Just wondering how many years most had Lyme before being diagnosed?
Posted by jessicabooklover (Member # 39427) on :
I often wonder this myself. When I was a senior in high school I started to get these days where I would feel achy and terribly fatigued and vaguely dizzy. I attributed it to the insanely hard work and physical strain that went into being a dedicated ballerina, which I was.
I now wonder though, because I always was out in wooded areas in CT and I never even thought to check for ticks and was basically ignorant at that time to the existence of tick borne disease. I will never know for sure, but a partof me thinks I might have had this disease for a very long time.
I do remember getting bit in central park yrs ago when I first got REALLY sick, but I still wonder if that off/on ill feeling I got over the years was really undiagnosed TBD. OYY so hard to suss this out. Anyway, thats my story. Jess.
Posted by ukcarry (Member # 18147) on :
Anywhere between 55 and 36 years, I suppose. Sometimes the immune system fights it off for quite a long time, so hard to be sure unless you know when you were bitten.
Posted by Maya12 (Member # 36392) on :
Hey jess and ukcarry thanks for the responses?
And jess keep fighting the good fight and congrats on the engagement
Hey uk carry are you better?
Anyone else how long and did you get better
Posted by Maya12 (Member # 36392) on :
And jess I know how you feel I wonder if I have had this all my life which is 32 years
Posted by Maya12 (Member # 36392) on :
But my aunt has had it for 30 or so years and is now finally getting better , was diagnosed 2 yrs ago
Posted by TF (Member # 14183) on :
Had it at least 10 years before diagnosis. Treated for 3 years. Recovered for nearly 8 years now.
Posted by jessicabooklover (Member # 39427) on :
Maya-yes, it really is so hard to know exactly when we got this. I am so glad your aunt is doing better, thats wonderful!
And thanks for the congrats , I so appreciate it! xo Jess.
Posted by trimom (Member # 25843) on :
I don't know. I grew up spending summers in forest in MN and had many ticks over my life and thought nothing of them. Last 15 years many others who spend summers have come down with Lyme and other TBDs.
I was bite late March 2010. Things went down hill quickly from there. I tore my meniscus end of May and had a knee scope. My synovium was a mess, very angry and stringy.
My ortho said in 10K scopes she has done mine was worst 3 she had ever seen. I have photos of my LLMD said Lyme infection could not have done that in 2 months. He thought I was reinfected.
I was very active, training 10-15 hours a week doing triathlons, not until I had a second major knee surgery, things went down hill quickly.
How do you all pin point time frame for your infection?
Posted by ktkdommer (Member # 29020) on :
I am undiagnosed/misdiagnosed for 30 years. In treatment for 2.5. Nearly 90 percent better. Fighting some minimal bart stuff.
Oldest had Lyme for 17 years undiagnosed. 2.5 years in treatment and symtpom free. Fighting babesia in blood.
Youngest had Lyme for 15 years undiagnosed. He is the reason we all got diagnosed. He is so much better but so far from being normal.
Sister had undiagnosed Lyme for 29 years. She is not well after 2 failed docs in FL. Improving with out of state doc slowly.
Nephew was undiagnosed for 6 years. He is doing well 6 months into treatment.
Posted by cozynana (Member # 34270) on :
Pro bably have had it for about 37 years and diagnosed about a year ago.
Still have a long way to go. Lyme has played havoc on my body.
Second round kidney stones and high parathyroid currently.
Posted by paulieinct (Member # 17514) on :
I am now 64.
At about age 6, I was hospitalized supposedly for an ear infection, but I remember that my right leg went numb.
About that time, I had my first panic attack with tachycardia. Yes....at age 6. Also had neuropathy in my toes that caused me to scream whenever my mother tried to clip my toenails.
I've had this most of my life, possibly from birth. I believe all my siblings have it. I believe we got it in utero from my mom. Then I believe we had repeated reinfections from ticks over the years.
Born and raised in CT, ground-zero of the epidemic.
My mom had epilepsy (first grand mal seizure on her honeymoon night), early dementia, depression, schizoaffective disorder, swallowing problems, and finally parkinson's. I know now it was all Lyme.
My brother is in denial. He has a parkinson's-like tremor just like my mom. I was developing a tremor too, but it is mostly GONE with Lyme treatment.
Posted by MannaMe (Member # 33330) on :
For my husband - he first got sick in 2000. Never saw a tick or bite. Undiagnosed for 10 years. In treatment 1 1/2 years. Recent flare up - high bp & anxiety.
