How many of you with Lyme's Disease never remember the tick?

[Seasider]

I know there are quite a few boardies here who have dealt with Lyme Disease, either in yourself or a family member. I am curious, how many of you actually remember being aware that you were bitten by a tick?

 

I guess I am just wondering how many folks might be clueless that they have Lyme's because they can't remember the initial incident.

[Spryte]

I don't remember the specific tick, though I've been bitten in the past - just don't recall a bite in conjunction with getting sick. No rash that I recall either. It's not uncommon, according to my LLMD.

[ThisIsTheDay]

I wonder at the Lyme disease diagnosis.  There are many diseases that mimic the symptoms . . .

[sparrow]

I think that it's probably pretty common to not remember the tick. Deer ticks are *tiny*.

[freesia]

My son had Lyme and we never saw the tick. He had 2 tick borne illnesses test positive. He saw a specialist so we are sure he had Lyme (and the other disease). He needed a month of IV antibiotics.

[Spryte]

I wonder at the Lyme disease diagnosis. There are many diseases that mimic the symptoms . . .

Wonder? What do you mean? That's a serious question, I'm trying to understand what you mean. If a person tests positive, you think it is a false positive?

 

FWIW, I was diagnosed by PCR and by Western Blot. I had actual DNA material of the spirochete in my bloodstream. And a number of borellia specific bands on the WB. Plus a number of other tick borne diseases which made it clear I had tick borne illnesses. I'm pretty secure in my diagnosis. And since treatment helped, that adds more confidence.

 

I'm just curious about what makes you wonder about the diagnosis? If you're thinking of people who are diagnosed on symptoms alone, or ... ?

[LibraryLover]

 Body feeling like lead is my most pressing issue associated with Lyme.

You can have Lyme without ever seeing a tick or bulls eye.

[whitestavern]

I never saw the tick either. Also, I had symptoms weeks before the rash--which wasn't a bullseye but about 15 quarter sized red spots all over my stomach and thighs.

[Mom0012]

I never saw a tick and Lyme is very prevalent in my area, so I was even checking for them regularly. My son has not had a full blown case of Lyme, but he's definitely been exposed according to his bloodwork, and I've always checked him as well.

[ThisIsTheDay]

Wonder? What do you mean? That's a serious question, I'm trying to understand what you mean. If a person tests positive, you think it is a false positive?

 

FWIW, I was diagnosed by PCR and by Western Blot. I had actual DNA material of the spirochete in my bloodstream. And a number of borellia specific bands on the WB. Plus a number of other tick borne diseases which made it clear I had tick borne illnesses. I'm pretty secure in my diagnosis. And since treatment helped, that adds more confidence.

 

I'm just curious about what makes you wonder about the diagnosis? If you're thinking of people who are diagnosed on symptoms alone, or ... ?

 

I would wonder if the disease were contracted at an earlier date (hence a positive test) and the symptoms showing now were something else (MS or any other myriad of diseases).  False positives, as well as false negatives, are not unusual, although for different reasons. I'm not saying that I would doubt every positive test, just that I personally would wonder if I'd not seen a tick or remembered a bite.

[Catwoman]

I would wonder if the disease were contracted at an earlier date (hence a positive test) and the symptoms showing now were something else (MS or any other myriad of diseases). False positives, as well as false negatives, are not unusual, although for different reasons. I'm not saying that I would doubt every positive test, just that I personally would wonder if I'd not seen a tick or remembered a bite.

You don't feel a tick bite. You don't always get a rash. Deer ticks are super-tiny. You often get bitten in a place on your body where you never see the tick -- you might think you feel a little scab or something, but you may never realize it was a tick -- and the tick may be long gone before you develop any symptoms.

 

And if you're diagnosed with Lyme, you don't have just one blood test. There are multiple tests to see how you responded to each round of antibiotics, so you're going to know for sure if you have it.

 

I can definitely understand your question, as it really does seem odd that you wouldn't remember being bitten. But let's just say I know from a lot of experience that it happens -- and sadly, it happens quite often.

[MariannNOVA]

Never saw the tick in all our experiences with Lyme and positive testing.

 

Seasider.......I messaged you!

 

ETA: yes, that was what happened to me (what Catwoman said about a scab). I honestly thought I had a blackhead on my upper arm. I don't have acne, never get blackheads, so don't ask me why I assumed this teensy black thing on my upper arm was a blackhead. First, the spot, then symptoms (fatigue like early pregnancy fatigue, pains in my legs as if I didn't have blood flowing but roofing nails flowing, chills, sweats), no bullseye. THEN, after three days of symptoms, I realized what I had........jumped up in the middle of the night and said out loud 'I have Lyme disease.' Scrubbed with a buff puff the black spot, and sure enough, it was a tick. Was at the MD's office 7:30 the next morning.....it was the day before Easter. She shined a light on my arm where I had scrubbed off the tick, and there were rings of tiny red dots......sort of like a bullseye.......on my arm. 90 days of doxy (I am a freak about Lyme disease) but I felt improved in about 30 days.

