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diagnosis of mono with negative EBV and CMV tests
I am a middle-aged woman, otherwise in generally good health. I have polycystic liver disease, but it's not really doing very much to me - it's been stable for years. I have mild osteoarthritis in my hands and bulging/blown lumbar discs that I'm managing with exercise and accupuncture. I've had all the usual childhood diseases for my ear (mumps, measles, rubella, chickenpox, etc., etc.). I usually walk at least a mile to a mile and a half a day and am an avid gardener. I've been sleeping fine, as far as I know. I rarely am ill, not even with a head cold. I am careful what I eat. Other than being low on vitamin D, per the doc a year ago, for which I take supplements, I take no medications.
About six weeks ago I began to be increasingly more tired - the kind where you wake up tired, and take naps in the daytime because you must. The "you fall asleep watching tv at 6:30 in the evening and you eat cereal for supper because it's too much work to cook after working all day; and you can't do the things you really like and want to do, because you are just too tired" kind of tired.
I have had a few very low grade fevers on and off, no sore throat, no cold symptoms, no enlarged lymph nodes (that I'm aware of), no headache, no coughing, no muscle aches other than the usual ones. I tend to wear a back brace because of a ruptured disc, and it has become uncomfortable to do this - seems to make being "out of breath" a bit more noticeable. I have been some noticeable problems with brain fog and memory, especially when I am tired in the afternoons at work. I've put on several pounds in the last month as well, but my activity level is way down so that fits. My hair also seems to be falling out more than normal, as I have just had to disassemble the vaccuum cleaner to cut the hair from around the roller where it was jamming the machine. (I have long, thick hair.)
So I finally went to my HMO primary care physician after managing to drive to the grocery store, but being too tired to get out of the car to go get groceries. He listened to my heart and lungs with a stethoscope and had me describe my symptoms. That was the complete extent of the exam, except for his nurse taking a BP, temp, and O2 sat. He ordered a huge number of blood tests, including thyroid and CBC.
I have all the results, and they are all resoundingly normal except that I seem to have a slightly high ferritin level, a positive mono blood test, and slightly elevated liver enzymes (still within "normal" but 1/3 again higher than some I had done last year). He also ran a urinalysis (only unusual result was "hazy") and the EBV test and a CMV test are both negative. Took a lung xray (normal) and an echocardiogram (fine, for my age). I took several days off work and basically slept the whole time and now am better, though not completely over this. It's still dragging on, especially the brain fog.
I have had dogs and cats for years, as well as rats, hamsters, birds, and tropical fish. I was also around cattle and horses for many years as a young person. I had Bird Fancier's disease about 5 years ago, which is why I ultimately went in to the doctors as this was somewhat similar - a bit out of breath too easily and so very tired all the time was how that started and I was afraid it had come back, even though I have had no close exposure to birds or even feather pillows in years. However, my O2 saturation levels are just fine, so that pretty much rules out a return of the BFD.
I had a wonking bad case of mono when I was 25 years old, swollen glands, positive test, etc., confirmed by a medical professional. Was sick in bed for several weeks. I was always told I could never get mono again.
So, the doc is saying "it's mono". I am still tired, though not nearly as badly, three weeks later, which is basically 7 to 8 weeks after this all started. The only thing that says "mono" is that blood test. No EBV antibodies, no positive CMV test. That doesn't follow, does it, really? I've asked him about the negative tests and he says they "really don't know a lot about mono, there's no money in research for it" and to just let time do the healing.
While I am getting better ~very~ slowly, I'm extraordinarily uncomfortable with that answer. I was never asked about pets, so toxoplasmosis was never on the table. In fact, we do have a rat right now that has a serious (and will be eventually fatal for it) lung disease that is common in rats. And I did spend at least 40 years with at least one cat in the household and fostered cats from various cat shelters over the last 20 years.
I wonder if it's worth bringing any of that up at this point? I've emailed him and asked him one last time, could the mono test be a false positive caused by some other infection? The ferritin would seem to indicate there was some sort of immune thing going on. But I've received no response at all.
