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Would appreciate experts interpretation of my test.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by PhoenixBurger, Feb 14, 2013.

  1. PhoenixBurger

    PhoenixBurger Senior Member

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    Hello all -

    I have loosely affiliated myself with this web site as I do not know what my condition is, but it involves more than anything else - bodywide muscle fasciculations. As a side element of the fasciculations (going on 4 months now) I have developed sensory issues (burning, freezing) muscle spasicity in my calf that lasted 2 months then released, burning aching pain in my thighs, painful armpits and underarm areas, and extreme exercise fatigue. Despite this, with a very careful lifestyle change I am able to operate mostly normal, and do not have the extreme ongoing fatigue most of you face, nor do I have ongoing flu-like symptoms.

    Normal Brain, Spine, Neck MRI. Normal EMG. No clinical weakness or signs of Neuromuscular Disease. No signs of any disease in fact. To the point that doctors told me I was imagining things. I had nearly 30 tests run including ANA.

    Only test that showed positive, nearly 3 months ago now ... was CMV IGM and IGG. Doctors told me that was in no way causing bodywide fasciculations and all my other symptoms. And as mentioned, that was nearly 3 months ago.

    I had my CD4 and CD8 counts run:

    Absolute CD4 helper: 879 (range 359-1519)
    % CD4 Pos. Lymph: 33.8 (range 30-58)
    Absolute CD8 suppressor: 983 *HIGH* (range 109-897)
    % CD8 Pos. Lymph: 37.8 (range 12-35)
    CD4/CD8 Ratio: 0.89 (range 0.92-3.72)
    Lymphs: 51 *HIGH* (range 14-16)
    Neuts: 41 *ALMOST LOW* (range 40-74)

    Any immune system boosting supplements I've taken have immediately caused my twitching to go haywire, so I have always felt that the last thing I needed was to enhance my immune system. Additionally, taking Quercetin immediately gave me a sense of calm and relief throughout my system, though twitching didn't stop. Quercetin inhibits inflammatory cytokines.

    Doctors have been of zero help. So I have been trying to determine if I should be ENHANCING or SUPPRESSING my immune system right now. I am told that the above abnormal results imply possible development of AUTOIMMUNE DISEASE.

    From what I know about autoimmune disease, there is a period of time where you can possibly stop it from progressing to actual disease. But you have to catch it early. At this time I have no proper markers of actual disease processes in my body, aside from the above. So I am thinking that maybe I need to begin working on calming my immune system.

    Any help you can give me would be so much appreciated.
     
  2. Creekee

    Creekee Senior Member

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    Pburger,

    Have you considered low dose naltrexone?

    Creekee
     
  3. Valentijn

    Valentijn Activity Level: 3

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    It sounds like CMV can cause pretty much anything to malfunction:
    Neuropathy especially could explain many of your symptoms.

    Also:
    This might imply that you were recently infected with CMV for the first time, or that you are immunocompromised.
    Have you been tested for rheumatoid factor? Testing of ANA does not rule out other autoimmune antibodies.
     
  4. Kati

    Kati Patient in training

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    PhoenixBurger someone like Dr Montoya or Dr Kogelnik, perhaps Dr Klimas would be helpful in this case.

    Good luck. The Lymphocyte number is awful.
     
    PhoenixBurger likes this.
  5. PhoenixBurger

    PhoenixBurger Senior Member

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    1). Yes been tested for Rheum. Normal

    2). Doctor says "high normal" Lymphs and "High normal" CD8 are no big deal. Why do you say the number is awful?

    3). I'm aware of all those CMV statements from HIV web sites, and so are my doctors, but I do not have HIV and my docs state there is no reason to believe that im immunocompromised. Thats the whole reason im confused. Plus, neuropathy is one thing. Bodywide muscle fasciculations 24 hours a day for 4 months seems a bit different.

    Any other input?
     
