Negative Test, but scared to death (don't trust it)

[flams000]

Hello, will try to make a long story short. A couple of months ago I went Kayaking.. the next day I had a small, itchy welt on my left shoulder like a mosquito bite (granted it was cold so there were no mosquitos). This small welt never developed a rash, just simply dissipated after a day or two.

Forgive the lack of precise timeline here, but soon after I started to feel pain in my inner left leg by my knee. Then I started to get some left shoulder pain (which I had before that welt), then some serious left testicle pain and back. I also noticed that I felt extremely fatigues in the morning, like I was awaking from a coma.

I then got chills, nausea, hand weakness/tingling, confusion when I would type and a sensation in the glands in my neck...

I know this all sounds very tell-tale of Lymes, but wait...

So right when the left testicle and back pain started, I went to my urologist because I have had Kidney Stone issues and I thought it was that (at the time I was not even relating any of this to the welt or a Lymes possibility). And here's the real kicker, I was having issues ejaculating... like it wouldn't happen at all (obviously further pointing to urologist route). He orders and renal and scrotal ultrasound. He sees no stones, but my prostate is enlarged (more than should be for a 42 year old), and I have "indications" of epididymitis. He gives me a month supply of cipro.

Ok, I start taking the cipro, I feel better immediately. There is some more flare ups of chills, testicular pain and neck gland irritation at first, but then after a while, nothing, and I feel great. But while taking the cipro the Lyme possibility hit me as I researched other causes of these symptoms. I went and got a test for Lymes and a complete diagnostic workup from labs.

Everything in the results was "normal", except a mildly elevated PSA for someone my age - which points to the prostate and epididymitis issues. However, here are my two concerns:

1) My symptoms mirrored Lymes so much (but also Epididymitis). Could the negative test simply have been because I already started the Cipro?

2) I stopped the Cipro 5 days ago and I do have some symptoms that returned... the should pain, the neck is stiff, and some testicular pain... ejaculation not 100% either. But this could be some lingering Epididymitis -

3) The Lyme's test (although holistically negative) does show me reactive to one bacteria - 41KD (IGG Band)... whatever that means...to them, it was negligible since the LONG list of other bacterias were all non-reactive.

So do I have Lymes but it was not on the test because I started Cipro and now I should be on something stronger to ensure it's eradicated? Or, did I have epididymitis and benign prostate enlargement and the peripheral symptoms mock that of Lymes (since the former is indeed a bacterial infection and it comes with fatigue, and gland issues).

Because time is of the essence, I am really freaked out and panicked (which of course is making me feel so much worse). I am really hoping for some insight. Thanks in advance to anyone that can offer their thoughts.

[JackieCalifornia]

PS  meant to say earlier -- talk to the eventual doc about whether your wife should be tested and whether and how you should take precautions against transmission until you are cured.  Your doc will have views on that -- it's not a topic I'm up to date on.

[JackieCalifornia]

Ah, most excellent progress!  Keep us posted.

(Ticks beware:  flams is on the case.)  heh.

[flams000]

Hello Jackie - thank you again for these immensely helpful replies.

Good news, I was given the name of a highly recommended LLMD pretty close to me. I left a voicemail there this afternoon, have not heard back yet but overall this is the first big step to finding out what's wrong and that is good news. I got the name from the Lymenet forum but I also did use the referral function on ILAD (just have not received a reply from there yet, it's only been since this morning).

I will also see if my regular GP can get me some doxycycline so I have some defensive mechanism in place before my appointment, whether it be Lyme or some other bacterial issue...

I will continue to update here: Thank you again, so much.

[JackieCalifornia]

You're quite welcome -- we've all of us here been through some version of what you are going through.  (I just noticed I accidentally appended part of your original post at the bottom of my reply -- I often copy/paste a post into the response screen so I can refer to it as I type, but then sometimes forget to scroll allllll the way down to delete the pasted message.  Sorry for the confusion.)

Now back to today!

It's very possible that your wife could have been independently infected.  I am the least woodsy/outdoorsy person you can imagine, and I got Lyme during an era when there was no man in my life ... I probably got it  tromping through college campuses with my kid, and that goes to show every one is vulnerable to Lyme infection.  Above all, don't beat yourself up:  you didn't cause Lyme -- Mother Nature did that.  Now to focus on getting rid of it.  (And also know that babies are not always infected -- the placental barrier can, from what I dimly remember reading, protect the baby from infection, but not always.  All the more reason to find a good LLMD pronto.  I haven't read extensively about prenatal Lyme, so am not knowledgeable on current thinking.)