I'll wait a few more day, and then will ask to see another doctor - which will mean I'll have to switch PCPs if I can find one that is accepting new patients in the HMO, as this will not go down well with the first one. HOWEVER, if there is really a way to have mono with nothing but the mono blood test indicating it, there's no need to do this.
Any info at all for me?
About six weeks ago I began to be increasingly more tired - the kind where you wake up tired, and take naps in the daytime because you must. The "you fall asleep watching tv at 6:30 in the evening and you eat cereal for supper because it's too much work to cook after working all day; and you can't do the things you really like and want to do, because you are just too tired" kind of tired.
I have had a few very low grade fevers on and off, no sore throat, no cold symptoms, no enlarged lymph nodes (that I'm aware of), no headache, no coughing, no muscle aches other than the usual ones. I tend to wear a back brace because of a ruptured disc, and it has become uncomfortable to do this - seems to make being "out of breath" a bit more noticeable. I have been some noticeable problems with brain fog and memory, especially when I am tired in the afternoons at work. I've put on several pounds in the last month as well, but my activity level is way down so that fits. My hair also seems to be falling out more than normal, as I have just had to disassemble the vaccuum cleaner to cut the hair from around the roller where it was jamming the machine. (I have long, thick hair.)
So I finally went to my HMO primary care physician after managing to drive to the grocery store, but being too tired to get out of the car to go get groceries. He listened to my heart and lungs with a stethoscope and had me describe my symptoms. That was the complete extent of the exam, except for his nurse taking a BP, temp, and O2 sat. He ordered a huge number of blood tests, including thyroid and CBC.
I have all the results, and they are all resoundingly normal except that I seem to have a slightly high ferritin level, a positive mono blood test, and slightly elevated liver enzymes (still within "normal" but 1/3 again higher than some I had done last year). He also ran a urinalysis (only unusual result was "hazy") and the EBV test and a CMV test are both negative. Took a lung xray (normal) and an echocardiogram (fine, for my age). I took several days off work and basically slept the whole time and now am better, though not completely over this. It's still dragging on, especially the brain fog.
I have had dogs and cats for years, as well as rats, hamsters, birds, and tropical fish. I was also around cattle and horses for many years as a young person. I had Bird Fancier's disease about 5 years ago, which is why I ultimately went in to the doctors as this was somewhat similar - a bit out of breath too easily and so very tired all the time was how that started and I was afraid it had come back, even though I have had no close exposure to birds or even feather pillows in years. However, my O2 saturation levels are just fine, so that pretty much rules out a return of the BFD.
I had a wonking bad case of mono when I was 25 years old, swollen glands, positive test, etc., confirmed by a medical professional. Was sick in bed for several weeks. I was always told I could never get mono again.
So, the doc is saying "it's mono". I am still tired, though not nearly as badly, three weeks later, which is basically 7 to 8 weeks after this all started. The only thing that says "mono" is that blood test. No EBV antibodies, no positive CMV test. That doesn't follow, does it, really? I've asked him about the negative tests and he says they "really don't know a lot about mono, there's no money in research for it" and to just let time do the healing.
While I am getting better ~very~ slowly, I'm extraordinarily uncomfortable with that answer. I was never asked about pets, so toxoplasmosis was never on the table. In fact, we do have a rat right now that has a serious (and will be eventually fatal for it) lung disease that is common in rats. And I did spend at least 40 years with at least one cat in the household and fostered cats from various cat shelters over the last 20 years.
I wonder if it's worth bringing any of that up at this point? I've emailed him and asked him one last time, could the mono test be a false positive caused by some other infection? The ferritin would seem to indicate there was some sort of immune thing going on. But I've received no response at all.
I'll wait a few more day, and then will ask to see another doctor - which will mean I'll have to switch PCPs if I can find one that is accepting new patients in the HMO, as this will not go down well with the first one. HOWEVER, if there is really a way to have mono with nothing but the mono blood test indicating it, there's no need to do this.
Any info at all for me?
