posted
75% both cognitively and physically. I work. I am not quite who I was, but I can definitely keep my job. Feel pretty good in the morning, very tired by pm. Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think what is 50% for one person might not mean the same for another person; so take that into consideration.
I would say I function at 25% of what I use to function at, because I use to be a very active person. I am not able to work at this time, much less all the other stuff I use to be able to do on top of that.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
It often depends on what medicines I am on. Today, I am about 60%. I've been on Rocephin everyday but will be changing my meds. Tomorrow I may be at 30%.
Posts: 2232 | From USA | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
80% (some days feel 95% mentally)
I'm 5 months into treatment
Symptoms remain: 1) Weight Loss 2) Hair Loss 3) Low Body Temp
I know I have a ways to go... but so far Dr B's protocol has been a life-saver.
I completely plan on doing maintenance treatment after Dr. B's (Salt C, herbs, humaworm)
I've thought about Rife but just don't know if I want to go that route.
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I'm at about 90% on most days unless I'm herxing.
Yes, I'm still herxing after almost four years of treatment.
I am not working right now.
-------------------- 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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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I'm at about 90%. I've been on mono-abx therapy for two years and was undiagnosed for 22 years.
I went from about 15% functional to 90% unless I'm herxing. Serious CNS and neuro issues were my main problems.
I don't work because I home school
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
My current average is 25%. This is up from my lowest point of 10%, but down from my last peak of 35%.
Currently: Physical--20% Mental--30%
I'm unable to work or even keep up with basic household chores. We have had to hire a woman to clean, and we get weekly meals delivered.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
30%. Can't drive any distances w/o neuro symptoms, can't walk in malls/stores many times, can't do physical exercise, muscles always very tight. Head cloudy/pressure, can't work much.
Seeing many are 70-90% after two years makes me realize I'm probably attacking the wrong illness.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
seek,
Have you tried herbs, anti-parasitics, salt C?
Just curious because those seem to take the guessing part out of the equation. They hit everything!
Where abx's typically focus on certain bacterias/viruses/fungals
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I would say around 30-40%. Can't exercise (was a cyclist a year ago). I feel very fatigued and worn out, yet stimulated by anxiety, so I have trouble sleeping during the day. I don't go out much. I can pretend like I am well when going out, but it wears me out. I only drive short distances. I feel pretty mentally messed up most of the time with not much I can do about it.
Cold hands and feet all the time. Sometimes I feel like I am coming down with the flu, but body temperature usually normal during the day. Episodes of tachycardia (today it was after sneezing). Chest pain nearly all the time. Antioxidants and turmeric help with all symptoms, so I figured out how to have a few hours of feeling ok during the day.
Couldn't hold a job right now. I previously had 3 (none stressful). Cooking for myself makes me dizzy. I shave on "good days". I prefer eating out at nearby "healthy" restaurants, but it's hard to find things that are wheat/dairy/fruit/sugar/egg free. They must think I am such a hippie. Just want to get better, that's all.
So, I'm healthy enough to get out of the house, but not for very long. I prefer lying down.
Joint pain is actually a non-issue for me. I guess they can mildly ache a bit when I feel like I am coming down with a flu, but nothing I would complain about.
Muscles can be an issue with minimal exertion, but if I am on top of magnesium, it is a non-issue. Mag helps the heart too.
I am 23, had this crap for a year now, and I hope I find my path to proper treatment and recovery soon.
I am not good at verbally communicating how sick I am. Even with doctors. Sometimes when I am feeling better, I forget how bad things can be, and leave a lot of stuff out at appointments. I don't think some docs understand either since to most, I have the false appearance of healthy. Intuitive people can see it in my eyes or nails, but hell, even most docs don't look at your nails. I am not overweight, but I have lost a lot of muscle.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
kday,
What treatment are you on?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Kday part of your post looks like i could have typed it- the part about looking heatlhy and forgetting to mention everything at appointments
THAT IS SO ME. I will have a good day and just be like "whatever" and then crap really hits me and i think- now why didn't i ask about this?
What's going on with your nails? Mine have white flecks (i think zinc) and i'm trying to get my lunula (white half moons) back w/ b12.
I also feel like i've lost muscle...no atrophy or anything but just wasting and i'm jus turning 22 next week.
BACK to the actual question of the post I'd say some days 50% and some days 30% emotionally-20% mentally-50%
Posts: 116 | From Texas | Registered: Dec 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
This is all very interesting to me.. Thanks for the posts. Keep them coming.
I think it helps to share and to see what others around us are going through....
KDay.. I relate to you too. when I first got sick esp when I was younger and healthier looking. I forgot to tell them the WORST parts. And of course I always scheduled appts at around 4pm which is the best part of my day..
If I would schedule them in the AM i would barely make it but it might help .
OH By the way.
Giving your doctor these sorts of numbers can really help. They may be there gazing at you thinking your looking good and when you open your mouth and tell them that you are functioning at about 30 percent of what you normally do and as well tell them other numbers such as I can no only walk for 10 mintues or I have pain when I dress or I have to be in bed for 16 hours out of 24 instead of normal 8 and things like that. It can really help. Also throw out numbers for Pain from 1 to 10 and fatigue 1 to 10 and other things.
I have learned to use the numbers in our talk to help them see where I am at..
