i have a question re. lyme

Discussion in 'Fibromyalgia Main Forum' started by joanierav, Mar 24, 2011.

  1. joanierav

    joanierav Member

    when you get tested for lyme, are they testing for bartonella, erlichia etc , or is it three separate blood tests? i was tested for lyme numerous times , all different labatories. and was told i was negative, but no doctor mentioned bartonella , erlicchia or the others. thank you so much. joanie
  2. karynwolfe

    karynwolfe New Member

    Hi Joan.

    No, testing for Lyme is only testing for the bacteria that causes Lyme disease, borrelia burdorferi.

    The best test for Lyme is IGeneX. See their website. You call them and request the test kit, then get your doctor to sign off on it. They're the only ones who showed up anything for me. You can get the results of all your other tests and look at them yourself--sometimes there are more bands positive than they tell you, you're just not "CDC positive" and most docs will only treat you if you're CDC positive. However, you can still have Lyme disease and be CDC negative! The CDC admits themselves that the tests are atrocious, and that the number of cases may be far greater than expected because of this failure to idenitify the infection.

    My regular western blot only turned up one band--band 41--while IGeneX turned up five bands. And even those were weak bands, because I'm so severely ill. These infections blunt our immune response. But still: It was THERE. Even in the face of negative PCRs and IgM/IgG testing, it showed up eventually! :(

    IGeneX also does a new test for Bartonella called the FISH test, which is available for babesiosis as well, and they also test for ehrlichia, and.. something else? It's all on their site.

    Quest and Labcorp do testing on these types of things but their reliability is questionable. I've been tested for bartonella several times (not with IGeneX yet) and it always comes back negative; that particular infection shows up less than 20% of the time, and the best lab that could find it (Galaxy) is on a temporary hiatus from doing testing. :( I find this to be horrible because bartonella is one of the fastest growing infectious diseases. It's recently been found that even perfectly healthy people can become chronically ill from this infection, it can trigger diseases like RA and MS, and in the past several years we've discovered over 20 different subspecies--some of them aren't even named yet! Scary stuff, because unless our doctors are constantly going to seminars to keep up-to-date, they won't be able to keep up with all this emerging research, however crucial to our health it might be.

  3. Nanie46

    Nanie46 Moderator


    It is very important for you to know that a negative Lyme test does NOT rule out lyme.

    That is a huge mistake that 99% of Dr's make. Most do not even know what those individual band results mean and don't know about species specific bands.

    Dr's look to see if the the result says CDC Negative or Positive. If it says CDC Negative, they tell you that you don't have lyme......which can leave many, many people suffering forever.

    My western blot from LabCorp showed only band 41, and was CDC Negative.

    My western blot from Igenex showed several Indeterminite and Positive bands, yet it was still read as officially CDC Negative...only because of some crazy CDC criteria that causes almost everyone to be excluded.

    Most labs only test for 3 IgM bands and 10 IgG bands, excluding some very important lyme specific bands.

    Igenex tests for 10 IgM bands and 10 IgG bands.

    Important clues can be found from looking at the individual band results, instead of the "CDC Negative" result.

    It is also very important for you to know that diagnoses like Lyme ,Bartonella,Babesia, Ehrlichia, etc are Clinical Diagnoses......they should be made based on History, Symptoms, Exam and Labs................NOT just labs.

    There is a saying that goes....."Treat the Patient, not the Lab test".

    Many Dr's ignore so many symptoms and totally rely on an unreliable test.

    I did test positive for Bartonella.

    The fact is that most Dr's know nothing about Lyme, Bartonella, Babesia, etc.

    They often try to say that these infections are rare and easy to treat......wrong.

    There is so much information available to read and learn about these infections.

    Here is some:


    In the following paper, western blot info is on p 7, symptom list is on p 9-11, and Coinfection info about Bartonella, Babesia etc is on p 22-27:





    Different people can have different symptoms. There are some symptoms that are pretty common among most people like fatigue, sleep problems, pain, brain fog and thinking problems.

    The best advice I can give you is to read and learn for yourself, not relying on your Dr....get an Igenex western blot IgG and IgM, test #188 and #189.....and get a good eval by a Lyme literate MD who will evaluate you for coinfections also.

    A great site is www.lymenet.org.............click on flash discussion........sign up for free......click on "Medical Questions Board"............read posts and post your questions about symptoms, lyme, bartonella, babesia, etc

    Then go to lymenet's "Seeking a Doctor" Board and find a Lyme literate MD (LLMD) in your area.

