I am still curious about how much this disease is disabling others?
Instead of asking questions maybe you can rate yourself on this sort of general (very general) sample scale.
If you had to rate yourself on a level of 1 to 10 what would you be?
1 to 2 = closest to normal
3 to 4 = sick but still able to work at least part time
5 to 6 = very ill but able to be self sufficient and take care of basic needs (plus family) even if it is a struggle.
7 to 8 = very ill plus making you be in bed more than others and maybe up half the day or so and struggle to do the basic self care
9 to 10 - near totally bedridden and not able to do anything for self and need others to help them
I would like to know what ranges people have been in this disease.
For me, over the last 10 years 7-8 range for most of my time 5-6 here and there for maybe 20% of the time 9-10 for 20 % of the time 3-4 Working on 3-4 first time (very recent months) (but I am not going to work until time goes by that assures me I am strong enough that going to work will not risk me a relapse or regression)
So how about others?
Posted by Florence1 (Member # 22960) on :
7-8 right now...............
Posted by blinkie (Member # 14470) on :
7-8(2.5 years ago at diagnosis) 5-6(1.5 years into treatment) 3-4(2 years into treatment) 1-2(currently)
I have not been working since diagnosis. I made a lot of improvement over the years. but, I have made the most improvement in the shortest time in the past 6 months. Treating parasties and malaria/babesia treatment helped the most.
Posted by sixgoofykids (Member # 11141) on :
By the time I got diagnosed I was a 9. There were times I could get up and leave the house, but I needed help walking because of weakness and imbalance. Someone needed to prepare all my meals. If I went downstairs, I needed help getting there.
Now I'm better.
Posted by kday (Member # 22234) on :
I was a 10 when I got sick.
Now I am a 7-8 and improving steadily. I probably could do more than I do, but I try not to tax my body. It needs extra rest. I am still not comfortable driving, but getting close.
What does that mean? Progress! Posted by Keebler (Member # 12673) on :
- . . . "curious about how much this disease is disabling others?"
This article shines a bright light on that - it's not just about when to suspect lyme - this shows the many profound ways lyme affects some when just trying to do even the smallest task:
When to Suspect Lyme - by John D. Bleiweiss, M.D. -
Posted by blinkie (Member # 14470) on :
honestly, I was probably worse than I think I was all along, I just pushed myself to function. I can't even imagine being a 9 or 10 on this scale.
Six-when you say you're better...do you mean in remission? No symptoms?
Posted by onbam (Member # 23758) on :
1-2
My symptoms are widespread but were never severe, thank goodness. My LLMDS speculates that this may be due to the doxy I received after my bite. When it first got to my brain I was a 3-4. I have been an incredibly slow responder to treatment.
I suspect that what happened was that the 200 mg of doxy in fact aborted my immune response, making me go chronic very quickly, and that the mildness of the symptoms and the slow response are both due to a high level of immunosuppresion. My CD-57 5 months in was 20.
[ 07-18-2010, 09:49 PM: Message edited by: onbam ]
Posted by sixgoofykids (Member # 11141) on :
Blinkie, no symptoms, no ongoing treatment.
Still working on my gut, but it's a lot better. It was the hardest hit by both infection and treatment. I had lots of bacterial overgrowth, parasites, etc., so I'm trying to rebuild the gut flora now that the infection is gone. Raw veggies are all I have problems with now, other than that, it seems pretty healthy/normal.
My adrenal glands are healing well, too. I'm sleeping through the night again and I get tired in the evening, which never happened when I was sick because I had such bad adrenal fatigue.
Our organs take such a big hit with this infection and it takes time for them to heal.
When I was sick, there was NO WAY I could push myself to function. I had hours I could get up and shower, OR go to the store with my husband (but never alone).
Now I am 100% functional. I even got certified to teach pilates. Posted by mbdq (Member # 26277) on :
I spend about 80% of my time in a 5-6
Other 20% in 7-8
Was the same before treatment- I am 9 months in, but very very slowly seeing improvements, after at least 8+ years of undiagnosed Lyme + coinfections.
Posted by jkmom (Member # 14004) on :
My daughter is a 9 and has been for more than 2 1/2 years.
She has had a few days of being an 8 and about a month of being a 10.
I have always been a 1 with just a few symptoms.
Posted by BoxerMom (Member # 25251) on :
I've been acting like a 3-4 for 18 years, but I was probably closer to a 5-6. With no diagnosis, I was in huge denial as to how much my illness affected me.
