OT Leukemia symptoms mimic CFS Fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by SteveInOZ, Sep 6, 2006.

  1. SteveInOZ

    SteveInOZ New Member

    Hi guys and gals.

    This is my first post. I run a support group for chronic lymphocytic leukemia. I have CLL. So what? you may ask.

    The reason I was diagnosed with leukemia was after investigations into symptoms that were originally named CFS then Fibromyalgia then polymyalgia rheumatica and now seronegative inflammatory arthritis.

    Guess what, many of my online mates with CLL have a similar story, but we are all told that it is unrelated to our leukemia.

    our "straw poll" found that almost everyone with these symptoms has had EBV infection that resulted in clinically diagnosed infectious mononucleosis!

    IL-15R alpha was lost in acute IM and remained undetectable thereafter not just on EBV-specific CD8(+) populations but on the whole peripheral T- and natural killer (NK)-cell pool. This deficit, correlating with defective IL-15 responsiveness in vitro, was consistently observed in patients up to 14 years after IM

    We are attempting to fund more research into myalgia and arthralgia in relation to cytokines and impaired immune systems.

    I wish you all well and point out that even in a diagnosed illness like CLL Doctors do not even have a clue of all the symptoms involved. Just food for thought.

    Steve
  2. carebelle

    carebelle New Member

    welcome to our world
    I have often thought there may be something to a connection because of just how tired my CFS makes me. I would not be surprised ever if a doctor told me I had leukemia.

    I wonder how many people get told they have one D and then find out down the road of testing they have another?

    sometimes I feel like we have a very slow growing cancer and its just not been named that yet.
    please post more of what you find that is like our Illness it would be very interesting to read more of your post.

  3. pam_d

    pam_d New Member

    Welcome! It is interesting how many different names they gave your symptoms over the years, prior to your CLL diagnosis, and the links you suspect. I hope you are doing all right these days healthwise.

    I have had AML since March of this year. I originally found this board several years ago because of FM symptoms (never formally diagnosed). Ironically, my FM symptoms had been much, much better in the last three years, to the point where I felt pretty normal. Then I got Leukemia. My only real symptoms then were a high fever and nightsweats, pretty common with acute leukemias, I think.

    I also have had mononucleosis in my background, when I was in college. I'm 50 now.

    Interesting "food for thought" as you say...

    Take care,
    Pam
  4. SteveInOZ

    SteveInOZ New Member

    First of all I want to state I have no evidence that CFS or FM is in anyway linked to CLL.

    This being said people with autoimmune diseases are 7-12 times more likely to get CLL.

    Similar symptoms:

    Dibilitating fatigue
    muscle aches and pains
    joint pains
    bone pain
    sweats (often with low body temp)

    These symptoms are dismissed by conventional medical wisdom, my linkage is purely anecdotal. But far too many people I know with CLL have all these symptoms.

    4%-6% of the population if tested for a monoclonal B Cell population will test positive. Only 3 in 100,000 people will be diagnosed with CLL. There are therefore thousands of people with a possible immune system defect that have no idea.

    It is interesting that many people report a lessening or total loss of these symptoms when first treated, even though no improvement in the leukemia was seen.

    As with CFS and FM we have our docs telling us fatigue is all in our heads, just because they cannot fins a "real" reason for it.
  5. kirschbaum26

    kirschbaum26 New Member

    Dear Steve:

    I am interested in where you got your info on the increased risk for people with auto immune diseases to get leukemia. I have also thought that many of my FMS symptoms are similar to leukemia. I also felt that since my team of doctors are continuously taking lots of blood, that if I did indeed have anything seriously wrong with my blood tests, that they would be sure to see it.

    I have RA, and have had it for 12+ years. I also have a list of other issues, including FMS, IBS, DDD, asthma, liver disease (due to too much advil over the years) and some heart issues (atrial fibrillation). I have been getting night sweats for years...sometimes it is much worse, and sometimes not so bad. I usually have a low temp, around 97.6. I have been tested for hormone issues, and was informed by an endocrinologist that I am not in menopause, and that my thyroid is okay. I have had some adrenal issues (due to taking prednisone for 7+ years).

