Lyme Disease

[JessicaMommy]

Hi everyone,

My name is Jessica and I am 26 years old.  I have not been feeling well for about 5 and a half years now.  Ive been to the doctor many times and have many tests done that have all come back fine, except for my last MRI.  I should non specific white matter at the front of my brain.  (I have read this can be related to Lyme Disease and also MS.)  I currently waiting to see an neurologist and Im also working with an ENT to rule in or out inner ear problems etc.  Im scheduled for a ENG balance test tomorrow that I have been waiting to get an appointment for, for 7 months now.  

Anyways I came across information on Lyme Disease on the internet a month ago and started reading it.  It sounded like what I might have so I went back to my doctor and asked about the possibility of me being sick with Lyme Disease and maybe this is what is causing my symptoms.  She agreed that we should do a blood test to check.  I had an EIA done and Western Blot.  I got my results last week.

The EIA came back REACTIVE
Western Blot IgG came back NON- REACTIVE  
Western Blot IgM came back FAINTLY REACTIVE

Doctor started me on 100mg of doxy 2x a day for 21 days, which I started a week ago now.  I see her next week to talk more.  

My symptoms started 5 and a half years ago and are : 24 7 off balance feeling like walking on a boat and unsteady although no one could tell its just how I feel, I have bouts of feeling lightheaded as well as sometimes I feel faint.  I feel heavy headed and tired usually.  About a year ago I started having tingling up my spine.  I get this weird numb tingling sensation in my spine and my lower back is achy.  Mainly my main concerning symptom is the balance problems.  Ive had 3 MRIs over the last 5 years all normal except the last one showed non specific white matter at the front my brain.  

What do you think about my test results - im confused what I should think as I know it is CDC negative and it is considered a false positive.  I also should point out I do have the mono virus (years ago tested positive) so I have heard about this producing false positives like this before....

I m concerned about MS being the cause of my problems too, have been for a long time as well as my doctor, but im not sure which direction I fit in right now... Lyme Disease.. MS... or something else.  Any advice or input would be appreciated!!!  Thanks :)

[JackieCalifornia]

One more set of comments from me.  You say above:  "I posted my Lyme test results... is it possible it actually is a false positive like the CDC states."

The CDC set up its test levels to be absolutely certain that anyone counted as having Lyme really, really, really did have Lyme -- because the CDC was not setting up diagnostic test levels for a doc to use on an individual patient, but instead was trying to chart the spread of Lyme across the country.  To defend that kind of demographic, scientific approach, the tests have to be incredibly certain, or the mapping of where Lyme has spread will be inaccurate.  In demographics, pure data is more important than leaving out some people who really are sick but whose immune system is just not registering (in the case of Lyme, it's worse because Lyme suppresses the very thing the test is looking for:  your immune system reaction to Lyme).

Since that ultra-pure testing was put into place, however, the CDC has adopted it as THE standard for whether patients have or don't have Lyme.  Scientific research like the CDC does has to be ultra pure to be useful, but Mother Nature and the human immune system don't work that way:  you can be really sick with something, but because you miss hitting the cutoff on the tests by 0.0000001 percent, you are put in the group of people who do not have that disease.  Clinical medicine (focused on the patients) is NOT the same thing as scientific medicine (focused on pure data for research purposes).  Good Lyme docs know this.    

You say, "It was non reactive for the Western blot Igg and only faintly positive for the Western blot IgM" -- wait!  "FAINTLY POSITIVE" means ***POSITIVE***.  You can't have a little bit of Lyme and not be infected -- just like you can't be a little bit pregnant.  Positive is positive.  

You say, "my IgG should be positive on my western blot although I have read that sometimes its not.  But it should be!"  Well, the bacteria didn't read the CDC's test standards before deciding on how to afflict a human.  Nature and disease don't know how they 'should' act -- they do whatever they please.  The tests are imperfect, but the diseases are not.

Also recall that the Wblot/ELISA tests are looking for is your immune system's reaction to the presence of Lyme, but the Lyme bacteria can and do *suppress your immune system* -- so you can be ragingly ill and still not show positive on the test results, because the Lyme bacteria stop your body from producing the very reaction that the Wblot/ELISA tests are trying to measure.  LOUSY TESTS, but it was all that existed until a few years ago, when PCR came along.

Please see a Lyme specialist.  Seriously.  What do you have to lose, besides a little time and a little money for the test?  You may get your health back as a result.  Go for it!

[mojogal]

Hi, you need to find a Lyme literate Dctor, LLMD. I was one of the people who were misdiagnosed with MS due to the white matter on my MRI. It wasn't until I found an LLMD who took igenex testing and recognized co-infections by the clinical symptoms, that I was able to walk again. I am still working on getting better but I am much better than I was.

