Confused about Lyme Disease

I have been diagnosed with Lyme based on My Igenex lab test with 4 positive and one IND band, plus a Cd-57 lab showing 18 (60-200 normal).  However, I show this to my neurologist and he said "the bands can be present for man reasons and are not always suggestive of Lyme:.  I have band 18, 41, 66, 83-93 positive and 23-25 IND.  He does not feel my symptoms of the followig:
myoclonus, sleep disturbances, internal tremor, burning skin, blurry vision, pains and needles, muscle cramping, deep muscle and bone pain, joint pain, stiffness, bottom of sole pain, and various other things can be attributed because my symptoms wax and wane depending on the day.  Sometimes going away for months at a time only to reappear with a vengence.  He said Lyme would present consistently.  He feels it is more likely I have a neurological condition that they just cannot figure out yet, but will present itself in time or I have a psychological problem!  Note that I have been to 7 doctors and one major university hospital who have done the tnire workup on me only to be told "you're healthy!"  Really?  Then why do I feel like crap?
So, two questions.
1.)  Can these bands be indicative of any other disease?
2.) Do Lyme symptoms remit for long periods of time and relapse (such as MS)?
3.) How do you get the insurance company to pay for treatment when they do not consider either test to be CDC approved?  I am paying a lot out of pocket for the treatment and I will be broke very soon at this rate!

Thanks!

[JackieCalifornia]

Welcome to MedHelp Lyme ...

I am impressed that you managed to get the IGeneX tests run without having a doc who understands Lyme.  Did the neurologist order the tests?  Just wondering.

truthaboutlymedisease [dot] com has a rundown of what each ban on the IGeneX test means, including (and I quote from that website):

     "18:  highly specific to Lyme (many LLMDs say if this band alone is positive, you have Lyme)
     "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 flagella)
     "66:  cross-reactive for all Borrelia, common in all bacteria
     "83-93:  specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
     "23-25:  outer surface protein C (OspC), specific for Bb"

When the nonLLMD neurologist you consulted said the bands can be present for many reasons, he meant the exceptions noted above.  There is also more data at the website noted above.  And see ILADS [dot] org, under 'About Lyme' -- it has lots of information about testing and diagnosis and treatment.  ILADS is the main LLMD organization.

I just love these docs who say 'yeah, you're sick, but I don't know what it is and it cannot possibly be Lyme, tough luck.'  This is willful blindness on their part, imo.

To answer your specific questions:

1)  The bands that are not specific to Lyme [meaning bacteria other than those that cause Lyme] can indicate other diseases, but those that are noted as specific to Lyme can mean ONLY Lyme and nothing else

2) Lyme symptoms do remit and relapse, often settling into a ~month long cycle of worsening for a half week or so, tho everyone is a bit different.  If you also have one or more coinfections (that is, other diseases also carried by the Lyme ticks), then the cyclical pattern of Lyme may be obscured -- it was for me.  I was just miserable 24/7/365.  Lyme can also be seasonal, I think -- coming and going at different times of year, on its own little schedule.

3)  All you can do is submit the receipt for the tests to your insurance company and see if they pay.  If they reject, you can probably appeal.  Yeah, it's expensive, but so is being really sick indefinitely.  

My best advice:  find a Lyme specialist (LLMD), and always take copies of all your prior tests to a new doc, even tho some docs react badly to a file-toting patient.  It can help in diagnosis and it can sometimes avoid tests being rerun ($$$).  And keep your own test results file.  You never know when they might help.

LLMDs don't always take insurance, but your insurance company may reimburse at an out-of-network rate.

You could try magnesium supplements for the muscle cramps; any magnesium supplement ending in "-ate" is supposed to be readily absorbed (malate, aspartate, etc).  Lyme bacteria use up magnesium in their reproductive cycle.

Best wishes, let us know how you do.  

[whymelymie]

Thanks very much for your in-depth reply.  I greatly appreciate it.

