After reading Dr Islam's posts, it seems that there are 2 protocols-one for "acute" lyme, and one for chronic. Just a poll here-How long have you had lyme before you started treatment? This may make a difference in protocols for tx.
Posted by ma (Member # 10055) on :
That's a really hard question because so many people arent sure when they were bitten.
Many dont remember a rash either.
My son has only been sick for 3 1/2 months, but it came on strong with late stage lyme symptoms.
It's impossible to tell how long he's actually been infected.
~Ma
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by shoney: This may make a difference in protocols for tx.
I think it does to some extent.
I believe I've had Lyme for 48 yrs. Took 42 years to get the correct diagnosis.
Posted by serendipity (Member # 8474) on :
Based on symptoms and energetic testing I was infected 18 years ago diganosed 2 years ago this August
Posted by alliebridge (Member # 9103) on :
I've had Lyme since the late 1990s(Lyme doctor's estimation). I was diagnosed this year, in February, with a positive Igenex test.
Posted by trails (Member # 1620) on :
since 1991 had bullseye rash, tick still attached and eventually tested positive by elisa. a month later. 16 years later i am still positive by WB and more sick now than ever. But I had 9 years of no treatment and very healthy life. (91-2000)
[ 02. October 2006, 12:44 AM: Message edited by: trails ]
Posted by hatsnscarfs (Member # 6562) on :
I was bit by a tick July 04 and had full blown lyme 3 1/2 weeks later. Now on my 27th month of treatment. However, once I started heavy duty Lyme treatment, symptoms I had had my whole life started to go away. I now believe I have had Lyme for 30 - 40 years.
Posted by aiden424 (Member # 7633) on :
I got sick on April 16th 1986, I got a bulls- eye rash two weeks later. I never did see a tick. I've been really sick since. I only got a Lyme diagnosis, and treatment a year a go.
Kathy
Posted by Jellybelly (Member # 7142) on :
At the very least 38 years. There were places I could have contracted it though at least 6-7 years before that. I got my Lyme diagnosis, about 1 1/2 years ago.
Posted by bettex99 (Member # 8109) on :
18 years. Got bit in Nov 1987. Went into remission 1994 after three years of amoxy, relapsed in 2000 been on ABX 6 years.
Posted by karatelady (Member # 7854) on :
Probably 40+ years since I've been sick with one thing or another since then.
Was diagnosed 1-1/2 years ago!
Sandy
Posted by KENNEDY (Member # 9628) on :
I found a bulls-eye rash June 14,2006. thought I caught it pretty early but after tests came back my LLMD said I had to have had Lyme for more than a year.I still don't understand how they can tell if someone had it a year or 20 years.
Posted by Lymetoo (Member # 743) on :
Kennedy....it has to do with the IgG and IgM...read this [again??]
I would explain it myself, but I'm not capable!!
Posted by geniveve (Member # 8646) on :
got bit on june 3, 2005, started treatment in december and downhill since then.
can't tell whether the systemic yeast or the lyme is worse.
Posted by breezywings (Member # 9222) on :
I was bitten first time in 1976 when i was just 13. Had the bulls eye rash on my chest but the docs never figured it out as Lyme was not really a common household name back then.
Without positive test results, I was treated with aspirin therapy for 4 years because of the joint pain. They "concluded" (without lab backup) that I had Juvenile Rheumatoid Arthritis. Yeah, right.
So I have been sick for 30 years and diagnosed 8 years ago. I got better for a few years but I am back in the boat again. Looking back, I never fully regained my strength, even during the *good years*. Posted by Aniek (Member # 5374) on :
I had the bull's eye rash and infection symptoms (headache, nausea) in 1986.
I was diagnosed and started treatment in 2004.
Posted by Truthfinder (Member # 8512) on :
Probably had the bug in my system for about 48 years, based on early symptoms and attached ticks. But more obvious symptoms didn't show up until about 20 years ago.
I still don't have a diagnosis, per se. Just an ultra-high Bowen test last December that I arranged for myself.
Tracy
Posted by lymednva (Member # 9098) on :
I can trace my symptoms back over 40 years. I was diagnosed in April 2006.
Posted by groovy2 (Member # 6304) on :
Hi All I had a big bullseye bruse on my leg 20 long yrs ago--I started getting perty sick in a month or so--
Figured out I had lyme by watching a TV show on it(Lucky)-
I started treatment late 2004--Jay--
Posted by bettyg (Member # 6147) on :
NO BULLS-EYE RASH!
I can go back to age 14 playing softball and having the extreme light sensitivity...43 years ago.