When you do find a Lyme doc you want to work with, consider having the doc do a work up on your wife, and tell the doc that you want to bring in your pregnant wife for evaluation since you have been all the same places and also could of course have transmitted the infection(s) sexually.  When I was diagnosed, I dragged my teen to my Lyme doc ("But Mom!  I feel fine!"), and the doc was a little dubious -- but he humored me, and when the test results came back, she and I both had Lyme and babesiosis.  The doc was impressed at my forethought. :)  My rule is:  better safe than sorry.  (Also, since the body is in overdrive when pregnant, it might mask any symptoms currently.)  Don't freak:  just get an evaluation for both of you.

You say:  "I am not going to get any answers briskly... and now finding someone who also would know about prenatal Lyme in my area is a massive uphill battle."  Many Lyme docs are in hiding, because of the hassles they get sometimes by docs who don't 'believe' in Lyme ... it's a quiet underground in many places, so you might be surprised how many closeted LLMDs there are around you.  And if you have to travel to an LLMD, the appointments after diagnosis are maybe once a month.  Very doable, given the risk/reward ratio.

You say:  "Here are my immediate next steps:  1) Fax over the lab results and prepare for my appointment with the Infectious Disease Doc next week.  2) I have posted on other forums for more specific LLMD's in my area - I posted this on Lymenet and ILAD."

Did you also email directly to --- contact    [at]    ILADS    [dot]    org --- ?  It's their referral function.  You can also snoop around online looking for a local Lyme group in your area and ask for names.

You say:  "3) ... should I talke my GP into giving me some generic antibiotic to at least thwart whatever it is unitl I can get the right meds... ir is that a bad idea because it could mask the real issue when I finally do see the right doctor?"  You could ask for doxycycline, which is the first line of attack in Lyme IF you haven't been infected for long (that is, before the bacteria encyst) and if your doc is not an LLMD, that's probably what he'd give you anyway.  

Keep a daily chart of what you take and how you feel and what your test results are -- a chart or spreadsheet on your computer (if you're oriented that way) with columns for date, meds taken at what dosages, how you felt, etc., can be useful for your doc.  My memory was so spotty I had to do that, and it turned out my doc loved it -- he'd spend 10 minutes reviewing my updated notes before meeting with me so we were dealing with the same data set.  Not all docs like that, but it sure helped me, since I had pretty bad brain fog and lousy memory function when I was ill.  Can't hurt to do, takes 5-10 minutes a day.

About getting the GP to prescribed doxy or whatever for now, I dunno, but it might not be a bad thing -- just be sure to tell your LLMD when you get there what you took each day at what dose and how you felt as a result (better, same, worse).

You're making all the moves I would -- so carry on, and keep us posted -- !  

[flams000]

Thank you again Jackie. I mean, if I do have Lyme, I would have had to transmit that sexually to my wife, then that would have an effect on the baby... I guess I am trying to talk myself out of that being a possibility because the way this is going, I am not going to get any answers briskly... and now finding someone who also would know about prenatal Lyme in my area is a massive uphill battle.

Here are my immediate next steps:

1) Fax over the lab results and prepare for my appointment with the Infectious Disease Doc next week.

2) I have posted on other forums for more specific LLMD's in my area - I posted this on Lymenet and ILAD.

3) Lastly, this is a question for Jackie: Since I have some time to wait for the appointment, should I talke my GP into giving me some generic antibiotic to at least thwart whatever it is unitl I can get the right meds... ir is that a bad idea because it could mask the real issue when I finally do see the right doctor? I am just worried about this festering obviously as I wait to find the right person and get in front of them...

Thank you again

[JackieCalifornia]

Glad we can help ... it's how we get revenge on the Lyme bacteria:  letting others know how to beat them.  Heh.

