Wanted to start a running thread here to see how long everyone on the forum had lyme symptoms before they were diagnosed.
Me - 4.5 years
Present Age - 29
Posted by dmc (Member # 5102) on :
17 years
Posted by skimpbiz (Member # 4433) on :
How about also the degree of recovery you've experienced since you began treatment?
Me - 4.5 years to get diagnosed Recovery - 50%
Posted by Annxyz (Member # 9097) on :
I was diagnosed ( neurologist ) with CFIDS / FM in 1996 . I was diagnosed with lyme in 2006 .
I always knew I had a horrible infection and felt intensely fluish .
Recovery : 1 1/2 yrs ABX , and no recovery that I can speak of yet .
Posted by Lymetoo (Member # 743) on :
42 yrs to get dxd 6 yrs treatment 56 yrs old 99% well
Posted by randibear (Member # 11290) on :
bit in jun 05 diagnosed in dec 05 but feel i've had it since about early 2000 something.
1 year of antibiotics and had to stop -- trashed stomach and too many side effects.
now doing herbs and trying to get rid of yeast.
Posted by Lisianthus (Member # 6631) on :
38 years undiagnosed 2 years of abx so far
Posted by Geneal (Member # 10375) on :
Don't know when I got bit....
Maybe the summer we thought I had West Nile Virus.....so that would be July of 2002.
Only been on antbx for six months.
Have seen some improvement with speech, swallowing, walking and reading.
I would say about 40% better.
I am aiming for Tutu's 99%!!!!!
Hugs,
Geneal
Posted by twopuggles (Member # 10971) on :
Wow!! I guess I have been lucky in this case.
It took 2 1/2 years for my diagnosis. I have been treated for five months now. Still working on the perfect cocktail.
I am glad to hear that some of you are almost completely well!
Posted by Kings Park (Member # 11390) on :
18 years +, mis-diagnosed with MS, and treated for same until first and only spinal tap that came back positive for Lyme.
Posted by lalalu (Member # 10854) on :
I think I contracted it 24 yrs ago. I am 39 now. I was diagnosed 1.5 yrs ago. Treatment for one year.
Posted by Andie333 (Member # 7370) on :
I had bite and rash in 1996
treated then wtih 15 days of abx. The rash disappeared but the Lyme started wreaking havoc.
Started treatment June 2005.
Now back at work and about 78% better.
Posted by LisaS (Member # 10581) on :
15 years before diagnosis. Im 39 and only have been on abx for a couple months so far.
Posted by savebabe (Member # 9847) on :
A very long 7 years.
Posted by Patrick (Member # 8108) on :
8 years until correct diagnoses
In treatment for 2 1/2 years
75% better but tend to slip back without treatment
45 yrs old
Posted by 5dana8 (Member # 7935) on :
7 years...misdiagnosised with CFIDS & also Fibro
Posted by bejoy (Member # 11129) on :
20 years since known tick bite and most symptoms. 30 years possible first bite with encephalitis. Treating candida, mercury, IC, fatigue, pain, adrenals for up to 20 years. Diagnosed with lyme 3 months ago. Treating lyme for 5 weeks. So far so good!
bejoy
Posted by Michelle M (Member # 7200) on :
Bite/rash at age 44. At 45, began a year-long journey of misdiagnoses. Presently 48. In treatment approx. 2 years.
Michelle
Posted by k-lyme (Member # 5574) on :
9 mos. sick before diagnosis. I was 13 years old. 4 years later, now 17 years old, still very sick and not any better at all. Been on abx the whole time. Also truck loads of protocols too.
Posted by Lymetoo (Member # 743) on :
Also dxd with Fibromyalgia....1980.
Posted by Ruth Ruth (Member # 11059) on :
I think I contracted it in 1980 during college. That was almost 27 years ago. I am 46 now.
In October of 2005 I had a new bite leading to over a year dealing with skin rashes, a symptom I never had before.
Since then I have struggled with a variety of symptoms that have lead me to this forum where I have learned enough to realize that I have it.
Last year I was able to test and consult (by phone) with a LLMD. After a year of doing what I can with what I know, I will finally have an in person appointment with an LLMD in three weeks. At that point I will offically have a diagnosis.
Posted by heiwalove (Member # 6467) on :
at least four years, possibly longer.
diagnosed myself via this board in fall 2004 (you guys saved my life!); official lyme diagnosis via igenex and LLMD january 2005.
about 80 percent better now.
~heather Posted by clpgotlyme (Member # 7875) on :
I was bitten, had rash 15 years ago. Treated improperly, sick most of these years until diagnosed by LLMD 2 years ago. Cindy
Posted by Vermont_Lymie (Member # 9780) on :
Over eight years from bulls-eye rash to the start of treatment. I started antibiotics in July 2006.
