posted
I'm curious. We are all on here talking and helping, I want to put a face with a name, or more specifically, a wellness level with a name. On a percentage scale how much better are you?
I am about 75-85% better most of the time.
Posts: 641 | From Nevada | Registered: May 2009
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posted
Bicillin got me from 50% to 75% in six weeks, I have been in treatment for 9 months. Lyme, Bart, Babs.
Posts: 845 | From Northeast | Registered: May 2011
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lymeboy
Unregistered
posted
I went from 20 or 30% to 60 or 70% after treating Bart....I still have days when I'm around 20% though
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James1979
Unregistered
posted
I imagine that this question is directed mainly for chronic Lyme patients, right? I hope I don't mess up your statistics!
I have acute Lyme, and I'm 90-95% better after 1.5 months of abx.
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
My daughter has chronic lyme...80% on her bad days and 100% on her good days after ten plus years of treatments.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
90-95% better in 1.5 months? OMG. You hit the lotto. Maybe 20% better after 3.5+ years. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
80% better after 3 yrs high dose oral amox and zith
maintained with herbs and low dose abx for yrs
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Mine has the added difficulty in measuring in that my biggest problems are related to wireless signals and fluorescent lights, and society's obsession with these things has grown since treatment started.
I'd say 80% better after 14 months, but it would probably be 95% better at the drop of a hat if the world would go back to 2010 obsession levels.
Posts: 1927 | From se usa | Registered: Mar 2010
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James1979
Unregistered
posted
Is it assumed for those who haven't indicated that they have chronic Lyme that was untreated or undertreated for a long time beforehand?
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
That was the case for me, chronic lyme, untreated for something like 40-42 years.
Posts: 1927 | From se usa | Registered: Mar 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Chronic lyme - untreated for 10+ yrs.
I am 100% better. But on occasion have some blips when fighting a flu or cold or let my magnesium run low.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
chronic-10 years undiagnosed with a new infection in 2007.
3.5 years in treatment. Started at 20% functioning, now about 85-90% but still have a lot of bad days. I'm looking for more consistancy.
that being said, my biggest issue is no longer lyme, but other infections I got from the 2007 bite.
Posts: 1104 | From N.California | Registered: Jan 2008
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karenl
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Member # 17753
posted
Are you all back to work or just feeling better while at home?
Posts: 1834 | From US | Registered: Oct 2008
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posted
medicated since about march, some days 90% some 50% but I was having episodes where my bone in my face would get a little damaged and my skin would tighten and get soars, so the most terrifying part is gone.
-------------------- Listen. That's all we ask. Posts: 172 | From toronto | Registered: Apr 2011
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James1979
Unregistered
posted
Karen - that's a good question, and I think it has a lot to do with healing.
Fortunately I've been able to stay off of work. I feel very bad for those people that are forced to go to work with Lyme.
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posted
personally been treated amoxi and zith, recently ceftin about 5 months, out of work almost as long thank god for leaves of absence and short term disability. Feelin about 70% most days now 40% on bad ones ( liek today ) planning to go back to work in a few weeks.
Posts: 72 | From chico, ca | Registered: May 2011
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I worked throughout. Luckily, my herxing was pretty regular and was able to work from home when needed during the first 6 mos of treatment.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Started treatment in March. Naturals and tons of supplements.
Not up to my therapeutic level with the naturals, yet, so 0% right now. Nothing is helping the pain, the fatigue, and the brain issues are getting worse with treatment.
No very "good days" any more. Just "a little better" days, lol. I know some are worse off than me, and some are better, but this is where I am at.
I hope to report different results after I have been on my highest does for a few months.
I work full time, and I have had Lyme for 20+ years, possibly longer (since a teenager), but no way of really knowing how long.
I hope this helps.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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posted
Interesting. It would seem safe to say then that most of us are a lot better but looking for the magic bullet to go from 70% to 100%.
Posts: 641 | From Nevada | Registered: May 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I'm not better at all... although I just started IV and finally had 3 good days out of the 14 days... so for me that's GREAT!! I'm praying this means the IV is doing something! I want to get to the 70% better soon!!
It's so nice to see people are getting better, gives me hope.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Been treating with supplements since Nov '10 and abx + supplements since March '11.
I went from being so weak just 4 months ago I couldn't walk up the stairs to my bedroom (had to crawl on my "bad days") to jogging 2 miles on the treadmil again just this week! YAHOO!
