Is there such a thing as borderline positive in Lyme Disease?

[2johndeereboys]

Back in August of 2015 I spent about an hour on a nature trail in the woods. I  was there with my husband, son, and a photographer (we were taking my son's senior pictures). Fast forward two days, and I break out in a rash.....now it's wasn't a bulls eye rash, it was more like an allergic reaction rash. I first noticed it on my sides & abdomen, then later that same day it showed up all over my legs. But just from the knees down to my ankles. And the itch was so intense!!! In addition to itch I was experiencing fatigue and muscle pain.

I went to my PCP who ran some blood work.....Lyme disease test, RMSF test and 1 other tick born disease (I don't recall what it was called).....they all came back negative except the Lyme disease test......it came back borderline positive. I was given a mega dose oral steroid pack & an antibiotic.

Back in September 2015 I was diagnosed with Pars Planitis (Intermediate Uveitis) I have it in both eyes but it is worse in my right eye. I have been told that Pars Planitis can be linked to auto-immune disorders......I have not been tested for any as of yet.

I later found out that what I actually  had was Oak Mite Bites. I live in Southeast Mo and there was an outbreak in my area at this time. So I don't THINK I was ever bit by a tick. I never found one on me anyway.

So since I never found a tick on me how did I end up borderline positive with Lyme disease? I am not what you call an outdoorsy person. lol I know there is a link between Lyme & MS and a link between Pars Planitis & MS.....but is there a link between Lyme & MS?

BTW.....I am a almost 42 y/o female who is healthy......I do take some daily meds but they are for Bipolar, Anxiety & OCD....

I am sorry this is so long I am just trying to wrap my head around all this!!
Thanks in advance if anyone replies!!

Lisa

[wonko]

I'm late to this post but when I saw the title, all I could think of was:

Having Lyme is like being pregnant:  You either are or are not, there's no being "a little pregnant" or having "a little Lyme."  

Now, not all cases are equally severe or with the same symptoms, but if you have it, you have it.

[JackieCalifornia]

To add to Katya's Feb 05 post above:  I would agree that IGeneX is a better test, because IGeneX does not rely on the human immune system to gauge whether there is a Lyme infection in the human.  Lyme bacteria can and do suppress the human immune system, which on the non-IGeneX tests can and do cause the test results to look negative for Lyme infection, when the opposite may well be true.

[Katya4]

IgeneX is a better test. And I can say that from experience. I got my PCP to order it after my normal Lyme AB came back negative, and then lyme showed on the Igenex test. I got their basic WB.

[Katya4]

I look at it this way. You can't halfway have the flu, or any other sickness including lyme. It can be better or worse as far as symptoms but either you have it or you don't. Unfortunately tests aren't that sensitive. So I would treat a borderline as a positive.

I had an indeterminate test, but reactive bands on some specific lyme bands. Those wouldn't be there if i wasn't exposed to lyme.

You might consider finding an LLMD if you can. This is the best option. If not that then trying to find an open minded PCP or you could try herbal methods (i don't know if they work personally but other claim success,  I am considering trying my self in the mean time while I continue to search for options)

Others have already posted lots of good info here and are very knowledgeable. I wish you good luck!!

[JackieCalifornia]

You say above:  "my PCP should have ordered a western blot test to confirm the results of the first blood test. And she did not."

A big part of dealing with Lyme are all the unknowns -- Lyme is new on the scene for most of us, and there are few docs *and* patients who fully understand it ... so it's not surprising that the docs are as confused as the rest of us.  Some docs are more open-minded than others, and if you find that your current doc(s) are not paying attention in a open-minded way, then a quiet search for a new Lyme doc might well be in order.

That's what took me to some MDs, to find diagnosis and treatment for my ailment that the docs just didn't seem able to understand.  Either the docs think bigger thoughts and begin to understand the particular aspects of Lyme in order to deal with it ... or the docs don't get it, and after a few rounds of doxycycline, the docs tell you that you are cured, because that's what other docs have said.  Round and round we go ...