  6. Kati

    Kati Patient in training

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    A lymphocyte count of 51 when the normal is 14-16 is very significant. (unless this is a typo and you meant to type 15)
    That said I don't know what it means and it is best as mentioned to see knowledgeable physicans- who are also great diagnosticians.
    Dr Klimas tests the immune system- including cytokines which gives clues as of what is going wrong.
    Dr Byron Hyde could also possibly be able to help you and he does skype visits- he would likely be able to point you in the right direction. He is an expert in being curious and finding the right diagnosis- in fact he has found many patients to be misdiagnosed with ME. Look him up at nightingale clinic.
     
    Valentijn likes this.
  7. Valentijn

    Valentijn Activity Level: 3

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    If it's a percentage (lymphocytes usually are), then "46" might be more likely than "16". But it is still elevated, which typically indicates a viral infection. It would make sense that the new or reactivated CMV infection would cause that elevation.

    According to http://labtestsonline.org/understanding/analytes/cmv/tab/test , CMV IGM means there is an active infection ... so it might make sense to retest soon to see if CMV IGM is still elevated, since IGM goes back down several months after the infection gets under control. So if it's still elevated, that should indicate a chronic reactivation that needs to be dealt with, rather than a normal acquisition of the virus for the first time.

    And if your doctor doesn't believe in treating chronically reactivated viruses, it might be time to find a new doctor :p
     
  8. rlc

    rlc Senior Member

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    Hi Phoenixburger, your high lymphs may be due to CMV, it could be retested to see if the infection is still present, but your symptoms are not typical CMV, and if you are not immune compromised, then CMV should not last so long.

    However, there are many causes of high lymphs and maybe it is one of these other causes that is the problem. Diagnosispro lists 91 possible causes of high lymphs, see http://en.diagnosispro.com/differential_diagnosis-for/lymphocytes-lab-increased/10408-154.html

    You could try getting your doctor to look at this list, and see if there is anything on it that would explain your symptoms, which has not been tested for yet.

    All the best
     
  9. PhoenixBurger

    PhoenixBurger Senior Member

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    Sorry I screwed up. My Lymphs are 51.

    But the range was supposed to read (14 - 46) ... not 14 - 16

    Does that change any of the replies immediately above? rlc Valentijn Kati

    The doctor agreed with this. He said it was the only issue to note in all my bloodwork. But he feels this is a new infection.

    Great minds think alike! I retested yesterday and should have the results by Monday. Thank God for the ability to order my own tests because no doctor offered to check this again.

    Here's the exact duration so far: I had a viral syndrome Sept 1. Lasted a week. Went away. Sept 27 i began twitching. Then muscle aches, cramping, burning, neuropathy for 2 months. At 4 month mark it almost completely went away. Thought i was done, but then it resurfaced. I've been trying to suppress "whatever it is" back down again, since. So the total duration right now could be stated at 5 months.

    Maybe im still in the "primary infection" window, since im at 5 months? I am almost 40 ... so getting CMV at 40 isnt the same as getting it at 15.

    He plainly stated that CMV does not reactivate. But doctors mean nothing to me anymore. They are a joke. Plain and simple.
     
    Valentijn likes this.
  10. Valentijn

    Valentijn Activity Level: 3

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    Well it means it's not an extreme elevation, but it's still an abnormally elevated result. It would still likely indicate an active virus, especially since an active virus was also detected.
     
    Kati likes this.
  11. PhoenixBurger

    PhoenixBurger Senior Member

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    Valentijn Thank you, i just edited my post to add new information above.
     
  12. Valentijn

    Valentijn Activity Level: 3

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    The impression I got was 3-4 months is typical, but can be between 2 and 9 months. So another test might be needed in the future to "prove" it's chronically reactivated.

    Are you sure he's a doctor? And went to an actual medical school? And isn't suffering from brain trauma or neurological degeneration? Everyone knows Herpes viruses reactivate!

