posted
I'm new here and just wanted to get an idea of
others' level of functioning. How many hours per
day can you spend out of bed? How long have you
been sick? How many medicines are you taking?
Are you suffering? Can you work? Can you raise
your kids? Are you on disability? What are your
three worst symptoms?
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Ellen,
Welcome
I work 2 days a week now.
Was working 40-80 hours per week when I was on oral abx, but have been declining.
Now working 16 hours per week and am on IV and oral abx, and herbal CSA, and many supplements.
I am able to stand for half hour at a time. My back muscles charly-horse and cramp up if I stand for longer.
I live alone in a big city. Not many friends, (2), and have quit things I used to do because I physically and mentally have no stamina anymore.
I am currently battling lyme and bartonella. I had RMSF. I also have at least 3 other bacterial coinfections, and 2 KNOWN viral coinfections. I have choosen to ignore the other coinfections as I find them overwhelming.
We are focussing on lyme and bart as those are my dominant infections. One step at a time.
I am in so much pain, I can't lay down for more than 3 hours without getting up and moving. So I sleep about 4-5 hours per night total.
For that reason, I can't really quantify how many hours spent out of bed, as it hurts me to be in bed for too long.
I do know that when I get the urge to lay down, I have to immediately.
My chief complaints are:
Neuro lyme-memory loss (both short and long), disorientation, confusion, coordination issues, memory, confusion-wait, did I say that already?! An example I like to use is getting ready for work in the morning, but forgetting to put on pants and nearly walking out the door. Another one is forgetting to put on shoes, and only realizing this after driving for 20 minutes in the car.
Pain-Widespread pain. Tendon pain, joint pain, spine pain, and head pain so intense. Never ending. (Lyme started this pain, and bart makes it unbearable)
-An example. The pain in my hips and legs is more than the bone pain caused by me repeatedly rebreaking the bones in my foot.
Bartonella psych stuff: Apathy, agitation, annoyance, apathy apathy apathy, zero sense of danger or counsequence, impulsive behaviour, antisocial/increased introvertness. Basically just not giving a hoot about anything anymore.
-Examples-I don't feel comfortable recording those but they are terrible.
I hope I answered your questions. I can't remember if you asked any other questions.
Take care, Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thought it would only be fair to answer the questions for myself too.
How many hours per day can you spend out of bed? 3-6 How long have you been sick? 17 years
How many medicines are you taking? at least ten
Are you suffering? yes Can you work? will attempt two days per week next week Can you raise your kids? Yes, but they've adapted to my illness tremendously. It's 3:30pm and I've still not made it out of bed Are you on disability? Yes What are your three worst symptoms? pain, brain fog, zero energy
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
Suffering: more emotional than physical at this point, as I'm well enough to really see the devastation Lyme has wreaked on my life, although I would take this over the physical suffering any day
Work: limited hours
Raise kids: Lyme took my child-bearing years and we are too poor and sick to adopt, thank God for pets
On disability: no
Three worst symptoms: insomnia, glucose/carb intolerance, fatigue
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Well, when asked these questions, I guess I'm doing pretty good.
Treated around 3 years (including lots of parasite treatments) infected at least 15 years, but have no idea. No tick bite memory.
Off all meds except a sleeping pill, pulse Diflucan, and continue daily supplements like probiotics, Curcumin, etc. Have to eat expensive food.
No real body pain, sometimes headache comes on. Raising 3 kids, one child who has issues which takes a lot of extra effort, keep a good home, good marriage. Work out w/ weights, or walk outside.
What's left? Probably Crohns or colitis, inflamed GI tract- trying to heal with Paleo diet (no grains, no dairy, no legumes) So far so good, but...not fixed yet.
Biggest complaint (today) I still can't 'plan ahead.' Some days I am just really tired, and my gut is giving me grief. Makes me feel antisocial. Don't count on me for events requiring lots of stamina. I like to be at home.
Get feelings of being overwhelmed- my sleep is still off too. Don't know if it's 'normal' because of life circumstances, or not.
But, it's a lot BETTER. And, I really have made positive strides in my health. So hang in there and keep on -
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
How many hours per day can you spend out of bed?
Varies widely depending on how much sleep I got within the previous 24 hours (I am often up for extended periods of time due to severe insomnia).
How long have you been sick?
35 years
How many medicines are you taking?
Flagyl, Zofran (gut not working, can't do orals)
Are you suffering?
Yes
Can you work?
No - haven't been able to since 2006.
Can you raise your kids?
No kids - Lyme makes that impossible for me. But I would not be able to raise kids, I am way too sick.
Are you on disability?
No...need it, but they say I don't qualify (!).
What are your three worst symptoms?
Gut problems (Gastroparesis & inflammation, food allergies/intolerances, etc.), Brain problems (Vertigo, insomnia, memory/concentration issues, etc.), and Fatigue.
-------------------- -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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