I have heard of people having more than one + mark next to a band.  Does this mean the disease is in a more severe stage?  I only have one positive sign next to each.  Obviously, a positive is a postive. Kind of like...you can't be a little pregnant. :)  

It is good to know the symptoms can come and go, because that has been the case for me since day one.  At first I would have 4-6 month breaks between symptoms and then it went to 3 months, then 2 months and then 4-6 weks and since March of last year I have had maybe in total one month of mild symptoms and the rest pure torture.  According to my doc he said he doesn't know why I would have remissions so long, but most likely my immune system was able to fight more back then and now it is just too weak to fight (this backed up with the Cd-57 results).

I am definately going to fight the battle with the insurance company becaus in my opinion if a licensed MD in good standing with the state advises a course of treatment (no patter if he is out of network or not), then it should be covered by the insurance!  I am as stubborn a a mule and when I get some strength back I will fight that one to the death.  It should be illegal for any insurance company to deny treatment to a patient in need.  

I will actually be moving to San Diego this summer and ironically my friend there has Lyme.  She sees a very good doctor is a LLMD and I will be getting on her waiting list.  My doc is an alterntive MD, but he is very knowledgeable on Lyme so I am fortunate to have found him in this small town. I keep copies of EVERY test result I have had.  One day I am also going to write a nice long letter to these major medcal center and tell them what I think about how they treated me.  

Thanks about the magnesium info.  I bought some and have started it.  

Did you get cardiac issues with your Lyme, such as palpitations and racing heart?  It freaks me out!  Plus, I have developed pulsating tinnitus which is just horrible.  

Come on atibiotics...do your job!  :)

[whymelymie]

One other question...

Why would the IgM be positive on these bands I mentioned above and not the IgG (except for 41)?  That doesn't make sense to me and the doc coulnd't really answer that one.  I mea I have been dealing with symptoms for over 6 years now.  I though IgG was a sign that the infection was OLD.

[JackieCalifornia]

You ask good questions.  Others here may have some answers too ... but here ya go:

The + to ++++ levels just means the test found more of that band, which in some ways is good because it means your immune system is reacting more strongly.  IGeneX labs has some good (if technical) information on various tests and their history and how they are read vs how they should be read:  www [dot] igenex [dot] com / labtest [dot] htm

One statement at that site says that only 64% of patients with positive IgM [early infection] then show a positive IgG [so-called convalescent period].  The term they use is 'seroconversion', sero- meaning blood.  That could be why you show IgM but not IgG ...

... and it's also possible you got reinfected more recently, so you got a bump up in IgM.  Dunno.

These tests are anything but perfect, but they are all we got.  "Modern" docs obsess over test results, when they ought to put down the papers and look at the patient once in a while, imho.  Sigh.

Anyway, do more +++ mean you have a more severe case?  I'm not medically trained, so I'm just guessing here, but I'd say no, the tests are not that precise, so I wouldn't fixate on sick/sicker/sickest.  It just means you got a bug.

The magnesium may help the heart irregularities, because the heart is after all a muscle.  Be sure to tell your doc about the symptoms and that you are taking Mg.  Also, have you been tested for low thyroid?  That can mess with a lot of things, and Lyme can also mess with thyroid without reference to magnesium issues, or maybe they're tied.  Dunno.

I personally have not had very bad head symptoms, but I do get tinnitus, tho at this point I think it's from some of the supplements I am taking.  Everyone is different in their symptoms .... someone posted here in the last day or so about ice-pick pains in the head, and someone else posted back 'Oh yeah, got those' -- but I personally have never had that at all.  Tricky Lyme.  

So to sum up:  the tests are lousy, the bugs are tricky, and we are caught in the middle but not going down without a fight!

Take care ....

[JackieCalifornia]

PS  the comments about 'ice pick headaches' are in the post just below this one called "Lyme headache and head pains"

[JackieCalifornia]

PPS  and here's another quote from the IGenex website page mentioned above:

"A study by Oksi et al (42), using culture and PCR to confirm Lyme disease, reported that specific IgM to B. burgdorferi is sometimes the only antibody detected in persistent disease. They felt that this data supported the idea that some Lyme patients have a restricted IgM-only response to B. burgdorferi Lyme disease."

