posted
I'm wondering how long do you think you've had lyme? How long did it take for dx?
Posts: 23 | From washington state | Registered: Feb 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Mindy,
I know I've had it since 1996. It just came and took everything away. I've never been the same since.
Took 12 years and 3 months to be diagnosd properly. Course the doc's tried to diagnosed me, mono, Chronic Fatigue Syndrome, low thyroid.
Welcome to LN. I look forrward to getting to know you!
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I don't know.
I'm one of those who started having symptoms suddenly about 9 months ago--went through all the doctors and tests and everything comes back normal. But I feel like crap.
I'm still waiting for a dx (LLMD appt. in 2 weeks).
But I wonder if I've had this all along and it's just now manifesting.
I've had episodes of not feeling well periodically for years (like a lot of other people I guess), so I could have had mild symptoms then.
I spent much of my childhood and young adult years in the woods, the mountains, and just generally outside, plus we had animals, so it's possible I was infected early on.
Now, I had a rough year from the end of 2006 through 2007.
I had a baby in December 2006, then my mom died in February 2007. Had to have my gall bladder out in July 2007. Haven't felt right since then, and then June 2008 all hell broke loose.
So who knows?
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I was diagnosed last May but thinking back, I've had symptoms since my teens. I think I may have been bitten as a child. So, that puts it around 25 years for me. And it all did seem to go downhill fast after I had my second baby, severe sleep deprivation (he was a refluxer), breast cancer scare and then my beloved grandmother died. All within 2 years.
Posts: 581 | From CT | Registered: May 2008
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Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I believe it started in 1991, it took 15 years to get diagnosed. Its been three years since, butIm still sick and cant afford my LLMD, and regular Drs wont talk about lyme with me.
posted
I know exactly when my then 4 year old was infected. August 2006. He presented with the bullseye rash and a flu like virus. (headache, fever, sore neck etc).
Brought him to the Dr's with the bulls eye rash, questioned if it could be lyme, Dr. said no. We left...
Fast forward 9 months later, (May 2007). His knee blew up and he couldn't walk. He was diagnosed properly then....
Received 2 rounds of abx, things seemed quiet...but appears to have gone neuro. Visual hallucinations/other visual disturbances (black outs/blurriness) most disturbing.
Have seen many ologists, MRI's, EKGs, EEGs.... Still tests positive (7 bands). Yet no Dr's want to acknowledge what it is, though have ruled out what it isn't.
Symptoms currently quiet, lulls me into believing all will be ok.
Appt. with Dr. J in May. Financially we can't afford, feeling pressured to cancel by husband who doesn't understand, but haven't yet.
Determined he see the best.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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posted
For 25 years I was told my problems were fibromyalgia, CFS, all in my head, etc.
Almost killed me the year it affected my heart.
Last summer I was finally diagnosed with Lyme. Now everything that has happened physically makes more sense, when I look at it from an infection point of view.
How many years have you had it Mindy?
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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Do not cancel that apt!! My husband sometimes freaks out with me about money too!! That is what men do!!
But, you are doing right by your child. You must ensure that he gets the best!!!
It took me 4 years to get my husband to realize I was sick, and when he did our relationship got so much better!! I never backed down. I told him that I was doing it for us, even thought I didn't know at that time that I had Lyme!
It is a good thing I did not back down because I have now found out that he and my daughter have Lyme. We are all going to meet with our LLMD for the first time on Monday. We have to drive 2 days to get there, but we are going to do it!!
Much luck to you all!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Could be about 24 years. I was being treated somewhat successfully for another medical condition for years, and in hindsight may have had a spontaneous remission (with short bursts of activity)for years.
Posts: 797 | From New York | Registered: Feb 2008
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posted
I had the EM rash followed by the swollen glands, sore throat, and fever in the summer of 2004. During the following 4 years my health declined rapidly.
I was diagnosed with Bell's Palsey, interstitial Cystitis, Trigeminal Neuralgia, Shingles, reactivated EBV, Bilateral Keratitis, etc. Eventually I ended up with Left-sided hemiplegia and was told that my partial paralysis was all in my head.