About seeing the infectious disease (ID) doc:  by all means take the appointment and see what the doc says, but if you would, please post back here afterward to relate what the doc says, what tests are run, and what treatments proposed.  While the obvious specialists to treat Lyme are ID docs, they are often have the most close-minded views about Lyme and may, for example, not test for co-infections and treat only with doxycycline for a few weeks regardless of how long you have been ill.  That's the standard approach by ID docs as a group, because it was the first analysis and treatment approach created against Lyme just a few decades ago when it initially recognized.  

Those early docs and their junior members concluded that Lyme was rare, hard to get, and easy to cure with a few weeks of doxycycline.  That is still, for the most part, how ID docs and rheumatologists still approach Lyme, despite significant research and learning that has occurred in recent years.  Docs tend to look to their senior members in a particular discipline like infectious disease, and it takes a lot for them to begin to acknowledge that they didn't have all the pieces of the puzzle when they first started studying Lyme.

The split in the medical community is profound, and I would find an MD who is an ILADS member or inclined to their approaches:  ILADS has a website written for docs and patients both, and I recommend it to you.  Dr Burrascano's diagnostic and treatment guidelines are posted there and can give you a feel for how an LLMD approaches the situation.

Another reason to find an LLMD is for advice on possible transplacental transmission.  It does not always happen, but seeing an MD who takes Lyme seriously is what I would do without hesitation or delay.  Babies do not always get Lyme prenatally, but it is important to get advice from a knowledgeable MD.  In addition to resources such as local Lyme patient groups, you can email to --- contact  [at]   ILADS   [dot]   com --- and tell them the area where you live and how far you can travel to an LLMD who is knowledgeable in prenatal Lyme.  The important thing is not to wait, because Lyme can be treated effectively, and the sooner the better.

Let us know how we can help -- try not to worry, and put any anxiety you might have to work by finding a good Lyme specialist for you both.  Keep us posted!  All good wishes to you and yours --

have an appointment with an Infectious Disease Specialist this week and I will cover all of bases... which includes bringing Jackie's information with me. My feeling is, if this is Lyme or in that family, that I just need a different AB for a longer time, since as I said, for the last 2 weeks on the Cipro I felt great, perfectly normal.

Anxiety is still making me crazy and keeping me awake. My wife is pregnant so the last thing she needs is to hear me complaining so I am really internalizing all of this - I just want answers and to get back to normal.

I shouldn't worry about having passed anything on to her should I? I mean she got pregnant about 2 weeks after my kayak trip (but I am not even sure that's when I got it). So, if I need to worry about having passed anything on to her or the baby, I need to know... ugh, god, this is killing me...

[flams000]

Hello everyone - first off, I have posted on many forums for a variety of topics and this is easily the most thorough, detailed, and informative response I have ever received... so thank you immensely. Ok, so I still have symptoms but not as bad... but I know that id fool's gold so I have an appointment with an Infectious Disease Specialist this week and I will cover all of bases... which includes bringing Jackie's information with me. My feeling is, if this is Lyme or in that family, that I just need a different AB for a longer time, since as I said, for the last 2 weeks on the Cipro I felt great, perfectly normal.

Anxiety is still making me crazy and keeping me awake. My wife is pregnant so the last thing she needs is to hear me complaining so I am really internalizing all of this - I just want answers and to get back to normal.

I shouldn't worry about having passed anything on to her should I? I mean she got pregnant about 2 weeks after my kayak trip (but I am not even sure that's when I got it). So, if I need to worry about having passed anything on to her or the baby, I need to know... ugh, god, this is killing me...

[mojogal]

Hi, sorry if I repeat something you or Jackie wrote, my vision is bad.

Perhaps you weren't on Meds long enough? Did you see a tick on you or could you have had it for a much longer time? Mainstream Docs often give a short lived amount of antibiotics. That is another reason to find an LLMD.

I have 4 co-infections in addition to Lyme and those infections required different abx. To me, some of those are worse than Lyme.

Take care

[JackieCalifornia]

[Part 3 of  3]

About half of us have at least one co-infection along with Lyme, and Cipro may well not be effective against the co-infections.  In addition, if Lyme treatment is not begun very soon after initial infection, then the Lyme bacteria create slimy shields in the body called 'biofilms' which allow them to hide from your immune system.  To breach the biofilm so the antibiotics can kill the Lyme bacteria (and it has to be the *right* antibiotics, not just any of them), another antibiotic [such as Flagyl] is needed.  A Lyme doc knows this stuff; other docs generally don't, or simply don't believe it.