Meaning:  some people don't generate IgG (the later marker), just IgM (the earlier marker).  Maybe you're one of them.  You might print out that page from the IGeneX website and mail it to your doc, if he's not the kind to get huffy when you try to educate him.

[JackieCalifornia]

Me again!  I just noticed when I went back to that page on the IGeneX website that it is quoting from an article in the Journal of Spirochetal and Tick-borne Diseases—Volume 5, Spring/Summer 1998.

Wasn't 1998 in the last century or something??  Yeah, but probably still true.

[whymelymie]

Thanks Jackie for all of this information and help!  I am calling the doc at Igenex lab today, because I was told there is a doc there that can explain the test and I am going to ask him about the IgM versus IgA question.

I also watched the documentary last night called "under our skin", which is so enlightening on how this disease has become an epidemic and how people are being severely neglected as a result of the war between docs on each side of the fence and those good ole' insurance companies!  I recommend everyone with Lyme or someone they love who has Lyme check out that movie.  

I hope you continue on a path to wellness.  Thanks for your help!

[JackieCalifornia]

You're quite welcome.  We are all in this mess together!

I also thought 'Under Our Skin' was well done, my only concern being that it is exceptionally gloomy in some ways, which when I was at my worst, really ill and newly diagnosed, it would have driven me to despair instead of giving me hope.  I know documentaries are supposed to document but also send a message, and it was the message that concerned me.  If you have the time and interest, I would strongly recommend the book 'Cure Unknown' by Pamela Weintraub (now in paperback) -- unfortunate title, but very well written, balancing the science, the politics and the medicine of Lyme, laying out the mess that is Lyme, but with a bottom line of "We can deal with this" instead "Oh, what a mess we're in."  Weintraub is a medical journalist (a journalist working in the medical area) whose family got Lyme and the story of their diagnosis and treatment, woven with the story of Lyme and the mess 'modern' medicine has made of diagnosis and treatment, due in large part to the egos of some very powerful people.

[Stepping down off soapbox now.]  Have a lovely week!

[carrie235]

I know about that movie "under our skin".  My friend's daughter had/has lyme and was bedridden and in a wheelchair for 1.5 years.  She is doing much better, but still has residual things like difficulty concentrating, etc.   She was asked to be in this movie actually but they declined because they did not want to relive everything they'd already been through.

My friend told me "not to see the movie" when I told her I had lyme.  Then, one day while on the internet, I saw a trailer for the movie.  I decided that no, I did not need to see this movie at this point in time.  I think it would only fuel my anxiety.

[JackieCalifornia]

I was diagnosed and largely treated at the time I saw the movie, and it really brought me down.  Afterward during a Q&A, I kept looking around the small theater it was shown in, trying to see if people looked upset, but couldn't tell.  

I don't think it's inaccurate, just incomplete.  So I'm with you.

[whymelymie]

Well, the movie sure doesn't pain a pretty picture that is for sure.

I called the doc at Igenex lab and he said that based on the bands I have positive he would not "hang his hat" on being a Lyme diagnosis.  He ssaid I should take 30 days of treatment and re-test.  The bands are weakly positive on my test and 23 is IND.  He said without that he would not say Lyme.  He also said the Cd-57 measures immune function, but is not directly related to Lyme.

I don't know - I am confused and in pain.  I have been dealing with symptoms for over 6 years and just need an answer.  I have seen every specialist in the book and they say nothing is wrong with me.  I KNOW otherwise, but finding the answer is becoming more and more difficult.

I am starting to worry I have some obscure neurological condition that is slowly sneaking up behind me.  :(

[JackieCalifornia]

Hmm, I'm surprised the lab doc would talk to you about your personal results.  But that's okay, as long as you recognize that he is not able to take your physical symptoms into account over the phone.  As much as docs like test results, symptoms are very important too:  it remains a *clinical* diagnosis, based on symptoms and informed by test results, not solely a laboratory diagnosis.  Do treat and retest, and let us know what you get back, okay?  And even then, given how long you've been ill, the test results may not be what the text books say it should be.  Lyme is a variable disease, and it affects everyone differently, and differently in the same person over time.

