Help reading Immunodeficiency Panel test results

Discussion in 'Fibromyalgia Main Forum' started by happygranny, Aug 19, 2010.

  1. happygranny

    happygranny New Member


    although I am not new to Immunesupport which I joined in 2003 2 years after I first started down this road, it has been a while since I have been here as I have been focused on a clinical Lyme disease diagnosis since 2005. I have been on ABX most of the time and though have had times of feeling better, for the most part I am worse, especially with fatigue and pain.
    Saw a new Internist last week and for the first time in 9 years, felt listened to. He helped me udnerstand a lot about what is going on with me and is convinced I have Immune deficiency or a compromised Immune System. Those are not necessarily his words, but I also have trouble remembering things. - should have taped the appt.

    He ordered a lot of tests, including bone scan. Today I got the 1st of the tests back and it is called Immunophenotyping by Flow Cytometry, with another line saying Immunodeficiency Panel.

    I tried to figure out what the results mean, and maybe in here Canada test results are shown differently, but I can't find and test results that are laid out the way mine are.

    I hope someone can help me follow what this all means. I will be seeing this new doctor again Sept 22, however would appreciate knowing the results sooner than that.

    This is some of what is listed:

    CD3+CD4+Cells Absolut H 1.38 0.41-1.33 (Reference Range)giga/L
    CD3-CD56+ Cells L 0.02 0.05-0.75 " Fraction
    CD3-CD56+Cells Absolut L 0.05 0.08-0.75 " gig/L

    Other results are not a H or L but right on the edge of the Normal Reference Range.

    Can someone help me understand this or point me in the right direction?

    thanks a lot,
    Happygranny[This Message was Edited on 08/19/2010]
  2. heapsreal

    heapsreal New Member

    it looks like u had a lymphocyte subset test done, which i get regularly. if its showing abnormalities then thats consistant with cfs/me, theres no exact reading if u know what i mean, just abnormalities. Elevated lymph usually means body is fighting some sort of viral infection, if its low, same thing but immune system tiring out(herb astragalus, immunovir etc good).

    I know elevated cd8 lymphs (cd4 i think also???)are consistant with herpes infections like ebv, cmv etc but wait 3 months and get another test, if its still abnormal then yes chronic ongoing infections and maybe a good candidate for antivirals. Also get tested for all the herpes infections as well(ebv,cmv,hhv6) although u will probably get positive for past infections but with elevated lymph subsets then this could mean they are reactivating, so need both tests hand in hand to work it out, guestimate.

    A natural killer(NK) cell function test would also be good as poor function is consistent with cfs/me which makes us prone to infections. dont get this mixed up with NK cell numbers, function is what u are after. To improve nk function look into immunovir and cycloferon. nk functionappears to be at the heart of cfs so fixxing this maybe the secret.

    Like i mentioned earlier, wait 3 months and retest, then ask doc to trial antivirals, they are expensive and can take awhile before u notice a difference, u should also see lymph test start to normalise, although maybe not return to normal. My preference for antivirals(AV's) is famvir as it seems to have a broad range of action against a number of infection and also possibly retroviruses and has help people with hepatitis. Its also quite safe and not toxic like some av's like valcyte. I have heard from others how it has helped them with hhv6 virus.

    My experience with famvir was that after 3 months i started to feel better but wasnt sure as this is an up and down illness, so i kept going. After 6 months i knew the av's were helping and blood tests were showing this(lymph subsets). It wasnt a cure but gee it helped and worth the expense. I did however change to generic valtrex for 6 months and went backwards, i did this as it was cheaper,mmm. now back on famvir and slowly improving again.