36 years ago 2-70, got bad case of mononucleosis and recent lab tests show it was EPSTEIN BARR VIRUS not named that back then.
34 years MISdiagnosed going to 40-50 MDs/specialist to get a CORRECT dx.
2 years in lyme treatment; 20 mo. on antiobiotics.
on holistic supplements now Bettyg
[ 02. October 2006, 04:02 PM: Message edited by: bettyg ]
Posted by clpgotlyme (Member # 7875) on :
Infected 1991, started treatment in 2005. Cindy
Posted by lymie tony z (Member # 5130) on :
Can trace symptoms back to 1954 when I was 4.
Posible in utero due to mom's symptoms.
went into remission and then returned or possible re-infection in 95.
Or misdiagnosis and steroids brought about immune suppression and lyme dissemination.
zman
Posted by treepatrol (Member # 4117) on :
I will answer 1988 when first exhibiting sever fevers intermittent.
Sick of being Sick screwed by a screwing bacteria. And by a arachnids too the present 10/02/2006
Posted by kam (Member # 3410) on :
I was just wondering about this myself since it is taking so long for me to regain my health.
I do know that I was working one week and not able to the next. That was in Oct. 2001.
I also know that I had a bite with a ring around it before I started noticing the brain and then body changing.
But, I also know I had some strange symptoms from the time my second daughter was born in 1984.
And I recall a rash on my stomach chest that I later saw as a lyme rash on a web site....years later.
But, the symptoms I had did not stop me in my tracks for long as the ones I have now do.
I was able to keep going. I was able to keep the yard up, keep the house up, work, take care of two kids, keep the car maintained, go to college, etc.
Although, all a long I knew something was not right that the docs could not explain or do anything about.
Bottom line for me is how do I regain my health to the point that I am able to do basic household chores again, be a grandmother, read a novel, and drive and have a life beyond lyme disease?
Started treatment in Feb. 2003. Have gone to being bedridden for the most part and in lala land to being able to be out and about in my power chair for an hour or two more days a month than not.
Nice to be able to get out and about and have the neuro skills to keep me out of trouble for the most part.
I still have times when I can't get out and am housebound for a week or so but still working on trying to pace myself so I can get out daily even if it is just down the block and back.
I also have backpacked in all 3 mountain ranges as I traveled across the US in 1976...was i bitten then?
Started backpacking in the early 70's
Camped since a child with the family.
Sure wish more was known about this disease. Mostly how to get rid of it.
Posted by AZURE WISH (Member # 804) on :
symptoms started sept 1987
daignosed 2000
Posted by TerryK (Member # 8552) on :
I had a tick bite 46 years ago at age 5. I started to be sick that year and have had symptoms off and on since then.
I was just diagnosed this year with positive IgeneX western blots for both IgG and IgM and started treatment in April. I've just come up to a theraputic dose of abx since Sept. 5, 2006.
My mother, brother and 2 sisters are sick with similar symptoms. They are now considering that they may be sick with TBI as well. Terry
Oh yeah, forgot to mention that many of our children are sick with similar symptoms as well as both grandchildren from our generation of sickies.
[ 05. October 2006, 12:00 AM: Message edited by: TerryK ]
Posted by bbinme? (Member # 4665) on :
3 years and counting
Posted by monkeyshines (Member # 6406) on :
Just don't know. Was bitten many times growing up and through early adulthood, but no bullseye. Had what now seem like minor (but never explained) symptoms as far back as 15 years, but became really sick 6.5 years ago after a period of extreme stress. Diagnosed 4 years ago.
Posted by Lisianthus (Member # 6631) on :
I've had lyme for 40 years, got diagnosed at 38 years old. I assume I was born with it, both parents and all of my siblings have been diagnosed. Mother got bit/rash before all of us were born. But she was just recently diagnosed. Plus I've never had a tick on me, that I know of.
My sons were also born with it, they are 20,20, 15. We plan to stop the lyme legacy with their generation.
Lisi
Posted by Silverwolf (Member # 9196) on :
My math skills are really rotten,more than usual now. we ahve traced symptoms back to when I was 14 years old[we camped alot w/ my family]. I had a severe bout of Strep w/Mono'in the fall[it affected my legs and 2 and1/2 years later I endded up in the hospital]. A summer or two before,family friends were camping w/ us,and my dads friend had to have a tick removed from his arm pit, at the forestry aid station.
I'll be fifty in November,even before age 14,i was having 'allergy' problems,and pneumonia issues,muscle spasms,sprains etc.,and couldn't seem to stay well. So however many years that all would be...?? I know it seems like forever.35 to 40 years,ago I prolly got bitten by a tick?!! Posted by Andie333 (Member # 7370) on :
I had a tick bite and bullseye rash in 1996.