Were you tested for co-infections, which are other diseases the same ticks sometimes carry?  If your Lyme tests are ultimately decided as negative, you could have something the Lyme tests don't look for.  But in my nonmedical opinion, I wouldn't give up on a Lyme+ diagnosis just yet.  

Hang tough.  You can do it.

[whymelymie]

Yeah, the lab doc at Igenex will discuss your results with you and give you his thoughts.  He is only there on Monday and Tuesday though, but he did call me back when I left a message.  More than I can say for most doctors I have encountered!

I agree that my clinical symptoms are very Lyme like, especially considering I have had ever other test in the book with no findings.  I will get re-tested in 30 days and report back.  So far I am not sure what to think, but I am going to try to keep on this course.  Although, I am starting to have some side effects of teh antibiotics such as stomach pain and naseau.

I do not think I was tested for co-infections I will have to check on that.

Thanks for the feedback and support.  It is a scary time right now!

[ally123582]

wow, I'm surprised too that there is a doctor at IgeneX that you can call and talk to.  Thanks for the information, whymelymie! When you call there who do you ask for or is there a specific extention to go through?  Thanks!

[whymelymie]

Ask for Dr. Harris.  He is there on Monday and Tuesday only.  He can pull up the info if you have your file number, which should be on your Igenex lab report.
I am definately going to get rechecked in 30 days, because the more I think about the fact the doctor who is directly related to Lyme research is telling me he feels it is doubtful the more I quesion my diagnosis.  Not to mention it is two weeks into antibiotics and my symptoms have not changed at all. However, I am also mad because if the bands on this test are not ALL related to Lyme then why the hell are they on there?  Why am I spending $350 out of my own pocket each time for a test that in inconclusive at best?  I know that Lyme is a clinical diagnosis, but it seems a little ridiculous to have a screening test that you have toe rea between the lines to figure out.  
All I know is that there needs to be a better way to figure out what people are suffering from.  I have spent years in pain and fear, but thousands of dollars to be told "We just don't know."  Gee thanks!

[JackieCalifornia]

I'm not medically trained, but I have to say that any discussion you have with an MD who has not examined you and taken a history etc. would have to be at only the most general level.  

Tests are information to use in arriving at a diagnosis, along with a physical exam and history.  To do otherwise would be like taking a drivers' ed class and passing a written test about what road signs mean, but never getting behind the wheel with an examiner to determine if you know how to act on the road.  Going to see the MD for a history and physical (that is, take the road test) is the only way a doc can arrive at any diagnosis/game plan.  Test results are the BEGINNING, not the END, but you seem to have confused those two points in time.

IGeneX is the object of a lot of nastiness by the nonLLMD medical community, and I can't imagine they are giving out diagnoses over the phone.  Sorry, it just doesn't sound right.  These people are not stupid, and phone diagnosis would be ... stupid.  I am glad they were willing to talk with you about your test results, but you cannot jump from that conversation to a believing you have been given a diagnosis by a guy on the phone.  Otherwise none of us would ever have to trek down to an MD's office for a visit.  

Each of us needs to SEE an MD for a physical exam and history and a review of test results to arrive at a diagnosis or a tenative diagnosis and a treatment plan.  I think you misunderstood the nature of the conversation you were having with IGeneX.

You say:  "I am also made because if the bands on this test are not ALL related to Lyme then why the hell are they on there?"  I'd suggest you do some reading on the nature of the IGeneX tests and what the bands are.  Each one has a purpose.  You're "mad"?  Then stop calling them and stop taking their tests.  Problem solved.