    And they're not all useless. I've run into a couple decent ones, several horrible ones, and one very open-minded and cooperative doctor. Fully licensed Naturopathic Doctors (equivalent to MD) can at least be good for getting things tested and taking results seriously, and should be able to provide appropriate pharmacological treatment.
     
  13. vitamink

    vitamink

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    Hi PhoenixBurger, have you had thorough testing for Lyme disease?
     
  14. PhoenixBurger

    PhoenixBurger Senior Member

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    CMV Cross Reacts with Lyme Antibody test.

    That's how I found out I had CMV. Not that any doctor had the brains to suggest the CMV test. My Lyme antibody test came back positive. But Western Blot and C6 Peptide and PCR all came back negative. At the bottom of the Lyme Antibody test result it said it can cross react with CMV. So I went myself and got a CMV test because the doctor said I was making no sense. It came back positive.
     
  15. Marlène

    Marlène Senior Member

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    @ phoenixburger

    have a look at www.lymeneteurope.org to be sure the Lyme test was not positive after all.
    I'm no specialist but you can get good advice there.
     
  16. vitamink

    vitamink

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    hi phoenixburger. it seems more likely that lyme disease would be causing your symptoms, and not cmv. lyme can cause muscle twitching, stiffness, burning, pain and fatigue, among other symptoms. if you have your original lyme western blot results, would you mind posting them?
    k
     
  17. PhoenixBurger

    PhoenixBurger Senior Member

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    Its not lyme. I have already thoroughly tested for Lyme multiple different ways. Even the Lyme enthusiasts who state the LabCorp Western Blot is insufficient would acknowledge that I am negative. On the Lyme Western Blot I had *zero* bands positive. Not even a single one. That means negative. There are countless conditions which cause muscle twitching. Even herpes viruses, of which CMV is one. Google this phrase: Herpes Muscle Twitching. Prepare for the avalanche...

    -----------------------------------------------------------------------
    Valentijn

    I got my follow up CMV results back today. It is exactly as I expected. My first CMV test in the thick of the symptoms, when things were much worse, was December 4. It showed:

    IGM (current acute infection): 3.4 HIGH (positive = > 1.0)
    IGG (immunity level) 14.7 HIGH (positive immunity = > 1.0)

    Today, 3 months later my results did exactly what I hoped they would.
    IGM (active infection) went down, IGG (immunity) went up.

    IGM (current acute infection): 1.5 (positive = >1.0)
    IGG (immunity level) 18.0

    I have read that CMV at initial infection has a window period of rougly 6-9 weeks before it kicks into gear. So that may represent my Sept 1 - Oct 10thish initial flu event and subsequent 6-9 weeks of mild to zero symptoms.

    Then October November December I was doing pretty badly. (month 1 - 3)
    Right around Christmas, it suddenly started to go away. (month 4)
    By end of January I thought I was done, but had a bit of a relapse.
    Im now trying to manage it to go away. Hopefully for good (month 5)

    If the numbers are correct, I have built increased immunity and begun to squash the acute infection. Very slowly.

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

    Now just for fun (humor me here) ....

    If things progress at the rate they have thus far based on the numbers (reduction of 0.20 IGM per week), I have 0.50 left to go before I am no longer "positive". 1.0 - 0.9 is equivocal. Less than 0.9 is negative. So maybe another 2 - 3 weeks until I enter into "Negative" for acute infection.

    My EBV from 10 years ago remains dormant at IGM of 0.6 .... so maybe as I approach 0.6 with CMV i will truly begin to feel better finally. Getting to 0.6 would take roughly another 5 to 6 weeks. Assuming (just for fun!) things progress perfectly linear :)

    I will probably retest on April 1 and see if I have finished.

    From that point forward, I have to hope and pray that I don't have issues with reactivation.

    I have to assume at this point that this is a new CMV infection that just hit me very hard since I am almost 40.