Posted by bellajo (Member # 28738) on :
I was hospitalized with classic lyme symptoms 25 years ago. Clinically diagnosed about 2 years ago.
Posted by Love my kids (Member # 32876) on :
I can remember symptoms back as early as 4 yrs old or so (anxiety, leg pains, crippling chest pain, irritable bladder, "flu" like illnesses a lot!); I am 48. Diagnosed a little over 2yrs ago. Believe I have had it since birth though. My mother had anorexia, anxiety, depression, arthritis, back pain, insomnia, paranoid delusions, hallucinations, and late onset schizophrenia (tho they didn't call it that back then, early 80's). She also had a 50% miscarriage rate. My brothers both have a laundry list of Lyme and co-infection symptoms and both are disabled, one cognitively from repeated encephalitis and mini strokes, the other physically from pain syndrome. Neither are not in treatment, undiagnosed and won't go to see a LLMD. They think I am "over reacting". My sister has arthritis and anxiety and is otherwise ok. Both my kids have congenital Lyme, ages 7 and 10 yrs. The three of us are doing better, two years into treatment, but Bart, in particular, is stubborn in all of us.
Posted by canadianmama (Member # 36298) on :
My son came home from camping in June 2004 with a bulleye rash
on his arm. As lyme denial/misinformation is HUGE in our area
none of our family
had ever heard of these rashes being a big deal and the nurse he
saw said she didn't know what it was but that it wasn't ring
worm!
He's been diagnosed and in treatment for 10 months and
is doing better, still on the road to health though.
Posted by Razzle (Member # 30398) on :
I remember some pretty bad leg pains when I was 5 years old. Never saw a tick bite or bull's eye rash, but I was bit by a red fire ant in the California desert when I was 4, and I have since learned that fire ants eat ticks.
Symptoms progressed from then on...which led to all sorts of misdiagnoses and lots of "all in your head" and "it's just growing pains" and "just the aches and pains of daily living - get used to it".
I wasn't diagnosed with Lyme & Bartonella until I was 34...
Posted by ukcarry (Member # 18147) on :
Ktkdommer, congratulations on the improvement in your health.
Maya12, thank you for your interest: I do vary as to how I'll I feel, as I expect we all do, but no, am not better since diagnosis 6 years ago. Still hoping though!
Posted by dbpei (Member # 33574) on :
Praying that it has only been since 2006 for me, when I came down with mysterious summer flu followed by migrating joint pain.
Sometimes I worry that it may have been much longer ago - as I recall a time when I heard this strange gritty noise when I turned my head from side to side - about 25-30 years ago. This never went away. That is also when I discovered that I had lost some hearing in high frequency range and MD could not figure out why for such a young person.
If it was that long ago, there is a good chance I passed it on to my daughters. It is a challenge to put all the pieces of this puzzle together.
Posted by Maya12 (Member # 36392) on :
Thanks so much for everyone's replies , I really appreciate it, have many of you at least made some progress on treatment?
I am about 7 months into treatment and haven't progressed much yet
When you have been sick this long , how long did it take many to start noticing some improvement?
Posted by MichaelTampa (Member # 24868) on :
37-42 years. I have made much progress. I started noticing improvement within a week or two of initiating abx treatment.
Posted by phyl6648 (Member # 28522) on :
Not sure the LLMD said I could have it since a child and I am now 70.. Symptoms started 12 yrs ago but looking back guess I have mild symptoms since childhood.. My symptoms started with a vertigo attack / ear problems/ anxiety and extreme fatigue.. Now I think I have ever symptom listed.. Dx 3 yrs ago can't see much of an improvement.. There are some days I think I am dying and others I think I may make it..
Never dreamed this is what my retirement yrs would be like..
Posted by Maya12 (Member # 36392) on :
I just worry because after like 7 months of treatment I really haven't made much progress, is this abnormal or do most not make any progress for a while but just feel worse for quite a while?
I have only felt worse since I started treatment with mild breaks once in a while
How long does it take most to feel any progress?
Posted by Maya12 (Member # 36392) on :
And how many had neuro Lyme and psychiatric symptoms?
Posted by Maya12 (Member # 36392) on :
Can anyone tell me how long it took to improve
Posted by MichaelTampa (Member # 24868) on :
I had neuro and psych symptoms, improved quickly. It sounds like maybe the treatment plan you have isn't the best one possible, based on how you feel regarding your progress after 7 months. Are your remedies being energy tested, or is your doc just guessing?