You say:  "Why am I spending $350 out of my own pocket each time for a test that is inconclusive at best?"  If medicine were 100% a slam dunk, then we could get diagnosed and treated at McDonald's drive-thru windown.  IGeneX tests are more useful than the ones used by nonLLMDs.  Another suggestion:  don't have the tests done. You've saved $350 right there.  Still sick?  Sorry.  Too bad.  Bottom line:  Everything in life costs.  Why people think medical care, which is cutting edge science esp. in the Lyme area, should be free or cheap is totally beyond my comprehension. Solution:  don't take the test.  Good luck getting well.

You say:  It may "seem a little ridiculous to have a screening test that you have to read between the lines to figure out."  Well, that's science for you.  Always on the frontier.  If it were easy, people wouldn't spend decades and careers trying to figure this stuff out.  Whoever told you that everything in medicine is already known was not telling you the truth.  

====================
And again, to anyone else reading this:  the lab can tell you how they read the test results, but they CANNOT diagnose you.  That's what your doc is for.  

Anyone at a lab kindly enough to discuss the interpretation of the tests is talking to you about the TEST, not about your diagnosis.  You must SEE a doctor for a diagnosis.  

People who claim that a lab has told them they do or don't have X are doing the rest of us a terrible disservice, because making statements like those above will cause labs to stop talking to us, the patients, entirely -- simply to avoid being accused of practicing medicine over the phone.  

Am I cranky on this point?  Yes, I am.  By slinging around statements like those above, whymelymie, you endanger those who strive to help us.  Are there quacks out there?  Are there good docs who make mistakes?  Yes. But that doesn't mean they are all quacks and thieves.  If you don't like IGeneX, go someplace else.  It's a free country.

'Why you, Lymie'?  Why not?  None of us asked to get this miserable disease.  Now please don't screw it up for the rest of us trying to get diagnosed and treated by causing the helpful docs and scientists to stop talking to us.

[whymelymie]

Well, someone has the Lyme Rage today!

Just because I am educated enough to question science and the "experts" should not mean that I think that ALL Lyme diagnosis' are inaccurate.  I am simply asking questions that puzzle me....that is all.  I do not think Igenex is a crappy lab...I think the tests we have for the majority of diseasse are crappy.  Honestly, sometimes I think that McDonald's can diagnose me better than the majority of the doctors I have seen.  I have gone to numerous neurologists, and every other "oligst" you can think of to be told you have early onset Parkinsons, you probably have MS, you have Sjorgen's, you have Celiac Disease, you have Fibromyalgia...so my dear, seeing an MD really means nothing.  If I took all the drugs they wanted me on right now I would be in a coma.  I DO NOT follow blindly the words of another person that simply has an MD behind their name.  I research, I question, I search until the real answers are found.  Yes, medicine is tricky and that is why they call it the "practice" of medicine...but they are not going to practice on me.  If it was $350 that would be fine, but I have spent over $30,000 to find answers to the misery I have endured.

Now, because I seek answers from the lab that ran the test I am a horrible person trying to make it harder for people with Lyme to get treatment?  
You make it sound as if I am trying to sabotage the Lyme community by questioning these things.  That is farthest from the truth.  This disease is horrible.  I have a close friend who has suffered from it as well and I would not wish it on my worst enemy.  However, I think that before we all get pumped full of drugs we should know for SURE what we are treating.  I completely respect my doctor who started me on antibiotics, because at least he is trying unlike the neurologist who just wants me on enough Xanax to stay out of his hair.  

I do not want LLMD's to have to give up their practice.  We have enough medical suppression in this country.  If you knew me at all you would kick yourself for the statement that I am trying to make it harder for Lyme patients to get treatment.  I lost my father, brother and sister to a cancer that a doctor in Texas (Dr. Burzynski) has treated successfully for over 20 years, yet the FDA has not given his treatment approval.  I put together a 50 page report and mailed it to every member of congress begging them to FORCE the FDA to allow this treatment to be fast-track approved and to stop harrassing Dr. B.  So, please do not lecture me on "making it harder" on patients.  The FDA, CDC and other money making organizations are doing just fine with that job on their own!  