[JackieCalifornia]

You've been sick too long already -- 5 years!  To stay all tangled up with docs mumbling about 'false positive' tests and what your IgG 'should be' is to try to squeeze the patient into the accepted medical paradigm.  It should be the other way.  

Rather than taking antibiotics and testing again can work, but why not find an MD who uses PCR tests instead of the frequently faulty Western blot and ELISA tests?

Not trying to give you a hard time, because I know you are trying hard to follow what all the docs are telling you ... but too many of the docs are way behind the curve when it comes to Lyme.  I would find a Lyme specialist for a work up ... Just think about doing it, okay?  Others here may have suggestions for you too.  

I know how awful it is to be sick and wandering from doc to doc ... and I know you're trying very hard to figure all this out ... This is one of those odd moments in history and society when the 'experts' including many MDs are not on top of things (they are only human, y'know), so thinking outside the box may be the right thing to consider.

I admire your grit and effort!  Let us know how we can help.

[JessicaMommy]

Thank you!  I will be sure to update.  I posted my Lyme test results... is it possible it actually is a false positive like the CDC states.  It was non reactive for the Western blot Igg and only faintly positive for the Western blot IgM,,,and my symptoms have been for 5+ years...so my IgG should be positive on my western blot although I have read that sometimes its not.  But it should be!  

Mri would to be to look for further changes of possible MS as I did have that on my last MRI.  And what I meant by doing another western blot is that ive read sometimes doctor give you a trail run of antibiotics if they are not sure if you have Lyme Disease and it might produce a positive IgG if I did have lymes disease... gives the immune systems a chance to kick in a again or something and produce it,,,

[JackieCalifornia]

Sorry for the info overload!

You say:  "Ive been on the antibiotics for a week now almost... no better, no worse."   It has to be the right antibiotics for each infection, and Lyme ticks often carry more than just Lyme.  Treatment for Lyme isn't like an earache -- it often takes months of meds -- and Lyme also can really wear you out.  Even after treatment, it can take a while to get the old energy back again ... kind of like having a baby.  :)

Neurologists as a group are not known for their progressive views in Lyme treatment -- but you may luck into a good doc!  Fingers crossed.

MRIs are not generally diagnostic for Lyme -- SPECT scans are often used instead -- but maybe your doc is looking to rule out other possible ailments.

Others here can speak to this better than I, but I don't know that taking an antibiotic challenge will stop a Lyme infection from suppressing the immune system, and the Western blot test relies on measuring your immune system's reaction to the presence of Lyme.  That is, it's an indirect test, like seeing a burglar's footprints in the flower bed but not seeing the burglar.  

The PCR test works differently and is not affected in that way -- instead, the PCR [polymerase chain reaction] test looks for the actual Lyme bacteria's DNA in your blood, and that test is not affected by Lyme's ability to suppress your immune system, so it is often preferred by Lyme specialists (but not all docs agree).

fwiw, and best wishes!  Let us know how you do, okay?

[JessicaMommy]

Thanks for the reply.  Lots of good information!

Im just concerned about what it is I have because treatment is different for each thing Im considering right now!  Its so hard to tell if its Lyme, MS or something else... I guess time will tell. Ive been on the antibiotics for a week now almost... no better, no worse.

Im looking forward to results from my ENG tomorrow, seeing a neurologist, I will probably request another MRI due to the changes on the last one.  I will probably ask Western Blot IgG now that I have used antibiotics.

[JackieCalifornia]

[part 2]

The old-think docs mean well, and many of them look down on the LLMDs as a bunch of quacks, but it is simply an error on the part of the nonLLMDs.  (I remember when AIDS was first 'discovered' a few decades ago, and to quell the rising panic that an epidemic was underway, the CDC (Centers for Disease Control, an arm of the US govt) called a news conference and rolled out some white-coated senior MDs [complete with stethoscopes draped around the neck] to assure the populace that unless you were either Haitian or gay, *you* could* not* get* AIDS.*  Full stop.

Well, even I knew bacteria don't care where you're from or who your friends and loved ones are, but here we are, stuck in the same dense thinking about Lyme that the medical community help toward AIDS 'back when'.  

     ----->>>>> So what to do?  Find an LLMD and go from there.  A Lyme specialist will be the first to tell you that you do not have Lyme, if you don't, but they will have the tests and medical skills to give you a sensible and responsible answer.  

Lyme is a developing field of medicine and science, so there are some oddball docs out there that I wouldn't take my dog to, and sometimes it's hard to tell which doc really knows his stuff and isn't too fringe.  Word of mouth and snooping around on the web can help.  My first stop would be at the website  --- ILADS   [dot]   org --- which is the main voluntary organization for docs who think more enlightened thoughts about Lyme and its co-infections that often travel with the Lyme bacteria.  There is a link on their website to ask for names of ILADS members near your location.

