off IV antibiotics for 4 weeks can you relapse?

I have been diagnosed with lyme disease after a one week hospital stay in Nov.2010.  I was on IV antibiotics for 8 weeks.  I have been off the antibiotics for 4 weeks now.  But I think I am relapsing.  My hands and feet are going numb again as well as my lips.  I am getting severe migraines again and that hot rosey cheeks again.. I am going to call my ID Dr. tomorrow.  I am sure somethings wrong with me again... But can Lymes come back??

[JackieCalifornia]

Greetings --

Your doc may or may not agree, but in my humble, NON-medically-trained opinion, based on what I read, yes, you could still have Lyme.

It's also possible that you got infected again, but I'd guess it's more likely that you were not cured the first time.

Here's the problem you may run into:  the standard treatment for Lyme is a few weeks of antibiotics, often doxycycline, but there are other meds used too (I never took doxy, but was on other abx).  

A little history:  the first docs to 'discover' Lyme disease were infectious disease (ID) docs and rheumatologists.  Each of those groups latched onto the symptoms that they would look for in an illness (for example, swollen knee joints to a rheumatologist) and focussed on those as what Lyme was all about.  Many or even most infectious diseases are readily cured by a couple of weeks of antibiotics, and so that became established as the treatment for Lyme too.  Lyme is tricky in ways that many other diseases are not, however, in that it comes and goes, and the symptoms rise and fall.  Lyme has the ability to hide inside the body in so-called 'biofilms' where the Lyme bacteria can hide from antibiotics and then come out and start wreaking havoc again.  Most bacteria can't do that.

Also, Lyme has an unusually slow reproductive cycle, and it is at the time bacteria are reproducing that they are most vulnerable to antibiotics.  Two weeks of antibiotics cover many many generations of regular bacteria and keeps hammering them into oblivion.  Two weeks is a looong time for most bacteria to be hit with antibiotics, but Lyme (like tuberculosis in this way) requires at least several months of treatment (tuberculosis is commonly treated for 18 months).  ID docs, for reasons I do not know, do not think about this aspect of Lyme bacteria, and so do not prescribe for very long.

Your ID doc is a bit unusual compared to what I hear about other ID docs in that he has treated you for 8 weeks, a very long time when it comes to regular bacteria, but a Lyme doc would likely treat you for much longer (several months at least).  

Also, ID docs in my experience are not very watchful for other diseases also carried by Lyme ticks, and unless you are tested for those diseases (based on what symptoms you have, and they can be very subtle), no one would know, and without treatment, you could and likely would remain ill.  (That happened to me.)  ID docs are not watching for these other infections, for reasons I do not know.  

When you go back to your doc, it is possible that he will decide to treat you for longer with more abx, and if he is willing, I would probably do that if I were in your situation.  I would however ask him if you were tested for any co-infections, and if not, to please consider the possibility that you have something else that wasn't affected by the doxy you had.  Sadly, docs tend to get snippy when asked questions like that, but don't let that put you off.  It's *your* health we're talking about.

Alternatively, mainstream docs (like yours may be) have a theory that if a Lyme patient is treated with antibiotics as you have been but still have symptoms (as you do), then it's not that you are still infected, but that your body is 'confused' and is continuing to THINK that it is still infected, and so your immune system is attacking bacteria that are not really there, and that's what is making you sick.  Yeah, it doesn't make sense to me either, but that's what they say.  Think about it:  the docs won't consider a treatment failure, but will consider that your body still thinks it is infected by something that has been killed and is continuing to fight a battle that was won.  Hello?  

Bottom line:  your doc may be broadminded (given that he's treated you with longer than the usual treatment for Lyme), but that may be the limits of his broadmindedness.  If he tries to tell you that you are having an autoimmune reaction and just to live with it, and/or if he confirms that he didn't consider possible co-infections, I would find a new doc for a second opinion.

I also recommend that you get copies of all the tests your doc has done if you can (the office should give them to you) and that you keep personal copies of all your tests going forward.  It sometimes is helpful to your treatment going forward, and getting docs' office staff to accurately find and copy and give you copies of all past tests is often a losing battle.

====>  So where does this leave you?  

You ask if Lyme can come back.  If you are still ill, it is likely that you were not cured the first time.  (A re-infection is possible, because Lyme is not something that you get immune to, as far as I know, but the way to bet would be that you weren't cured the first time.)

I'd give your doc a chance to do the right thing, but if he doesn't, then I'd find a Lyme specialist and go from there.  Let us know how you do, okay?  Best wishes --