I dragged myself through each day, and hit the couch as soon as I got home. My husband did all the cooking. I spent lots of weekends in bed, so maybe some time at 7-8.
In year three of treatment, I am now a 1-2, unless I'm having a big herx.
Posted by LymeMom Kellye (Member # 24807) on :
My 16 YO daughter had an engorged tick removed at age 5. This is her life:
3 to 4 = From age 5-15, sick but still able to go to school, but missed 20-30 days every year. Would play sports, but always had to rest for days afterwards.
5 to 6 = From age 15-age 16, very ill but able to be self sufficient and take care of basic needs (plus school) even if it was a struggle. Managed to be on the honor roll, but was sick 65 days last school year.
7 to 8 = From age 16 to diagnosis in 02/2010, with a few 9-10 days thrown in. Unable to go to school, and some days unable to even brush her teeth ( I guess thosse are 10's)
9 to 10 - near totally bedridden and not able to do anything for self and need others to help her. This began with treatment. 2 months on mino, and kept getting worse.
Switched LLMD's and got on a multi-drug protocol and nailed down the co-infections, and she is now a 7-9 most days. Every once in awhile she has a 3-4 which is awesome.
My husband has been bitten by many ticks and grew up on Long Island. Planted trees in N. CA for many years and had many more bites/rashes. He has had symptoms for 15 years and treatment for a month.
Prior to treatment he as a 5-6 for the past year, unable to work, but could manage cooking dinner 1-2 nights per week.
7-8 after beginning treatment. Now that he is on a full dose of doxy, he is a 9-10 and really struggling. toilet:
Our LLMD says for him it's going to most likely be a really, really rough ride, but that if he sticks with it, he will get his life back! At least now he has hope and doesn't feel like he has nothing to live for.
:
Posted by JunkYardWily (Member # 24271) on :
wow...
im 3-4 and complain a ton. live insnt very enjoyable but much better than other i guess.
feel sick all the time, cant do much social.
Posted by nellers78 (Member # 26774) on :
5 to 6 = very ill but able to be self sufficient and take care of basic needs (plus family) even if it is a struggle.
It gets worse every month but I'm hoping the treatment will start next month so I don't get too much worse.
I can make the kids meals, do some laundry, clean up a bit and so forth but shopping, running errands and so forth I cannot. So, I guess I'm somewhere in the middle.
Posted by novy (Member # 25987) on :
it's been so long since i've been a 1 that i don't even remember what it feels like! i think i've gotten so used to what might be a 5 that i've convinced myself that it's the new 1!
Posted by Haley (Member # 22008) on :
When I was first diagnosed a little bit over a year ago I was a 9-10. My brain and my body just were not working. I had someone taking care of me. I was sure that I would go on disability but after about 2 months of treatment I started to feel better. At that point I was about a 7-8. I somehow managed to keep my job and work part time.
After one year of treatment, I felt that I was at a 5-6 much of the time.
Recently, I feel that I am going backward and experiencing some of the symptoms that I thought were gone. I'm hoping that isn't the case. I'm doing everything I can to keep my job. Recently, I am a 9-10.
Posted by erikjh1972 (Member # 20964) on :
over the past two years ran the whole spectrum. last year spent most of it in the 5-6 range--still mostly went to work though.
now im 1-2. most symptoms gone.(still in treatment)
Posted by Need Lots of Help (Member # 18603) on :
I am a 7 - 8, I struggle a lot.
Posted by Dekrator48 (Member # 18239) on :
7-8 for 4 months (2 years ago) after trying Ambien CR for sleep and the undiagnosed lyme went wild..stopped the Ambien CR and then was a...
5-6 before starting treatment 17 months ago
3-4 currently...still in treatment.
Posted by BackinStOlaf (Member # 23725) on :
I'd say a 2. I am able to work full time. I feel good most days. I am more mentally sick because the disease worries me so much.
Posted by merrygirl (Member # 12041) on :
6
Posted by lymeladyinNY (Member # 10235) on :
5-6 right now, but until last year was at 7-8 or 9-10 almost all the time (for 6 years straight). Thanks to a very, very good LLMD I have improved greatly.
Will I ever be able to work again? Doubtful. Will I ever be able to care for my special needs son again? No. So, even at level 5-6 the nightmare and physical/mental/emotional pain continue.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by lymeladyinNY: Will I ever be able to work again? Doubtful. Will I ever be able to care for my special needs son again? No. So, even at level 5-6 the nightmare and physical/mental/emotional pain continue.
