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Is low white blood count (leukopenia) really exclusionary for CFS?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by fresh_eyes, Jan 20, 2010.

  1. fresh_eyes

    fresh_eyes happy to be here

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    Hi folks. I wanted to bounce this off y'all. Over the years my white count has been declining, and now it's officially gone over from low-normal to low, aka leukopenia (3.9). In the medscape workup for cfs http://emedicine.medscape.com/article/235980-diagnosis, they specifically mention that:

    Do others here really have a normal white count? For those of you who see CFS specialists, would they agree with the generalization above?

    (FYI, I'm low-normal in absolute numbers on all WBC types, and my percentages of neutrophils is low-normal, leukocytes high-normal. Also FYI, I don't have a doctor at present (no insurance) so I ordered these tests myself.)

    Thanks for any input.
  2. Jenny

    Jenny Senior Member

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    Hi fresh

    My lymphocyte count has been around 1.3 for years. (Should be at least 1.5) My ME/Lyme doc sees this as consistent with Lyme and other bacterial and viral infections. Other types of WBCs are normal and total WBC count is low normal at 4.08.

    This is the only thing in standard blood tests that always shows up as abnormal.

    Jenny
  3. jackie

    jackie Senior Member

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    Hi there Fresh-Eyes:Retro smile: ! I'm lucky that I have a CFS spec. and a new, regular Primary care doc (finally!) so what I do (because I'm only allowed one visit every 3 months with the Specialist) is keep a little notebook that I add Q's (over the months) to bring in to my appointment.

    I've just added your WBC/CFS question (the thread title and post#, so I won't forget) and I'm sure I'll get some info (unfortunately not until Feb. 11, though!)

    In the meantime, I'll dig out my last labs...and post those numbers (I'm usually on the "low" end..but never "flagged" by the lab). Perhaps in your case there are other benign conditions that are tweaking your results...in ADDITION TO your having CFS?

    BTW...BOTH my Docs are very agreeable to answering ALL my q's (whether for me or someone else) as they know how many q's PWC'S have on an ongoing basis, that aren't being adequately answered!

    jackie:Retro smile:
  4. fresh_eyes

    fresh_eyes happy to be here

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    Thanks for your input, Jenny & jackie. So I guess what I'm seeing is that it likely means I have *something else* (eg Lyme, EBV?) in addition to 'CFS'. Hmmmm....
  5. Sing

    Sing Senior Member

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    Hi fresh_eyes. For the past 20 years since I have been paying attention to lab tests, and actually getting a few, my WBC has either been low normal or subnormal. Intuitively this seemed to fit with how easily I got infections and also my low blood pressure and low body temperature. I seemed to have low hormones and low a lot of stuff--sorry not to be more specific, but the overall picture seems worth noticing too.

    Sing
  6. liverock

    liverock Senior Member

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    WBC levels are controlled to a large extent by cortisol levels and dependant on how much the immune system is fighting inflammation, so its quite natural for WBC levels to vary in CFS.

    http://www.tuberose.com/Adrenal_Glands.html
  7. fresh_eyes

    fresh_eyes happy to be here

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    Thanks, Sing. It also fits with the big picture for me, I think - not low temp. etc. but do I get every bug that goes around. Plus I just feel like I have a chronic viral infection, which can cause leukopenia (I'm just learning) not by the body making fewer white cells but rather using them up faster than it can make them.

    So, do you have any other diagnosis/es besides CFS?
  8. Martlet

    Martlet Senior Member

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    Fresh_eyes - My husband had this happen a couple of years ago. The doctor re-tested in six weeks, by which time it was normal again. Can you afford to do the same? Not right away, but in six weeks?
  9. fresh_eyes

    fresh_eyes happy to be here

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    That's what I've been thinking as well, Martlet - maybe retest in a couple months. Though it's not a sudden drop, it's been creeping down for years, so I wouldn't be surprised if it remains low.

    @ liverock: Thanks for posting that, very interesting.
  10. Dr. Yes

    Dr. Yes Shame on You

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    Hey FE,

    :confused:The link you gave is not to Medscape ; it's to a summary of the Bell lecture, which is the complete opposite of the quote you gave:

    Whoever wrote the above doesn't know what they're talking about. I'm surprised to even hear this. Of course it's not exclusionary.. if anything all I've ever heard is that it's a common finding in ME/CFS. I don't know of any real specialist in this area who would say otherwise. All I can think is that whoever wrote this is using an extreme interpretation of the Oxford or Reeves' definition of "CFS".

    I've looked into this a lot over the years, especially since my initial lab finding was persistent lymphocytosis (and atypical lymphocyte structure - if they take a 'smear' of your blood and send it to a good pathologist or hematologist, they may be able to discern the presence of what are called 'virocytes'). As has been said for years, there seem to be different immune dysfunction profiles in ME/CFS. Often the basic blood counts are more or less normal, but in other cases there is activation evident by lymphocytosis (i.e. white blood cells are proliferating, usually due to a pathogen or to a malignancy); in many other cases there are low WBC counts of one cell type or another (though most WBC counts don't differentiate between certain white cell subtypes, so aren't good at picking this up).

    What I hear most often is that most PWC have one or both of the following: (1) elevated cytokines/ inflammatory processes, (2) reduced immune function, esp. noticeable in NK cell or STAT-1 function. In most cases it seems that we have a tendency to an excessive inflammatory immune response but insufficient ability to actually destroy pathogens. Immunoglobulins are often checked to see if they are low, but in some PWC (like me) they are elevated. Doctors (like mine!) often mistakenly think that this means the immune response is healthy, if they are unaware of the hyperimmune dimension of ME/CFS. (High IgE, btw, is a different matter; it relates to allergens or certain parasites, not to viruses or bacteria.)

