Lyme Disease post treatment

[zamp2013]

Hi,

I was diagnosed with Lyme in August 2014 - not sure how long I've had it.  I was on Doxy for 2 months and completed it about a month ago.  Since completing the Doxy, I've felt better.  Most of my joint pain (my main symptom) has gone away but my neck is still sore and I've noticed a couple lymph nodes that I haven't before.  Has anyone had this after treatment or can speak to this?  I'm pretty worried and not sure if I'm overthinking it.  

[mojogal]

Swollen lymph nodes are a common sign of the co-infection Bartonella. This requires different Meds than doxy if you have it.

[JackieCalifornia]

Welcome to MedHelp Lyme --

I'm not medically trained, but I've danced with Lyme and another infection the 'Lyme' tick brought, and I would ask the same questions you present.

Like you, I never saw a tick or had the red 'bullseye' shaped rash, but I sure had Lyme, confirmed by blood test.  Based on my symptoms, my doc also tested me for another infection the 'Lyme' ticks often carry, and I had it too.  It sometimes takes a bit of detective work to sort what you've got, so good for you for doing so.

You say:  "I was diagnosed with Lyme in August 2014 - not sure how long I've had it."  Me either.  It's common not to know when we got infected.

"I was on Doxy for 2 months and completed it about a month ago.  Since completing the Doxy, I've felt better."  That's good!  Doxy is the first line of defense in treating Lyme, but it works only if given very soon after the infection began.  If you saw the tick and know when you were bitten, there is always the possibility that you had been bitten some time previously but never saw the rash or the tick, so the recent doxy treatment could have been ineffective.  All kinds of ways what seems like a straightforward treatment can go off the rails.

Another possibility:  the 'Lyme' ticks also (about half the time) carry other infections (babesia, bartonella, ehrlichiosis, a few more) that do not respond to doxy.  Different tests are needed to know what co-infection(s) you might have.  

So-called mainstream docs usually do what your doc did:  treat for a recent Lyme infection and say that if you still have symptoms after treatment, then it is your immune system overreacting to a now-gone infection.

Here's why that isn't necessarily so:  Shortly after infection, the Lyme bacteria make their way in areas of the body (like joint cartilage) where the immune system does not easily find them, and what the immune system can't find, it can't kill.  Lyme can and does also go into a cystic form that doxy can't pierce, and additional 'cyst-busting' meds are needed to crack the cysts and let the antibiotics do their work.

There is a split in the medical community:  one side says Lyme is rare and easy to get rid of (this is the traditional view, held still by many docs, including those who specialize in infectious diseases like Lyme); the other side knows about the cyst-forming inclination of Lyme bacteria and treats not only with antibiotics but also meds like Flagyl that break through the cyst formation to let the other antibiotics kill the bacteria hiding in the cyst.

That you have any symptoms remaining would cause me to find a Lyme specialist for a second opinion.  These broadminded docs are often members of a voluntary medical association called ILADS -- International Lyme and Associated Diseases Society.  ILADS [dot] org is their website and you can find information and a referral function there.  If you send an email to           -- contact    [at]    ILADS    [dot]    org --       and tell them what area you are in ('near Dallas TX' or whatever) and how far you can travel, they can send you one or more names of nearby Lyme specialists.  There are also often state and local Lyme groups; for example, CALDA in California and TXLDA in Texas.  A little snooping on the web will find them.

(There is no test to be an ILADS member, as far as I know, and as a result, and given that Lyme is a still relatively new disease to the medical community, there are some docs out there that are a little odd.  That said, I myself was treated by an ILADS doc and he was great.  So if you see an ILADS doc that doesn't make sense to you, try another one.  Doesn't happen often, but you can say the same about other docs and specialists too.)

In your situation, I would definitely get a work up from an ILADS-type doc.  I went through 20 docs before one diagnosed me with Lyme, at the same saying I couldn't possibly have Lyme -- duh?  Fortunately I have an old friend back East who had Lyme long ago, so I knew what it was and found myself an ILADS-member doc.  I was tested based on my symptoms and diagnosed with Lyme and babesiosis (a cousin to malaria).  After treatment for each one, with different meds, and for a period of almost a year (treating first babesia and then Lyme), I remain well now, some 7 years later.  Definitely worth it.  

Oh, and some/many LLMDs don't take insurance to avoid hassling with the insurance companies over why a couple weeks of doxy isn't enough (and so the doc can keep costs down by not employing a brigade of billing clerks), but the doc will give you an itemized bill to submit directly to your insurance company.  My [large, national] insurance co. didn't blink in paying most of the bill and for the meds as well.

All this sounds overwhelming, I know, but Lyme and any co-infections (thre are several possibilities) will not go away by itself.  Lyme is first cousin to syphilis, and that's not a disease you want lingering in your body.  In the old days before antibiotics were discovered, syphilitic dementia helped fill asylums with patients.  Good news now is that antibiotics work.

You may not have Lyme or its coinfections at all, but I would want to hear that from a knowledgeable Lyme doc.  You are not over-thinking this, imo, and I would ask the same questions you are.  Don't be afraid (Lyme messes with the endocrine system, so it can make someone with Lyme feel unsure and overly emotional compared to their regular self -- it goes back to normal after treatment).

Also, at the ILADS website, you can find Dr Burrascano's Treatment Guidelines if you want to read up on the topic for general information.  Different docs take slightly different approaches, but it's overall the same.  Some people go the herbal route (including some on this site) while others (like me) did just antibiotics.

This sounds like a lot to carry, but you can do it -- ask a friend to help you deal with finding a Lyme doc etc. if it just seems overwhelming. Keep us posted, and let us know how we can help. We've all been where you are.  Best wishes!