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Gastroparesis
Posts: 458 | From Miss | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Incredible head pressure (if really from Lyme). #2 is unbearable fatigue/yawning.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
My top 5 worst symptoms:
1. Messed up gut motility ("bells palsy of the gut")...officially diagnosed as "idiopathic" Dysphagia, Gastroparesis, & Pelvic Dyssynergia. I know for a fact my small bowel is also slow, but no official diagnosis...
2. Fatigue & weakness (improving some with L-Lysine supplements)
3. Immune issues: Immune Deficiency (low T-Cells), Allergies/chemical sensitivities, etc. Genetic Methylation issues also fit in here, but what role Lyme plays with that is unknown (but I know it does play some role)...
4. Brain/cognative issues - sleep problems, memory issues, anxiety, etc. (GABA supplements help some with sleep & anxiety)
5. Pain - random, changes location & intensity frequently, and no pain killers work! And I believe the RSD (severe spreading nerve pain) I had from 1997-2001 was also related to Lyme (the RSD is in remission now, but it tries to return whenever I am unable to exercise)...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I no longer have fatigue, insomnia and non-restorative sleep due to bioidentical hormones.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Anxiety, although pretty much gone with treatment, and indifference.
Posts: 478 | From Third Coast | Registered: Feb 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It depends which infection is dominant but overall I fear a return the mental disorders - depersonalization from bart and feeling retarded from babesia. Physically, fatigue and dizziness from babesia was terrible.
Right now, it is apprehension and paranoia. I just worry about every little thing, hoping it is not the boggie man ready to pounce on me again.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
For me, the worst part is all the "head" stuff, other than the extreme fatigue and lack of stamina..yet I cannot sleep without sleep aids to save my life.
I hate the anxiety/irritation and feelings of depersonalization. The brain fog and the spacey/out of it feelings are also very unpleasant. I also have trouble with the whole "rocking boat" feeling...this feeling becomes much worse when I'm over tired or stressed (doesn't take much). Can't wait until that stops someday. So sick of feeling this way.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Many of my issues have cleared up. Photophobia and eye issues are my biggest problems right now. Could change tomorrow. The brain comes and goes.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
At the beginning, foot pain in both soles of the feet, and muscle pain in the left calf and thigh. After that resolved, terrible gastroparesis with constipation and heartburn.
I'm left with intermittent heartburn with rib burning and tingling all the way around to the back. I hate that rib burning and tingling.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
Burning skin and muscle twitches, especially in my lower extremities. Also joint pain. Used to have a tipsy, shaky feeling and floaters in my eyes, but they have disappeared with abx.
Posts: 213 | From ohio | Registered: Jul 2006
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
feeling like I lost who I am..........and that very few care
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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I completely understand. I have felt like I lost a large percentage of my short term mermory and several IQ points to where I did not really believe who I used to be! Lately I have see some improvement on both fronts. Still a long way to go but the many protocols and routines seem to be paying off.
I was always very competitive and leaned forward in the saddle, well this disease really changed my personality. I had to hide my short term memory lapses at work but I know several noticed. It is frustrating when you know you are more capable than what you can currently demostrate.
BV, I too have noticed that my floaters have decreased.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
Definitely the symptom that bothers me the most is the brain issues (fog, memory, speech, cognitive deficits, disturbed sleep, etc.).
Followed closely by the total body joint pain, and fatigue.
After 2 months of oral ABX, I have some improvement in all but the joint pain.
-------------------- Condemnation without investigation is the height of ignorance. Posts: 30 | From Louisville, KY | Registered: Oct 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Weird head feelings, Anxiety, Deep bone pain, Fatigue, Unable to exercise .. Ringing in ears, Sinus issues, Vision problems and now Bladder Control.. Not sure these are all lyme related.
Seems after a year or so of treatment nothing is working..
Such doom and gloom and worry, worry, worry...
Posts: 1058 | From VA | Registered: Oct 2010
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posted
I have terrible pain in my neck and knees plus the over all achiness like I constantly have the flu. And fitigue. I hate the fatigue. It makes me feel like I've just wasted another day.
-------------------- diagnosed with fibromyalgia 1992 Lyme disease Jan 2011 give it all to the LORD everyday Posts: 38 | From southwest michigan | Registered: Nov 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Head pain, fatigue, loss of clarity/mind...
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
-Head and neck pain/pressures/burning and brain fog.
-Exhaustion and low energy.
-Circulation issues and burning/numbness of hands/feet.
-Night sweats. 2-3 shirt changes a night.
-Tinnitus (wow the worst today!).
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Pain-joint, fibromyalgia burning pain, muscle pain, anxiety and crazy fatigue, also not feeling alive..disconnection from my life, and others.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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Off balance feeling could be caused by C1 vertebra out in the neck. I get mine corrected and then I feel almost normal again.
Posts: 13116 | From San Francisco | Registered: May 2006
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Fatigue, by far. Other symptoms have come and gone, but the fatigue is always there. It's better than it used to be, but it's very much still here.
Not as big of a problem on a day-to-day basis, but my short term memory is definitely not as sharp as it used to be.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
For my husband it has been his breathing. He hasn't been able to breathe good for months. And his muscle loss has given him such a terrible limp in his left leg. After months on meds, he says he wouldn't feel too bad if not for those 2 things.
Posts: 305 | From United States | Registered: Nov 2011
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posted
Irritability and brain fog
Posts: 114 | From NY | Registered: Jul 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Breathing problem the entire year from a vocal cord problem most likely caused my nerve dysfunction from the lyme
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
BRAIN FOG!!! INABILITY TO CONCENTRATE/TOTAL LOSS OF ALL EXECUTIVE FUNCTION WHAT-SO-EVER/LACK OF CONCENTRATION AND UNDERSTANDING/SHORT AND LONG TERM MEMORY LOSS/LACK OF MOTIVATION AND ABILITY TO PRIORITIZE AND MULTO-TASK!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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