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?EBV labs with ongoing flulike illness
I have had symptoms, and thought I had a 3 week flu in Dec 2013 along with some strange eye symptoms (fever up to 101, headaches, muscle aches, exhaustion (falling asleep sitting up and 3 times while driving on a highway on Friday afternoons), strange eye symptoms and vision changes)difficulty thinking and concentrating, dizziness and many almost falls, moving pains in hips, knees, shoulders usually for a couple of days at a time and location changes. In 2015 I missed 8 weeks of work due to eye problems, pneumonia and viral symptoms (sore throat, mouth, tongue, swollen glands of neck, fever, loss of 10 lbs in 10 days due to couldn't eat). I do have long standing celiac, hashimoto's, adrenal insufficiency along with multiple allergies, asthma, osteoporosis, kidney stones, and intermittent hydronephrosis. The only changes were that my hydrocortisone dose was increased to 70 mg when I had pneumonia a year ago and had a very difficult time getting back to my regular dose- it took until February 2015. I am back to 30 mg. I did leave my 30 hour a week job in early April 2015 due to medical issues-I just was not functioning well at work and was unable to keep up.
I have had all kinds of labwork done which until the most recent had not showed anything much.
The recent labwork did show some high numbers for EBV, and HSV:
EBV Nuclear AG (EBNA) AB (IGG) 2.84 high, Range below 0.9
EBV Viral Capsid AG (VCA) AB (IGG) 5.00 high Range 0.91-1.09
This was tested one month before and was 3.77
EBV Early Antigen D AB (IGG) Negative below 0.9 which is normal
Herpes Virus 6 IGG 1:10 high Did not get Range
HSV 2 IG 2.33 high Range .90-1.10
HSV 1 IG 5.00 high Range below 0.89
HSV 1 and 2 AB (IGM, IFA w/RFL to titer) all negative, no number given
TSH 0.35 low Range 0.40-4.50
T3 uptake 38 high Range 22-35
My endocrinologist keeps my TSH a little on the hyperthyroid side to control autoimmune activity in the thyroid gland
Mycoplasma Pneumonia Antibody (IGG) 1.5 Range below 0.9
Mycoplasma Pneumonia Antibody (IGM) 20 Range below 769
Chlamydophilia Pneumonia AB (IGG, IGA, IGM) Antibody not detected
FTA-ABS was reactive the first time and non reactive a few weeks later along with 2 other defining tests which were also negative.
I had many more labs done for other autoimmune diseases, other antibody tests, lyme and the usual for kidney, liver, CBC. etc plus some really unusual tests. Nothing else was revealed.
My biggest question is that if this is an ongoing EBV that my body is not clearing because of other autoimmune issues, can the strange eye symptoms and loss of vision be from EBV as my vision has become increasingly worse and the 4 eye specialist don't agree on what is going on, or their opinion changes. I have been advised to drive only when I absolutely have to as my vision has gone from 20/25 to 20/60 in left eye and 20/25 to 20/70 in the right eye. 20/70 is the legal limit for daytime driving, 20/40 for night driving. Slit lamp bright light test is 20/200 in the left eye and 20/300 in the right eye. So no night driving and no bright sunlight driving. This is all from Dec 2013 as well.
Also is ongoing EBV contagious if this is actually what is making me feel horrible? Any insight on the labs?
Thank you very much.
Garden 86
I have had all kinds of labwork done which until the most recent had not showed anything much.