Current-day medicine tends to be rather complacent when a new illness arrives in our society ... because the docs all rely on each other to consult with on new (to them) illnesses, and that leads to problems when none of the docs really understands new ailments like Lyme.  That leaves us, the patients, without foresight and understanding that all docs should strive for, but when the medical docs rely on each other, then the doc all end up standing in a circle and congratulating each other on how brilliant they all are ... while the patients are outside the circle and being ignored.

This is over-simplified, but it's my view of why today's docs often don't take ownership of a new illness like Lyme, because all docs are taught to believe that all diseases are now known and that some guy in the back of the lecture hall at medical school really knows ALL the issues and treatments, so we don't need to worry, all will be fine.  Uhhhh .... wrong.  Mother Nature dreams up new illnesses all the time ... but modern medicine forgets that.

And another aspect is that when MDs as a group get so specialized that they each only know one slice or layer of medicine, then that is when they stop thinking big thoughts and just wait for some other doc to pick up the slack in diagnosis and treatment of whatever new illness has arrived.

When medicine was simpler, every doc was familiar with pretty much every ailment.  Now that most docs are specialists, the ball gets dropped a lot, because the docs tend to each focus only on their own small area of expertise.  This is why having a broadminded Lyme doc is so important, to keep a broad and open mind about what infections/ailments each patient might have, since Lyme just loves to go make new 'friends', if you will.

A bit of adjustment in how we all view new and emerging ailments is important to keep us all on the lookout.  It sounds like you're on your way now ... but if it looks like your doc is getting complacent, then consider another opinion after a while.  I got lucky and the 20th MD I saw really, really did understand what I might have, and he got me tested and properly diagnosed that none of the other, more narrow docs missed because they weren't seeing the whole picture.  

You're on your way now, and do keep us posted!  There can be bumps in the road to being well again, but probably not many bumps or many big ones.  Hurrah!!  J

[lovelylady8]

anybody diagnosed with lyme had diagnoses with add borderline bipolar and or posttraumatic stress? what is what is hard to say cause before i was diagnosed with lyme i had diagnosis borderline and add. im suffering nervepain and anxiety now by entering a new relationship that doesnt want many problems. it triggers all bad in me really but who is really wanting a person with so many issues. im getting desperate tryting to solve this

[grdner]

Just to add that "borderline" results may also mean that you've had Lyme for a longer time.  It hides from the immune system so that the body thinks it's gone and ramps down, and then the test results don't show up as strongly.  Mine don't register strongly enough to pass the CDC levels required for a positive result, but I have all the markers and the symptoms and many opportunities to have encountered ticks so the clinical diagnosis is Lyme.

The Lyme bacteria can mess with the eyes also.  Well, it can mess with pretty much everything... I am not familiar with Pars Planitis but it seems it would be worth pursuing the Lyme to make sure it's not connected (also be good to mention it to your eye doc if you haven't already).
Keep after it and Best of luck to you -

[2johndeereboys]

Thank you so very much for your reply!!! I am just trying to wrap my head around all of this. From my understanding my PCP should have ordered a western blot test to confirm the results of the first blood test. And she did not.

I am still having problems with my eyes so I am going to see my eye Dr tomorrow and will go over some of this with her. I think it may be time to find a new PCP too......

Thanks so much again for taking the time to reply!!

Lisa

[JackieCalifornia]

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(And PS, *always* get copies of ALL your Lyme tests and keep that copy for your own records.  Going back and asking for old test records from previous docs is uncertain, because the clerks either don't understand what to copy or what's important.  Keep your own test results, and let other docs copy them, but YOU keep the original copies.  You never know for later.)

You say, "I later found out that what I actually  had was Oak Mite Bites. I live in Southeast Mo and there was an outbreak in my area at this time."  Maybe.  But Lyme is everywhere, and it will not go away without proper diagnosis and treatment.  

