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    Old 08-16-2013, 06:04 PM   #1
    renee9903
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    Question multiple diagnosis = extreme confusion

    Hi,

    I just joined the board today and would be grateful for any input. Being brief is not my nature but I will give it my best try as I do not know what is or is not relevant. For many years now I have felt off. Regular bouts (lasting a week or two) of extreme fatigue and feeling like I had a fever but temp was low or below normal. Standard blood work tests always came up negative. Most recent bout far worse with additional issues. The fatigue is more severe and I sweat excessively while feeling cold chills (not to the point of shaking). My forehead feels hot inside and I have had a consistent fever (range 99-102) at the doc's office over last 3 visits taken with an old-fashioned thermometer). My digital thermometer at home usually reads 99 or below normal. I can sleep 10-15 hours a day easily and still feel tired.

    My PCP referred me to GYN (irregular cycles and I'm 47) but hormonal tests came back normal. My PCP then ran further tests and the lab flagged the below items as:
    WBC 12.2 High (ref 4.0-10.5)
    CMV AB IGG 9.9 High (ref 0.9-1.0)
    EBV AB VCA IGG >8.0 High (ref 0.9-1.0)
    C-REACTIVE PROTEIN CARDIAC 2.87 Relative Risk (ref 0-3)
    URINALYSIS SPECIFIC GRAVITY >1.03 Abnormal (ref 1.005-1.03)
    STAPHYLOCCUS AUREUS, ABNORMAL (MRSA) (my doc had swabbed a pimple on my cheek)

    My doctor wrote down the following items on a piece of paper for me to take home: EB Virus, CMV, Mono-like illness and also briefly mentioned MRSA and CFS. He prescribed me an anti-biotic Zithromax for 7 days and prescribed bed rest to return in a week.

    I went back after one week, worried about not working but still feeling the same way. He wrote a release for my job but to perform sedentary duties at home (only) for one week. My employer promptly forwarded an FMLA form to me for the doctor to complete but is allowing me to work from home (at my pleading and insistence). I work in an accounting department so there are many things I can do from home on the company laptop.

    I went back to the doctor last Tuesday, still feeling the same (my symptoms have never been so severe or lasted so long). The doctor prescribed another week of light duty at home and gave me an anti-inflammatory injection (called Dex...something???) I mentioned the FMLA form earlier only because of what he wrote - simply Chronic Fatigue with intermittent exasperation. Other fields needing clarification were notated either "variable" or "unable to predict at this time". The only thing that changed after I received the injection was that I had trouble sleeping that night.

    My employer has been extremely flexible and shown a great amount concern and consideration. If he sees I've been online more than a few hours he tells me to dial it down and get some rest . I mention this only to stress that he is not adding any stress to my current situation. But realistically how long can this go on? I am getting scared because although the rest has been helpful, I have noticed a distinct pattern in that after being up and working at home for a few hours I can feel the heat in my forehead increasing and my sweat/chills increase and body just gets "heavy".

    So much information - yet so little information. The only other things I can think to mention are: asthma and allergies since childhood, lower back surgery 4 years ago, treated for thrush in my upper digestive tract 2 years ago, and water removed from my left knee twice over the past few years.

    There is so much conflicting info on the internet and I don't really understand what is going on with me as my doctor is always so rush-rush. Plus I don't even know what to ask him or what to expect at this point.

    Can anyone offer words of wisdom, a similar experience, or suggested actions to take next?

    (so much for being brief - sorry!)
    Renee

    one more thing I forgot to add - my heart rate has been elevated between 100 to 120 on last 3 doc visits. after fixing soup and green beans for dinner tonight (simple enough) I could feel my heart beating extremely fast.

    Last edited by renee9903; 08-16-2013 at 07:50 PM. Reason: forgot to include a key symptom

     
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    Old 08-21-2013, 07:09 PM   #2
    ladybud
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    Re: multiple diagnosis = extreme confusion

    Renee, My interpretation of your test results is a little different than your Dr's. I think the EBV and CMV results simply show previous infection with both viruses that cause mono-type illness. Past infection doesn't indicate current viral infection or activity. You just have the long term antibodies to the virus (IGG), which most people have, at least EBV. Your CRP is borderline high, an index of inflammation. A sedimentation rate would be helpful to go with that, as they indicate slightly different things. I would wonder if you might have an autoimmune disorder, and would ask for thyroid hormone levels, anti-thyroid antibodies, ANA (for lupus), RA and /or anti-CCP for rheumatoid arthritis, and then follow up on any abnormals. A fever in conjunction with extreme fatigue in episodes over years usually indicates autoimmune problems with inflammation. The MRSA is probably incidental to all this (not related). If your Dr seems uncomfortable with this additional workup, I would see a rheumatologist for it. The knee swelling is probably related and hormonal changes of nearing menopause may be making the condition worse. Fast heartrate is common in lupus. The sweats may be hot flashes starting. Elevated white count may be from inflammation, not infection.

     
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    Old 08-23-2013, 04:55 PM   #3
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    Re: multiple diagnosis = extreme confusion

    Thank you so much for taking the time to respond Ladybug. Would you possibly be able to take a look at my results/concerns on the other tests you mentioned?

