posted
Hi, I was at a 1-2. I now function at mostly 4-6 with a few 3's thrown in. Of course it is hard to say because this thing worsens at any time without warning. I can start out having a 5 day only to end up at 2 or 1.
Okay, well the numbers caused a misunderstanding between my doc and I. I think there is a difference between how I feel and how I function.
Some days I feel great (not very often) but still can't do anything. I am hypersensitive to everything so have to live in a protective environment. Public places are not protective.
So because of the confusion with numbers I defined what each number means to me in terms of function and the doctor keeps it in the chart so when I say I am a 4 he knows exactly what I mean.
I know that is way more info than you asked for. There are defininately degrees of suffering with this thing. I'm sorry you are so miserable. Cathy
Posts: 71 | From Warren, Mi, USA | Registered: May 2003
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I vary depending on what's going on in my life and what treatment I'm on/how I'm responding to it. At my worst I'm a 1, at my best probably a 4. My average day is probably around 2.
In the past, I got up to around an 8 after IV treatment two years ago, then relapsed after about six months. It's been a lot of ups and downs.
--Annie
------------------ ``The best way out is always through.'' -Robert Frost
Posts: 2184 | From Rochester, MA | Registered: Oct 2000
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
just so you understand where I'm coming from, I'm a nurse....on a pain threshold, which I work with with patients every day...a 1 is the BEST level to have with pain, and a 10 is the WORST level to have...so I was just checking...k?
before tx I was a 3 or so, then after start of treatment for babs, bart and lyme I went down to a 1-2 for a few months...
now most days i'm around a 9 I"d have to say after 2 and 1/2 years of orals...I don't herx during my period or full moons anymore which is good...only if I add in a new supplement. I pulse my orals now, adn I'm on tibetan herbs daily to balance out my system...
most of my neuro stuff is gone now...occasional weird symptom creeps up on me..but most days, very good...
Lisa
[This message has been edited by lla2 (edited 28 October 2004).]
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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once bitten
Unregistered
posted
at my worst, a 1 or 2. now, at my best an 8 or maybe 7..so that's pretty good. able to do hard barn work and gardening stuff, building a hen house etc. and i am a GAL with lyme who just turned 52. so that's good. as long as I am on IV tx I am good to go most days. I have been on tx since 96, tho not all good tx and not consistant. most improvement with dr B in last few years. screwed up and moved trusting some other doc, went thru a bad tmie, now better on iV again. but the first year of IV was horrid. just horrid. then one day I woke up and I was BACK.... since then its been nothing but getting better. hang in there.
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