Posted by Robin123 (Member # 9197) on :
Went 25 years undiagnosed. Was figured out last year on the internet by a nurse in Virginia who recognized my symptoms and asked if I remembered being bitten by a tick. Answer: yes. Bitten age 27; I'm 52 now. Was so confused as to what was wrong all these years.
Had initial great response to clindamycin, then it stopped working.Trying to figure out how to treat since I'm allergic to the other abx I've tried. I may need to go the alternatives route. Double-dosing on clinda last week took down the swollen joint symptoms but caused a massive headache. I sure would like to be able to stay on clinda.
The doctors, the public health dept and the media are still not helping to publicize this amazing health threat. Well, we the patients are!!! Go Lymenet!!
Posted by David95928 (Member # 3521) on :
Undiagnosed twelve to fifteen years and treated for four. Am about 90-95% recovered.
Posted by treepatrol (Member # 4117) on :
I was first bitten in 1988 and thats when fevers started. Since then I went through 13 years undiagnosed always getting negative tests results tested 2 to 3 times a year from 4 different hospitals in my area. Then when it got so bad that I could barely walk because of joint pain and my mind was gone.
I finally got a appt with a LLMD in 2001 march and he put me on high dose abx's for a month and I also took 3 day urine test then at end of month I did a western Blot and both tests done by Igenex while I was being primed with abx's the tests returned highly possitive and 2 strains also LLmd treating for coinfections because of the number of times bitten over the years.
Answer your question. Undiagnosed 13 years,, treatment sofar 2001 march, to present 4/3/07.
But Iam am still doing better than before I know in my heart I would be in a wheelchair or dead if not being treated with abx's.
Thank God and my LLMD
ps mother had ms aunt had lupus that in mind i may have been carrying one strain of lyme already.
Posted by sienna (Member # 10980) on :
Diagnosed with CFS??? 1984 Bitten late 2006. Positive Igenex IgM 2007 Taking Doxycycline, multivitamins, probiotics, Omega 3's, homeopathic drops, Calma-C, Vitamin C, Epsom salt baths - about to try seraplus+ with MSM. Ordered KMT24. Being helped by LLMD and Homeopathic Dr.
Posted by lou4656 (Member # 10300) on :
EM rash 2000. Negative Elisa and WB - no treatment.
Greatly improved.
Posted by groovy2 (Member # 6304) on :
Hi All -
18 yrs for me--
for the 27 people that have answered so far it took 373 years to get proper treatment started --
These numbers speak volumes--Jay--
Posted by ByronSBell 2007 (Member # 11496) on :
Mis diagnosed for a year, been treating for 6 months while continuing to downward spiral... Posted by tory2457 (Member # 10384) on :
20+ at least
no bull's eye rash MS diagnosis, but benign
in treatment since 11/06 feeling better already Posted by GRC (Member # 10452) on :
Six and a half years of m/d and treating all the symptoms.
Lyme was a big taboo !!
Was 1994 when I was bite and got sick.
2 year of oral treatment 50% better but have flares and have to go back on treatment when this happens. Have been relapsing for a few months and the herx is almost as bad as in the beginning!
Posted by AZURE WISH (Member # 804) on :
Got sick at age 10.
Got diagnosed and started treatment at 23
By the time I got treament I was already disabled.
Now I am 30 and still disabled... no where near being able to work or have a life.
Posted by polar blast (Member # 9142) on :
this doc was the best but not with lyme..18 years of constant no its not lyme..I went back every year with more bizzare symptoms, but its not lyme..bit 1987 and get treated one month later because of neuro stuff and after that 5 years later to the present..it is the worst disease..I really really wish this upon my old doctor..thanks for destroying my life..he could of ended my suffering in 1996 if he just gave the antibiotics.. eric
Posted by EWT1638 (Member # 11315) on :
Hmm...diagnosed Fibro 1998-9, bit by something 2005...neg WB, been feeling really (as opposed to just a little) stupid, tired and OLD for over two years. Diag CFS 1/07 by duck...waiting for IgenX results about 5 more weeks. LLMD thinks I'm chronic lyme.
The answer is out there... Posted by Annxyz (Member # 9097) on :
A footnote in reference to polar's post :
When I was DXed w/ CFIDS in 1996 ( by a kind neuro doc) I was given 6 weeks of doxycycline by an infect. disease doc as a prophylactic measure . I started getting much BETTER and my "CFIDS " symptoms imroved .
However , after 6 weeks ( and a negative lyme test ) the ABX were discontinued . I quickly became bed bound and miserably ill.
What a different life I would be leading now IF i had been given an accurate test . What a different life we all would have if an accurate test had been administered .
If you know ANYONE diagnosed with CFIDS / FM , BEG them to get an Igenex test . I have stated this to many people and never understand why some people would not WANT to do this , esp given how hopeless a CFIDS DX is .
![[Smile]](smile.gif)
![[Frown]](frown.gif)
![[hi]](graemlins/hi.gif)