Posted by Maya12 (Member # 36392) on :
No they are not being energy tested
Do most improve this quickly?
My doc is just treating based on my symptoms
So far I have treated Lyme and some babs
Posted by Maya12 (Member # 36392) on :
How long did it take others to improve?
Posted by Maya12 (Member # 36392) on :
I did take a break from all meds though for half of oct and all nov , and went down hill wonder if this is why I am doing so badly now, I was improving slowly before that but hit a really bad herx
Posted by xrunnerx2012 (Member # 39306) on :
Maya-
I have been treating for exactly 3 months now. I came back positive for babesia duncani, a bunch of IND signs for lyme, and mycoplasma and coxsackie.
I am on Mepron, Zithro Max, Byron White A-Babs, Cryptolepsis, Artemisinin, Sida Acuta, and Bactrim, along with other vitamins and crap. I just started cholestyramine, 1 hour after and 4 hours before taking anything.
I havent noticed any improvement. I definitely feel worse since starting treatment, and I have had only a few really good days in between.
My main symptom is head pressure/headaches/neck pain/ears popping, off balance feeling, and heart pain. I have many floaters + other minor symptoms.
It is really hard to see the light right now. My next appointment is the 17th... I dont even know what to say or ask anymore. I feel like there is a medication out there that could take away this head pressure once and for all.
Posted by Maya12 (Member # 36392) on :
Hey x runner I know how you feel, sorry you feel like crap too
Posted by dbpei (Member # 33574) on :
I have been on ABX for 1 year and then decided to go the herbal route. I am no better than when I started treatment as far as my most bothersome symptoms, but I have made some strides as far as my mood, memory, sense of balance, energy, and sleep.
It is a good sign that you were making some slow, but steady progress. Try to hang in there. This disease is so tough.
Posted by Dekrator48 (Member # 18239) on :
I had lyme and co for 21 years before my diagnosis in Feb 2009.
Posted by aiden424 (Member # 7633) on :
Sick since April 16, 1986. Didn't find out it was Lyme until about 8 years ago.
Kathy
Posted by CherylSue (Member # 13077) on :
7 1/2 years before diagnosed. Treating it for 5 years with relapses. Had to find a more aggressive LLMD to get some relief. Currently, doing about 90% or more on a given day.
It takes months to get better, but you have to stay the course. Relapses can take you pretty far back, so don't stop treatment.
Posted by daphnesmom1 (Member # 39433) on :
Like others, I'm sure it's been longer than I originally thought. Probably at least 20 years prior to dx which was 5 years ago.
Posted by daphnesmom1 (Member # 39433) on :
So if you were diagnosed when you were in your early 50's, like I was, and the body doesn't get overall healthier with age, what's the end game? I really need to think about what will happen in the future, so I can make plans with my family.
I was hoping my 60's would be better, but somehow I get the feeling that isn't going to be the case.
Posted by VV (Member # 38828) on :
I really don't know. The last time I remember being bitten by a tick I was about 15 years old (20 years ago). I have certainly had bouts with mysterious symptoms and health oddities for many years.
At the least, I've had it for two years, but I would hypothesize that I've had it for decades and that my immune system had managed to keep it mostly in check until a stomach virus and coinciding life-stress set the stage for a takeover.
So many questions.
Posted by Al (Member # 9420) on :
1991 positive test and classic bulls eye on legs. I still have the pictures of the bulls eyes, several on each upper leg.
Posted by hanna2010 (Member # 39482) on :
I honestly wish I knew. My major symptoms started in July 2011 but I was not diagnosed until November 2012.
As I look back, I have had many of the symptoms that plague me today. I was diagnosed with Fibro probably 20 years ago and then Chronic Fatigue probably 15 years ago. I have dealt with depression since I was in high school.
I grew up camping and in the outdoors. I do not remember ever being bitten by a tick but who knows. I was diagnosed with Bipolar I Disorder probably 10 years ago. That was so hard for me. Now I wonder, could it all have been Lyme?
I now just pray to get healthy and I will see what the future holds for my diagnoses.
Being diagnosed with Lyme was just as hard as being diagnosed with Bipolar because of the stigma related to the diseases.
Posted by Catgirl (Member # 31149) on :
50 years.
Posted by Kudzuslipper (Member # 31915) on :
25 years. Dx'd 2 years ago. Or maybe longer... Of those childhood leg pains... "Growing pains". Insomnia since I was a young teen.