You ask, "So do I have Lymes but it was not on the test because I started Cipro and now I should be on something stronger to ensure it's eradicated?"  In your situation, I would consult a Lyme specialist so thta you know which infection(s) you have, and then the second question is what to treat the infection(s) with and for how long.  Not all bacteria are susceptible to the same antibiotics.

You ask, "Or, did I have epididymitis and benign prostate enlargement and the peripheral symptoms mock that of Lymes (since the former is indeed a bacterial infection and it comes with fatigue, and gland issues)."  Dunno.  Ask your new doc; it's a good question.

You say, "Because time is of the essence, I am really freaked out and panicked (which of course is making me feel so much worse)."  Understandable.  And note that Lyme messes with the whole endocrine system, which affects mood and emotion.  It's not you; it's the bugz.
                    =================================
Generally speaking, this is the same blindness the medical world went through when AIDS first arrived:  I remember seeing a white-coated senior doc from the US govt's Center for Disease Control (CDC) go on TV when everyone was fearing that AIDS would spread like the common cold -- trying to calm the public, the doc said flatly that if you weren't gay or Haitian, you *could not* get AIDS.  Well, that was pretty stupid, and we are living through the same blinkered approach by the current docs at the CDC with regard to Lyme.  The docs in the field of infectious diseases (and rheumatology, and others) who would normally manage a disease like Lyme are clinging tightly to the idea of Lyme being rare, hard to get, easy to cure.  NOT.

So ... what to do?  Find a Lyme specialist who thinks bigger thoughts.  They can be hard to find in some areas, because of the orthodoxy of the elder docs re rare/hard to get/easy to cure ... but the enlightened MDs are out there.  If you email to --- contact  [at]   ILADS   [dot]    org   --- and tell them what area you live in ('near Baltimore MD' or whatever), they can send you names of local Lyme docs, but keep in mind that there is no test to be a Lyme specialist, and some of them are a little ... odd.  Look also for patient affinity groups in your area and pick their brains for who is a good LLMD.

Whew.  Enough from me.  Sorry for the mass verbiage.  Keep us posted!  It's a fight worth making -- I've been clear of Lyme and a co-infections for ~7 years now.  Go for it -- and keep us posted.

==end of message==

[JackieCalifornia]

[Part 2 of  3]
==============beginning of quote===============
MEANING OF IGENEX TEST:

The following is a breakdown of the Western blot only. As co-infections will show their own titers. A positive IgM is a sign of a current/active infection. IgG can be a sign of an older/longer standing infection and if symptomatic treatment is needed. If the tests are negative, remember no LD [Lyme disease] test is 100% reliable and sometimes a body is too weak to produce an accurate positive result. LD is a clinical diagnosis and ONE band in the test being positive can indicate Lyme Disease is present. Please keep reading.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PLEASE BE AWARE MANY LLMD'S CONSIDER A BAND THAT IS 'IND' AS POSITIVE, IGENEX TEST READS 'IND's' ARE SIGNIFICANT AND DOES NOT INDICATE A NEGATIVE.  [IND means indeterminate -- maybe yes, maybe no, but the opinion of some is that IND is a weak positive, because it's *not* nothing.]

IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses. If ONLY band 31 is positive and no other specific bands are positive, it is recommended to have tests #488 and #489 31 kDa epitope Igm/Igg to make sure borrelia hasn't crossed reacted with several possible viruses....but AGAIN ONLY IF BAND 31 ALONE is positive.