I was devastated and begged to be taken seriously by my PCP. Even my physical therapist encouraged me to find another doctor or specialist as she said I had actual physical impairments and muscle weakness.
Finally, after firing my original PCP and two different neurologists, I found an internal medicine doctor that actually listened and spent longer than 10 minutes with me. She immediately began running tests and finding all kinds of abnormal results.(objective clinical findings)
To make a long story short, I eventually found my LLMD and was just diagnosed last month with NeuroLyme disease. I'm currently waiting on my blood test results from Igenex and Clongen. However, My LLMD has informed me that because my immune system is wrecked, there is a good chance I will not initially get positive results.
Thankfully my current PCP is Lyme friendly and is more than willing to work closely with my LLMD. Whatever happens, DO NOT let any doctor convince you that it is all in your head!! Be a strong and assertive advocate for your own health and well being. Don't be afraid to speak up or to fire doctors.....remember they work for you.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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posted
I believe I was born with it actually, now 25 years old and have an 11 on a CD57+ test if that tells you anything.
Father and mother lived around Philly for 10 years where I was born, dad grew up there and I think infected in his youth, giving it to my mom later, who passed it to me.
Looking through all my history and thinking back, I had symptoms most of my life - strong, abnormal emotional reactions... was just an 'odd' kid overall and when I would get sick with something, I would get VERY sick.
I may have been infected with other strains though along the way too, and have Bart really bad.
At 16, things finally went chronic with severe depression and psychosis, along with many neuro symptoms, blurred vision, tunnel vision, ringing in ears, tremors - panic attacks.
I had recently started zoloft and they just attributed it all to side effects, ha. It culminated in a Bart seizure of just my right side that lasted 7 hours in the hospital, doctors had no explanation and it went down on paper as a "severe anxiety attack".
From there was diagnosed as everything from major depression, ADD, schizophrenic, Bipolar type 1, OCD, as well as other personality disorders, none of which 'stuck or fit' with things always changing around, and them throwing more and strong anti-psychotics at me, and ignore any physical complaints as just the crazy kid complaining.
9 years of that, 10 doctors and 30+ 'head' meds that only messed me up more, 3 suicide attempts, 20+ emergency room - hospital visits, two car accidents, the second I was ejected at 70 mph head first, bankruptcy, abusive father (thinking major Lyme rage all the time on his part), several failed close relationships, filing a bankruptcy from medical bills.... and you get the picture of my last decade.
Last 8 months my digestive track finally quit on me, dropping 60 pounds in 4 months, when I finally on my own figured out I'd had Lyme with Bart this whole time.
Been having seizures, black outs, the works with the neuro, several weeks ago in the hospital not able to move or talk for two days (on my 25th birthday).
A week ago, I yelled something at my dad and he attacked me, I'm moved out and crashing with people a barely know.
and here I am, kind of accepting the fact that I probably don't have a long time left with no way to continue my treatment effectively.
I feel as though I am a bit different than most here with Lyme, as I've never known life without it, all I've known is the daily pain and mental agony it brings, for my whole life, I wish I had been able to know life without this.
I'm heading to a girls home in a week though, and just do everything I want to, and yeah, I'm happy she's going to have me.
I'm still going to work on treatment and everything, I'm not giving up, but I also know the reality of things, so I'm going to have fun while I can while still working on things.
Wish me luck.
Posts: 17 | From Near Ft. Wayne. IN | Registered: Mar 2009
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posted
Since 1981 with a known tick bite in my foot. Thus I can date all symptoms exactly, including getting full-blown fibromyalgia a year and a half after the bite.
I found out from someone online in 2006. I had seen probably 300 different kinds of medical professionals -
doctors, chiropractors, physical therapists, bodyworkers - and not one recognized the symptoms.
After I found out, I contacted a lot of the former people/places to tell them about the diagnosis.
I still don't think these medical entities are being adequately educated to recognize Lyme and coinfections.
And I don't think it's hard to do, if you just listen to someone list their symptoms and history.
Posts: 13116 | From San Francisco | Registered: May 2006
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Leelee
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Member # 19112
posted
I keep wondering about this. My serious downward spiral began about three years ago, but I think I may have gotten it about 15 to 20 years ago after pulling some ticks out of my scalp. Some symptoms began a year or so later.