Depending on where you are, there may be local Lyme groups who can quietly clue you in to who the good Lyme docs in town are.  I got lucky and found a great Lyme doc a short drive from home, but sometimes it takes a little searching.  Your data here doesn't include your state or city, which is fine, but you might want to include in a new post here something like 'Need LLMD near Portland OR' or whatever.  

Once diagnosed and on a treatment plan (which often extends for months due to the peculiar characteristics of Lyme, including its ability to hide from antibiotics), appointments were about once a month.  I had Lyme and one co-infection (a bonus disease about half the 'Lyme' ticks may carry), and co-infections often need different meds from Lyme, so my treatment time was something like 6-9 months total, tho it's been a while and I've forgotten exactly.



If you are not comfy with the first doc you go to, go to another one, and ALWAYS get FULL copies of all test results that are run.  Lyme is a still-developing area of medicine and science, and while one doc may look at your tests and symptoms and say you don't have Lyme, another doc may read it all entirely differently.  There is much about Lyme like old-fashioned medicine, which is an art and not cookie-cutter, one-size-fits-all medicine.

What a nightmare, huh?  Well, it's worth the aggravation to get well.  Been there, done that.  Let us know what and how you do, okay?  Oh, and one more thing:  we *don't* generally put Lyme docs' names out here in the open.  The split in the medical community between old-think docs and Lyme docs is ugly, and in some states there are virtually no Lyme docs because the medical establishment *still* believes Lyme is ALWAYS cured with a couple weeks of doxycycline.  Sigh.

Take care, and let us know what you do and how it goes, ok?  You found us, which says you persevere -- this is a good sign.  :)  

[JackieCalifornia]

Welcome to MedHelp Lyme -- I am sorry you have been feeling so lousy for so long!  I think you are asking all the right questions, working through the possibilities.

You may be aware of the current split in the medical community about Lyme.  The MDs who first 'discovered' Lyme are senior now, but still have much influence over Lyme diagnosis and treatment guidelines, still following their earliest impressions of Lyme and how to diagnose and treat it.  That is the bind that patients are caught in:  more and more of us have Lyme because it is spreading widely as diseases do (think flu and measles, for example), but the original 'discoverers' of Lyme have not updated their diagnostic and treatment approaches.  

The MDs you have seen so far sound like they fit nicely within that immovable view that Lyme is hard to get and easy to cure with a short course of doxycycline; if any symptoms remain after the doxy treatment, then the blame is place on the patient's over-active immune system that is still trying to kill a now-eradicated Lyme infection.

However, Mother Nature is a tricky witch, and as with everything from athlete's foot to the flu and AIDS, infectious diseases wander the landscape and work their mischief as long as there are new suckers ... errr, patients to give an infection to.  There was an effort to create a Lyme vaccine several years ago, but it failed for reasons I have not studied, and the truth is that Lyme is spreading and requires antibiotic treatment (tho some use herbs or other alternative approaches).

Lyme has an added feature as a bacterial infection:  it has the ability to evade the human immune system by creating 'biofilms', slimy areas in the body which protect the Lyme bacteria from the immune system, which would otherwise wipe out the Lyme bacteria, as with many other disease we are all familiar with (measles, mumps, and the flu, as examples.)  When antibiotic treatment for Lyme treatment began a few decades ago, it was not yet clear that the 2-3 weeks of antibiotics would often not be effective against Lyme, because of the biofilm problem, which doxycycline (the usual antibiotic used against Lyme) could not penetrate.  

Symptoms of Lyme would often continue after doxy treatment (unless treatment began almost immediately after infection, but many of us never knew we were bitten), and the docs labeled the continuing illness a simple artifact of the supposedly now-dead infection and tossed the continuing ailment into the catch-all syndrome 'fibromyalgia.'  A syndrome is a collection of symptoms without known cause ... because of course "the Lyme must be dead!  We gave it a couple weeks of doxy!"  And that is where so-called mainstream medicine stopped thinking.

The MDs who were the initial docs to recognize Lyme were also the docs who didn't know about biofilms, and out of pride and ignorance, those docs are still practicing medicine and clinging to their early determinations about Lyme being (altogether now:  'rare, hard to get, and easy to cure').

Thankfully, there are other docs who took up the cause and studied Lyme more in depth and figured out the biofilm problem that keeps the immune system from killing the bacteria, as they would with any other usual infection.  Those are the docs to see when you have or suspect Lyme.  

To differentiate between the old-think docs and the more progressive docs, patients have begun referring the new-think docs as 'LLMDs', short for Lyme-literate medical doctors.  It's not a degree, but patient slang you will see around here and other places.  If you ask an MD is s/he is an LLMD, they may cringe or smile and probably say no, because it is just a handy tag that patients use among themselves.  

(continued in next pane below)