[very important! ===>>>]  There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93. Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease. (More info pages 12 & 13 "Western Blot Made Easy": http://www.publichealthalert.org/pdfnew/2007_06.pdf
~~~~~~~~~~~~~~~~~~~~~~~

Igenex Western Blot Break Down by band
9 cross-reactive for Borrellia
12 specific for Bb
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above)
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain - Has cross-reactivity with several different types of viruses
31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]

An IgM positive test result means more recent & likely currently active infection. IgG positive means previous exposure to the bacteria or older infection of Lyme. If no symptoms are present with IgG positive, it may mean an "inactive" LD infection. No matter the results, please remember LD is a clinical diagnosis, you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs. If you have symptoms, it is imperative to see a Lyme literate Md so that you can be properly diagnosed and treated. If your test reads "CDC negative" please read the following link (both pages) at it explains how this occurs. http://www. ilads. org/lyme_ disease/about_lyme. html

==============end of quote===============

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[JackieCalifornia]

[this will be in three (!) separate posts, if all goes well]

[Part 1 of  3]

Welcome to MedHelp.  You don't need to apologize for not having a tidy presentation of your situation ... Lyme is a messy thing, contradictory and confusing for all concerned.  That's partly why the docs are so confused:  they like tidy stuff.  

Lyme is messy for a number of reasons:  

-- about half the time, Lyme comes with other unrelated infections (called generally 'co-infections') carried by the 'Lyme' ticks, so the symptoms each of us has can vary quite a bit, but it takes an expert to parse which symptoms might indicate something or than or in addition to Lyme that needs to be tested for.  And note:  these co-infections often do *not* respond to the antibiotics used against Lyme.

-- Lyme itself has several strains, which produce somewhat different symptoms, and Lyme can affect different people in different ways:  some of us have more muscle and body aches and pains, while others have more neurological symptoms, often described as 'brain fog' -- meaning confusion.  This is on top of co-infections and their own varieties of symptoms.

-- Docs often rely heavily on seeing a round, red rash that is a sign of a Lyme infection, but many of us don't ever have a rash (I didn't), or it's on the scalp and never seen, or it's on a body part you don't spend a lot time looking at, or it looks like something else -- but many docs won't diagnose Lyme without the rash.

-- Docs too often say 'we don't have Lyme here' -- but Lyme is everywhere.

And so on.  Because Lyme is a relatively recently recognized infection in the medical world, docs are still in the denial stage, and those who first 'discovered' Lyme not many years ago are still high up in the medical world, and they cling to their initial views that Lyme is rare, hard to get, and easy to cure.  Wrong on all counts.  

That's the background noise, now on to your post:

You say:  " I went and got a test for Lymes and a complete diagnostic workup from labs."  The standard tests for Lyme are called Western blot and ELISA.  If the test results are positive, they are reliable; if they are negative, they are not reliable.  Why?  Because these old tests rely on your immune system's reaction to the presence of Lyme bacteria, but Lyme has the ability to suppress your immune system.  Result:  negative test, but you can have Lyme.  (Note that a positive result on these tests is reliable, but a negative result is not.)  

A Lyme specialist (more on that in a minute) may use these tests, but will also likely use a different test that does not rely on your immune system's reaction as the ELISA/Western blot tests do.  Instead, a test that looks for DNA of the Lyme bacteria is what a PCR [polymerase chain reaction] test looks for.  That is direct evidence of infection, not the indirect indicator of ELISA/Western blot.  (My doc was impressed that I was positive on all three tests, because it meant my immune system was still up and fighting after more than a year of infection, but that's not common.)

When you say that "Everything in the results was 'normal' ", I'm betting you were tested by ELISA and Western blot.  If you did not get copies of the tests result, request them from the doc's office ("for my files", I always say), and ask for the *detailed* results, not just the summary page.  Your new doc might be helped by the extra data.

To your questions:

"1) My symptoms mirrored Lymes so much (but also Epididymitis). Could the negative test simply have been because I already started the Cipro?"  Maybe, but see above re suppression of the immune system as well.  Another issue is that Cipro is not an antibiotic that is (to my understanding) usually given for Lyme, and it may well not work against some or all co-infections, which often need separate meds from what if effective against Lyme.

"2) I stopped the Cipro 5 days ago and I do have some symptoms that returned... the should pain, the neck is stiff, and some testicular pain... ejaculation not 100% either. But this could be some lingering Epididymitis - "  ... or it could be that Cipro was partially effective.  Dunno.  An LLMD would know.

"3) The Lyme's test (although holistically negative) does show me reactive to one bacteria - 41KD (IGG Band)... whatever that means...to them, it was negligible since the LONG list of other bacterias were all non-reactive."  Courtesy of the TruthAboutLymeDisease site, here is the breakdown on what the bands mean on only the Western blot test (in this case, offered by IGeneX labs, which is well known in the Lyme field).  My few comments are in [square brackets] below.

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[flams000]

I forgot to mention the timeframe between the day of the welt, and the lyme disease test.

Day of kayaking: 10/18/14

Day of Lymes Test: 12/17/14