    So no, abnormal WBC counts should definitely NOT be seen as exclusionary for CFS - unless maybe you use the Reeves or Oxford definitions of CFS. Dharam Ablashi (the HHV6 researcher) and my father (a clinical pathologist) told me that elevated lymphocytes are a normal response to viral infection, and that one's immune profile may fluctuate over time in response to a number of factors, including of course viral activity. This includes decreased immunity states (along with the high lymphocytes, I had at least one decreased immunoglobulin type early on). And, like I said, there have been plenty of findings of low WBC in ME/CFS patients as well.
  11. fresh_eyes

    fresh_eyes happy to be here

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    Thanks very much for your input, Dr. Yes. Got that link fixed! It does indeed say that on Medscape, and it's not an Oxford Criteria type workup that I can tell, for example this bit:

    I wonder where Dr. Burke A Cunha, MD, Professor of Medicine, State University of New York School of Medicine at Stony Brook; Chief, Infectious Disease Division, Winthrop-University Hospital, got that idea.

    So now I have to decide whether to order more tests, see a doctor ($$$:(), or just let it slide for the time being. Seems like my abnormal findings (high cholesterol, low co2, and this) are all pretty consistent with regular old CFS...Hmm...

    PS He's not a real doctor! He just plays one on the forum! :peach:;)
  12. Sing

    Sing Senior Member

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    WBC, Dr. Byron Hyde, Live Blood Cell Analysis

    fresh_eyes, it can be helpful to look into what Dr. Byron Hyde has to say about WBC and other dimensions of ME/CFS--well, in his case it is ME. I believe he mentioned low WBC as common. I don't know all the ins and outs, the details of all of this.

    You asked if I had other diagnoses. Well, I have had the labels of Fibromyalgia, Chronic Lyme Disease (made on a cliniical basis since my diagnostic tests were completely ambiguous), Myofascial Pain Syndrome and Partial Central Diabetes Insipidus. But I would just consider my problem as ME. (I wish there were another acronym rather than that self centered one!)

    In a few weeks I will be getting a Live Blood Cell Analysis, which is just a picture of what is going on in the blood. Regular doctors don't accept any findings from it, because they deal with single aspects which can be quantified, etc. However, I feel that this sort of "picture" will be helpful.

    Sing
  13. fresh_eyes

    fresh_eyes happy to be here

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    Thanks for the tip, Sing - I will look into him. Also interesting about your various diagnoses.

    :D I know, right? Can't win with the names. 'The problem is me, me, ME!'
  14. Misfit Toy

    Misfit Toy Senior Member

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    I have a low white blood cell count. A low everything. No one know why.
  15. Kati

    Kati Patient in training

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    fresh eyes, white blood cellls cycle just like red blood cells and platelets. If your total WBC is 3.9, I wouldn't worry too much about it. Especially if your neutrophils are within normal range. Neutrophils protect you agains bacterial infection. If your total WBC was 1.0, then you'd need to worry. That number happen to chemo patients for instance as aftereffects of chemotherapy. Leukemia patients can have either a high WBC (like 250) or low number (like 0.1) So very likely this is nothing to worry about. No doctors would worry with a WBC panel like that either- so unless there is another problem, I'd save my money and not test it for a while.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    A subset of ME/CFIDS, ICL (aka non-HIV AIDS), a type of severe lymphocytopenia, would, I assume also result in leukopenia (lymphocytes are a type of leukocytes); so that quote looks like it's wrong.
  17. Hope123

    Hope123 Senior Member

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    I'd agree with repeating it in a few weeks. I don't think any lab is really exclusionary for CFS at this point unless it is abnormal, medical staff investigate it and find out what causes it, treat it appropriately, and your CFS goes away or abates signficantly with treatment. I read the Fukuda article from 1994 a few weeks ago and this was the impression it left me. (Fukuda had some suggestions about subgrouping, etc. which were never followed as it was meant to be a working prelim criteria to be refined and not applied fully as it has been.)

    Re: IgE. I actually have very elevated IgE and have been examined for parasites and had no typical allergic symptoms prior to or after CFS. I think it ties in with the Th-2 shift of CFS leading to more cytokines like IL-4 which promote IgE production. But like many things in CFS, it is inconsistent; some people have high IgE, others do not. I also have some subsets of IgG elevated. Also, early CFS studies show a fair number of us have allergies or conditions like atopic eczema.
  18. upnorth

    upnorth

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    Ahhh, it's nice to see a discussion on this here. While most my labs are usually normal, about 2 years into the illness my flares/relapses/crashes always coincide with leukopenia and neutropenia, sometimes into the moderates, but more often into the mild zone 3.4-3.8 leukopenia. I hadn't seen this anywhere in a description of CFS/M.E., however, in researching I found that a low WBC can be indicative of chronic viral or viral infections as well as some autoimmune conditions - which makes sense. My M.E./cfs has always been a very "viral" case with the flu symptoms predominating so the leuko and neutropenia make sense. This is the first time I've seen anyone else mention it. My flow cytometry also indicated a majorly diminished CD8 count.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have always had elevated lymphocytes, especially cd8 cells and cd4, these came down with av's, i have also had several tests that showed neutropenia. I think that the only thing common in blood tests with cfs is immune dysfunction, above or below range. I think theres many causes and or opportunistic infections that would alter these tests which makes it hard to pin down a diagnostic test.
    cheers
  20. upnorth

    upnorth

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    Hi heapsreal....I've had flow cytometry done a few times and my cd cells seem to be opposite. They were VERY low, infact I think CD8s were almost non existant? I guess this means that they can go either way with M.E./cfs?

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