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Lyme? Which symptoms show up first?
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Lyme? Which symptoms show up first?

Last wknd I removed a tick on the back of my shoulder that had likely been there about 3 days. I know this because for a couple nights I could feel an itchy sensation on my rear arm, but didn't think to look. On the 3rd day or so, I go to itch the spot and feel something weird. I look in the mirror and there was a tick, fully engorged. My wife removed it, but stupidly we both didn't think to save it and flushed it down the toilet. I immediately thought of lyme and figured the cats brought the tick inside. We're from southern Maine, but I know lyme is up in this area.

For the last day or so, I have noticed some sore joints (knees, ankles, shoulder). I should mention that I work out at the gym and push some heavy weight around, but I've done this for a long time and have never noticed joint pain before so I don't think it's from that. No other symptoms that I've read about like flu-like, tiredness, fatigue and most importantly no rash. It's now been 8 days and the spot where I was bit looks to be nearly healed over, but still noticeable. I'm not sure if the achy joints would come on that quickly or if there are other symptoms that come on sooner/later. I know everyone is different.

The weird thing is my wife was recently complaining of achy joints (knees) last week and was attributing it to her new blood press med and when she stopped, the pain has since gone away. I don't take meds, so maybe it's a coincidence or I've got sympathy pains for her:) or maybe there is another "bug" going around lately.

Anyways, I'm not sure if I should go see my PCP. Not sure if they can do much since it's only been a week. I know not everyone gets the rash, but what else should I look for, either visibly or symptom-wise that would be a red flag? Seems like a waiting game at this point. I wish we saved the tick. Arh!!! Thanks
25 Comments Post a Comment
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1763947_tn?1334058919
Hi, sorry you are here but you will get the right answers.
Everyone is different as to what symptoms they get but since you have been bit by a tick and know it, I would find an LLMD ( Lyme literate doc) ASAP.
I am still ill but others will give you more info. Go to ILADS dot org and email them and ask them for a doc near you in Maine .
They will treat you properly. Since you caught it early, and if you treat it properly, you won't wind up like most of us with a chronic condition.
Keep us posted.
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Avatar_f_tn
Not everyone gets the rash, or the flu like sxs from what I read. I doubt he joint pain would come on so quickly, but I would go to your doctor anyways. That way you can get tested just in case. You don't want to end up like many of us. May God Bless you,
Kimberly
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Avatar_n_tn
As far as getting tested now, I doubt I have any detectable antibodies yet, so other then ELISA, WB, what test could they do?
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Avatar_f_tn
"Not sure if they can do much since it's only been a week."

Do not wait.  Go quickly to a doc, don't spend a lot of time asking around.  Yes, email ILADS:

        contact [at] ILADS [dot] org

and tell them where you are and where you can get to, but press ahead on all fronts and look for a local doc yourself.

There is little controversy about treating Lyme early on, but later on when the disease is entrenched, there is a foodfight going on in the medical community about whether and how and how long to treat Lyme.

I have read that a month's worth of doxycycline in the very early stages usually takes care of the Lyme, and that's what your goal should be.

Most local docs will do at least that much.  If you do not feel well when that is done, then a Lyme specialist is called for, because the Lyme ticks also carry other nasty and separate diseases that need different diagnosis and different treatment.  

But first thing:  get thee to a doc NOW, do not delay.  Take a cellphone foto of the rash if it's still there AND KEEP IT, bec. it's evidence some docs want (tho your word should be enough).

If you nail the infection quickly, you may be fine.  If you are not fine in a week, find a Lyme specialist for an evaluation (if you don't see one on this first round.)

Let us know how you do, okay?  Best wishes!  

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Avatar_f_tn
"As far as getting tested now, I doubt I have any detectable antibodies yet, so other then ELISA, WB, what test could they do?"

You're right, and my focus would be to get on doxycycline now primarily as a preventive measure, to squelch the bug before it settles in.  Treatment later is much iffy-er and longer.  We've all been there, don't want you going there if you can avoid it.
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Avatar_n_tn
Thanks. I called my PCP just now and will see if they can get me an Rx asap.
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Avatar_f_tn
Excellent.  If you can't reach the PCP, try a 'minute doc' or a drop-in clinic, depending on what's available in your area.  Good for you for being proactive.