I PRAY Lyme is this is the cause of my many, many problems and that one day I will be free of the disease.  However, when you have been misled as many times as I have, been in pain for a long time and grappled with depression as a result you tend to question things and if that makes an ANTI-Lyme activist all of a sudden....well, that means you better get a SPECT scan, because the bugs are in your brain.

[ally123582]

Hi, just curious if you are actually feeling worse since starting the antibiotic?  Have you received any treatment for Lyme prior to now?  
Like you said before, I would definately get retested, especially after taking these antibiotics.  I am still anxiously awaiting my second test.  I had 5 positive bands the first time, but it still didn't consider me positive on paper.  I've been taking antibiotics for seven months, and unfortunately I still feel bad.  But like you, I've had every other test done and I'm "healthy" according to doctors.  Hope you find your answers.  It's a very frustrating process!

[whymelymie]

Hi Ally,

I don't feel any worse or any better.  Tomorrow will be my third injection, plus I have been taking oral antibiotics for a little over two weeks now.  I am going to finish my 30 days cycle and re-test to see what happens.  

Sorry you are still feeling bad after so many months on antibitiocs.  I did read on the Jemesk website (he is a VERY Lyme literate doc) that if you have not had any herxing symptoms by week three of antibiotic treatment then an alternative diagnosis should be pursued.  Something to consider if you have not had any herxing symptoms and your test is still inconclusive round two.  

My neurologist will be seeing me on April 1st and I know he will still say I am healthy....even though since the last time I have seen him the myoclonus jerks have become more frequent and visible during the day now. Used to be only at night...so I pray I am jerkng like a crack addict when I walk into his office, so he can see I am not making this stuff up. We all know that the symptoms we have are not that of a normal, healthy person!

I hope you also find answers - hang in there!

[JackieCalifornia]

LLMDs usually interpret the standard (ELISA, Western blot) tests differently than nonLLMDs do.  What a nonLLMD considers a negative test might be a positive in the view of an LLMD.  Finding an LLMD might make a big difference for you.

In the meantime, if you go to truthaboutlymedisease [dot] com and search for "igenex western blot breakdown by band", you will find a listing of each band and how an LLMD might interpret them.

Also, you might consider trying magnesium supplements to help the muscle spasms.  Any magnesium ending in "-ate" is supposed to be most absorbable -- malate, orotate, aspartate, and others.  Lyme bacteria use up magnesium, which is needed by the body to keep muscles performing in concert with each other, including not only arms and legs and eyelids and other body parts, but also the heart muscle.  Consider checking with your doc before trying this, but it worked for me and others.  I was warned by a nonLLMD that too much magnesium could damage my kidneys, but others have told me that I would get diarrhea before that happened.  So far, so good, after a year+.  Also helps general mental and emotional outlook. fwiw.

[carrie235]

Hi Jackie:

I sent to that website but I can't see where to search for the breakdown by band.  Can you give me a little more instruction on that please :)  I would like to see that.

Thanks.

[carrie235]

Jackie:

I found it.  I just goggled the words and found it.  I also went to the Igenex site and noticed that that CD-57? test is new.  I've seen people talking about it but I don't think I've had that test.  I hope that my LLMD tested me for that but I'll find out the results of the remainder of my bloodwork and my Brain Spect Image Scan next Wednesday.

Can't Wait!

[wonko]

I think all that JackieC was getting at is that a doctor from a testing center can't get a "full picture" of your health.  So while they may have insights into the testing results, they don't know your patient history, symptoms, or other test results.  I don't think there was any intentional criticism between posts, we're just concerned about each other.

Carrie, I don't know much about CD57 but I do know that it is not a meaningful test for all Lyme patients.  In some cases, the number starts very low when the patient is sick and slowly rises as they get better.  In others, there is no correlation between CD57 and overall state of health.  I'm in the latter, at my worst I had a normal CD57, so my LLMD doesn't use that test to monitor my condition.  So while it can be a piece of the puzzle, it is not definitive, or so is my understanding.