Negative test results...?

I have been grappling with a slew of symptoms for almost four months now, and taken together they all point toward Lyme disease (even a doctor at the ER thought so). They include: severe "brain fog," dizziness, joint and muscle pain, pronounced fatigue, eye strain and difficulty focusing, confusion, shortness of breath, pressure in head, flashing lights when my eyes are closed, and upset stomach. I'm an archaeologist and I spend a lot of time outdoors in Arizona, Utah and Oregon so it's very probable for me to have been bitten by a tick, especially up in Oregon.

However, I live in the small town of Page, AZ where there is only one medical center, and when I prompted them in the Lyme direction they tested me for the Lyme antibodies and said I don't have it and never did.

What should I do? Is there another, more reliable test? Or is it more likely that I simply don't have it?

[ree427]

The symptoms you describe could be Lyme Disease. Igenex is a more reliable test, but no test is 100%. Lyme Disease is a clinical diagnosis based on symptoms. Perhaps you should consult a doctor who specializes in Lyme and other Tick-Borne Diseases. These doctors are referred to as Lyme Literate MDs (LLMD).

[rburrillo]

Do you know where/how I can find an LLMD?

[justnotsure123]

go to www(dot)ilads(dot)org and contact them for a doctor closest to your area. Even if you have to travel.. go.. if it is lyme you need to be treated as quickly as possible. Also visit www(dot)immed(dot)com and look under infectious diseases research and read it, just for the knowledge because if you were indeeed bitten by a tick, there could also be a multitude of co-infections that an LLMD can test for.

[JackieCalifornia]

I have to say awesome about you being an archaeologist.  It was what I wanted be when I was a kid.  Forget astronaut or mountain climber or anything like that.  Archaeology!

Sorry to hear you're not well.  I looked up page, and see where you are.  If you search for "LLMD Las Vegas" or Phoenix or wherever you can get to, you might find some leads online.  Also check the ILADS dot [org] website, which is the main organization for LLMDs.  In some states, MDs are not allowed to treat according to their own medical judgment, so the medical board can cause them problems.  I don't know about Arizona.

... but I did just find a query on a site like this one:  "I'm looking for a LLMD for my 23 year old son and saw another post that stated there was one exceptional Dr. in Arizona. Who is it?"  Unfortunately the answer was not useful, went off topic, but there have to be some there.
===
Also just ran across a post on Bryan Rosner's website on where to get a referral:

"1.  Lymenet [net] org “Seeking a Physician” Forum: You can get a custom referral to an LLMD from www [dot] lymenet [dot] org. When you reach the homepage, click on “Flash Discussion,” and then click on “Seeking a Doctor.” You will be asked to provide your city, state, and contact information, and a Lymenet [dot] org forum member will contact you with a physician referral.

"2.  Lyme Disease Association Doctor Referral Service: Visit www [dot] lyme disease association [dot] org and click on “Doctor Referral.” You will be asked for your contact information and a doctor referral will be provided.

"3.  International Lyme and Associated Diseases Society (ILADS). Contacting ILADS is also a method for getting a physician referral. Use their website: www [dot] ilads [dot] org or call them at 3 0 1 - 2 6 3 - 1 0 8 0. ILADS is the "gatekeeper" for most Lyme-literate physicians in the USA."

Take out the extra spaces in all those links and numbers; the bot here blocks things out otherwise.  Rosner's books are quite interesting -- he is not an MD, but had Lyme himself and has turned into something of an expert and built a publishing empire on his knowledge, if you're looking for stuff to read about Lyme.

===

Do get copies of the test results that were already run and always keep a personal copy of all such tests going forward.  It's not uncommon for us to change docs along the way, and it's important to have the data at hand, not in some file cabinet that you have no access to and no way of knowing if you were given copies of everything.  

When you have those test copies, would you tell us what tests they were, what lab ran them, what the results are, and what else you were tested for?  That's a good starting place.  Then even if you have to work through the doc in Page, if s/he's friendly, maybe you can get him/her to order some additional tests if you aren't able to travel much to see a doc.  Non LLMDs don't tend to read the tests the same way an LLMD would, but there's enough posted on line and at ILADS [dot] org that you can begin to figure out what to pursue.  The ticks that carry Lyme also about 1/2 the time also carry other diseases, and your doc can order additional tests based on your symptoms and what they possibly indicate.  This assumes your doc is willing to venture into territory apparently unknown to him/her, but anyone rugged enough to live in Page has to be pretty tough stuff and knows that life isn't simple.  