The recent labwork did show some high numbers for EBV, and HSV:
EBV Nuclear AG (EBNA) AB (IGG) 2.84 high, Range below 0.9
EBV Viral Capsid AG (VCA) AB (IGG) 5.00 high Range 0.91-1.09
This was tested one month before and was 3.77
EBV Early Antigen D AB (IGG) Negative below 0.9 which is normal
Herpes Virus 6 IGG 1:10 high Did not get Range
HSV 2 IG 2.33 high Range .90-1.10
HSV 1 IG 5.00 high Range below 0.89
HSV 1 and 2 AB (IGM, IFA w/RFL to titer) all negative, no number given
TSH 0.35 low Range 0.40-4.50
T3 uptake 38 high Range 22-35
My endocrinologist keeps my TSH a little on the hyperthyroid side to control autoimmune activity in the thyroid gland
Mycoplasma Pneumonia Antibody (IGG) 1.5 Range below 0.9
Mycoplasma Pneumonia Antibody (IGM) 20 Range below 769
Chlamydophilia Pneumonia AB (IGG, IGA, IGM) Antibody not detected
FTA-ABS was reactive the first time and non reactive a few weeks later along with 2 other defining tests which were also negative.
I had many more labs done for other autoimmune diseases, other antibody tests, lyme and the usual for kidney, liver, CBC. etc plus some really unusual tests. Nothing else was revealed.
My biggest question is that if this is an ongoing EBV that my body is not clearing because of other autoimmune issues, can the strange eye symptoms and loss of vision be from EBV as my vision has become increasingly worse and the 4 eye specialist don't agree on what is going on, or their opinion changes. I have been advised to drive only when I absolutely have to as my vision has gone from 20/25 to 20/60 in left eye and 20/25 to 20/70 in the right eye. 20/70 is the legal limit for daytime driving, 20/40 for night driving. Slit lamp bright light test is 20/200 in the left eye and 20/300 in the right eye. So no night driving and no bright sunlight driving. This is all from Dec 2013 as well.
Also is ongoing EBV contagious if this is actually what is making me feel horrible? Any insight on the labs?
Thank you very much.
Garden 86
It has been awhile since you replied. sorry it took so long for me to reply. There have been some serious medical things going on with other members of the family.
I had another MRI of the brain with added gadolinium at the end for contrast. I had previous MRI's of the brain on 8-15-2006 and 8-17-202004.
History: Blurred vision, seeing sunbursts,etc, gait instability, vertigo and low grade fever. Dropping things with the right hand.
Findings were multiple scattered foci of increased T2 weighted and flair signal intensity is seen throughout the deep white matter tracts, these are more conspicuous than in the previous study, which was performed at a lower field strength, 1.5 T. There are no areas of restricted diffusion to indicate an acute ischemic event. No intra or extra axial hemorrhage or fluid collection is present. No mass, edema or abnormal enhancement of the brain parenchyma is present. The vasculsr flow voids are patent. There is normal aeration of the mastoid air cells and imaged paranasal sinuses. No intra or extraconal, intra orbit mass or asymmetry is identified, the optic nerves are normal in appearance,
Impression is chronic microvascular ischemic changes throughout the deep white matter tracts, with no signs of acute ischemia, intracranial hemmorrage or mass.
I will be seeing my physician on June 22nd. I will talk to him then about some of your suggestions.
I am going to be away beginning tomorrow and plan to return on June 21st.
I guess the question is, if the above MRI results are due to small strokes or MS. This is the fifth time since 1984 that a physician has thought I may have MS due to bladder issues, back and leg issues, 3x vision changes, and now some memory and cognitive issues and a sensorineural hearing loss in both ears 2 years ago requiring state of the art hearing aids. Hearing fluctuates a bit too. Usually I have these changes and then almost go back to where I was before, so things have gradually gotten worse. I never connected all the changes as part of one specific diagnosis. I thought they were all separate health issues.
Thank you for taking the time to answer my questions.
Garden 86
I had another MRI of the brain with added gadolinium at the end for contrast. I had previous MRI's of the brain on 8-15-2006 and 8-17-202004.
History: Blurred vision, seeing sunbursts,etc, gait instability, vertigo and low grade fever. Dropping things with the right hand.