[bumblesmama]

I livein Connecticut where Lyme is endemic. I have been treated for Lyme (recurrence) three times in the last ten years. Now, granted, my occupation increases my exposure to potential Lyme-carrying ticks. I have never had a bullseye and no way could tell you which tick it was.

 

 

It takes around 28 days from exposure to seroconversion for it to be positive on standard Lyme tests; titers and Western blots my be more sensitive. I have had neurological symptoms appear with a negative test. Around here, doctors put you on 28 days of Doxycycline even if the test is negative, at the first onset of symptoms. I am not one for over use of antibiotics, but I have had friends who palsy from untreated Lyme, and lost a horse due to complications with Lyme even with treatment. I don't fool around when it comes to Lyme.

[Plink]

I wonder at the Lyme disease diagnosis. There are many diseases that mimic the symptoms . . .

ThisIsTheDay, I wonder if you realize how insulting your question sounds. Lyme isn't something that people make up to explain laziness or aches and pains. It is a very scary problem in some areas of the country.

 

My daughter was partially paralyzed from Lyme. We never saw the tick, but found out through a battery of tests.

[Corraleno]

My son contracted Lyme while visiting relatives on the East coast; he never saw the tick and never developed a rash. He developed flu-like symptoms after we got home, which lasted a long time. Then the fatigue, exhaustion, confusion, aches & pains set in. Because Lyme doesn't exist (supposedly) where we live, and we didn't connect it with the trip to NJ, it took almost 2 years to get a proper diagnosis. At that point he'd been diagnosed with juvenile arthritis due to severe swelling and pain in his knees, and he'd had MRIs, blood tests, and fluid drained from his knee and tested. It was a pediatric rheumatologist who just happened to ask if he'd been back East in any wooded areas in the last few years, and then the Western Blot (once we got the correct one ordered — that was a saga in itself) came back screamingly positive for 9 different Lyme factors. DS has been on antibiotics for 2 years now. :(

 

Jackie

[Corraleno]

I wonder at the Lyme disease diagnosis.  There are many diseases that mimic the symptoms . . .

 

Actually, I think that false diagnoses are far more common in the other direction — Lyme is commonly misdiagnosed as something else, because many providers don't even think to test for Lyme. DS was diagnosed with juvenile arthritis, and other possibilities that were brought up at various times included chronic fatigue, lupus, and MS. My SIL was repeatedly misdiagnosed — and she lives in an endemic area where doctors really ought to know better.

 

The ELISA test can be somewhat inaccurate, but there are few false positives (although many people believe there are a lot of false negatives) on the Western Blot. I think the CDC standards are that the Western Blot must be positive for at least 5 (?) different factors — which is controversial because many people think it results in a lot of false negatives if someone only tests positive for, say, 4 factors. Not to mention the fact that some doctors don't seem to understand the difference between the IgG and the IgM versions of the tests — order the wrong one and a patient with even a severe case of Lyme can test 100% negative.

 

If I had not trusted my gut, researched like crazy, and demanded to see another doctor (who ordered the correct test), who knows what kind of condition DS would be in now. :crying:  What happens to the patients who just take their doctor's word for it?  

 

Jackie

[Catwoman]

I agree completely with Jackie. I think Lyme is incredibly under-diagnosed, and that there are still doctors in our area who don't prescribe antibiotics until patients develop awful symptoms, or who won't acknowledge that the symptoms might be Lyme -- and we live in the NYC area where Lyme is very prevalent. I can only imagine how many people who are misdiagnosed in areas where Lyme is less common!

 

And Jackie, I'm so sorry to hear that your ds is still on the antibiotics. I know what it's like, having had to do the same thing myself, but it's a lot easier for an adult than it is for a kid, and as a parent, there is nothing worse than seeing your child suffer.

 

I really hope the antibiotics will be effective. In my own experience, I was losing hope that I would ever consider myself to be basically Lyme-free, but then it seemed like all of a sudden, the antibiotics worked. It was just the same old doxycycline, so it's not like it was some kind of innovative new treatment or anything, so I still have no idea why I got better when I did, but I just wanted to let you know that there is hope for your ds.

[ThisIsTheDay]

ThisIsTheDay, I wonder if you realize how insulting your question sounds. Lyme isn't something that people make up to explain laziness or aches and pains. It is a very scary problem in some areas of the country.

 

I'm sorry that you took it that way.  It was a muse about **a possibility** why someone **might not** remember a tick bite.  You are reading entirely too much into this, and I NEVER said anything about anyone making it up.  In fact, your insinuation is really quite insulting. You don't know me, and you have no reason to think I would be insulting anyone here.  (And you obviously did not read further down the thread where someone asked and I clarified.)

 

[Catwoman]

I'm sorry that you took it that way. It was a muse about **a possibility** why someone **might not** remember a tick bite. You are reading entirely too much into this, and I NEVER said anything about anyone making it up. In fact, your insinuation is really quite insulting. You don't know me, and you have no reason to think I would be insulting anyone here. (And you obviously did not read further down the thread where someone asked and I clarified.)

For what it's worth, I wasn't at all offended by your question and I actually thought it was a very reasonable thing to ask -- and I have contracted Lyme disease on three separate occasions and was on strong antibiotics for a period of several years, so I definitely have a dog in this hunt.