COMMUNITY LEADER
Okay sounds good. I bet he will say the mono spot test (or mono test) which is untrue. This is a good link.
http://www.cdc.gov/epstein-barr/laboratory-testing.html
Regarding vitamin D It is in International units or IU and you should get retested now that it has been a year it could have dropped. the amount of vitamin D you take is IU but the lab results is in ng/mL. My doctor keeps me at 60mg because I need to build bone mass. I have osteoporosis from sitting too much due to a back injury. But now I'm out at the gym. I know what you mean by the gatekeeper at an HMO. Good luck. Maybe you can change your primary care provider if he doesn't do anything.
Yes your lymphocytes were normal. I assume your overall white blood cell count was normal too? If so there is no bacterial infection and probably no viral either. It may be hormonal or vitamin deficiency. Also, possible iron deficiency anemia. Are you having heavy periods at any point? I am going into menopause but not there yet, and getting heavy periods all of a sudden. Doctor said this could happen where you get light spotting then heavy then nothing for a month or two so that is what is going on with me. So you never know. I'm 52. I got hypothryroid about 2 years ago and got really wiped out fatigued. I take synthroid. But I am still tired off and on. I'm also Iron deficient due to a medication. So if you are taking any new medications that is another thing to discuss.
Take care,
mkh9
http://www.cdc.gov/epstein-barr/laboratory-testing.html
Regarding vitamin D It is in International units or IU and you should get retested now that it has been a year it could have dropped. the amount of vitamin D you take is IU but the lab results is in ng/mL. My doctor keeps me at 60mg because I need to build bone mass. I have osteoporosis from sitting too much due to a back injury. But now I'm out at the gym. I know what you mean by the gatekeeper at an HMO. Good luck. Maybe you can change your primary care provider if he doesn't do anything.
Yes your lymphocytes were normal. I assume your overall white blood cell count was normal too? If so there is no bacterial infection and probably no viral either. It may be hormonal or vitamin deficiency. Also, possible iron deficiency anemia. Are you having heavy periods at any point? I am going into menopause but not there yet, and getting heavy periods all of a sudden. Doctor said this could happen where you get light spotting then heavy then nothing for a month or two so that is what is going on with me. So you never know. I'm 52. I got hypothryroid about 2 years ago and got really wiped out fatigued. I take synthroid. But I am still tired off and on. I'm also Iron deficient due to a medication. So if you are taking any new medications that is another thing to discuss.
Take care,
mkh9
Hi MKH9.
I have put on 10 pounds in the last two months. But I've also been much less active than normal so I can't blame the weight gain on anything specific - I don't eat a tremendous amount of food, but if I'm not burning it, that would explain the spare tire I now have around my middle.
They never rechecked, nor said I needed recheck, on the vitamin D. I take 2000mg every other day since that's the size the pills are (they recommended 1000 mg per day). I've been taking it for a year now, although I do forget it from time to time. When tested last year it was 18, normal range of 30-80. The legend with this test says: Vitamin D,25-OH Total <= 20 ng/mL is considered deficient Vitamin D,25-OH Total between 21 and 29 is considered insufficient.
Lymphocytes = 31, normal range 19-53%
Possibly some other unknown virus?
I am going to email one last time and ask for an explanation of why he thinks it's mono. And specifically, what blood test was used and the results found. If I don't get a response, I'm switching providers as that's just inexcusable to not answer. I no longer have confidence that this guy will pursue this to the end - he'll wait to see if I get better on my own, or if I get sicker and he can hand me off to a specialist, since he's just the gatekeeper there at the HMO.
If anything jumps out to you, I'd love to hear your ideas. Thanks.
I have put on 10 pounds in the last two months. But I've also been much less active than normal so I can't blame the weight gain on anything specific - I don't eat a tremendous amount of food, but if I'm not burning it, that would explain the spare tire I now have around my middle.
They never rechecked, nor said I needed recheck, on the vitamin D. I take 2000mg every other day since that's the size the pills are (they recommended 1000 mg per day). I've been taking it for a year now, although I do forget it from time to time. When tested last year it was 18, normal range of 30-80. The legend with this test says: Vitamin D,25-OH Total <= 20 ng/mL is considered deficient Vitamin D,25-OH Total between 21 and 29 is considered insufficient.
Lymphocytes = 31, normal range 19-53%
Possibly some other unknown virus?
