posted
18 years +, mis-diagnosed with MS, and treated for same until first and only spinal tap that came back positive for Lyme.
Posts: 43 | From Suffolk County | Registered: Mar 2007
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"Illnesses, hover constantly above us, their seed blown by the winds, but they do not set in the terrain unless the terrain is ready to receive them."---Claude Bernard. Posts: 131 | From US | Registered: Dec 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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.
Posts: 2549 | From never never land | Registered: May 2005
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
15 years before diagnosis. Im 39 and only have been on abx for a couple months so far.
75% better but tend to slip back without treatment
45 yrs old
Posts: 142 | From Florida | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
7 years...misdiagnosised with CFIDS & also Fibro
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
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
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Bite/rash at age 44. At 45, began a year-long journey of misdiagnoses. Presently 48. In treatment approx. 2 years.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
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.
Posts: 227 | From CA | Registered: Apr 2004
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posted
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.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.
posted
I was bitten, had rash 15 years ago. Treated improperly, sick most of these years until diagnosed by LLMD 2 years ago. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Over eight years from bulls-eye rash to the start of treatment. I started antibiotics in July 2006.
Posts: 2557 | From home | Registered: Aug 2006
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posted
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!!
Posts: 13117 | From San Francisco | Registered: May 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Undiagnosed twelve to fifteen years and treated for four. Am about 90-95% recovered.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
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.
Posts: 67 | From UK | Registered: Jan 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
EM rash 2000. Negative Elisa and WB - no treatment.
posted
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!
Posts: 13 | From USA | Registered: Oct 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
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
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
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
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...
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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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 .
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