joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
1.Fatigue, depression and achy muscles
2.Borrelia, babesia, bartonella, ehrlichia and STARI
3.Babesia and borrelia
4.To sick to do much of anything
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
1.Internal vibrations, Fatigue, depression, one side of face and neck feels like it is swollen or filled with fluid (but looks ok).
2.Borrelia, babesia, ehrlichia and mycoplasma
3.Babesia, borrelia, ehrichia
4. Medical leave from grad school- house bound most of the time. Go walking occasionally but don't do that much.
Posts: 163 | From Cleveland, OH | Registered: Sep 2007
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
1. My worst symptoms were paralysis, searing nerve pain, crippling exhaustion, cognitive challenges. My worst now is continued cognition problems.
2. dx wtih Lyme, Babs and Bart in June 2005
3. Continuing to treat all three but now reducing antibiotics
4. Working more than full time since Jan.
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
fyi, azure, someone else did a poll awhile back on things nearly the same, so do a search also, and if you find it, paste the link below for a moe complete picture of the members....thanks!
1. What are your worst symptoms?
FATIGUE, PAIN IN NECK, LOWER BACK, and formerly my groinn until i recouped from left hip surgery. can't get organized, procrastinate, hate doing housework now....back hurts when vacuuming; smells bother me cleaning and around smokers.
EXTREMELY SENSITIVE EYES TO LIGHTS, GLARE REFLECTION; SUPER SENSITIVE TO ALL NOISES; being startled and scared to death, and again the SMELLS issues.
can't breath when sleeping; PLUGGED UP ALL NIGHT these were my gut reactions.
2. What TBDs do you know you have?
LYME no co-infections but HHV-6, EPV, simplex herpes, etc.
3. What TBDs are you currently treating?
NONE, off everything! abx and spplements. working with other things wrong with me.
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
disabled off work 9 yrs. 12-31;; took 5 yrs. to get SSDI....pure hell!
edited; i know i typed this last comment, but it didn't show up now! ??
honestly; i'm worse off NOW than i was prior to starting abx, supplements, etc. i've gone DOWNHILOL not uphill!
posted
1. Insomnia, insomnia, insomnia and then there's the insomnia.
Some heart sx - but not sure if that's from the die-off or the picc line (must get that checked out)
Pain, weird, funky, clenched pain like a fist in left gut under ribcage. Wish I knew what it was.
Some pain radiates from left gut area down left leg.
2. Lyme, Babs and Bart.
3. Just on IV Doxy, don't know what it's hitting.
4. Disabled, but hoping to be abled soon. Awaiting word on SSDI - it better come soon.
Posts: 194 | Registered: Jul 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
1) worst symptoms are in my pelvis... Interstitial cystitis, tight pelvic floor muscles, food intolerances
2) So far test neg for everything except strep, few bands on igenex WB.
3) trying malarone for babesia
4) disabled, can function more than I could at my worst, but far away from joining the normies. i stretch and use the eliptical to keep my muscle tone up.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hubby's worst symptom is Lyme Brain/brain fog...whatever you choose to call it.
He mixes up words at times, can't recall the right ones. Says K-Mart when he means Wal-Mart.
He even mixes up "awesome" and "terrible". Makes for interesting conversation at times.
I also think we could win the world championship at charades.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
1. Insomnia, insomnia, insomnia and then there's the insomnia.
Can't say it better than BB did!!!!!!!
Borellia Brain said:
Pain, weird, funky, clenched pain like a fist in left gut under ribcage. Wish I knew what it was.
I totally have this exact same pain, and have for a long time!!! I've mentioned it to the doctor several times; and am holding onto an xray slip for it.
I decided I think it's my spleen from the Babs; what do you think??
Also, extreme fatigue, sleepiness, dizziness, loss of balance, air hunger, ringing in my ears, very bad memory issues; NIGHT SWEATS
2. Lyme, Babs
3. Mepron and Zithromax, for the Babs (does this hit the Lyme too?_
4. Disabled, but hoping to be abled soon. Awaiting word on SSDI - it better come soon.
Copied from BB; same!!! Spend many days bedridden, rarely leave the house, I HAVE to work when I can but I work at home so I can pull it off sometimes; but I am doing a terrible job at it. I wish I could just focus on getting better instead of stressing about work and trying to work.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
1. Shortness of breath/air hunger, nausea (thanks flagyl ), word finding, joint and rib pain, and yes breast pain!
2. Lyme, Bartonella, babs, EBV, CMV, HHV6
3. Lyme (Have treated bart and babs-may have more babs treatment in store for me)
4. Not working right now. Very hard for a Speech Pathologist who can't speak to work (not very ethical )
Now, tomorrow my worst symptoms may be different than todays .
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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4. What is your current level of functioning. (working, disabled, bedridden ect.)?