If you're not feeling back to normal when the course of meds is completed, then it's time for Plan B and we're happy to share our experiences and suggestions.  No one here is medically trained, but we've been through the Lyme mill!
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Avatar_n_tn
I'm very proactive about my health and don't usually let things go too long. Hopefully it's just something else, but I can't see any harm in taking some antibiotics for a few weeks, but docs don't like to prescribe antibiotics due to increasing resistance, but seems warranted in this case.
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1763947_tn?1334058919
Lyme doctors will treat you for a long time, unless you can get a longer dose of doxy from a regular doctor.
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Avatar_n_tn
Define "long". I doubt my doc would give me more than 2-4 wks especially without a formal diagnosis. Are you saying that 2-4 wks would not be effective?
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Avatar_n_tn
Doctor prescribed me a 2 dose regimen. I'm sure that might not be enough (or perhaps it is), but I think that's the best I can do right now. Fingers crossed and I'll keep an eye on the bite and other symptoms.
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Avatar_f_tn
Two doses, as in a few hundred mg each?  

Not to bring you down, but the rash (if it's Lyme) will usually spread out with a clearing pattern inside a reddish ring that gets larger, and a smaller red 'bullseye' in the middle.  Eventually it would fade, if it follows the classical pattern.  Bad news #1:  Not everyone gets a rash or a bullseye, so you could still have Lyme or another infection from the tick.  Bad news #2:  When the rash fades, if it's Lyme, you would still be infected.

The longer you are infected, the harder it is to kill the infection.  Why?  Several reasons.  Wiki has a nice write up on Lyme and its particulars, including that Lyme "is very slow growing, with a doubling time of 12–18 hours (in contrast to pathogens such as Streptococcus and Staphylococcus, which have a doubling time of 20–30 minutes). Since most antibiotics kill bacteria only when they are dividing, this longer doubling time necessitates the use of relatively longer treatment courses for Lyme disease."  Therefore the short doses of antibiotics such as the one your doc gave you may not be effective.  Lyme also has the ability to suppress certain immune system activity.

Having lived through Lyme myself, I would make significant efforts to be fully diagnosed and promptly treated for Lyme and any co-infections (a variety of nasty diseases that about half the time accompany Lyme from the filthy-mouthed Lyme ticks) before simply crossing my fingers and keeping a watchful eye.  Lyme does its dirty work where you can't see it and won't know it's operating.

Best wishes.

Best wishes to you.


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Avatar_n_tn
The regimen i got was four pills. Two/day at 100mg/pill. Without an official diagnosis would a lyme doc prescribe an extended duration of dox? Extended antibiotics can cause gi issues among other side effects.
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1763947_tn?1334058919
What you got was not enough.
Yes a Lyme doc will give you years worth if needed. Hopefully you wouldn't need that long but you don't know at this point.
Lyme docs give probiotics and other supplements to help with side effects. Its better that then what I and others face as chronic Lyme patients. It affects me neurologically  from a Lyme co-infection and can get devastating and harder to cure.
Hang in there. We are here to help.
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1211030_tn?1381140942
I agree with mojogal, you need more dxy, at least 30 days
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Avatar_f_tn
The tests for Lyme disease are notoriously inaccurate, esp. early in the infection, because those tests look not for direct evidence of the Lyme bacteria in your system, but for your immune system's reaction to the infection.  These basic tests for Lyme are supposed to be one data point in the diagnosis, not the final word, because everyone's immune system is different, and in some people, the antibodies that the basic tests measure are not yet present in sufficient numbers to register a 'positive' on the test.  

The test is supposed to be only one of the factors in deciding whether to treat for Lyme, not the one and only factor, yet in this age of instant pregnancy tests that are 99% accurate, docs and patients alike lean heavily on the test results.  There are other tests but they are not commonly used by doc who are not specialists in Lyme and its associated infections carried by the same ticks.  

Lyme is supposed to be a *clinical* diagnosis, taking into account the patient's history (tick seen, rash present) and aided by test results -- but in this modern age, the test results often are treated as the last word, when they are not that accurate.  That's how many of us have ended up with chronic and persistent Lyme infection, because once in place and burrowed in, Lyme has means to evade the immune system.
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Avatar_n_tn
ok, called a local lyme doc and they agree that the dose regimen is not enough. Unfortunately they are booked solid until April for new patients, but she said she would speak with the doc and see if he can see me now since the bite was very recent. At the least, maybe they can give me a 30 day Rx. This is so frustrating since I may or may not have it and wouldn't know for awhile if I did. Plus the inaccuracies of the diag tests doesn't help. I am kicking myself for not saving the tick. Arh!
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Avatar_f_tn
Good for you!  Don't worry about the tick being gone.  It is what it is, and it's a natural thing to throw it away.  The road ahead is the one to watch.  Let us know how it goes and how you do, okay?
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Avatar_f_tn
Blood tests for Lyme are not recommended until about 30 days after the bite.  The body takes about that long to make enough antibodies to show up on a test.