I am going to email one last time and ask for an explanation of why he thinks it's mono. And specifically, what blood test was used and the results found. If I don't get a response, I'm switching providers as that's just inexcusable to not answer. I no longer have confidence that this guy will pursue this to the end - he'll wait to see if I get better on my own, or if I get sicker and he can hand me off to a specialist, since he's just the gatekeeper there at the HMO.
If anything jumps out to you, I'd love to hear your ideas. Thanks.
COMMUNITY LEADER
Also, how low was your vitamin D? If very low I have seen many people on here say that it really made them feel bad. So I would still get your serum iron tested and if that is normal (no anemia). Then if you are taking vitmin D it will take a while to get back to normal. When it does you should retest a few times. So after it its normal retest in 3 months then again in 6 months to make sure you are not over doing the Vitamin D. Then take again in a year. Mine was low but not that low and I started only taking 2000IU a day but after a year for some reason i needed double that amount. So it can change. Keep an eye on it. If your iron is off. Let me know. You will also have to retest severeal times to stay on the right amount of iron if that is off. Has your weight changed? No dramatic weight loss or gain in a short amount of time?
mkh9
mkh9
COMMUNITY LEADER
Okay, at this point you are negative for mono, normal thyroid, EBV normal, and the CBC is normal. still not 100% convinced about the iron deficiency. That is still possible. Your hemoglobin doesn't drop until you have 3-4 stage anemia and you can feel terrible. I have been there. So you might want to get a iron test and repeat the ferritin. With mononucleosis your lymphocytes not monocytes will be high. They are atypical lymphocytes. Even though they call it mononucleosis. I know it should be the monocytes but it isn't .
Not sure what else. I will have to think about it.
mkh9
Not sure what else. I will have to think about it.
mkh9
Hi MKH9. I have copies of all the lab work, as well as lab work from this time last year for many of these blood tests for comparison purposes.
Don't think it's related, but last year I was having a problem with spontaneous bruising and was slow to stop bleeding. The "usual" blood tests were run. Was sent to a hematologist and my results were right on the borderline, although last year the first blood test I had for PTT time came back high at 35.5, with the normal range being 25-34 seconds. They redid it later and it came back within the normal range, said to not worry about it. I was also diagnosed as being seriously deficient in Vitamin D, so they put me on supplements. Bruising isn't as bad now, but I still do take a while to stop bleeding. Probably a red herring for the current problems.
Answers to your questions:
Ferritin was flagged as high 176 with the normal range being 13 - 150 ng/ml
CBC was done. Hemoglobin (I assume "Iron") was 86 with the normal range being 37 - 145 mcg/dL
RDW was 13, normal range was 12 - 14
Urine - cultured, nothing. appearance = "slighly hazy" which was flagged as abnormal.
BUN= 16, normal range 6-20 (This time last year it was 19.)
Creatinine was .90, normal range is .51 to .95 mg/dL (results of the same test this time last year at .82)
TSH 3.31, normal range .27 - 4.20 uIU/dL (last year TSH was 3.98)
T4 9.7, normal range 4.7 - 10.9
Thyroid Peroxidase AB was 7.0, normal value 0 - 34 IU/mL
Literally, he threw just about every normal blood test at me. They stuck me in both arms, saying they needed to to try to figure out where "an infection" was.
I would have thought the monocyte count would be high in mono, or am I misunderstanding that? My count was 10, with the normal range being 5%-12%.
No, I've never been bitten by a rat in my entire life. Cats, yes. Dogs, yes, Birds, yes. Siblings, spiders, scorpions, millipedes, chiggers, mosquitos (I'm a freaking mosquito magnet), and ticks, yes ( although that was 30 years ago on the last one.
I have no idea if it was the mono spot test or not. The results simply state "mono screen, blood - positive."
CMG IGG/IGM antibody panel negative.
E - B Early Antigen Antibody ab was 6.7, normal range 0.0-10.9 U/mL
Had a CBC, metabolic panel. Everything is in the "normal" range.