You say, "So I don't THINK I was ever bit by a tick. I never found one on me anyway."  Me either.  But I sure had Lyme and babesiosis.

"So since I never found a tick on me how did I end up borderline positive with Lyme disease?"  Because a tick carrying Lyme bit you.  Full stop.

"I am not what you call an outdoorsy person."  Me either.

" lol I know there is a link between Lyme & MS and a link between Pars Planitis & MS.....but is there a link between Lyme & MS?"  I don't know, but don't try to find other, more exotic diagnoses and explanations for your ailments UNTIL a good Lyme doc says you are clear of Lyme, whether because you never had it or because you have been fully treated for all the relevant co-infections in addition to Lyme.

You say:  "BTW.....I am a almost 42 y/o female who is healthy......I do take some daily meds but they are for Bipolar, Anxiety & OCD...."  Lyme messes with the whole endocrine system, meaning hormones, which in turn mess with emotions and anxiety and so on.  These symptoms you name may be *because* of Lyme, and I would see a Lyme doc without delay.  It's never too late to treat Lyme, but the longer you wait, the longer it may take to get well.

You say:  "I am sorry this is so long I am just trying to wrap my head around all this!!"  I think you are doing an *excellent* job of remembering all this detail and putting it out for consideration.  I'm not medically trained, but I had Lyme, and it's serious business -- please do find a good Lyme specialist for a workup.  If you need referral to a Lyme doc near you, look at the ILADS website and see if there is a Lyme doc near you (ILADS can send you names of their member docs nearby).  Also look for Lyme patient groups near where you live ... they often have the best scoop on which Lyme docs are best.  

Lyme is still a developing ailment, so don't be surprised if there are conflicting views and docs ... but it's DEFINITELY worth making the effort.  I am still fully well some 9 years after my Lyme treatment, and I would take the same path again.  Let us know how we can help, and also how you do.  

You go!!  All good wishes to you and yours --  And PS, think about getting your hubby and children for a work up once you have found a Lyme doc you like.  I dragged my then-teenager to my Lyme doc, and it turned out we both had Lyme and babesiosis.  I got a lot of flak ("But Mom!  I feel FINE!!")  It was only after treatment that my kid sheepishly admitted that she really did feel better after treatment, and that I had been right to drag her to the Lyme doc for testing and the needed treatment.  We both had Lyme and babesiosis.

[JackieCalifornia]

Welcome to MedHelp Lyme!  Many of us have been in similar situations as yours -- and good for you for pursuing what ails you, whether it's Lyme or not.

You say, "I got Lyme several years ago on a family trip driving and stopping and wandering around from Maine to Virginia for about three weeks, stopping in leafy areas to wander around, but we didn't see any ticks on us or have any bites."  That's not uncommon:  several years ago, my family got Lyme on a driving trip through the same areas you did.  It was only after we got back to California did we realize we weren't just tired from travelling, but we were not feeling well overall (tho I felt a lot worse).  I described it like a combination of the flu and a hangover.  

(Note: it's not unusual for each person with Lyme to have different symptoms from others -- a big part of that is that 'Lyme' ticks do often carry other miserable infections, and when blended together in one patient, the whole symptom picture can change.  No wonder the docs are confused.)

I began trekking through one doc's office after another, and after months marching through 20 doctor's offices of various kinds, Dr #20 tested me for Lyme and a few other things.  This time, my test was positive (!) for Lyme, indicating infection with Lyme disease, and was also positive for another infection:  babesiosis, which is also often carried by those with Lyme, but needs diagnosis, testing and treatment all different from that for Lyme.  

(Note:  It is not uncommon that the 'Lyme' ticks carry more than one infection, with the result that the symptoms are all confused and mixed for the doctors, and the docs send the patient home without proper diagnosis or treatment.  One of the many docs I saw told me very gently that he knew I was ill, but he just didn't know what it was.  Another doc I saw on my trek through the many docs' offices told me (unkindly and inaccurately) that I 'could not possibly have Lyme', because all his Lyme patients were 'all near death.'  Uh, wrong.  From what I read, people don't generally die from Lyme, unless there is some other serious medical problem present.  