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

[justnotsure123]

wow... gotta love jackie!!!!! Mine was right to the point... she just did a ton of research for you that I did not think to do.. You go girl..  :o)

[JackieCalifornia]

Hey, thanks.  :)    I do run off at the mouth, tho.  

[justnotsure123]

by the way it's www(dot)immed(dot)org not (dot)com. sorry... :o)

[rburrillo]

I contact ILADS and within a day I received an email (from the executive director no less) referring me a Lyme literate doctor in Phoenix - which is still four hours away from here, sadly, but at least it's a start.

At this point all they've done is an antibody test, I don't know if it was the ELISA or not because it doesn't say on the form they gave me. The testing company was LabCorp in Phoenix. I'm not sure what other tests to ask for; I assume I'll find those in the readings, and anyway the email I received from ILADS began with, "Some of the sickest people never test positive on any test." In which case I'm curious to know how they diagnose it other than by excluding everything else on the planet (or maybe that's how...).

Thanks for all the helpful input. Does anyone have any experience with Lyme and antibiotics? When they were running batteries of tests on me the doctors did discover what looked like a sinus infection, so, "just to be safe," they gave me zithromax AND biaxin. One right after the other. Those are two of the strongest antibiotics out there, and I was on them for four consecutive weeks; if it was Lyme wouldn't that have got it? Or not?

Thanks again, I'll let you know what I discover as it all unfolds.  

[rburrillo]

Oh, right, about the job: being an archaeologist was always a dream of mine too, and it was amazing when I finally made it happen. I get paid to hike! Of course I've been sick now for about four months with whatever-it-is that causes fatigue and brain fog, so I haven't really been enjoying anything for quite some time - all the more reason to get this figured out so I can get back to enjoying what I do!

[JackieCalifornia]

Excellent, this is a very good start.  

When you see an LLMD, you won't need to ask for tests, they will know what to order.  ELISA and Western blot are usually done together (one has a high false positive rate, so that's usually done first, and if you come up negative, they don't do the other test.  If the first test comes up positive, then they do the second test to knock out the false positives, but there is still a delta in there that is unaccounted for.)  But not to worry, you'll be in good hands with an LLMD, who may (re)do the ELISA and W blot, and also run an IGeneX PCR, as well as whatever else seems appropriate based on your symptoms.  If you can get a copy of the test already done, take it with you, for what it might be worth to the doc.  (LabCorp is a good company, but some labs have better test protocols than others for Lyme+, so LLMDs pick and choose among labs.  My LLMD sent my tests to LabCorp and IGeneX, but Quest also does some testing ... it's up to the LLMD.)  ===>>>> But keep your own copies of all test results going forward.  Scan them into your laptop or whatever, but keep them.  They are useful for a doc to look back and see trends.)

About testing negative but being infected:  to my untrained understanding, there are two particular antibodies your immune system makes against Lyme, first IgM and later IgG.  With most bacterial infections, these two immune reactions will beat the bacteria to death.  

Not so with Lyme, in many cases -- due to particular oddities about Lyme:  

(1)  Lyme's reproductive cycle is exceptionally slow, a couple hundred times longer than usual bacteria you would encounter; antibiotics (abx) do their killing when the bacteria are dividing and are most vulnerable, so it takes many more life cycles to kill Lyme than 'ordinary' bacteria, thus months-long abx treatment, compared to a couple of weeks for an ear infection.  

In addition, your immune system, which is calibrated to 'ordinary' bacteria life cycles, will simply give up reacting after a while, assuming the bugs are all dead ... and so the tests come back negative.  Sometimes an LLMD will give you a short course of abx to 'stir up' your immune system and cause it to begin reacting to the bacteria that the abx are killing off, then they retest you and get a positive where before your immune system was asleep.  These tests are the ones from LabCorp or Quest, and they measure only your body's immune reaction, not a direct measure of the bacteria that may be present.  Therefore, no immune activity, no positive test.  