    This is an older guy who acquired CMV late and had the exact same symptoms as I did:
    http://www.medhelp.org/posts/Neurology/CMV-causing-neurological-issues---Antivirals/show/1025990
     
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  18. Valentijn

    Valentijn Activity Level: 3

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    Excellent news, PhoenixBurger ... with any luck CMV symptoms will soon be gone :balloons: And I think following up after a few months is a great idea.
     
  19. PhoenixBurger

    PhoenixBurger Senior Member

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    Just an update, and im posting it on this site because you all continue to blow me away with your knowledge. I hope you'll forgive me if I don't belong here ultimately. Some more comments / questions I'd appreciate your input on:

    1) Is it true that *most* here *tend* to have sluggish immune systems? Therefore my high CD4 (nearly 900) and even higher CD8 may in fact imply that I am at least not dealing with a *typical* CFS situation?

    2) I don't want to get too in depth here, but I took HIV antiretrovirals (four of them) including the infamous and deadly AZT for 30 days which set all of this off. There is a syndrome called IRIS. Immune Reconstitution Inflammatory Syndrome. It has two elements to it.

    One: Suppression of existing viral load (not just HIV as I am HIV negative) resulting in a reflex skyrocket of CD8 counts and immune inflammatory behaviors.
    Two: Somehow the reactivation of past infections which need to be treated back into submission.

    In paradoxical IRIS, the symptoms of an infection that’s already resolved reappears, sometimes due to a stubborn infection or drug resistance, but often cultures are sterile, which means there’s no active infection. Instead the body is railing against the persisting antigen or dead pathogen. Usually paradoxical IRIS resolves on its own.

    I have tested positive for antibody activity to Lyme disease twice since this started, yet negative to PCR for Lyme. I have tested positive for antibody activity to CMV twice as well. I find it extremely difficult to believe that I am currently positive for two diseases at the same time. Two active infections.

    While I realize you guys see this type of thing often - the fact that my PCR is negative, and my Western Blot had absolutely no positive bands for Lyme, and a C6 Peptide test for Lyme also came back negative .... implies that my immune system is on overdrive. I have decided to order the CMV PCR test tomorrow. If that is negative as well ... then I have immune activity on two diseases that have no PCR activity.

    To me this implies the possibility of IRIS. IRIS is when the immune system THINKS there is a current infection based on seeing remnants of past infections, and mounting an immune response to that "phantom" infection. Others I've spoken to who took HIV meds for prophylaxis had similar issues. Needing prednisone to finally calm the immune system.

    If my immune system has been mildly attacking me for the last 12 months, it could be doing some serious damage. And I need to stop the process. But the 10 million dollar question is: Do I have current active infections? Or do I have an immune system that thinks I do? (does mildly high Lymphs prove actual infection or could this also be a "mistake" of the immune system?) No doctor has had the wherewithal or brains to bother thinking outside the box like this *AT ALL*. We don't even come close to it in our discussions. Its all summarily dismissed.

    Not sure why im even posting this. Just wondering if any of you have any comments or thoughts, and are bored enough to type them out for me. I know you all have your own concerns to deal with so I appreciate any thoughts. I hate that I am my only advocate right now.

    Sushi Valentijn alex3619 rlc
     
  20. Valentijn

    Valentijn Activity Level: 3

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    I think this would be an over-simplification. Some experts think we have an immune shift or imbalance, where one part of the immune system becomes over-active, and the other under-active.
    Paradoxical IRIS sounds like it could also be explained by autoimmune reaction, perhaps triggered by the prior infection or treatments. There is some indication that ME/CFS may essentially be autoimmune, especially in a very recent study which is explained at http://phoenixrising.me/archives/16017 .
    Again, I think this can happen with auto-immunity testing - basically things cross-react. Also steroids are often used to suppress auto-immune reactions.

    No easy answers for any of us yet, just possibilities to explore.
     

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