The only other things that stand out are only in comparison to a test done a year ago are liver function enzymes. Then AST was 18, normal range 0-32 U/L, this test it was 29 (same range for normal). Then ALT was 22, normal range 0 - 33 U/L, now is 30. So, not out of the normal range, but much higher than this time last year.
I have no sore throat. No sneezing, no runny nose, no inflamed lymph nodes (of which I'm aware). My arse is just dragging badly and my brain has the equivalent of mental hiccups. My memory is not good, either.
I thought it might be allergies, as so many things are blooming. Tried three different allergy medications. Benadryl made me so hyper I was bouncing off the walls, as it always does. But no other changes.
I was able to go walk at the grocery store for 10 minutes today, and puttered a bit with my houseplants, so I am definitely improved. Three weeks ago I was dragging my sorry backside home after work, having a bowl of cheerios for supper because I didn't have to cook it, and falling asleep while trying to give the rat his nightly "lap time" and watching Wheel of Fortune. (Which comes on at 7pm here.)
Since physically I am recovering I'm not quite as worried, although the mental fog is still there and THAT is concerning.
Not sure what to do. I'd written to the doc via the MyChart option we have, on Monday, asking if this could possibly be a false positive caused by something else, and he has not responded. I'll try his nurse tomorrow. If no response by next week, I guess I find a different doctor, since he doesn't want to be bothered to explain this.
If you have any ideas, with the info I've been able to provide, I'd certainly welcome them.
Don't think it's related, but last year I was having a problem with spontaneous bruising and was slow to stop bleeding. The "usual" blood tests were run. Was sent to a hematologist and my results were right on the borderline, although last year the first blood test I had for PTT time came back high at 35.5, with the normal range being 25-34 seconds. They redid it later and it came back within the normal range, said to not worry about it. I was also diagnosed as being seriously deficient in Vitamin D, so they put me on supplements. Bruising isn't as bad now, but I still do take a while to stop bleeding. Probably a red herring for the current problems.
Answers to your questions:
Ferritin was flagged as high 176 with the normal range being 13 - 150 ng/ml
CBC was done. Hemoglobin (I assume "Iron") was 86 with the normal range being 37 - 145 mcg/dL
RDW was 13, normal range was 12 - 14
Urine - cultured, nothing. appearance = "slighly hazy" which was flagged as abnormal.
BUN= 16, normal range 6-20 (This time last year it was 19.)
Creatinine was .90, normal range is .51 to .95 mg/dL (results of the same test this time last year at .82)
TSH 3.31, normal range .27 - 4.20 uIU/dL (last year TSH was 3.98)
T4 9.7, normal range 4.7 - 10.9
Thyroid Peroxidase AB was 7.0, normal value 0 - 34 IU/mL
Literally, he threw just about every normal blood test at me. They stuck me in both arms, saying they needed to to try to figure out where "an infection" was.
I would have thought the monocyte count would be high in mono, or am I misunderstanding that? My count was 10, with the normal range being 5%-12%.
No, I've never been bitten by a rat in my entire life. Cats, yes. Dogs, yes, Birds, yes. Siblings, spiders, scorpions, millipedes, chiggers, mosquitos (I'm a freaking mosquito magnet), and ticks, yes ( although that was 30 years ago on the last one.
I have no idea if it was the mono spot test or not. The results simply state "mono screen, blood - positive."
CMG IGG/IGM antibody panel negative.
E - B Early Antigen Antibody ab was 6.7, normal range 0.0-10.9 U/mL
Had a CBC, metabolic panel. Everything is in the "normal" range.
The only other things that stand out are only in comparison to a test done a year ago are liver function enzymes. Then AST was 18, normal range 0-32 U/L, this test it was 29 (same range for normal). Then ALT was 22, normal range 0 - 33 U/L, now is 30. So, not out of the normal range, but much higher than this time last year.
I have no sore throat. No sneezing, no runny nose, no inflamed lymph nodes (of which I'm aware). My arse is just dragging badly and my brain has the equivalent of mental hiccups. My memory is not good, either.
I thought it might be allergies, as so many things are blooming. Tried three different allergy medications. Benadryl made me so hyper I was bouncing off the walls, as it always does. But no other changes.