Keep fighting. I can't believe I got better after being so sick, but I did.
Posted by steelbone (Member # 14014) on :
3-4
i am playing golf 3 times a week which i wasnt able to do the last few years
I am starting to sniff 1-2...probably have another 6 month til i'm normal
All i can say is thank god for alternative medicine
Posted by aiden424 (Member # 7633) on :
I was a 10 for the first couple years after I got sick. I'm now a 7 to 8.
Kathy
Posted by LA (Member # 26353) on :
Some days are 3-4, some 5-6, others 7-8. I am a week into treatment.
Posted by Wonko (Member # 18318) on :
At my worst I was an 8-8.5.
Most days now I am a 4, but a Herx or other trigger can easily spike me back up to 6. I think the lowest I've hit is a 3, and it was fleeting.
But I'm getting there, 20 months of treating and counting...
Posted by cactus (Member # 7347) on :
5 years ago - I was a 9.
Had to be carried up and down stairs, often needed help walking on level ground (I was wobbly). If I managed a shower, it wore me out.
The pain was unreal.
Now I'm at 1 - 2. Life is good.
I still have adrenal, thyroid and gut issues. Sort of the fallout of Lyme and co's. But they are all improving.
Posted by triathletelymie (Member # 26456) on :
1-2, some 3-4 (7-9 months ago, 10/09 to 12/09, undiagnosed, just a few pre-syncopal episodes due to heart arrhythmias, unknown at that point...still able to work, but stopped driving, due to the possible syncope/seizures, still able to function)
3-4 (5-6 months ago, 1/10-2/10, still undiagnosed, only able to work part time now, in the ER every other week, with spiking BP and pulse, coded in the ER once, entire body tremor similar to Parkinson's, muscle twitching everywhere)
5-6 but mostly 7-8 (3-4 months ago, 3/10-4/10, still undiagnosed, not able to work, no appetite...lost 25 pounds in six weeks, still spiking BP and pulse, heart palpitations, brain issues...cognitive dysfunction, brain shocks/zaps when trying to fall asleep at night, drunk/drugged feeling all of the time 24/7, inability to concentrate and multi-task, short term memory loss, muscle twitches everywhere, tinnitis, depression)
5-6 (2 months ago, 5/10, finally diagnosed 4/10 and starting antibiotics, still unable to work, heart and BP stuff seems under control...cardiologist prescribed beta blocker, all other symptoms still there...especially neuro ones...brain stuff is the worst, still unable to drive, work, coach, anything)
3-4, some 5-6 (1 month ago, 6/10, still on ceftin/biaxin combo...no change in symptoms, able to start some part time work, but it is a struggle, especially, with feeling drunk, cognition, multi-tasking, etc. All symptoms still present, except for cardio, mostly neuro, now with added depression and anxiety)
3-4, some 5-6, a few 7-8 (currently, 7/10, all symptoms the same and when in the sun for even a brief period of time, the 7-8 comes out...not fun).
'Want to be all 1-2 SOON! Posted by supergirl (Member # 26936) on :
I'd say I am a 5-6 right now. I am fighting to get to the right doc and meds and I just know I will beat this. Even though I feel all the symtoms "triatheletlymie" feels, I push it out of my mind and get out in life no matter what! I feel that if I got into bed, I'd never get out.
got sick a year ago, out of the blue, where I very quickly could barely get out of bed. Struggled for a month this way...in bed except when at work. Started treatment, various and have been on treatment since then.
I function at about 70-80% most of the time. It fluctuates right now throughout the day. Sometimes I'll dip down to 60% and while out in the world, have such strong desires to be in bed...but I stay out of bed. Figure, I'm in pain etc might as well be out in the world doing as best as I can.
Posted by kellephant (Member # 24885) on :
i'm usually a 7-8... was a 9-10 before thyroid medicine and tried to hold down a job... it nearly killed me.
Posted by farraday (Member # 21494) on :
I was a 10 for at least 5 years, rarely out of bed, on IV pain meds, O2, etc. After long, heavy IV antibiotic therapy in hospital, became about 6 and no one knew why I had improved. Then I gradually regressed to 8.
Was declared totally disabled by the state years ago...but no definite diagnosis....so I could not get disability that I had paid for by 25 years of working!
Last year I was finally tested and found what diseases I had had. Brain scan confirmed it.
