I have a friend

Discussion in 'Lyme Disease Archives' started by stick2013, Jul 10, 2009.

  1. stick2013

    stick2013 Member

    She has been sick for almost 2 years now, and at one point almost bedridden. She was told she did NOT have lyme, had a couple of test, 1 positive, 1 negative. She found a Lyme Dr out of state, and he put her on many different Antibiotics in the past year. Not much seems to be helping, although she is walking better, NOT great, but better. Her biggest issue is memory. Basically, she doesn't have much as far as memory is concerned. Also she has fatigue.....She has actually had to quit her job, a year ago.

    She convinced her Lyme doc, that she should be on IV antibiotics. He gave in and put her on them, with very little improvement if any. She has only been on IV about a month.

    I convinced her to test with Igenex, and she just got her report back, and called me to see what it meant.

    Her results as far as bands go are as follows.....

    POSITIVE BANDS........31,34,39,41,25,58

    NEGATIVE BANDS.......45,22,18,28,30,66,73,93

    Can anyone help with explaining exactly what is going on, and possibly what coninfections she might have????????

    Thanks much for any and all help....
  2. victoria

    victoria New Member

    Does she have an experienced Lyme literate MD who has had experience in teasing out what a pt likely has (likely she has more than lyme alone)? Did she have herxes? That is a sure sign of lyme and other stealth bacterial infections.

    It sounds like something was being killed as she is doing somewhat better, but may have not gotten the right meds. IMHO, from what watching my son's experiences with abx, she may have some other type(s) of stealth infection, so the abx she is taking may not be the right one. The tests for other stealth pathogens are even more unreliable than the WB for Lyme

    Has the doctor tried different ones? There is a lot of overlap in what abx kill, yet there may a difference in response depending on what variation of lyme or bartonella etc one has. Also certain other possible co-infections need other types of drugs (babesiosis is a parasite, similar to malaria - mepron with artemesinin is given).

    Below's a good explanation that I picked up off dailystrength.org/c/Lyme_Disease/forum/6658891-igg-igm-and-cd57

    -----------------

    Here is my understanding in laymans terms.

    IgM is typically of an active infection.
    IgG is typically of an older response. (Shows past exposure)

    Here's the break down of what the bands mean:
    (FYI -Borrellia and Bb is the name of the lyme bacteria)
    9 cross-reactive for Borrellia
    12 specific for Bb
    18 unknown
    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
    31 outer surface protein A (OspA), specific for Bb
    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 Bb infection and is specific for all Borrellia
    45 cross-reactive for all Borellia (sometimes people with Lyme who have this
    band positive also have the co-infection Ehrlichiosis)
    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

    Band 41 is often the first to show.

    Cross reactive means it could still posably be something else. (I'm not sure what those are but syphillis is one)

    31 and 34 will show positive if you have had the vaccine but if you have not and it is positive....

    The CDC requires more bands to be positive than many those who treat lyme. The CDC knows that their overly stringent guidelines leave out many patients as statistics who do have lyme disease) Many doctors do not look at what bands are positive. If you have IgM bands that are positive and are specific to only Bb then you need to be treated for lyme (aggresively).

    If you are IgG positive many feel that perhaps your immune system was able to respond and is doing (has done) a great job in protecting you from falling ill. Be aware that you could still have cyst forms etc... and if you have or later get symptoms you need to be evaluated.

    Here's a glitch though - there are now over 100 different strains of Bb and not all of the testing lines up well for all strains so the test is limited in only some of the strains.


    CD57 is a measure of a Natural Killer (NK)cell. It is reported by 2 numbers. the first is % cd-8/cd57 and is normal between 2 and 17. I'm not conversant on this one.

    The second is the Abs Cd8-Cd57 and this is the one most people refer to. the normal range for this is 60 to 360. That does not mean that 62 is good. When these numbers are down, your immune system will not be able to fight of the Bb. It will definitely need help. So many doctors use this as a guide to decide when one can stop taking antibiotics. Higher is better. My daughters doctor would like to see this number be in the 200's.
    ----------------
    (& a note from V: my son's doctor doesn't trust these last 2, tho many other LLMDs do.)

    Hope that helps....
    all the best
    Victoria


  3. stick2013

    stick2013 Member

    I'm not sure if her Doc, is lyme literate or not. She has tried about 5 different oral antibiotics. One at a time. Never more than one at a time. Now she is on an IV antibiotic. Only one, and not taking any oral. I don't think she has ever had herxes, her condition just sort of got worse and worse. She is SLIGHTLY better, but a far way from being her old self.

    So, I guess my remaining questions are...

    Does she has Lyme disease as far as these bands are concerned????

    What co infections might she have??????

    Sorry, if I sound so stupid, but this is all just WAY over my head......

    Thanks again....
  4. victoria

    victoria New Member

    The CDC criteria for a positive WB, which has very strict requirements because these results are used for tracking purposes (and keeping in mind despite test results, it still should be a clinical diagnosis) are as follows:

    * For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.
    * For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.

    Your friend's test showed:

    POSITIVE BANDS........31,34,39,41,25,58
    NEGATIVE BANDS.......45,22,18,28,30,66,73,93

    According to this, she may actually be be CDC positive - if she is, which is actually not very common, her case should be reported to the CDC for tracking and follow-up -- you didn't say what results were from the IgM and which were from IgG.

    The WB won't tell anything about what co-infections are there, and from what my son's LLMD said, they're less than 50% reliable anyway (even tho we had my son tested for all sorts - sure enough,nothing showed, tho his LLMD was able to figure it out from his symptoms and how he reacted). My son's doc and most others use more than 1 abx at a time, at least orally -- not sure about IV tho. Flagyl is also important to use regularly to break up cycst formation.

    She may want to consult another doctor... and also start reading. There's a lot of good links up above in the first 'sticky' to start with. If she wants to find another doctor, a good place to go is:
    flash.lymenet.org
    It's where I found my son's doctor.

    good luck to her...

    all the best,
    Victoria





    [This Message was Edited on 07/10/2009]
  5. Nanie46

    Nanie46 Moderator

    Hi,

    It does look like lyme. She has lyme specific bands present.

    Her Dr does not sound like an ILADS trained LLMD. LLMD's use long term combination antibiotic therapy, and change the combos from time to time to attack the bacteria from different angles.

    It is hard to say what coinfecitons she might have, but you/she should read this paper by a lyme expert and look at the symptom list and the coinfection and treatment information.....read the entire paper.....very important....

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Coinfection testing can be done but it is not foolproof. LLMD's often treat patients based on their symptoms, not just the test result.

    A good LLMD knows that if a patient is not getting better there are various reasons such as the right combos of antibiotics have not been used and in high enough dosages, one or more untreated coinfections are present, other issues have not been addressed such as hormones including adrenal, etc.

    My LLMD told me that many people think that IV antibiotics are the best, but in reality those antibiotics do not go inside the cell where some other orals do...to kill the bacteria.

    The bacteria can change into other forms such as a cell wall deficient form that is very hard to treat.

    LLMD's know what meds to use to attack the different forms.

    I would advise you/her to go to lymenet.org....click on flash discussion...sign up for free like you did here......click on the Medical Questions board and create a new post asking some questions there.......you will get many more responses from people with alot of experience.

    She can also create a post on the Seeking a Doctor board on lymenet.org......asking for a LLMD in her state.

    It does not sound like she is getting treatment by a good LLMD.