Disabled, cant do much, only a short walk daily.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
1 . worst symtpoms: burning,shooting,stabbing pain was inititial symptoms when lyme woke up from dormacy. I feel like there is cold liquid dripping from knees, and also all over body. Burning brain. flaters, ear ringing, cracking cartilidge . I feel pin pricks on face, I hate the twitches, and cold feet.
2 . tbd diagnosed so far - lyme and bart, got a borderline titer via igenx for babs. positive for ebv and parovirus.
3 . treated for bart and BB
4. not disabled thank god. functioning now better than when first got the disease a few months ago.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
1. What are your worst symptoms?
My worst symptoms used to be dizziness/lightheadedness. That was something that would be constant for me. I'd always feel like I was going to faint or just lose it. Now, since that has gotten better, my shortness of breath has seemed to be my worst symptom now. I have episodes of it where it lasts 30 or so minutes. Along with it comes naseau and many burps and coughing. It's scary and just a bad feeling to have.
2. What TBDs do you know you have?
My LLMD and I know I have Bartonella (from positive Fry lab), but didn't get positive on anything else. Didn't even get positive on WB.
3. What TBDs are you currently treating?
Lyme and Bartonella (whatever Biaxin, Doxy and Rifampin treat)
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
I'm working, but I'm working at home. It used to be so bad I could hardly work at home because I felt so terrible and sick most days. It's gotten better. But I still know that working outside of home would be too much for me right now.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
1. What are your worst symptoms? On a good day, I don't really have any. On a bad day: ear swishing, facial pain, jaw pain, shoulder pain, arm pain- all on the right side;
vertigo, off balance, severe migraines, head pressure, sweating and inability to walk feeling like I may faint and just feeling VERY hot flashy
2. What TBDs do you know you have? Lyme and bartonella
3. What TBDs are you currently treating? Right now, none, in the process of getting my LLMD appt set up again. did do some rifampin on my own
4. What is your current level of functioning. (working, disabled, bedridden ect.)? disabled
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Fatigue, neuro problems , Gi problems & pain.
lyme & babs, I tested neg to bart but feel It's a problem for me as well. Have a huge problem with yeast now, despite a good diet.
Treated the lyme for a grand total of 12 years Am only doing rife & supps at the moment.
I am at 50% functioning on my good days & taking up art again but not able to do my classical oil portraits anymore, would consider myself partially disabled.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
1. Joint Pain in ankles, knees, elbows,& wrists-neck pain-fatigue 2. Lyme, Bart, Babesia 3. Lyme 4. Not working.. I know I couldn't work full time. I actually worked full time during chemo and radiation for breast cancer. I feel worse now than I did then, FWIW. Most symptoms have gotten better except for my pain levels.
Posts: 20 | From Philadelphia PA | Registered: Apr 2004
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
1. What are your worst symptoms?
Pains from hand, feet and hips.
2. What TBDs do you know you have?
Positive for Lyme, negative for Bart and Babs, but seems have Bart not Babs.
3. What TBDs are you currently treating?
Bart and Lyme
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
Working full time. 100% functioning, expecting 150% functioning though.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
sleep problems, weakness, tired and cognative problems! dx: LD and Babs treated for LD and Babs (Mepron, plaquinil, Biaxin) not able to hold down real job.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
bettyg is one of these the post you were referreing to?
Number one is headpain/headache. Have had it constantly for 3 1/2 years, it's a lot better now, but still chief complaint. Feels like it's in the right, rear motor area of my brain.
Real groggy when I wake up for 2 hours.
Multitasking: 2 people talking to me at once puts me on tilt, for example.
Fatigue, memory (I edit a lot of my posts!) and hard to grasp what people say to me verbally. Slow brain. But miles better than what it was. Writing, reading--and posting!--help me stay sharper, along with regular machine weightlifting and warm pool to stretch/dance.
Right side muscle pain and right knee made walking slow, but it's much improved from what it was.
I've learned the importance of not overdoing it: Lyme naps / Lyme rest.
2. TBDs I know I have.
Lyme. Others? Considering.
3. TBDs currently being treated.
Lyme. IV / IM antibiotics plus orals for a little over a year now--and more antibiotics to come. These have been outstanding. You all must think I'm nuts, but I love the antibiotics because they're helping me and I'm lucky that I've been able to tolerate them.
4. Current level of functioning.
I can function: drive, walk (a bit slow, sometimes lose balance a bit. Walking for blocks would be a painful trial) and can do gym and pool therapy--love that.
posted
1. SYMPTOMS: Vertigo (feels like I'm walking on a boat in a storm sometimes), insomnia, migraines, irregular heartbeat, cognitive problems are much better than 6 months ago! Facial twiches are all but gone except when I'm exhausted.
2. TBD's: Lyme for sure, possibly Babesia.
3. Doryx (time released Doxy w/buffers...no nausea!) for Lyme & Cipro for Lyme & Bab.
4. Working full time. Occasionally wiped out during a herx or a migraine, but otherwise functioning.
Posts: 3 | From NH | Registered: Feb 2008
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posted
1. Lyme brain - I've become dangerously whifty. All things considered, at least it gives hubby and I something to laugh about.
