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Need Help interpreting new test results: EBV, Lyme, EKG

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by BFG, Mar 30, 2013.

  1. BFG

    BFG

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    Sacramento, CA
    Just a fast intro to my condition. I have been sick for about a year just recently am starting to see that my condition is most likely pointing to CFS. I have new test results and I appreciate any input on them as my doctor just told me " you have mono go home and rest there's nothing you can do". But this isn't a reactivation since it's only the IGG that is elevated, right?

    EBV EBNA Ab(igg) : >5.00 High
    ref range: < or = 0.90 Neg
    0.91-1.09 Equivoal
    > or = 1.10 Pos

    EBV VCA Ab(igm) : < or = 0.90
    ref range: < or = 0.90 Neg
    0.91-1.09 Equivoal
    > or = 1.10 Pos


    EBV VCA Ab(igg) : 4.32 High
    ref range: < or = 0.90 Neg
    0.91-1.09 Equivoal
    > or = 1.10 Pos

    Anti-nuclear antibody: negative
    C-Reactive Protein: <0.1 (mg/dL)
    ref range: <0.8
    Sedimentation Rate (esr): 2(mm/h)
    ref range: 0-15
    Rheumatoid factor: 9(IU/mL)
    ref range: <14



    I was also tested for lyme disease, but I''m not sure if this is enough to rule it out. Since the Ab was negative they did not perform the WB.

    Lyme disease Ab Total W/rfx, to WB
    Lyme disease AB IGG, WB: TNP-reflex testing not required
    Lyme disease IGM, WB: TNP-reflex testing not required
    Lyme disease Ab Screen: < or = 0.90 Negative

    EKG: normal sinus rhythm at 58 bpm. RS transition is noted. Nonspecific inferior ST-T changes observed. There is motion artifact as well.

    I am also trying to get a diagnosis of CFS. Are these test results combined with one year history of many symptoms enough for a diagnosis?
  2. snowathlete

    snowathlete

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    Hi,

    What are you symptoms?
    How did your illness start?

    You could have cfs but you should rule out other things first. If you are lucky you will have something else. Celiacs, thyroid, parathyroid, and bunch of other stuff I can't remember. For lyme, personally, id want more certainty before ruling it out.
    Rest is a good idea, but it's not true that you can't do anything. Doctors prefer to let ebv run its course. If I had my time again is have had anti herpes virals when I had mono. I don't know enough about what is high for EBV igg showing a recurrent infection but someone else who knows will prob post.
  3. Ema

    Ema Senior Member

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    It could be a chronic, reactivated infection or an old infection. Usually there is also an EBV Early Antigen, IgG. That helps to distinguish between a chronic infection (it is positive) or an old infection (it is negative).

    The VCA IgM would need to be positive in order for it to be a new acute infection so I'm not sure why your doctor is saying you have mono. The options are either chronic or old at this point.



    It's not enough to rule it out in my opinion.

    ELISA testing is generally considered worthless for diagnosing Lyme. A better test is the Western Blot but through Igenex Labs. It's about $180 for the panel. But Lyme is still a clinical diagnosis because testing is woeful at this point. The bacteria are expert at evading detection by testing or the immune system. A good doctor skilled in Lyme is essential. No one that knew anything about Lyme would run an ELISA test as a sole measure of whether or not you have Lyme.

    http://lymemd.blogspot.com/2009/12/igm-question-is-it-chronic-lyme-disease.html

    A diagnosis of CFS doesn't require any specific test results. In fact, lack of objective testing is one of the major hurdles many of us face in terms of insurance coverage etc. It is based on meeting specific criteria and ruling out other causes for the symptoms. Though many of us, including myself, also have multiple chronic infections due to immune/endocrine dysfunctions along with ME/CFS. I would try to get those nailed down first in order to create a treatment plan that focuses on your specific issues.

    You may need to find a doctor that is more well versed in these types of issues (not all that easy, I know!).

    Ema
    Valentijn likes this.
  4. BFG

    BFG

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    Sacramento, CA
    Here is my first post about when I first cam down with this illness. http://forums.phoenixrising.me/inde...king-for-help-and-guidance.18676/#post-298501

    When I look back I see clues that may point to CFS. When I was in high school I remember coming down with something (likely EBV) and being fatigued all the time that I would crash after school and sleep for hours. Then in college i began having heart palpitations and noticed a new murmur and after seeing many echos, CT, MRI I may have ruled out marfans syndrome. But I do have mild aortic insufficiency, which I wonder if it could be caused by a virus?