 

I think there is a great deal of misinformation about Lyme disease, so I'm not surprised or upset when someone doesn't know all the facts about it. Many doctors don't seem to have a clue, either!

[Catwoman]

My daughter was partially paralyzed from Lyme. We never saw the tick, but found out through a battery of tests.

I'm so sorry about your daughter! Is she OK now?

[Seasider]

I appreciate all the responses! I think it's really unfortunate that the smallest of creatures carry such a potent disease. I do suspect LD goes undiagnosed and untreated frequently, certainly more often than false positive diagnoses.

 

Jackie, way to advocate for your dd! She is blessed to have you. I think the stories shared here demonstrate that we really need to be aware of the possibility of LD even if we don't remember/are oblivious to helpful diagnostic evidence such as a tick on the body and/or bullseye rash.

[Corraleno]

Interesting article yesterday about a guy who had Lyme for 2 years and was just now diagnosed. Same old story — despite dozens of tests and misdiagnoses, no one thought to test for Lyme:

 

This sequence of events would continue for another two years. Each time the diagnosis would change, but the end result would stay the same. I saw a neurologist, a neurosurgeon, an orthopedic surgeon, a urologist, a neuro-urologist, a kidney specialist, three different pain doctors and a pain psychologist.

 

My diagnoses varied from heart disease to polycystic kidney disease to Lupus. I had many different neurologic disorders -- fibromyalgia, psychosomatic disorder and my personal favorite, neurosyphilis -- according to these doctors. I had multiple brain MRIs that revealed lesions in my brain; these were due to my high blood pressure, the doctors told me.

 

I continued to get little headaches that would come, last for a minute and disappear. My legs would lose feeling and everyday it seemed like I was getting weaker. I would get Bell's palsy -- a syndrome where part of my face would be paralyzed and slump to one side. My body would twitch uncontrollably, and then tighten up to the point where I thought my bones would break. I was told my pain was all in my head, that it wasn't real.

 

I should have been thinking about Lyme disease. I know several friends and family members who have contracted the disease. But I had moved to the South. I didn't think I had been bitten by a tick. I had no rash. Still, research about my symptoms online showed late stage Lyme disease made sense. During an appointment with my neurologist last month, after another trip to the emergency room, I asked: What about Lyme disease?

 

They tested my blood, and three days later the results came back positive.

 

 

Also, the CDC just released a new report:

 

"About 300,000 Americans each year are diagnosed with Lyme disease, according to new estimates released by the Centers for Disease Control and Prevention this week. That number is 10 times higher than the number of cases reported annually to the CDC."

 

Maybe that report will at least make doctors sit up and take notice, so fewer people will suffer for years before getting proper treatment, like the guy in the first article (as well as my son and many others).

 

Jackie

[countrygal]

I went in once for feeling feverish and aching, especially in my upper back, in late summer. I was sure it was lyme's. They did a urine test to make sure I didn't have a UTI (which was negative) and since we live in an area with a high Lyme's rate he treated me for it anyway. When I got home dh said "You know, I did see a big red pancake on the middle of your upper back a couple weeks ago, just like where you say it hurts." :glare:  That would have been good to know!! But I was treated anyway. I picked a tick off my dd and she ended up with in a week later- fever, headache, and rash. I think most people don't see it, or only see the 'bulls-eye'.

[Guest]

My dd and ds13 both have contracted Lyme with no knowledge of the tick. The first time - with dd - we went through a horrendous number of tests to discover what was wrong with her, even though one of the FIRST things out of my mouth was, "Might it be Lyme Disease?" Dr. gave it no consideration because I did not find a tick or a rash.  I no longer mess around. If I find a tick or I think they might possibly exhibit symptoms, it's straight to a blood test, or right on antibiotics. 

 

In her case, she had debilitating, continuous headaches, a swollen lymph node and knee pain.  With ds#2, it was knee pain. With ds#3, he has been treated 2ice when I found a tick. Over this past summer, he had a tick so embedded in his back all one could see was two hind legs sticking out. It had to be "surgically" removed by a doctor. 

[Lizzie in Ma]

We never saw the tick that got my daughter. But it was five years before she was diagnosed by which time it was systemic. Almost a year of rotating antibiotics, antimalarials until she started to get GI bleeds. Then she had to go off everything. Six months later when we had tried to build back her immune system as well as physical, cognitive and behavioral throat for pain management, she went on the condensed Cowden protocol which she just finished. She still has symptoms and I don't know what to do next.

[Seasider]

Oh, Lizzie! I am so sorry to hear this about your daughter! I asked this question because I wonder why doctors seem so clueless/dismissive to what seems, to me, to be something worth considering right from the onset of symptoms. Especially after a month or so and it becomes apparent that the patient has something more chronic than a cold, flu, or other symptoms that should be more easily or quickly resolved. When I hear that some of you have experienced years going by without a diagnosis, I shake my head.

 

How easy is it to simply be tested for LD? One person mentioned that it is complicated, testing along a progression of antibiotic treatment. Is it really that difficult? Could anyone go into an independent laboratory and ask for such testing (provided he is willing to pay for it)?