I keep thinking maybe I can take it back even further to summer camp in the early 1970's in the Ozark Mountains, Arkansas or after I went horseback riding in 1972 and came down with mono.
The question plagues me every day.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I finally got a dx of Lyme, babs and bart, and I'm on Doxy at the moment.
I'm having what I think is a herx, and I've started thinking....
It seems that every time I've been on abx since I was at least in college, and maybe earlier (can't remember),
I've had similar reactions after being on the abx for several days to a week--I get kind of achy muscles and sometimes a bit in the joints, as well as just generally feeling unwell.
I just wonder if I've had Lyme and company for how many years, and that every time I'm on abx I get a mild herx reaction.
Or am I just reading into things too much?
As much time as I spent in the woods and mountains as a kid and in college, it wouldn't surprise me if I'd been infected then.
Because I'm not out that much now, so coming down with Lyme at this point has me kind of floored.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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sutherngrl
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Member # 16270
posted
Never saw a tick or a rash; but became ill suddenly in May 2006. Took 2 years to get a Lyme diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
9 months and lyme didn't come subtly. My regular Doctor wondered if I had become neurotic. I had no idea what was going on and was confused why I was being treated like a pyscho because I didn't feel better after 3 weeks of antibiotics. Positive blood work, saw and crushed tick, and had a rash. They told me to ignore it and I did and it only got worse.
I've been through 2 spinal taps, IV, and numerous doctors. I can only describe it as the twilight zone.
My biggest question is why is this being ignored with so many people complaining? We have all unjustly been thrown into the wastebasket.
Posts: 743 | From New York | Registered: Apr 2009
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posted
I believe I had it 2 years before getting diagnosed. Also tested pos. for babs. I have
gone through feeling I would definately die before diagnosis. Many neurological, physical
, and emotional probs. I'm happy to report after 9 mo. of treatment I feel about 80-85% better. Also my liver enzymes are finally back to normal.
-------------------- abbyjo Posts: 255 | From Southern CA. | Registered: Jun 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
1+ years.
I know when I got sick and how it progressed.
If you think you could have it get a test after being off a course of antibiotics for 2 weeks.
This will give you the best chance at a positive.
Dr.s will tell you your blood work is good because of good hemoglobin's and low lymph.
If you are sick don't listen to them.
They invade the cells and make them look good but
if they look further there will not be the
protein there they are supposed to have.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I know for sure I was bit in July of 1980. I got the "flu like" illness but self diagnosed it as heat exhaustion.
My health completely changed from that day on. Arthritis, TMJ, periods every 4 months, tired all the time, sore throat all the time.
I never went to many doctors. The few I went to were mostly gynocologists. They all said you are lucky not to get so many periods. Yeah me.
I also went to dentists for the TMJ. One wanted me to have surgery. I said no. My regular dentist shaved my teeth down a bit but it of course didn't help.
Then at 36, bell's palsy and complete colapse into bed. Diagnosed with MS for about a week. Then Lyme - by my sister who is a nurse.
Given an antibiotic challenge with amoxicillin. I was able to open my mouth wide for the first time in 16 years. It was then that I realized how long I was infected.
Today, I am being treated for a relapse that started in 2006. My babesia was never really treated the first time. Also, never given a cyst buster the first time.
I feel better now than I did at 20.
Posts: 472 | From New Jersey | Registered: Dec 2007
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jt345
Unregistered
posted
Hey John S
I hate too say this ,but the biggest reason I can come up with is MONEY. Thia is an very expencive diease to treat.
If You look at insurance companys ,most of them are held by investers,who get regular dividen(spelling ) checks. I would put money on it ,that some of the same investers have money tied up in the medical world . Hostpials ,clinics,the like.
These people are in it fpr one thing (PROFIT), I might be wrong,but look at who owns the banks,grocery stores,chain companies. All they are interested in is turning a profit.
I am not smart enough too get concret proff. But I would bet ,some are involed with both. And this diease eats up money like mad. This is only My thoughts,I have no proff ,only a suspisuion.(spelling) appleseed
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