Two days of Doxy won't do much of anything.  You definitely need 30 days worth.  The IDSA (well, actually just Gary Wormser) recommends a single dose of Doxy for a very recent tick bite.  Unfortunately, this is primarily his opinion and no proper studies have been done to know if this is a reliable way to prevent Lyme. Since you had an embedded tick for three days a week ago, the single (or in your case, double) dose is probably useless if you indeed have Lyme.

I have heard of people getting symptoms of Lyme while the tick is still attached, but usually these are flu like symptoms.  I would not dismiss your joint discomfort.  Do whatever you need to do to get 30 days of Doxy.  It is worth whatever hassle is necessary. You do not want a late stage, debilitating and difficult to treat case of Lyme. Trust those of us who have/had one!  We are not being alarmists, we are just trying to spare you what we have suffered.

Don't agonize over the tick too much.  Testing the tick doesn't give you a guaranteed answer.  Ticks actually transfer Lyme spirochetes from their gut into their bite victim. The tick could have already transferred all the spirochetes to you and would then test negative.

Keep us posted!
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Avatar_f_tn
Been thinking about your comment above that antibodies are not generally detectable for ~ a month after the tick bite.  Why is that?  

Is the bullseye rash not a sign of an inflammatory reaction, that is, the immune system producing antibodies?

I guess I have thought that there were antibodies early on, but not at a level that shows up on the usual (lousy) tests.
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1211030_tn?1381140942
that statement "antibodies are not generally detectable for ~ a month after the tick bite." is wrong, If everyone waited that long to be tested they would all be chronic.  I have been tested the day of the bite and it comes up positive.
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Avatar_f_tn
The problem with antibody tests in the first month after infection is that many people (not all), do not have enough antibodies yet to show up on the tests.  Some people do show a positive, in which case a positive test indicates Lyme.  But a lot of people with a new case of Lyme show false negative.  Unfortunately, some doctors then use these false negatives to deny treatment, even when there's an obvious EM rash.

I read one story where a guy got a doxy script for a tick bite and the doctor ran tests. Then, when the tests were negative, the doc called him and told him he didn't have Lyme and to stop the meds.  Several months later, the disseminated Lyme symptoms kicked in.  

I don't think the unreliability of antibody tests in the first month is controversial. Even the IDSA and CDC say the tests can be false negative in the first month and that an EM rash is ALWAYS indicative of Lyme and must be treated immediately.  

The biggest difference is in how to treat a tick bite with no rash. With no symptoms, most mainstream docs won't treat, or they'll give G.Wormer's one or two dose (unproven) recommendation. With symptoms, they should give the full treatment.  Unfortunately, this is not what jzinckgra has experienced. S/He has symptoms and needs a full course. Yet another uninformed doc.

My understanding is that Lyme aware docs will treat a recent tick bite for a minimum of 30 days, longer with symptoms.

Having experienced late stage Lyme, I would do whatever it took to get at least 30 days of Doxycycline immediately after an imbedded tick, and I would decline testing. It would be a waste of money because I need to be treated regardless of whether the result is positive or negative.  I would also be concerned about being denied treatment with a false negative test result.
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Avatar_f_tn
my husband got the rash but not until 2 weeks after the bite. the fever and flue symptoms started and went to the doc right away..
.. then he did 30 days of doxy and was fine...

that's the time frame for him.

lots of docs give just a few doxy pills as preventative for a tic bite. when you call right away when you find the tick.

IDK?
wish you good health!
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Avatar_n_tn
Just a follow up. I went to the lyme doc last week and he gave me an Rx for 3wks, 2X/day, 100mg doxy. With my PCP's Rx prior to, that gives me a total of ~3.5 wks of treatment. We'll see. I still feel like some of my joints and other bones have weird on/off achy pain, but wondering if this could still be from my workouts from the gym. I notice it more when I walk around, mostly in my legs. Laying down in bed or 1st thing in the morning, no issues.
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Avatar_f_tn
Oh, good That's close to what LLMDs recommend.  But given your achy pains, there's a chance it won't be enough.  Hopefully, everything is gone when you finish the meds.  Keep us posted!
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