    SEDIMENTATION RATE = 25 (ref 0-32)

    THYROID - I don't see anything that says thyroid in the lab results my PCP gave me. Would it be called something else? I do remember though that my GYN said all of my hormone levels were normal. He had ordered his own lab work after my exam. He did mention that 1 of my thyroid tests was "a bit off" but said he was not concerned because all of the other thyroid tests were normal. I wonder how many thyroid tests there are?...

    ANA DIRECT - Negative. So this definitively rules out Lupus?

    RA LATEX TURBID = 10.4 (ref <13.9). Is this the RA test you referred to and does it rule out Rheumatoid Arthritis?

    CRP 2.87 - You mentioned this is borderline high and I didn't notice before that after the "relative risk" noted in the lab result it says "relative risk for future cardiovascular event". This is troubling me immensely. In addition to my hot/sweaty/achy/chills thing I have been getting severe headaches (usually setting in late afternoon after working for a few hours and for a bit after I wake up each morning). Considering the headaches and my elevated heart rate - could all of this be related to my heart? Do you think I might be heading for a heart attack or a stroke???

    EBV AND CMV IGG - I wonder why the lab flags elevated IGG as abnormal if most people have this. I have since looked at some other posts on here and do see many people saying high IGG levels are NOT abnormal. It must be some grand conspiracy concocted by LabCorp to get further testing done! (I am completely kidding of course as I try my best to maintain my sense of humor - or lack thereof - during stressful times). So I looked at my IGM levels for both tests:
    EBV IGM <0.2 (ref 0-0.8 = AI and 0.9 = negative). Do you know what it means that I am below negative or what AI means?
    CMV IGM <0.9 (ref 0-0.8 = index and 0.9 = negative). I don't know what "index" means or how one can be below negative.

    In summary, I'm still confused. I had heard of chronic fatigue before but am still left wondering if this is what I have or if I might have heart issues. My doctor does not seem uncomfortable with additional testing, he is just so slow. I went back to see him again this week and he has still not released me to return to work. My heart rate was 120 and I still had a low-grade fever. He said he wants to take the time to do some research and further review my history and will most likely order some other tests and refer me to some specialists. I want so badly to return to work but I still feel sick and get tired so easily. Sometimes I can't even sleep through the night and then sleep 15 hours the next day.

    Well, once again, I was not able to make a brief post. My apologies for rambling on so much.

    Renee

     
    Old 08-25-2013, 08:57 AM   #4
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    Re: multiple diagnosis = extreme confusion

    Renee, The sed rate is similar to CRP and yours is higher than it should be, any shows inflammation. I would not worry about heart attack and stroke right now. Elevated CRP is a risk factor, but takes many years of elevation to manifest as heart attack, like high cholesterol takes many years to build up. The fast heart rate, however, is abnormal, and could relate to the fever, inflammation or if your thyroid gland is hyperactive. The IGM levels are both negative, indicating no present infection, so you just had CMV and EBV is past. These viruses, however are suspected to be triggers for autoimmune diseases later on, so may be relevant in that respect. A negative ANA does not necessarily rule out lupus, as the symptoms of lupus casn precede the ANA turning positive, and 4-5% of people with lupus remain ANA negative. RA factor is the test I referred to, but up to 40% of people with RA have a negative test. In summary, with sed rate and CRP elevated, plus all of your symptoms, I think an autoimmune disease with inflammation is causing all of this, and that path should be pursued. Here's some suggestions: Get your thyroid results from GYN and look for low TSH and/or high T3 or T4, then be sure you get anti-thyroid antibodies run (anti-TPO and anti-TG). Get an anti-CCP done for RA, more sensitive than RA factor, plus an anti-ds DNA, anti-Smith, and anti-phospholipid antibody related to lupus. A referral to rheumatologist is reasonable as well, or endo if thyroid tests are abnormal. These autoimmune diseases can be hard to pin down, as labs don't always confirm what is going on early in course, but you have many symptoms and some suggestive labs to pursue and look further. Notice if sun exposure makes your symptoms worse-characteristic of lupus. A urine is important to look for blood or protein as well. Because of the MRSA, I would also see an infectious disease Dr. to make sure that has been cleared up. A beta blocker would slow your heart rate until your thyroid levels are checked, to rule out hyperthyroidism. Most labs use 0-20 as a normal range for sed rate, which is why I think yours is high. Complement levels can help (C3, C4, and CH50) also.

    Last edited by ladybud; 08-25-2013 at 09:01 AM. Reason: added

     
    Old 08-26-2013, 08:41 AM   #5
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    Re: multiple diagnosis = extreme confusion

    Renee, One other thought- I question the use of Zithromax for a MRSA infection, which can be systemic, not just local on the skin. I would make sure a sensitivity was done with the culture, and that the MRSA was sensitive to the Zithromax. An infectious disease consult would be appropriate if not to rule out any systemic infection. Of course this would be a complication on top of the underlying condition that has plagued you for years, but it is important to address each issue as it presents. I know I have thrown a lot of technical info at you, just try to digest it a bit, and I'll try to help with any questions you might have.

     
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