    A couple of months before I became ill, I quit my job which was incredibly stressfull for me (maybe the most stress i have ever been under). I was preparing to move from home to school in LA with little money and experiencing chest pains daily. Two weeks before I became ill I caught some sort of stomach infection that gave me diarrhea for two weeks and during that two weeks is when I began experiencing the symptoms I have today. Some symptoms have gone and some have changed but a lot still remain the same.

    Whole body fatigue/ no energy in muscles
    post exertional malaise
    floaters/ light flashes/aura
    ringing /sudden tempoary hearing loss
    palpitations
    frequent diahhrea/constipation/ oil in stool
    mild dizziness/ propioception a little off
    nerve pain in limbs
    shortness of breath
    unrefreshing sleep
    chest bone pain
    stabbing pain in head
    throbbing/weird sensation behind maxilla,nose,eyes, base of skull
    orthostatic hypertension



    I think I'm almost positive it is some sort of VIRUS trying to take over my immune system.

    My identical twin brother also experieced the same onset of pattern of symptoms years back when he was juggling full time work and school. But somehow he overcame it and recovered in weeks. He is okay now, but i notice when he gets sick or stressed, not eating right, etc. he tells me he can feel those symptoms start creeping back a little i.e The neurological symptoms, IBS, fatigue, awful sleep, palpitations etc.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    BFG

    Hi, I agree with the others--could be chronic or reactivated EBV and you don't have enough testing to rule out Lyme (also good to test for Bartonella).

    I also agree that your doctor doesn't seem to be well enough versed in these types of illnesses to be of much help in diagnosing or treating you. Unfortunately, those "good doctors" are rare! If you give your location, maybe someone could recommend someone they have had good experience with.

    These tests really don't give enough information to give much indication of whether or not this might be ME/CFS. While there is not a clear set of biomarkers for ME/CFS, there are quite a number of tests and symptoms, that when put together, could indicate it. Hopefully you have something else!

    But in any case you really need a doctor who can do more thorough testing.

    Best wishes with this,
    Sushi

    P.S. we cross posted. I had not read what you just posted. Your history does seem to indicate that you should look for a good doctor and follow up with more thorough testing.
  6. BFG

    BFG

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    Thanks for the replies everyone:hug:

    I am in Sacramento CA. I have researched specialists for a while now and have narrowed it down to :

    Dr. Powell in Sacramento (http://www.fmtlc.com/bio.html) mixed reviews, but also deals with methylation
    Dr. John Chia in Torrance CA () works with herbs and looks for enteroviruses
    Dr. Kwiker/Mora in Sacramento (Health Associates Medical Grp) follows Tietalbaum Protocol does not accept insurance
    Dr. Jose Montoya in Stanford CA ([url]http://chronicfatigue.stanford.edu/[/url]) mixed reviews

    From what I have read and seen on youtube I feel that Dr. Chia is the one to be seen by .I'm hoping to purchase individual insurance and get a diagnosis of CFS to see Dr. Chia. Well that is my plan for now.

    Anyone have good experiences with these docs or can recommend good ones around the Sacramento area. Thanks[/media]
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    BFG

    Just a note--Dr. Montoya is a great infectious disease doctor but someone just posted that he has a 4 year waiting list!

    Sushi
  8. mellster

    mellster Marco

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    I am not sure if Chia would be the best as he doesn't seem to focus around EBV. Though the high titers are all IGG I think Montoya recommnends antivirals at 3 x normal levels for those IGG tests, and you are far above that. Unless you have reason to belive the EBV is a red herring I would choose a doc that is closest to you and cheapest for you that is willing to treat chronic EBV. Maybe talk to a local Infectious disease specialist or functional doc first.
  9. GcMAF Australia

    GcMAF Australia Senior Member

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    This is checklist from 2006
    Re Lyme symptoms