When I got further down the line, to Dr #20, he tested me with one of the newer Lyme tests (from IGeneX Labs in California).  My tests came back positive for Lyme and for another infection often carried by the 'Lyme' ticks:  babesiosis.  It's not uncommon for 'Lyme' ticks to give people one or more infections in addition to Lyme, and it takes a wise and experienced MD to sort out the symptoms and know what to test for.  

In addition to the (often strong) possibility that someone with Lyme also has one or several additional infections carried by the 'Lyme' ticks, the standard tests for Lyme are not very accurate:  Lyme was discovered only a few decades ago, and the docs who figured it out in those early years believed that Lyme was like many insect infections:  not a big deal, and a short course of commonly used antibiotics (like doxycycline) will fix you right up.

Uhhhh ... wrong.  It turns out that Lyme is a complex infection making the original tests for Lyme not particular accurate ... because the Lyme bacteria can conceal their presence and shield the bacteria against not only commonly used antibiotics (like doxycycline) but also suppress the human immune system ... which means the commonly used tests for Lyme may well come back negative (meaning you don't have Lyme), but because your immune system is blocked from detecting the Lyme, your immune system may not react to kill the Lyme bacteria, and the older tests also often miss the diagnosis as well, as mentioned above.

You say, "... I break out in a rash.....now it's wasn't a bulls eye rash, it was more like an allergic reaction rash."  It's not necessary for it to BE a bullseye rash, and some of us (like me) *never* see a rash, sometime because it's on the scalp where hair covers it, or on a part of the body that doesn't get seen much (lower back), or it looks like a strange mosquito rash, or  the person's immune system just doesn't gear up to *make* the rash happen ... and so on.  Bottom line, if you see a rash, it's good evidence, but if you don't see a rash, it doesn't mean you do not have Lyme:  look to the other symptoms as well.

You say, "I first noticed it on my sides & abdomen, then later that same day it showed up all over my legs. But just from the knees down to my ankles. And the itch was so intense!!! In addition to itch I was experiencing fatigue and muscle pain."  This could also be something like poison ivy etc., and there is no rule that you can't get poison ivy AND Lyme at the same time.

You say, "I went to my PCP who ran some blood work.....Lyme disease test, RMSF test and 1 other tick born disease (I don't recall what it was called).....they all came back negative except the Lyme disease test......it came back borderline positive."  This is great evidence!  Many of us never see a tick or get a rash -- I didn't.  The trick is that the doc needs the wisdom and awareness to press ahead on the possibility of Lyme and its co-infections, but docs sometimes miss the boat regardless.  If one Lyme doc doesn't get you well, see another.

You say, "I was given a mega dose oral steroid pack & an antibiotic."  Two comments:  (1) The Lyme ticks can indeed be killed off by antibiotics, but it has to be the right antibiotics for the right length of time:  Lyme has a relatively long life cycle, so it needs longer treatment to wipe the infection out.  (2)  Steroids work by suppressing the human immune system, which means the steroids stop your body's reaction against Lyme, which gives Lyme a free pass to stay in your body and to party on.  I'm not a doc, but I still am shocked that an MD would treat any bacterial infection (including Lyme) by suppressing the immune system.  That's just backwards, but there are plenty of MDs who still think it's the right thing to do.  I'd find another doc.

You say, "Back in September 2015 I was diagnosed with Pars Planitis (Intermediate Uveitis) I have it in both eyes but it is worse in my right eye. I have been told that Pars Planitis can be linked to auto-immune disorders......I have not been tested for any as of yet."  This is good to know -- I have read that among all the types of specialist MDs, ophthalmologists (MDs who specialize in eyes) are the best at understanding, testing, diagnosing, and treating Lyme disease.  I would find an ophthalmologist right away, and bring a copy of your medical tests to the doc so s/he can see what your history is.  

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