After 10 months on Bicillin I am working up to a 5-6
Posted by stork (Member # 24167) on :
3-4. Although my fatigue and physical symptoms have never been above a 5, my inability to think put me at a functional 8.5. It's been hard looking normal and seeming normal but being quite ill. But I'd rather have that than the physical symptoms for sure.
Posted by supergirl (Member # 26936) on :
stork, I hear you about the brain fog being the worst...i can take the physical pain, but the brain stuff really messes me up cuz I just don't feel like myself... I want "myself" back!
Posted by sickpuppy (Member # 23846) on :
I've been a 9--before treatment and on an overly aggressive treatment protocol that I was on for 2 months. I've been a 7-8 otherwise.
Posted by UnexpectedIlls (Member # 15144) on :
sick 3.5 years... 9-10, 99% of the time... have had moments of 7-8... but 9-10 is where it is at for me.
Posted by bcb1200 (Member # 25745) on :
At my worst from Feb-April 2010 I was a 4 or on some days a 5. I went to work...barely. I would just sit there.
10 weeks into treatment and I am a 2 (assume 1 is 100% normal.). I go to work, usually have energy, travel, shop, play with my kids, socialize. But I still have nagging symptoms. Mainly sore jaw, ear fullness, ear ringing, eye floaters, calf muscle twitches, and occasional brain fog / room to room forgetfulness.
Posted by sutherngrl (Member # 16270) on :
The first 4 years of sickness.....first 2 untreated, I was mostly 7-8, with some days being a 9.
After 2 years of treatment I started having more 5-6 days, with a few 7-8 days thrown in here and there. I would say 70% of my days are 5-6 days now.
Posted by daniella (Member # 6753) on :
was 3-4 but now 5-6 some days 7-8 ...
Posted by springshowers (Member # 19863) on :
Wow Thanks everyone.. This has been very informative. Interesting how then numbers do seem to coincide with percentage of functioning but backwards.
Such a 1 is 100 percent and 5 is 50 percent and 10 is 0 percent. Therefore a 4 is 60 percent and a 7 is 30 percent functional. It does seem about right doesnt it? I know some people rate themselves by percentage of functionality.
Anyway..
It is interesting to see how others rate themselves. It also makes it clear that there is individual perspective when discussing on this board and if we worked based on these numbers we understand one another better.
I know when I hear lists of symptoms its hard to know the severity or the amount it is affecting someone life etc.
Not it is not extremely important but also it helps put is into a place where we know where we are as well in relation to others.
Like the one person who said they thought that the "norm" was what her child was experiencing which was bedridden and at a 9 or 10 rating. So knowing that is not a "norm" may help that family in their work and treatment.
Its just very interesting actually and I appreciate you all taking the time to post your situations and how it has gone for you.
What is exciting is that I see a lot who have gotten better in increments. Thats nice to see and motivating.
Here is to everyone getting to a 1!
Here we come 1!
BLESSINGS
Keep it up and reminder to not take it for granted as your numbers go down and keep up the hard work!!
For me it seems hard to do. I know that is natural and I am sure others struggle with this too. I do not want to risk a regression of any sort.
Posted by jkmom (Member # 14004) on :
Springshowers,
Thanks for this thread. As the mother of a child who is a 9, this was a huge eye opener for me.
Posted by kellephant (Member # 24885) on :
spring showers,
this helped me a lot too... made me realize i'm worse than i thought, and i handle it better than i give myself credit for!
Posted by keltyl (Member # 14050) on :
5-6 barely. Some days 7-8.
Posted by Hoosiers51 (Member # 15759) on :
7-8 in general.
I FORCE myself to do things sometimes, by drinking tons of coffee.....but it's not pretty, or "fun", even when I'm doing things that are supposed to be fun. So I would say on those days, it's more like 5-6. But it is nothing I could maintain for more than a few hours.
Otherwise, I struggle to shower a couple times a week. Just don't have the energy, and when I do, I try to use it for things like making dinner for my husband, which I do when I'm able.
But if I do something like make dinner, husband will generally do about 7 chores for every one chore like making dinner that I do.
But I am grateful that sometimes I can pull it together to at least keep up appearances, not miss major events, etc.
On bad days, I do nothing, but I am at least not bedridden.
When I first got sick, I was a 9-10 and even anything cognitive was way too much, so I would have never been on this site.
Posted by libby333 (Member # 26573) on :
I am a 7-8 most days. Just taking a shower wears me out for the rest of the day. I'm either on the couch or in the bed most of the day.
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