lyme test negative but im not convinced

[jor17]

2 weeks ago I came down with typical flu-like symptoms: 102 fever, chills, aches, headaches, just feeling lousy.  I had been playing golf recently and when I saw my internist (also an infectious disease specialist) he admitted me to the hospital to be safe.  I had no "rash" from a tick.  48 hours later and 1 spinal tap later, I was released from the hospital.  All of my bloodwork has resulted in negative tests: meningitis, lyme (tested twice, a week after I was released I was tested a 2nd time), ehrlichiosis, rickettsia (2 tick-borne infections)...

I was on doxycyclin for 2 weeks, and my dr told me today that my 2nd test for lyme came back negative.  In the past few days I've been dealing with a sore lower back (could be from spinal tap I guess, but that was 2 weeks ago), a bruised left arm (round bruising around the tip of the elbow, black and blue.  i had it a week ago, it got better and now its bruising again), and a sore achilles tendon in addition to a sore left wrist (same arm as my bruised elbow).  Basically all of my muscle pains are not caused by anything.  I woke up 1 day with a sore back and achilles, and maybe my elbow is bruising again from playing golf yesterday.  I also had an overactive lymph node in my groin area that I thought was a hernia at first, but has since subsided and gone back to normal.

Anyways, my lyme has been negative but i'm not convinced.  Should I be concerned that when my doctor monitors the condition I might ultimately have it when he tests my blood in the upcoming weeks?  It's been 2 weeks since I was first sick with symptoms, and have been on doxyclyclin for basically 2 weeks so I know that if it is lyme, this is the best way to treat it initially.  But how would I know if it was dormant for years and just came to an issue now?  I'm 25, in great health otherwise, and am obviously concerned about long-term effects if I have lyme.

Any thoughts would be greatly appreciated.

[JackieCalifornia]

Oh, and PS:  don't worry about not seeing the tick or getting a circular red rash.  Many of us never see either of them, but ID docs still seem to rely heavily on that aspect to make a diagnosis.  

[JackieCalifornia]

Greetings.

You are imho asking all the right questions.  I'm not medically trained, but been dealing with Lyme-&-Docs for a good five years now, so here's my take:

Your doc gets big points for trying to do the right thing.  However.

The problem is that there is a war between the ID docs and the Lyme docs (often referred to informally as LLMDs, or Lyme Literate MDs).  The ID docs understandably adhere to the tenets and findings of the IDSA (Infectious Disease Soc'y of America), which boil down to:  "Lyme is hard to get and easy to cure -- a couple weeks of doxy and you're good to go, and if you still have symptoms, it's an autoimmune reaction, good luck."

Counterpoise the LLMDs, who often belong to another group, ILADS (International Lyme and Associated Diseases Soc'y) with a website at ILADS [dot] org.  In some states, LLMDs have been run out of practice by the state/local licensing boards for disagreeing with the IDSA tenets; in other states where there is 'freedom to practice' according to the MD's conscience, there is just a lot of badmouthing and dissing that goes on toward the LLMDs (my state of California being one of those).  

ILADS and the LLMDs believe Lyme to be a significantly difficult disease to diagnose and especially to treat, particularly if one goes with the IDSA approach.  Because this is a hotly contested area of medicine and the science is still developing, there are some wackadoodle docs I wouldn't take my pet iguana to, but there are some truly great docs out there, also with blind spots, but it beats sitting in a corner without treatment while turning into a turnip.

My best advice to you is to find an LLMD asap and get tested again -- with different tests.  The ID docs use standard ELISA and W. blot tests (often through LabCorp or Quest, both fine labs) that are however imprecise, but the ID docs rely on those tests as tho carved on tablets come down from the mountain top.  

The diagnosis of Lyme must be a CLINICAL diagnosis, based on your symptoms and history, and *informed* by the test results.  Unfortunately too many docs skip over the 'clinical' part and go straight to the test results.

The IDSA standard tests are ELISA and then the Western blot, the first of which has a lot of false positives, so the second one is run on anyone with a + result, because it has a high level of false negatives, so somewhere in there is supposed to be a reliable answer.  Those tests however rely on measuring antibodies your immune system is producing against the Lyme bacteria, but if your immune system either hasn't fully kicked in or (in infections of comparatively longer duration) it did kick in and is now going to sleep, you won't get an accurate measurement -- on top of the inherent inaccuracies of the two tests. (I will spare you tales of the tricks Lyme bacteria play to suppress and hide from your immune system.  We can get into that later if need be.)

LLMDs often use a test run through Igenex labs in California, which measures not the antibodies your immune system is making, but looks instead for Bb DNA in your blood.  (Bb being the Lyme bacterium, Borellia burgdorferi).  Search for "Igenex lyme" and it will give you the run down on how its testing is structured.  NonLLMDs sneer at Igenex, but it's because the IDSA is perfectly happy with the status quo.  

There is also the problem of coinfections, other diseases the Lyme ticks drag along with them.  They have to be tested for separately, based on suspicions of infection due to your symptoms.  It takes a careful and watchful doc to look out for those...and the IDSA docs don't all fall into that category.  The politics surrounding Lyme have caused too many MDs to have an unfortunate attitude of disdain to those of us who consult LLMDs or are loathe to accept a diagnosis of 'post-Lyme syndrome' and just suffer.  You may or may not want to tell your ID doc you are consulting an LLMD:  to do so is to invite a bad reaction from the nonLLMD, who often thinks LLMDs to be charlatans.  I have always been very upfront with all my docs about who I see and what meds and supps I take, but I have paid a price for that sometimes:  nonLLMDs often do not want to taint themselves by treating a patient who is also seeing a witch doctor.

Your MD sounds serious and concerned, as he should be, but his training and affiliation as an ID doc *may* be blinding him.  In your situation I would get myself quickly to an LLMD, because the sooner the infection(s) is/are attacked with appropriate meds, the surer a cure.  Once entrenched, Lyme can be extremely difficult to eradicate.

Rule of thumb:  two weeks of doxy isn't going to cut it.

2d rule of thumb:  everybody's symptoms are different, depending on what coinfections you have, your physical condition before infection, and what strain of the 100+ strains of Lyme you have, most of which cannot be tested for (back to the need for clinical diagnosis).

My best advice:  get thee to an LLMD.  Fast.  If you need help finding one, let us know.  We don't post LLMD names in the open here (to avoid them getting harrassed), but can private message you with data through this website.  (Click 'inbox' in the upper right corner of this screen to get to the private message [PM] function.)

Here are some websites, some of which have LLMD referral functions (ILADS used to, but I'm not sure if they still do):

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

and/or just google/search your locale:  "Detroit LLMD" or "Utah LLMD" or whatever.

You are VERY wise to jump on this so quickly.  Time counts in dealing with Lyme.

Best wishes --