I'd say 60% on the bad days and 90% on the good days
Great thread, it's interesting to see where everyone is at!
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
18 years undiagnosed. Lyme, Bart, Babs.
In my fourth year on oral antibiotics (multiple, high dose a la ILADS), herbs, supps, detox.
I'm 95-100% when not herxing, maybe 70-80% when herxing, depending on severity.
I have worked throughout treatment, to my detriment. I think I would have made better progress with adequate rest.
Dan - It's interesting that you point out that many of us are trying to go from 70% to 100%. My LLND told me the last 15% is the hardest to achieve.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Lyme/Bart undiagnosed & untreated for over 30 yrs.; 0% better after 2 yrs IV abx. Every time we try to go after the Lyme aggressively, I crash and my gut shuts down and I wind up not being able to stay on the treatment.
History of misdiagnosis as autoimmune GI disease, given lots of steroids, immune suppressants, etc., and I have many, many, many food/inhalant/herb/medication/animal/contact/chemical sensitivities and allergies, and I also have an immune deficiency with my regulatory T-cells, so I am a very complex and difficult case.
I have also taken lots of herbs prior to Lyme diagnosis that should have lowered the germ load but didn't...probably because of my messed up gut (malabsorption, malnutrition, disordered motility, inflammation).
I have gotten progressively sicker and sicker with each decade I've been alive, so am not looking forward to the future unless my doctor can figure out how to treat this horrendous infection. Next plan of attack is with Tindamax...we'll see what happens...
-------------------- -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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posted
My son has been ill and undiagnosed for at least 8 years. He is on his fourth month of treatment for Lyme, Bart, RMSF, Babs and is about 60% better on good days (about 7/30) and 30% better the rest of the month.
Considering how very, very ill he was---this is miraculous!
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
undiagnosed for 16 years. Miraculously healed after the herx from hell. Treated with Iv abx for almost 2 years. 100% better. Lyme free according to fry lab results.
-------------------- Blessings to you! Posts: 141 | From Southern California | Registered: Mar 2010
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posted
wow I am not good for this group. I am about 30% better after 9 months on only omnicef from my llmd.
He says I am in remission??? Still feeling just as sick as day 1. I have a few days at 30% better here and there?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I was probably infected 1 year or so before treatment began for Lyme + Bab.
On oral ABX for 8 months so far-- Mepron was added for the past 60 days and counting.
I'm 90% better but only recently-- this month to be exact.
I haven't had any 'bad' days lately at all. But the good ones are still accompanied by some upper back/spine pain and a stiff neck. Both come and go throughout the day and vary in intensity. Tollerable but VERY annoying !!!
Hope to say 'bye bye' to these remaining symptoms soon.
Posts: 29 | From New York | Registered: Dec 2010
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posted
Wow, I am not any better really after almost 5 years. My Neuropathy is getting worse too....
this sucks, glad to hear some of you are feeling somewhat better
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I'm 95+% most days after 13 months of treatment. Lately I've been feeling near 100%, with only a few minor sx remaining.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
There are 3 of us:
Me: undiagnosed 30 years and have worked as a teacher past 18 years, started treatment in June and although my labs look better, I feel worse after stopping plaquenil. I think I am 80% most days but definitely crash and have 40% days.
Oldest: congenital Lyme undiagnosed 17 years, he was always at 90%, now at 95% and heading off to college in the fall. He was in the top 10% of his graduating class but feels he can focus better now. Joint pains are gone.
Youngest: undiagnosed congenital Lyme for 15 years. Bedridden and at 20% summer of 2010, now he is swinging from 50-80% with no consistancy. He is currently on IV antibiotics. He is currently herxing on artemesia. One year he will have a good summer again! I'm amazed at how far he has come and amazed it has taken a year. How naive was I going into this disaster of a disease?!
I can add 2 more family members:
Sister: Undiagnosed Lyme 28 years until this past October. She is worse with treatment and often has horrible days at 20%. Then things seem to go OK for a day or two and she can play with her son. Those days are probably 70% at best.
Nephew: age 5 and newly diagnosed, not in treatment, a few symptoms, operates at probably 95%.
We should have a way to have a 100% virtual party when we hit our target.
Good luck everyone!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I was undiagnosed for 12-15 years.Have been in treatment full time since Aug.2010.Most days about 85-90%,still feel like I have a ways to go. So glad Im not where I was last fall!
Posts: 342 | From northern california | Registered: Dec 2010
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posted
Symptoms began after bad bout of flu in 2000.