    I would be glad to help you in any way that I can.

    [This Message was Edited on 03/25/2011]
  4. victoria

    victoria New Member

    I can only repeat, basically, that the tests' reliability for the other tick born & stealth infections are worse than for Lyme - that's where an experienced doctor really comes in handy.

    let us know what you decide to do? and/or find out...

    all the best,
  5. Nanie46

    Nanie46 Moderator


    Wanted to pass along this link to "Reasons Why a Seronegative Test Result Might Occur"...

  6. joanierav

    joanierav Member

    so much for the prompt replys. i went to a llmd and took all my tests from over the years , even the igenex one, and then he read them all , and promptly said no lyme. but didnt mention the other infections. thats why i asked the question," can they tell from just the lyme tests if you have the other infections." anyway i think he gave me some more tests, and repeated "no lyme"

    so what do you do if you receive a "no lyme" from a lldd? i got his name from the lldd site , from the illads boards. (misspell)

    over the yrs my blood tests showed igenex bands: lyme igg western blot 39, 41, 58. but they were equivocal. my lyme igm western blot bands were 39, 58, 66, and 93 and they were equivocal also. with the exception of 39 and that was only one plus meaning "low". these were from different doctors over the years. and one of them 8 yrs ago did treat me for lyme with vicillin or bicillin ,( dont remember now) injections weekly, for 5 months. after 3 months i did get a bit better. but then after 6 months, was taken to the er with terrible stomack pains. and they immediately took me off the injections.

    the most recent lldd just took an mri of the brain. i dont think there was any blood work done at that time. and he said no lyme.

    thanks again for any help or ideas you may have. one part of me thinks i may have lyme, but the other part doesnt want to subject my stomack to all those antibiotics. joanie
  7. inprog

    inprog Member

    Hi joanie,
    My Lyme doctor pre-treated with Doxyclycine, I think, for a couple of weeks and then did the Lyme Igenex test. That is because I have Lyme I suspected for over 20 years and from my symtoms he felt I had Lyme and no antibodies would appeared unless the organism was stirred up a bit and giving it some Doxy would shake it up a bit. Maybe someone could comment on this. Kind of like stirring up the bees to see if there are any really there as evidence.
    My brain function is not as good as yours for those of you that replied. You have said most of it better. I am using the Woods protocol (ladybarbara.net) because it is simple and could never afford IV's even though my Lyme doctor said if I had insurance I could qualify for Lyme IV treatment. Maybe a blessing for some since I am so chemically sensitive now.
  8. Nanie46

    Nanie46 Moderator


    I hope the LLMD did more than look at your test results. A diagnosis should be made based on your health history, symptoms, exam and labs.

    Take a look at the western blot info on page 7 of this paper:


    You will see that Dr B says that you should see band 41 and at least one species specific band.

    In his opinion, you have 2 species specific bands......39 and 93.

    And take a look at this western blot info from another LLMD:


    You will see that in his opinion, you have 4 significant bands....39, 58, 66 and 93.

    My LLMD says that an IND (Indeterminate) result is like a fingerprint....it might be light, but it is still the same fingerprint.

    A (+) result is still positive even if it isn't +++.

    Not all LLMD's are created equal. Some don't even test for or treat coinfections.

    Follow your instincts and keep investigating.

    Get another opinion from another LLMD if you can. Make sure you educate yourself well about lyme and coinfections like Bartonella, Babesia, Ehrlichia, etc. through ILADS and the sites provided.

    Go to lymenet.org and read, read, read on the Medical Questions board. Ask questions.

    Do you mind sharing the history of your illness and your symptoms?

    I sure wish you the best in finding the truth about your illness and pray that you recover.

  9. Nanie46

    Nanie46 Moderator


    The pre-treat is called an antibiotic challenge. It can help the antibodies to show up sometimes.

    Remember that there are many reasons why a person does not show positive antibodies ...see the link above about Reasons for a Seronegative Lyme test.

    Just one reason is that a person is just too sick and isn't making the antibodies anymore...there are lots of reasons.

    This is why Lyme should NEVER be ruled out based just on lab tests.
  10. karynwolfe

    karynwolfe New Member

    --> "lyme igg western blot 39, 41, 58. but they were equivocal."

