4. What is your current level of functioning. (working, disabled, bedridden ect.)?
Posted by AZURE WISH (Member # 804) on :
1. What are your worst symptoms?
- Fatigue
I wake up tired and it just gets worse from here low energy low endurance. I need to sleep and rest a lot.
- Pain in my joints, muscles, head, chest, bottom of my feet.
- Lightheaded / dizzy
- Shortness of breath
- Heart palpatations
- Tremors
always in my hands and fingers, sometimes runs all the way up my arms into my shoulders.
- Weakness
my legs often feel like they are just going to give out from beneath me.
- Balance issues
I am not falling on the floor like I did about a year ago but I still bump into stuff a lot.
- Pressure in chest
- nausea
2. What TBDs do you know you have?
Lyme and babs
3. What TBDs are you currently treating?
Lyme and babs
4. What is your current level of functioning. (working, disabled, bedridden ect.) ?
Disabled
- wearing shoes is awful all by itself. Cant drive. On a ``good day'' I can cook dinner but then I am exhausted and I have to do it early in the day
(I cant stand long enough to cook at dinner time so I cook it earlier and reheat it for dinner)
Very very far away from working. Far away from being able to work on my art.
Cant really do any of the things that I wanted to do with my life cant really even keep up to all the things that need to be done at this point.
sorry if this sounds winy
Posted by joalo (Member # 12752) on :
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
Posted by DesperationIn (Member # 13121) on :
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.
Posted by Andie333 (Member # 7370) on :
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.
Posted by bettyg (Member # 6147) on :
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!
[ 03. November 2007, 03:43 PM: Message edited by: bettyg ]
Posted by BorreliaBrain (Member # 7603) on :
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.
Posted by cantgiveupyet (Member # 8165) on :
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.
Posted by Boomerang (Member # 7979) on :
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.
Posted by Tracy9 (Member # 7521) on :
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.
Posted by Geneal (Member # 10375) on :
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 .
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
Disabled, cant do much, only a short walk daily.
Posted by jenin98 (Member # 12617) on :
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.
Jenin
Posted by disturbedme (Member # 12346) on :
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.
Posted by TheCrimeOfLyme (Member # 4019) on :
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
Posted by 5dana8 (Member # 7935) on :
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.
Posted by merrygirl (Member # 12041) on :
Fatigue, pain, fever, overwhelming sick feeling-
Lyme, Toxoplasmosis, EBV
Treating Lyme
Disabled and sometimes bedridden Posted by lymeladyinNY (Member # 10235) on :
4. disabled...bed ridden some days...and on a good day- short walk, rebounding, qi gong, or yoga
Posted by MaryOH (Member # 5609) on :
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.
Posted by Dave6002 (Member # 9064) on :
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.
Posted by EWT1638 (Member # 11315) on :
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.
Posted by AZURE WISH (Member # 804) on :
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.
It's the brain thing that is most disabling.
Take care,
Daise
Posted by Mrs. G. (Member # 14668) on :
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.
Posted by Curiouser (Member # 14128) on :
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.
Posted by canbravelyme (Member # 9785) on :
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!!!
Posted by Lime-ade outta Lyme (Member # 14660) on :
1. What are your worst symptoms?
Fibro-like issues, the FOG, panic/anxiety, the killer migraines, and now incredible unrelenting spasm/cramping awakening me all night, every night
2. What TBDs do you know you have?
Lyme, bart, babs, and mycoplasma
3. What TBDs are you currently treating?
I treat them all
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
I squeak by at work with the aid of benzos and serious pain meds...then bedridden all weekend
Moe the juice maker
Posted by groovy2 (Member # 6304) on :
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--
Posted by Peacesoul (Member # 13709) on :
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.
Posted by merrygirl (Member # 12041) on :
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) Posted by je (Member # 14653) on :
I thought I answered this already but I guess I didn't.
Tracy9 ...before I forget... that pain sounds familiar. I had that
I thought I was having a heart attack. It was gallstones.
My worst symptom is not being able to speak right. I get so angry with myself.
Does that make my worst symptom stuttering or rage?
Posted by ginnyw (Member # 14493) on :
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
Posted by BJK (Member # 13251) on :
1. What are your worst symptoms?
cognitive problems- making mistakes, confusion, word block, not understanding others or making sense myself, overall slow mental processing
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
Posted by trish4 (Member # 14156) on :
1. Fatigue depression neuro problems (cannot focus and lost a lot of my vocab. words) There are many more symptoms but these are the 3 worst.
2. Lyme is the only one that came back positive. And also EBV
3. Nothing now, I see my new LLMD in NY in a couple weeks.
4. Working part time - maybe 15 hours a week if that
Posted by adamm (Member # 11910) on :
1. Dementia.
2. Bb, Bart
3. 1 g/Biaxin day
4. For better or for worse, well enough for no one to notice there's a problem. I and feel that the Biaxin is helping.
[ 20. February 2008, 09:38 PM: Message edited by: adamm ]
Posted by Michelle M (Member # 7200) on :
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
Posted by sweet pea (Member # 6495) on :
1. What are your worst symptoms?
Intolerance to people.
2. What TBDs do you know you have?
Lyme, Babesia, Bartonella
3. What TBDs are you currently treating?
I think the Babesia is gone and Bartonella is the problem, so treating Bart and Lyme.
4. What is your current level of functioning. (working, disabled, bedridden ect.)?
Working, but tired all the time and wish I could rest more.
![[Smile]](smile.gif)
![[cussing]](graemlins/cussing.gif)
![[shake]](graemlins/shake.gif)
), word finding, joint and rib pain, and yes breast pain!![[Frown]](frown.gif)
)![[Big Grin]](biggrin.gif)
.![[Mad]](mad.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)