No LD/bart diagnosis, testing or treatment until 2008.
80% better after a year and a half of doxy, biaxin, flagyl, zith, and levaquin.
6 months of Tindamax/cipro got me to 100% about a year ago. So far so good. Not taking any abx now, but still take calcium, magnesium, vitamin D3, and a probiotic.
I don't know why unless the mepron I got from Canada was not good because I started it a little over two weeks ago and that is when I began the plunge. I just started Malarone from local pharmacy. Rolling spinning vertigo out of clear blue after 6 months without it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I am around 80% or so on most days. Symptoms remaining are: Foot pain occasionally, random poking (pain) sensation in arms, legs and feet. I also get cheek numbness.
My doctor wants to take me off ABX for 2 weeks next month.
I have been treating for 9 months or so.
Posts: 100 | From USA | Registered: Sep 2010
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posted
I started out at 15% when I began treatment in Jan 2007. I am 100% well today.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My history is more like a roller coster.
May 2000 The "flu", high fever, and sweats from hell that landed me in the hospital. Functioned at about 10% with fried brain. Slowly gained health without abx in a years time.
Had 3 functioning years at about 90% without abx.
Relapsed in 2004. Took a year to recover. Good for one year at 85%.
Relapsed 1n 2006 to 15%. Very Bad. Not coming out of relapse at all. Called Michigan Lyme Assn. and sought out Lyme Md. First time diagnosed with Lyme Oct. 2007. Treated with Abx.
Returned to work August 2008 at about 75%. Good days/bad days.
December 2010 reached 90-95% still on abx.
Crashed and relapsed April 2011 with Myco pneu. and stress and currently have reactivated Lyme. Functioning about 50%, but worked 1/2 time every other day for 3 weeks.
My goal is to get back to the 90% functioning I had so I can return to work in August.
Posts: 1954 | From Illinois | Registered: Aug 2007
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After 6 months of antibotic & supplement treatment I was 60%-80%
Now I'm at the 13 month marker & I'm between 90%-95% on most days. I have portions of my day that are 100% but never a full day. My symptoms are usually worse at night when I'm tired.
I feel the last 10% is going to be an uphill battle with slow payoff. I just don't see the drastic improvement I did early in my treatment. However, I grateful for every step forward.
Best of luck to you all!
Posts: 44 | From Midwest | Registered: May 2010
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posted
Having been on rifampin for 9 days now, this drug alone has brought me more improvement than years of other stuff, in only 9 days.... question is, will it last, or will the improvement fade? Scared...
Posts: 641 | From Nevada | Registered: May 2009
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posted
Wow, glad to hear some people are doing well. I was bit fall of 2009. Started treating with oral abx in August 2010.
I improved some - maybe up to 40% for a while after taking Doxycyline and Ceftin for Lyme. Took a break, now I'm trying to treat Bartonella. I also have Babesia.
I feel aweful and seem to be getting worse. Maybe 20% now. My system is very sensitive to everything (even before Lyme)- food, meds, dust, and the list goes on so most antibiotics don't work for me.
I can't tolerate Levaquin, 9 days and I was getting the beginning of tendonitis on only 1/2 a pill. I'm scared to start Rifampin. We'll see.
Posts: 63 | From Millersville, PA | Registered: Jul 2010
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posted
Wrong diagnosis for 5 years (CFS/FM). Unable to work for 11 years now.
Last 6 years worked with two different LLMDs. Treated with a lot of various antibiotic combos, herbals, supplements, detox, diet.
Currently on a "maintenance" program (herbal/supplements). I average at 65%.
Mainly have residual problems with cognition, fatigue/stamina, TMJ. Dr. says that these are the result of damage caused by the chronic lyme disease. I'm taking brain support supplements, and supporting adrenals.
Still unable to work. Maintaining home responsibilities is a challenge. So is social life.
Good health to all.
Posts: 873 | From WA | Registered: Dec 2005
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I was maybe 40-50% when I started treatment. Currently around 90-95% today with mild (and difficult to clear) symptoms remaining.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Chronic Lyme for 20+ years, dx Oct. 2010 treated with abx at first became so sick LLMD took me off abx and started herbs/supplements along with a gluten, sugar, dairy free diet. Can't see much if any improvement. Will have a good day every now and then, unable to do much so mainly housebound.
Will start abx low and slow next week. My LLMD said about 40% is about all I can expect but would love that.
Posts: 1058 | From VA | Registered: Oct 2010
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