    The Canadian Lyme Disease
    Foundation published a diagnostic
    questionnaire that they say will help
    guide a person to see if they have LD.
    Twenty (20) YES answers out of the
    seventy five (75) questions gives a
    strong indication. Circle the ones that
    apply and count the YESs.
    Symptoms of Lyme Disease
    The Tick Bite
    (fewer than 50% recall a
    tick bite or get/see the rash)
    1. Rash at site of bite
    2. Rashes on other parts of your body
    3. Rash basically circular and spreading
    out (or generalized)
    4. Raised rash, disappearing and
    recurring
    Head, Face, Neck
    5. Unexplained hair loss
    6. Headache, mild or severe, Seizures
    7. Pressure in Head, White Matter
    Lesions in Head (MRI)
    8. Twitching of facial or other muscles
    9. Facial paralysis (Bell's Palsy)
    10. Tingling of nose, (tip of) tongue,
    cheek or facial flushing
    11. Stiff or painful neck
    12. Jaw pain or stiffness
    13. Dental problems (unexplained)
    14. Sore throat, clearing throat a lot,
    phlegm ( flem ), hoarseness, runny
    nose
    Eyes/Vision
    15. Double or blurry vision
    16. Increased floating spots
    17. Pain in eyes, or swelling around
    eyes
    18. Over-sensitivity to light
    19. Flashing lights/Peripheral waves/
    phantom images in corner of eyes
    Ears/Hearing
    20. Decreased hearing in one or both
    ears, plugged ears
    21. Buzzing in ears
    22. Pain in ears, over-sensitivity to
    sounds
    23. Ringing in one or both ears
    Digestive and Excretory Systems
    24. Diarrhea
    25. Constipation
    26. Irritable bladder (trouble starting,
    stopping) or Interstitial cystitis
    27. Upset stomach (nausea or pain) or
    GERD (gastroesophageal reflux
    disease)
    Musculoskeletal System
    28. Bone pain, joint pain or swelling
    carpal tunnel syndrome
    29. Stiffness of joints, back, neck,
    tennis elbow
    30. Muscle pain or cramps,
    (Fibromyalgia)
    Respiratory and Circulatory Systems
    31. Shortness of breath, can't get
    full/satisfying breath, cough
    32. Chest pain or rib soreness
    33. Night sweats or unexplained chills
    34. Heart palpitations or extra beats
    Endocarditis, Heart blockage
    Neurologic System
    35. Tremors or unexplained shaking
    36. Burning or stabbing sensations in
    the body
    37. Fatigue, Chronic Fatigue Syndrome,
    Weakness, peripheral neuropathy
    or partial paralysis
    38. Pressure in the head
    39. Numbness in body, tingling,
    pinpricks
    40. Poor balance, dizziness, difficulty
    walking
    41. Increased motion sickness
    42. Lightheadedness, wooziness
    43. Psychological well-being
    44. Mood swings, irritability, bi-polar
    disorder
    45. Unusual depression
    46. Disorientation (getting or feeling
    lost)
    47. Feeling as if you are losing your
    mind
    48. Over-emotional reactions, crying
    easily
    49. Too much sleep, or insomnia
    50. Difficulty falling or staying asleep
    51. Narcolepsy, sleep apnea
    52. Panic attacks, anxiety
    Mental Capability
    53. Memory loss (short or long term)
    54. Confusion, difficulty in thinking
    55. Difficulty with concentration or
    reading
    56. Going to the wrong place
    57. Speech difficulty (slurred or slow)
    58. Stammering speech
    59. Forgetting how to perform simple
    tasks
    Reproduction and Sexuality
    60. Loss of sex drive
    61. Sexual dysfunction
    62. Unexplained menstral pain,
    irregularity
    63. Unexplained breast pain,
    discharge
    64. Testicular or pelvic pain
    General Well-being
    65. Unexplained weight gain, loss
    66. Extreme fatigue
    67. Swollen glands/lymph nodes
    68. Unexplained fevers (high or low
    grade)
    69. Continual infections (sinus,
    kidney, eye, etc.)
    70. Symptoms seem to change,
    come and go
    71. Pain migrates (moves) to different
    body parts
    72. Early on, experienced a "flu-like"
    illness, after which you have not
    since felt well.
    73. Low body temperature
    74. Allergies/Chemical sensitivities
    75. Increased affect from alcohol and
    possible worse hangover
    Count the number you have circled.
  10. snowathlete

    snowathlete

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    well, i get about 30 of these. So will be interesteing to see what my test results say.
    GcMAF Australia likes this.
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    I wonder if we can get Mark to put on Home page
    some one has 59
    I would rank 20-21 or more
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I went through the list but found it hard to gauge the extent of the symptom. Some symptoms might be low level and occasional, others major problems. Like blurry vision--does that include needing to change the prescription on my glasses more often? With correction my vision isn't blurry, but it does change more frequently.