An ID doctor gave me 15 days of antibiotics. The rash went away, and I thought I was fine.
For the next few years, I'd have periodic weird symptoms -- flu-like things, rashes, exhaustion. Then about 4 years ago, my health really began to deteriorate and anomalies kept turning up in bloodwork.
Nobody in this Lyme-endemic state thought to test me for Lyme, and it was actually my acupuncturist who suggested the possibility that I had something systemic (she guessed it might be Lyme). By then, I was struggling to walk and really thought I might be dying.
I tested CDC positive and actually began treatment in June of 2005. I've improved significantly since then but still have a ways to go.
Andie
Posted by duke77 (Member # 5051) on :
quote: I still don't understand how they can tell if someone had it a year or 20 years.
There is really no test that can tell you how long you have had it. But myself like many people can trace typical Lyme symptoms back many years. Many people wrote it off as normal or old age. And I am sure the doctors did too. I have had symptoms going back twenty years ago or more. It is strange my symptoms started a year or so after my father got the bullseye and they gave him two weeks of doxy and sent him on his way.
Posted by sarahinnewyork (Member # 7179) on :
Hello,
I started treatment (low dose doxy to start with) 7 weeks after bite...2 years ago. Have been in treatment since-
So I've had lyme for 2 years ( feeling much better than I did the first year- although it's still with me)
Because I was new to the US and had been living in Sydney Australia prior to my FIRST WALK IN THE CATSKILLS...where I met my tick...I believe it is unlikely I was infected earlier.
My symptoms came on very quickly and moved quickly to cracking in my joints and arthritic type pains- also neuro symptoms came on very early
Have only tried supplements and ABX- however will start a herb protocol in the next week!!- very excited to see how it goes...
Best of health to us! Sarah
Posted by KP (Member # 9488) on :
I believe I've had Lyme Disease for one year. I started with symptoms in October 2005 and started treatment in August 2006. I am feeling so much better...but unsure of what will happen when I stop the abx in 2 weeks!
I never removed a tick from my body and never had the bulls eye rash. I also do not test positive for the disease. I've lived in this area my entire life but have never had such bizarre symptoms!
I live in NJ which is tick central! I also live in a heavily forested area and spent alot of time last September and October helping my husband as he cleared a portion of the yard to put in sod so the kids could play with less opportunity of being covered in ticks. I pulled alot of ticks off of my husband...but he had the vaccine years ago which seems to have worked for him.
So sorry to hear of so many with LD for over 20 years. My mother has had it since 1988 (with bulls eye rash) but has never been fully treated for it. Not sure if I can talk her into trying treatment with an LLMD. She likes to think her symptoms are from old age (she's in her 60s) but I've seen 90 year olds more active than her!
Karen
Karen
Posted by Michelle M (Member # 7200) on :
Miniscule tick removed from under right breast at age 44-1/2, tossed, ignored it, despite small EM rash which developed there, not realizing lyme was here in northern california.
Within a year, massive migraines developed, memory problems/confusion, fatigue, periods ceased altogether, thyroid took a dive. Took another year to be properly diagnosed and put two and two together (with help from LymeNet), tested CDC positive; also positive for Babesia WA-1.
I'm 48 now. So that's about 3-1/2 years infected; in treatment for a year and three months.
Michelle
Posted by Vermont_Lymie (Member # 9780) on :
I had a tick bite (on my back) in an endemic area in summer of 1992; bulls-eye rash, high fever, joint problems, huge headaches, fatigue, sleep interruption, every symptom you can think of. Dr. PC at Stonry Brook diagnosed me with lyme meningitis (had a positive spinal tap), and I had 10 or 11 days of IV ceftriaxone (do not remember what dose).
Felt better; I did not know that I should have had more antibiotics at that time. I wish the internet and lymenet existed then.
In 1998, had a bulls-eye rash on my arm. I went to Westchester County Valhalla Lyme Clinic when I still had the bulls-eye rash. Doctor there insisted it was a spider bite. They gave me a blood test and said it was negative, so that I definitely did not have lyme.
The doctors at this Lyme Clinic said that it could not be lyme, because ticks do not bite in August, nor on arms. Yes, this is what the doctors at the Lyme Clinic in Westchester told me. Even in 1998 I did not know better -- that ducks are hazardous to ones health, and that only LLMD should treat bulls-eye rashes and tick bites rather than ducks.
My neurosymptoms started or worsened after the 1998 bulls-eye rash. I have been quite sick for the past two years. Started antibiotics (doxy then amoxy) in July. Started supplements in August. Am making some progress!
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