This is another reason LLMDs use the IGeneX PCR test, which looks (as I understand it) for DNA bits of the Lyme bacteria in your blood.  NonLLMDs don't use IGeneX, because they think W blot and ELISA are good enough.

(2) Lyme has a trick of creating slimy shields called biofilms in which the bacteria encyst, and where the immune system can't find them.  LLMDs often use combo antibiotics such as Zithromax (azithromycin) and Flagyl (metronidazole) together:  one breaks the cysts, the other kills the bacteria.  The azithromycin and Biaxin (clarithromycin) you were given treat bacteria, but not the cyst problem of Lyme.  This is the kind of stuff LLMDs know about.

Also, zith and biaxin may as you note be two of the 'strongest' abx around, but if they are not the right abx against that bug, it's a no go.  Which brings me to co-infections:  other diseases carried by the Lyme ticks.  An LLMD will question your closely about your symptoms and from that know which other diseases to test for, because they may need different abx than Lyme.  I had Lyme and babesiosis, a malaria-like protozoal infection needing different meds than Lyme.  Because established Lyme is not a quick cure, it is common that a coinfection, depending on which one, may be treated first, and then attention turned to Lyme.

Different docs have different approaches and combos:  if you have bartonella, it's a different deal, etc.  But don't borrow worry.  Find out what you've got, and go from there.  It has taken many of us months and years to get to an LLMD, so you're ahead of the game, for what comfort that may be.

If you are interested in herbal approaches, Buhner's "Healing Lyme" is helpful.  I would go for antibiotics first, tho, and turn to herbs only if you can't do abx for some reason.

Good luck, get well so you can get back to ... the Anasazi?    Let us know how you do.

[rburrillo]

Well, you wanted a followup, and now I can finally provide one (sort of): the PA here in Page that I found who was open to the idea that I had a chronic/recurrent Lyme infection had sent my blood sample off for a Western Blot, which is evidently the end-all test, although having read your posts and spoken with someone from Lymenet it seems that even the Western Blot can be wrong. In some cases people have had to take the WB up to ten times before it showed a positive result, and in other cases it never showed positive at all!

At any rate, my test came back negative for Lyme DNA Poly Chain and negative for Lyme Ab IgG. However, it came back positive for Lyme Ab IgM, specifically bands 23 and 39. Because my PA is just that - a PA, not an MD - he wasn't sure how to interpret the results, so he faxed them to a friend of his in New Orleans who is apparently an expert in infectious diseases. Meanwhile I looked into it myself, while I await results, and it looks like 23 and *especially* 39 are specific to Lyme (indeed: even the ever-stringent CDC recognizes IgM 23 and 39 as positive for Lyme).

So that's the latest. I don't know if he will call me back with an outline to begin treatment, or if it's possible for IgM 23/39 to be a false positive, or what. However, given my symptoms AND the fact that I was positive for those two specific antibodies, I would say it's a bullseye (pardon the pun).

Having said all of that: I still live in a small town with only a PA at a small-town clinic. What - assuming that it is Lyme - should I do to treat this thing?

[JackieCalifornia]

Greetings --

Good for you for following up -- there's something about feeling so lousy that swimming upstream with the medical community is pretty far down the list of things to do, so points to you for plowing ahead.

Do you have physical copies of the lab results?  Always get a copy before you leave the doc's office -- and start a binder.  It can be useful for a future doc to look back and see what you were tested for and what the results were.

What lab did the report?  That can make a difference too.

Yes, the W blot and the ELISA tests are not all that good, which is why having a doc who can connect the dots of history, exposure, and symptoms is important.  

W blot has a high level of false positives, which is why an ELISA is usually then given to someone who tested positive on W blot.  Problem is the ELISA has a high false negative rate, so it's like playing hide and seek in the dark.

The immune system also gives up fighting Lyme after a while, and it stops making antibodies, so if you've been sick for even a while, getting any kind of a positive test is, to my understanding, considered significant.  

I don't know the 'Lyme DNA Poly Chain' test -- who makes it and what lab processed it?  If it works like the IGeneX test, it looks not for antibodies to Lyme, but for actual bits of the Lyme bacteria -- direct rather than indirect evidence.