    Today the tests say "indeterminate." This just means, a weak positive.

    --> "my lyme igm western blot bands were 39, 58, 66, and 93 and they were equivocal also."

    Again, weak positive.

    --> "with the exception of 39 and that was only one plus meaning "low". "

    A plus means positive. It is VERY VERY SCARY that band 39 showed up with a PLUS, because that is THE most specific Lyme band there is! Some of the others can cross react, but band 39 can ONLY react to the DNA of the Lyme bacteria! And it was an IgM band, which means it was currently replicating, to initiate that IgM response...

    This is very troubling. Now I'm worried for you. Joanie if I remember right you are immunodeficient? That coudl explain your weak results. I would recommend a differet LLMD, I can't believe anyone would see all of those light reactions and still not think something was going on. Please go to LymeNet and try to find a different doctor.

    This disease can be fatal, it doesn't mess around. There are innumerable types of antibiotics that can be taken, certainly you will be able to find one that can help without hurting your stomach.

  11. joanierav

    joanierav Member

    nanie. , karyn, and all: as far as my history goes. its quite simple. i first started with profound , unrelenting fatigue. it was a slow progress., for about a year, with all the cfs symtoms. i was lucky i was diagnosed after about 1 yr of this suffering . i was then treated with a cfs doctor , and she helped me a lot. but not enough for me to go back to work. i went on disability after being sick for 2 yrs.

    ive been sick for 18 yrs. shortly after my diagnosis i developed hypothyroid. i take synthroid , and have it checked every yr. amazingly ive always been on the same dose all this time. then i developed asthma. ive got white blood cell problems , ive been under the care of an infectious disease doc for lymphocytopenia and a hemotologist for hypogammaglobulenemia. i get gamma globulin iv infusions once a month. i was diagnosed with these problems about 12 yrs ago . the iv infusions dont make be feel any better, they just keep the constant infections that i was getting at bey. and they do a good job of it. before the infusions i was in the hospital every yr with respitory / pneumonia type infections.

    for all these yrs, ive always been tested for lyme. any doctor i was with at the time , always checked for it. but they always said no lyme. until i moved and found a doctor that was a lyme specialist, and he agreed to treat me even tho most of my tests were equivocal. surprisingly, after 3 months i did start to see a difference , and continued the weekly injections for another 2 months. thats when i developed severe stomack problems that put me in the er. and was taken off the injections. at that point i believe (since ive been getting educated about this lyme) my antibiotic should have been changed to something else. for all those 5 months , i was on the same antibiotic (bicyllin injections) and nothing else for the lyme. another lyme specialist before this, treated me with several months of tetracycline. i also think i noticed a difference with that. but hard to remember. i only noticed a difference in the beginning , but after several months i started to feel bad again, so i stopped the antibiotic.

    its been only since coming to this site that i read the words literate lyme disease doctor. and found one on this site. and took all my tests over the many years to him, and he just gave me an mri of the brain. and some more blood work (i wasnt sure he did this, but looking it up in my records i see that he did) for ebv and mycoplasmas and some other stuff. he seemed very good, even made me get up in the middle of a night sweat, to go for blood work. (i live near a hospital) some of my blood tests did show infection, but he said they were not new infections. as you know there is a way for them to tell. so i am told.

    i take blood presure meds for high bp. but its been controlled. i take valtrex for suppresive therapy for oral herpes symplex, for yrs. and i take sleeping meds, and reflux meds. and i take ultracet for the fibro pain. my worst symtoms are fatigue, insomnia, ibs, fibro pain, night sweats, etc, etc. i dont even count the asthma, or thyroid. i also have some nerve damage, diagnosed by a neurologist, in my legs, and arm.

    i hope all this makes sense, as im really feeling sick today, and just tried to skim over things, without rambling too much. you are all so nice and caring on this site, and i love you all.

    many thanks for all your responses. joanie

  12. joanierav

    joanierav Member

    and i did.

    just wanted to mention that ive gotten progressively worse over the years. never got a good honeymoon period so to speak. not even any good days anymore. i am not bedbound. but only get out (if im lucky) maybe once or twice a wk. i have someone clean the house, and lately cannot shop for food anymore. son has been doing that. the fatigue is indescrible. i feel sick all over, all the time. im really getting worried.

    hugs, joanie
  13. Nanie46

    Nanie46 Moderator


    Thanks for all that you wrote.