Neruopathy - both arms and legs tingle now all the time, sometimes my face, even my tongue. Its distracting, annoying and otherwise a pain in the butt.
The pinpricks aren't helping either. Occasionally, it'll feel like I'm getting stung by bees.
Fatigue. 'Nuff said.
Have other sx, but these three are the worst.
2. No official dx yet, although WB indicates lyme. Also suspect I may have babs.
3. No tx yet. See the llmd next month.
4. Can't work anymore. Used to run my own business, but had to let it go down the drain. Tried a part-time job - couldn't do that either.
Walking more than 5-10 minutes causes severe hip pain. Fatigue limits other activities. I do drive, but probably shouldn't.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
1. What are you worst symptoms?
Seizures. Spasticity and Mobility Issues. Eye Pain. Sensitivity to Light and EMF.
2. What TBDs do you know you have?
Lyme. Babesia (mainly in remission now). Suspected Bartonella.
3. What TBDs are you currently treating?
Lyme. Bartonella.
4. What is your current level of functioning. (working, disabled, bedridden etc.)?
Housebound, but quite functional within the home. In March of last year, I was almost competely bed-bound, and in constant excruciating searing, burning pain with muscle cramping and seizures. Thank you Doc. S. in CA!!!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Now I feel perty good most of the time and I am close to end of treatment-
I used to be bed ridden for 3 yrs-
Now I am cleaning up my house and have started a small business selling a products I designed online-- Ebay- and working some in movies -
And I am planting a garden on the roof of my House -- Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Peacesoul
Unregistered
posted
1. What are your worst symptoms?
joint pain, fatigue, neck aches, vertigo, anxiety, depression, confusion, overall weakness (which I think is from anxiety), bad appetite and GI issues.
2. What TBDs do you know you have?
Never been tested for any so not sure
3. What TBDs are you currently treating?
I'm on Doxy only now. Was on Zithro and Flagy but stopped. Weaning off abx to go on herbs alone.
4. What is your current level of functioning. (working, disabled, bedridden ect.)
Stopped working at my full time 3 months ago. I return to work in a week. I was bedridden 13 yrs ago when this hit, but didn't know I had lyme then. Have only been bed ridden 2-3 days since off work and on abx. I live alone, I can't be disabled, though it would be great to stay home and continue to care for myself.
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I would like to update from my November post .
What are your worst symptoms?
Severe Fatigue (bordering on narcolepsey), overwhelming sick feeling, severe pain, severe neuropathy, enlarged spleen, kidney issues, depression, anxiety, constant fever, confusion, weakness to name a few
What TBDs do you know you have?
IgM CDC Positive through Quest Clinically diagnosed with Babesia 2 weeks ago Have Toxoplasmosis (probably not tick borne)
What TBDs are you currently treating?
On day 4 Mepron/Zith
What is your current level of functioning?
Disabled and occasionally bedridden
filed for disability few weeks ago (keep your fingers crossed from me please, and thanks) Posts: 3905 | From USA | Registered: May 2007
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posted
1.) Peripheral vision severly impaired, overall vision-legally blind, brain fog/cognitive issues, fainting, light and smell sensitivity, enlarged liver, very sick feeling all over upon waking, arm weakness, arm muscle stabbing pain, joint pain, back pain, can barely walk after resting or in morning, chest pain (Abn.EKGs), insomnia, cough, elevated sed rate and CRP for the past 2 years, peripheral neuropathy in hands, legs, feet, frequent nausea and constant burping 2.) Borrelia, EBV, CMV, Fibro 3.) Finished 4 wks of Doxy in Jan, trying to get to Boston for further tx. from LLMD, Lyrica which just takes the edge off some of the pain 4.) Disabled
Posts: 12 | From Cape Coral FL | Registered: Jan 2008
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My heads in a vice (muscles) -comes with loud ringing ears and sound sensitivity
I get persistent "stabbing" bone and joint pains, this is worst at night
Night sweats, ususally specific to my neck and right arm...wierd
Severe fatigue, low stamina
muscle spasms, tics, twithes, "crawling" muscles
balance trouble and sometimes disorientation
2. What TBDs do you know you have?
Lyme, possible Babesia
3. What TBDs are you currently treating?
Lyme, start Malarone next week for Babs
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
Disabled but very, very slowly making progress
functionality varies daily, unpredictable
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
1. What are your worst symptoms?
Migraines, migraines, migraines. Slow thinking process, intolerance to noise.
2. What TBDs do you know you have?
Positive for lyme and babesia WA-1.
3. What TBDs are you currently treating?
None. Treated approx. 2 years.
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
I work approximately one day a week or so as a wedding photographer. Work at home editing photos and making album layouts at my own pace between weddings.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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