I have two appts tommorrow and i have to really talk to my pain doc and I always try to take less than more and .. even though he says that is wrong I want to be brave and tough. NO MORE.. Since my recent hospitalzation my pain has increased and I am not going to suffer while I wait for this to pass. I am going to speak up.
: )
Thanks for sharing everyone>!!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I am 95% on good days, with minor joint/muscle aches.
80% on flare days, with more pain and/or fatigue.
I have been about the same ever since I've been sick, before and during antibiotics. Eventually I hope to see improvement, but I'm grateful not to be getting worse.
And I realize that if some of you could get up to where I am now, you would consider yourselves all but recovered, so I have little to complain about.
I had one herx where I was probably 60% for 3 days with a lot of pain, and stayed in bed the whole time.
The days I get fatigue, I am effectively nonfunctioning because I spend so much time sleeping, but when I am awake, I am still able to force myself to do things, very slowly.
I have had several bouts of emotional volatility and what felt like depression but only last for hours or a day--usually just until I slept again.
The unaccustomed feelings of despair scared me pretty bad.
I have always been an optimist with a sense of humor, and I don't know how to cope with anything if those things desert me. I have told them they are not allowed to leave, ever again.
And I have had my share of anxiety for my future, if I can't get rid of this disease soon, or if it progresses to worse symptoms.
(I have only been sick for 8 months, I got initial treatment within 2 months, I have a good LLMD now, and still have hopes of recovering during 2010.)
I don't know how to put a number on the mental/emotional stuff. It seems horrible when it's happening, but I'm still able to walk around doing things.
I have so far kept working ever since I got sick.
Some days I feel so achy and fatigued that I desperately wish I could go home and lie down, which I often do as soon as I finish work, but I haven't missed any days yet due to Lyme.
I don't think I am very productive on those days, but so far it hasn't been very noticeable.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
30-35% this last few months. I'm "normally" at 35%, and can't seem to get past 45% at best. I've been here most of my life, but before diagnosis I was sinking fast down to 10-15% and heading towards death. I had undiagnosed Rocky Mountain Spotted Fever, Babesia, Bartonella and Lyme (as well as other issues). which surely wasn't helping.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I've been in treatment for 10 months, but sick for 7 years before diagnosis.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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posted
I have been off abx since the first part of Oct. I am at 95% most days both cognitively and physically.
I have had Bart and Lyme about 30 yrs and treated for a year and half with abx and then did alternative trtmnt.
Posts: 262 | From ohio | Registered: Jul 2008
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posted
85-90%...headaches, heart palps, slight brain fog remain but more of annoyance now...bh the grace of God i worked thropugh all of this...even when i was at 20%.
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
I am in bed most of the time. Mornings are the worst. I have been ill for over 21 years, but not all of them bedridden.
After intense hospital IV antibiotic treatment for septicemia in 2003 I was finally out of bed and my wheelchair: walking, leading a fairly normal life. It was called a "miracle" by doctors. None of them tested for Lyme!
After relapse a year or so ago I got weaker and weaker. That is when they discovered the LD. Now I would say I am at 10%. But I, too, had been extremely active.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
I am 90-95% and occasionally 100% most days now. When I have occasional flares (when I have a cold, or I am physically stressed), goes to about 80-85%.
My lingering issue is the neuro stuff-fullness in my head, ringing in the ears, blurry vision, numbness/tingling of my face. Rarely, I get other stuff....but the head stuff makes it difficult to sleep, so that is no fun.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
Forgot to answer part 2-I have worked all along, except for the first week (had RMSF and very high fever, meningitis, etc.) OI am fortunate enought to work from home, though, or I never could have done that. Laid down a lot in between work, and my productivity suffered.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Lymeorsomething
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Member # 16359
posted
65%
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
So far this is the breakdown
It is nice to see the higher percentages up there
0-25 3 up to - 50 5 up to - 75 5 up to-100 9
I know its a small pool and it can mean a bit different for each person..
But this is an interesting thing to know about while we are here and sharing..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
About 30%.
Can't exercise, push the vacuum and I'm done in for at least 24 hours.
Walking through the grocery store must be followed by a serious period of rest and cannot make dinner that night.
However!!!!!! I DID go bowling today with an American Women's Group here. Loaded up on pain pills and was determined to go.
STarted sweating immediately from pain and babesia I'm sure, and kept hoping it would be over for the longest time.
When I got home, I knew I had thrown my back out, my shoulders trembled, and my knee felt broken in two.
I will pay for the effort, but emotionally, it was well worth it.
Tomorrow I will be in bed most of the day.
mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I want to add that I feel I am up to 25% from being about 10% when I started. So that makes the 25% not sound so negative. I have improved and want to make that clear.
Also, I think its very hard to judge LD in this manner. So many ups and downs; but still nice to see ppl that have made it up to 75% and up. That would be awesome to me.
I would jump for joy at 50%!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
100% functioning now! With the disclaimer of not always thinking with organized thoughts and having slight memory lapses.
Am doing detox to help with this. Found I have loads of heavy metals to clear up! I'm in clean up mode...that's why I am still online...to learn about clearing the body to work on its own. That's how I got better.
I will take this over not being able to function physically as before. There is hope.
Posts: 1009 | From NJ | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
lightparfait,
did you remove mercury fillings?
I get mine out in 2 weeks! Yippeeeee
Chlorella for awhile after, huh?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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