    Your symptoms sound like Lyme and Babesia at the very least.

    Please do not give up.

    Can you go to lymenet.org's "Seeking a Doctor" Board and find a new Lyme Literate MD?


    The fact that you started to improve on antibiotics before is very important.

    You must advocate for yourself! No one else will do it for you. Please.

    Many times the blood tests just cannot detect these chronic infections for many reasons.

    I urge you to move in the direction of hope.

    Find a new LLMD and get a complete new eval for lyme, babesia, bartonella, ehrlichia and other tick-borne infections.

    That may be the beginning of a new chapter, where you get your life back.

    I am Dekrator48 on lymenet.org. I sure hope to see you there on the "Medical Questions" Board. There are tons of intelligent and helpful people there.

    Big Hugs!
  14. karynwolfe

    karynwolfe New Member

    "at that point i believe (since ive been getting educated about this lyme) my antibiotic should have been changed to something else"


    "i only noticed a difference in the beginning , but after several months i started to feel bad again, so i stopped the antibiotic."

    This happens a lot with us. The cause is that the bacteria have three forms, and if you stay on one type of antibiotic too long the bugs just change forms so it can't get them. Scary but it's part of what makes them so evasive, so good at staying hidden (such as from the immune system, and on tests). Also, often after you get levels of one infection down (because most of us have more than one, at least), it allows the others to come to the surface. I didn't know I had bartonella, for example, until four month into my treatment when its symptoms were able to show! The coinfections cause so. much. fatigue.

    I completely agree with Nanie, I think you've come to this point for a reason, perhaps this is the breaking point and something telling you that you have to go at it now before it does something worse to you.

    I know the feeling of getting worse and just not knowing why... Luckily I found out. I think you may have, too, more likely than not. We wouldn't get your hopes up for nothing, we all know here how devastating it is to think you've found "the" answer and just crumble again... So many people on here, on ProHealth, have found they have Lyme disease and are getting their lives back. Your story has far too many pieces to be coincidence.

    Hang in there, joanie. One step at a time, you can get through this. :)


    [This Message was Edited on 04/06/2011]
  15. inprog

    inprog Member

    Well, I am in deep appreciation for the sharings of all of you here. This is my "save this thread" to give closer scrutany. Well, at least today as you all write, your brains are in good shape.
  16. Nanie46

    Nanie46 Moderator

    Thanks, and I hope you find some answers that lead you to recover from your illness.
  17. inprog

    inprog Member

    Now that the board works way better, I can actually search my name and find my posts. I could not find this one to save and now I have. Thanks, again.
  18. Nanie46

    Nanie46 Moderator

    You're welcome!

    If I can ever help you or provide more info, just let me know.

  19. Mikie

    Mikie Moderator

    Docs often give ABX prior to testing because they do seem to stir up the bacteria to make them more active and, hopefully, stir up some antibodies too. I have chronic stealth mycoplasma infection. Mycoplasmas are also cell-wall deficient bacteria which can change forms and hide out in the body, like Lyme. Bacteria and viruses are very, very smart and wily in the body. People with chronic infections often produce excess fibrin in the blood. The fibrin traps platelets which form little clots in which the bacteria hide out.

    HEMEX Labs has a panel of blood tests for the fibrin. My doc had me do heparin injections empirically to bypass the tests which my HMO wouldn't do. Once the bacteria are exposed, after the fibrin dissolves, the immune system may go into overdirve to kill them. The danger is that the immune system recognizes not only the bacteria, but also bits of our own DNA from bits of the burst red blood cells clinging to the bacteria. People with CFIDS/ME and Lyme often pick up auto-immune illnesses too. I had the worst Herx-like reactions to the heparin, even worse than those produced by taking Doxycycline.

    So, if the body is no longer producing antibodies and/or the bacteria are successfully hiding out, lab tests can produce false negs. Also, if the blood is not carefully handled, PCR DNA tests can produce false negs. I don't know about Lyme but the half-life of mycoplasma DNA is only 24 hrs.

    I agree that lab tests alone should not be used to make a diagnosis. Docs can make tentative diagnoses and treat empirically. If ABX, and other treatments, cause an improvement, it is evidence of disease. Everything my docs and I have done has been done empirically, an old, tried-and-true way to practice medicine.

    Best of luck to you. Heck, if we had waited for lab results to diagnose and treat what ails me, I'd still be bedridden and on morphine.

    Love, Mikie