    Memory loss--to what extent?

    Things like that...So it was hard to make a definitive count.

    Sushi
    GcMAF Australia likes this.
  13. GcMAF Australia

    GcMAF Australia Senior Member

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    memory what?? just kidding
    it is just a check list
    not definite
    also at least 7 years old
    vision is an interesting one
  14. August59

    August59 Daughters High School Graduation

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    Have you had any of your hormones checked? The reason asked is that it is a different body (endocrine) system. It is probably abnormal as well. Test for a few more viruses and their results could probably get you a CFS diagnosis with all you have been through.
    Dr. Peterson would be a good one for you to and sort you out and if a diagnosis is warrantied he will make it. Just read back through and saw you were looking for Doc local to Sacramento. Just an FYI there are a few of the doctors that will do teleconferences after a couple face2face visits and it is especially good if you can get your primary care physician have a good attitude and want to participate in the long distance treatment as they could order blood work and fill prescriptions if Dr. Peterson felt it was required. It's just a thought and it can save you some money.
    Keep us up to date on you status, appointments any meds prescribed (as long as you feel comfortable with sharing the information).
    I feel like I can speak for most if not all members, wishing you the best of luck in making as much progress as possible in feeling better!
    BFG likes this.
  15. snowathlete

    snowathlete

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    i get blurry vision cause my eye muscles cant hold focus for too long. it started with my me/cfs. some stuff like floaters in eyes i didnt score because although i have them, im not sure if more than when i was well. still some of the items on the list are still tricky
  16. Lotus97

    Lotus97 Senior Member

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    These sound very similar to the symptom lists for CFS/ME and fibromyalgia...I don't think I have 20, but the symptoms I do have are severe (or at least have been at various stages of my illness) and I don't think I have any additional symptoms that aren't on the list except hypoglycemia, but hypoglycemia can be due to HPA axis dysfunction which can be caused by Lyme. I also have a recurring rash where I was bitten by tick.
    GcMAF Australia likes this.
  17. GcMAF Australia

    GcMAF Australia Senior Member

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    I would say Lyme is a distinct possiblity or even probable in you case here.
    Lotus97 likes this.
  18. Lotus97

    Lotus97 Senior Member

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    My monocytes were 11.0 last time I was tested. Is that significant?
  19. BFG

    BFG

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    So its been a little over three months since I last posted in this thread. Just an update I got a new PCP who diagnosed me with CFS back in may and yesterday just got back from seeing Dr. Chia for the first time. He told me my story points to enterovirus infection and that I have two major deficiencies in my immune system. Here are my results from the panel he ordered:

    %CD4 Pos Lymph 23.1 Low 30.8-58.5
    %CD8 Pos Lymph 39.6 High 12.0-35.5
    CD4/CD8 Ratio 0.58 Low 0.92-3.72

    IGG, Subclass 3 15 LOW 41-129

    Chlamydia Pnemoniae IGG 1:128 High Neg <1:16
    HHV 6 IGG antibodies 3.97 High Pos >0.99

    Dr. Chia didn't believe those ab titers to Cnpn and HHV6 and EBV IGG to be anthing to worry about, saying the cpn would only need to be treated at titers in the thousands and hhv6 was only slightly above normal, and the EBV showing only past infection. He also said that the lyme panel I had done was good enough and that Lyme disease was way overtreated and misdiagnosed, with no good treatments.

    I also tested negative for echovirus, but had to redo the cocksakie panel over due to an error.

    So after all that I have now started on equilibrant at 1/4 tablet and will see how it goes from here on.
  20. ashler

    ashler

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    BFG, I have been reading your posts and tests, and maybe I missed something but, have you been tested for HIV as well?

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