    So, welcome, and I am certainly interested in hearing more.

    Ingrid
  6. carebelle

    carebelle New Member

  7. justlooking

    justlooking New Member

    Question: Pre CLL diagnosis did you have any abnormalities in your white or red blood cell counts? High or low? or any of the other CBC tests?
    What were the diagnostic test that identified CLL? And what was the initial indicator to the Drs to check for CLL?

    TIA

    Sincerely
    JL
    [This Message was Edited on 09/07/2006]
  8. KelB

    KelB New Member

    "I am thinking most of the population's bloodwork shows they have had an EBV infection"

    I remember reading somewhere that by the age of 40, 90% of the UK's population has EBV antibodies (that means dormant, not active I think?) in their blood test results. It's not necessarily that they've had full-blown EBV, but they've come into contact with it at some point, enough to cause an immune system reaction.

    From the late 30s onward, the presence of EBV antibodies isn't indicative of much, other than middle age beckoning.
  9. justlooking

    justlooking New Member

    Also I believe there is a difference between having an EBV infection and Mononucleosis. Almost all humans have come in contact with EBV and have antibodies for it, but not all people end up getting Mono... I believe it is a relatively low percentage of people get Mononucleous as a result of EBV infection.
    I had it when I was 11/12 and was so sick I was down for the count for over a month. Most people who have had Mono would have likely sought medical attention (and received diagnosis) because it really is something that is distinguishable from a normal cold/flu symptoms and by the length of time you are sick.

    Anyway hoping Steveinoz will check in so I'm bumping back to page one.

    JL
    [This Message was Edited on 09/07/2006]
  10. bct

    bct Well-Known Member

    Hi Steve, I found your info.interesting.

    I was dxd. with CFS in 1994, and with CLL in 2001. My CLL has remained stable and has not required treatment.

    I've also always had very high EBV titers.

    My oncologist who I see for CLL monitoring said he felt there was no connection between CFS and CLL when I asked him.

    I wish I could check into your support group site, but I guess it's against the rules........

    Best Wishes
    Barry
  11. SteveInOZ

    SteveInOZ New Member

    My CLL was diagnosed after all other tests proved negative, flow cytometry confirmed the cell surface markers unique to CLL. When I was diagnosed my white cell count was just above reference range at 15.5 my lymphocyte count was 5.2 (also just above reference).

    My GP was certain "its just a virus" Oooops !!

    As previous posters have noted nearly all people will have EBV+ antibodies, but only 1:4000 people will get infectious mononucleosis. Our completely unscientific "straw poll" is showing 26% members have had clinically diagnosed IM.

    Human Herpes Virus 4, HHV-4 or Epstein Barr virus is the only virus that was detected in my peripheral blood.

    ITP and AIHA (autoimmune heamolytic anemia) are the two autoimmune diseases that have a definate link to CLL. That is to say a very high percentage with CLL will develop ITP and AIHA not that ITP will cause CLL.

    Barry, the reply you recieved from your Onc is fairly typical. Recently Prof. Terry Hamblin stated "I am absolutely convinced that CLL patients get fatigue as a symptom. Trying to find out why is very difficult. Jumping into treatment may not be the correct path to follow. More research into this difficult problem is clearly needed."

    I am not sure about the posting of links on this board, Barry if you look up chronic lymphocytic leukemia in wikipedia then go to external links, online support groups, you will find us :)
  12. KelB

    KelB New Member

    I've always understood that links are OK in posts as long as they point to strictly non-commercial sites. Especially important not to link to potential competitors of ProHealth (just good manners really!).
  13. justlooking

    justlooking New Member

    for the additional info.

    My WBC has been low for about a year now and my Drs don't seem to think its and issue. It's not super low, a little below the normal range. About 6 months ago my RBC began to become below the normal range too.

    Then to make everything even more confusing, my last CBC showed my WBC higher than normal range.
    My liver tests were also out of whack for about 18months but have stablized recently.

    I just don't know what it all means and can't find the energy to do the research right now. I'm exhausted within a couple of hours of waking and ooohhh we all know how that is so I'm not going to whine LOL...

    Thanks again for your input, its very interesting and a lot of food for thought.

    Sincerely
    JL