I was able to go walk at the grocery store for 10 minutes today, and puttered a bit with my houseplants, so I am definitely improved. Three weeks ago I was dragging my sorry backside home after work, having a bowl of cheerios for supper because I didn't have to cook it, and falling asleep while trying to give the rat his nightly "lap time" and watching Wheel of Fortune. (Which comes on at 7pm here.)
Since physically I am recovering I'm not quite as worried, although the mental fog is still there and THAT is concerning.
Not sure what to do. I'd written to the doc via the MyChart option we have, on Monday, asking if this could possibly be a false positive caused by something else, and he has not responded. I'll try his nurse tomorrow. If no response by next week, I guess I find a different doctor, since he doesn't want to be bothered to explain this.
If you have any ideas, with the info I've been able to provide, I'd certainly welcome them.
COMMUNITY LEADER
Hi and sorry you haven't been feeling well. We are not doctors on here but I am a Clinical Microbiologist Scientist. I can try to help you. If you are talking about the mono Spot test it is worthless. It gives a lot of false positives. You can look on the CDC website and it will tell you the same thing. So I don't agree with this doctor. Some of them are misinformed for some reason about the spot test being really good. It is only good when you have mono symptoms as a kid and never had it before and you have a positive mono spot it directs them to mono and then your EBV comes up positive. But if you already had it (which 90% of us have had by adulthood) then you don't have it. Also, your EBV would have been positive for the other antibodies especially the early antibodies for IgM.
So, regarding your thyroid is it was in normal range? You have signs of hypothyroidism. I wonder if you should get retested and also get tested for Hashimoto's disease (autoimmune test for hypothyroid), just to be sure.
Then the other thing that stands out is the high ferritin. How high was it and what your lab ranges? This could mean a few things one is anemia or also kidney problems. Did you get a complete blood count done? If so was your hemoglobin normal? what about the RDW? was it high? that would tell me something. So you would be very tired if you had Iron deficiency anemia and get brain fog as well. I have had it and I know. So you should get a CBC and Iron and Iron % saturation done and transferrin.
Did they check your urine sample? you said it was cloudy? Did it have any bacteria, white blood cells, casts anything abnormal? Have you had a blood chemistry done for BUN/ creatinine? This would check your kidney function and if you can get your liver enzymes checked as well.
If these things are all normal then I might pursue the animal issues such as toxoplasmosis and so forth. But I would make sure the obvious things are checked first then we can go from there.
You were never bit by the rats were you? Since you don't have a high fever I doubt you have rat bite fever or anything like that. So, let me know what you think.
regards,
mkh9
So, regarding your thyroid is it was in normal range? You have signs of hypothyroidism. I wonder if you should get retested and also get tested for Hashimoto's disease (autoimmune test for hypothyroid), just to be sure.
Then the other thing that stands out is the high ferritin. How high was it and what your lab ranges? This could mean a few things one is anemia or also kidney problems. Did you get a complete blood count done? If so was your hemoglobin normal? what about the RDW? was it high? that would tell me something. So you would be very tired if you had Iron deficiency anemia and get brain fog as well. I have had it and I know. So you should get a CBC and Iron and Iron % saturation done and transferrin.
Did they check your urine sample? you said it was cloudy? Did it have any bacteria, white blood cells, casts anything abnormal? Have you had a blood chemistry done for BUN/ creatinine? This would check your kidney function and if you can get your liver enzymes checked as well.
If these things are all normal then I might pursue the animal issues such as toxoplasmosis and so forth. But I would make sure the obvious things are checked first then we can go from there.
You were never bit by the rats were you? Since you don't have a high fever I doubt you have rat bite fever or anything like that. So, let me know what you think.
regards,
mkh9
And as you can tell from my writing, I'm leaving words out of sentences. I have two advanced degrees and make a good portion of my living by writing. There are days when I sound like an absolute idiot, leaving verbs out...
The first paragraph should have stated that I've had all the usual infections children had in the same years as I was a child. Literally, I think my family had every single one of the things that kids are now routinely immunized against.
The first paragraph should have stated that I've had all the usual infections children had in the same years as I was a child. Literally, I think my family had every single one of the things that kids are now routinely immunized against.
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