    U might struggle finding a doctor to help u out, but the doctor u have sounds ok if he's testing lymph subsets, so keep pushing for more tests and keep copies because if he wont treat u with antivirals u can take your results to a doc who does.

    hope this helps, anymore question then throw my way and see if i can answer them for you.

    good luck!!!
  3. happygranny

    happygranny New Member

    Thanks Heapsreal, I appreciate your response, and yes I do have more questions as this is all so new to me, so my questions might seem silly but here goes:
    Are "Elevated lymphs" what I had with the elevated CD3-CD56+Cells Absolute as well as the other one without the "Absolute"? Those results are about Lymphocytes?. I guess that would mean white blood cells are high which means a possible viral infection like you said.
    My CD8 result was shown as CD3+CD8+Cells as well as CD3+CD8+Cells Absolut. (I don't know what the difference is between Absolute and no Absolute), They both tested in the normal range, however one that was CD3+CD4+Cells absolute was High as 1.38 when norm is .41 - 1.33. Is this the " (cd4 i think also???)" that you referred to as being a possible herpes infection? I get lots of cold sores and canker sores but no known other herpes infection.
    When you talked about the NK cell function test, were you suggesting I should ask for that test?
    It has taken 9 years for a doctor to take a serious look at my Immune system, and we are still awaiting other blood tests, so maybe there is an NK function test taken and I am just awaiting the results. Like I said, this is so new to me.

    It is over-whelming to me that I could actually start a medication (antivirals) and maybe start feeling better. I couldn't imagine that possibility the last few years as I started to give up finding answers.

    The doctor who ordered these tests seems to genuinely want to help me, so if I need to ask for more tests, as you are suggesting in 3 months time, I feel confidant that he will order them. Being in Canada I can only have the tests if ordered by a doctor. At the same time I don't have to pay for these tests so that is a relief.

    I don't see him again til Sept 22 and by then I should have more test results back as I get them from my GP. I would appreciate your input again when I post the next set of results.

    In the mean time I have to get these brain cells oiled up and working as I climb this learning curve.

    Much thanks,

  4. heapsreal

    heapsreal New Member

    Im from australia so tests may read differently. Now dont take this a gospel but i think lymphocyte subsets are really only divided between cd4 and cd8, all the other subsets are a breakdown of either cd4 or cd8, so i would say that cd3+cd8 are just cd8 although when i get my results cd3 are seperate, so cd3 is a down stream part of cd8 if that makes sense. cd56 is your natural killer cells but thats just their numbers not their function but being elevated shows they are trying to mount some kind of defense against an infection.

    So what you have are total lymphocytes which are broken down into cd4 and cd8, these are then broken down into cd3, cd56 etc etc. Like i said dont take this as gospel but throw what i have said at your doc, maybe someone else reading this could correct me if im wrong as well.

    Yes i suggest u get a natural killer cell function test, this might be the reason why your count is high and not clearing infections. My nk count is in low range of normal and function is poor, so we are all a little different but seem to be lacking in this department.

    As for alot of cold sores etc this can be because of a poor immune system. Most people of adult age have had other herpes infections, these being ebv(epstein barr virus aka mono aka glandular fever) cmv(cytomegular?virus) plus a few others. for some, these infections kick started cfs off, like me. for others they may have had them in the past and got sick or not got sick at all from them and a healthy immune system keeps them supressed but a poor immune system cant keep them down so these viruses reactivate making us feel awful. Other immune comprimised conditions like hiv and people on chemotherapy for cancer have these viruses reactivate, so its possible this happens to cfsers.

    There are also a number of bacterial infections that are supressed by a healthy immune system and normally of no bother unless immuno comprimised. One being mycoplasma, another being chlamydia pnuemonia(not sexually transmiited) and these could have occurred and been brushed of as a simple chest infection etc along time ago and now because your immune sytem is crappy they have reactivated and taken over your body. They can be hard to pick up on tests but even if negative its worth trying an antibiotic like doxcycline for 6 months and see how u go. There are many other types of bacterial infections as well. And its possible to have bacterial and viral infections going off at the same time.

    So there are ways to improve NK function and help lower viral and bacterial loads off your immune system and start to feel better. Also treating symptoms does help like sleep as this helps in your recovery. If sleep is crappy dont be shy in taking sleep meds, poor sleep helps in wrecking our immune systems.

    I think ive answered everything. there is some good info in this forum as well, and u can send personal messages to others on there too. Theres a lady on there called daffodil, she has been very sick for quite awhile and i think she is from canada, she would be very helpful about what other tests are available in canada and docs etc. Lots of info on viral stuff etc and u will see me on there a fair bit too, yeah!!

    Hope this helps happygranny,