But that said ... you did pretty good on the test results you did get.  I have taped to the wall by my desk a list of what the different Lyme bands mean, printed down from truth about lyme disease [dot] com (run all those words together if you look for it online.)

And according to my printout, Band 23 is "outer surface protein C (Osp C)" which is specific to Lyme ... meaning no other bacterium would show positive on that band except Lyme.

And Band 39 is "a major protein of Bb flagellin; specific for Bb."  Bb=Borrelia burgdorferi, the bacterium that causes Lyme.

So you got two good hits.  A nonLLMD might say you were negative, tho, because the standard by which nonLLMDs read those tests require more +++ signs and more of the different bands to call it Lyme ... LLMDs have a less strenuous standard, and I'm thinking you're in pretty good position with that test.  So yeah, I agree with your friend in New Orleans (but I'm not medically trained).

The ticks also about half the time carry other diseases that don't respond to the same abx that Lyme does, so really you need further testing.  A little internet searching for "LLMD Las Vegas" or Phoenix or Flagstaff or wherever you can get to is needed.  Treatment for Lyme is usually extended antibiotics, and there is no one single standard drug used; Lyme is cutting edge medicine, and different docs do different things.

Your symptoms and your test results argue for finding an LLMD, and not to put it off.  The longer you wait, the more entrenched the Lyme becomes and is harder to eradicate.  It's not a simple infection -- it is insidious and tricky ... it is caused by a spirochetal bacterium, like its cousin ... syphilis.  Syphilis can lurk for decades and only show up later in life, when the immune system can no longer suppress it, and Lyme seems to have that ability too.  If you read history, you'll recall that those with syphilis did not glide gently into old age ... 'dementia' is a word that comes to mind.  I personally suspect that untreated Lyme may be a factor in the epidemic of Alzheimers.  I had a lot of relatives who lived into their 90s and, while quirky, they weren't demented ... not at the rate I see people getting Alzheimers now.  Just sayin'.  Syphilis seems curable with a gigantic syringe of penicillin, but not Lyme, for reasons I can't speak to... except it seems like Lyme hides well in the body beyond reach of the bloodstream and immune system, holed up in the joints where blood flow is low.  And the tests are lousy, see above.

So if I were you, I'd see a doc and get on a treatment plan.  I know people who see their docs every 3 to 6 mos for follow up and more meds and tests, so it's not like it's a weekly thing.  

Let us know if we can help -- give my best to the Anasazi.  J.

[JackieCalifornia]

PS Your PA friend might be able to help.  Look at the ILADS [dot] org website for Burrascano's 'Diagnostic Hints ...' (apparently 13th ed. is current), and also the IGeneX website, they are in Palo Alto CA and have a useful website you and your PA might find useful for shipping blood to.  They are very user friendly.  Call them, or have your PA call them.  Also if you're up for deep reading about current thoughts in Lyme, there is a Lyme reasarch center at Columbia U in NYC, headed by Brian Fallon, with an extensive website.  And if all else fails, Stephen Buhner is a master herbalist who is quite impressive imo, and I'm not an herb-y type, but I respect him and would try his approach if needed.  

[ewford]

Make sure you understand the coinfections and mycoplasmas that can be in the mix as well.  These make Lyme more morbid and harder to treat/diagnose since the coinfections require diff ABX and treatments.

[rburrillo]

It was a LabCorp test, and it didn't include any coinfection testing. I've ordered an IgeneX testing kit to do a more comprehensive followup exam and then very likely headed to Denver to find someone to administer it. Which test(s) of theirs would you recommend?

[JackieCalifornia]

It takes a knowledgeable Lyme doc to know which tests to have run, based on symptoms and history.  No one here has identified him/herself as medically trained, and you're into an area of medicine that doctors have trouble dealing with.

Really really, you need to see a Lyme doc for an assessment and to know what tests to run.  This is not a DIY project.  

[rburrillo]

Gotcha. I think there's a few LLMDs in the Denver area that I can track down.

[JackieCalifornia]

Glad to hear it -- the sooner you get a jump on these bugs, the better.  Keep us posted.