Findings were multiple scattered foci of increased T2 weighted and flair signal intensity is seen throughout the deep white matter tracts, these are more conspicuous than in the previous study, which was performed at a lower field strength, 1.5 T. There are no areas of restricted diffusion to indicate an acute ischemic event. No intra or extra axial hemorrhage or fluid collection is present. No mass, edema or abnormal enhancement of the brain parenchyma is present. The vasculsr flow voids are patent. There is normal aeration of the mastoid air cells and imaged paranasal sinuses. No intra or extraconal, intra orbit mass or asymmetry is identified, the optic nerves are normal in appearance,
Impression is chronic microvascular ischemic changes throughout the deep white matter tracts, with no signs of acute ischemia, intracranial hemmorrage or mass.
I will be seeing my physician on June 22nd. I will talk to him then about some of your suggestions.
I am going to be away beginning tomorrow and plan to return on June 21st.
I guess the question is, if the above MRI results are due to small strokes or MS. This is the fifth time since 1984 that a physician has thought I may have MS due to bladder issues, back and leg issues, 3x vision changes, and now some memory and cognitive issues and a sensorineural hearing loss in both ears 2 years ago requiring state of the art hearing aids. Hearing fluctuates a bit too. Usually I have these changes and then almost go back to where I was before, so things have gradually gotten worse. I never connected all the changes as part of one specific diagnosis. I thought they were all separate health issues.
Thank you for taking the time to answer my questions.
Garden 86
There a few notable points I discern from your reply.
1. Your high methylocobalamin finding could be a false positive if:
a. Your kidney function at the time of testing was impaired, preventing
methylmalonic acid (MMA) to be filtered from the blood, thus an MMA test
to determine methylocobalamin levels, would show HIGH levels of MMA,
which would indicate incorrectly high methylocobalamin.
MMA levels normally correlate with methylocobalamin levels.
b. You have a genetic defect causing a built-up of MMA
The reason I suspect a false positive is because the B vitamins are water-soluble and any excess above the storage capacity, gets excreted
in the urine!
This may have serious implications, where a possible false positive lab result indicating high methylocobalamin, was actually a deficiency!
Neurologic and methylation functions are methylocobalamin-dependent.
A Homocysteine CSF test would rule this in or out.
2. You may need to supplement with vitamin K2, as it will ensure that the metabolized calcium by the vit. D goes to bones, teeth and joints instead of
soft tissues.
3. Look into AOR Zymes as a possible replacement of Zenpep.
4. Individuals who are heterozygous (your case) for iron overload-related gene mutations are unlikely to have symptoms of iron overload and are not at significantly increased risk of developing the disease.
However, this does NOT exclude the possibility of developing the disease!
5.Perhaps certain things for which you were tested OK, in the past,
should be revisited, as some results as I mentioned could have been wrong
and other ones could have changed since the time of the original testing.
The HHV-6, Mycoplasma and B12 Methylocobalamin (in relation to neurological function and methylation) would be on top of my list, if I were in your situation.
Take care,
Niko
1. Your high methylocobalamin finding could be a false positive if:
a. Your kidney function at the time of testing was impaired, preventing
methylmalonic acid (MMA) to be filtered from the blood, thus an MMA test
to determine methylocobalamin levels, would show HIGH levels of MMA,
which would indicate incorrectly high methylocobalamin.
MMA levels normally correlate with methylocobalamin levels.
b. You have a genetic defect causing a built-up of MMA
The reason I suspect a false positive is because the B vitamins are water-soluble and any excess above the storage capacity, gets excreted
in the urine!
This may have serious implications, where a possible false positive lab result indicating high methylocobalamin, was actually a deficiency!
Neurologic and methylation functions are methylocobalamin-dependent.
A Homocysteine CSF test would rule this in or out.
2. You may need to supplement with vitamin K2, as it will ensure that the metabolized calcium by the vit. D goes to bones, teeth and joints instead of
soft tissues.
3. Look into AOR Zymes as a possible replacement of Zenpep.
4. Individuals who are heterozygous (your case) for iron overload-related gene mutations are unlikely to have symptoms of iron overload and are not at significantly increased risk of developing the disease.
However, this does NOT exclude the possibility of developing the disease!
5.Perhaps certain things for which you were tested OK, in the past,
should be revisited, as some results as I mentioned could have been wrong
and other ones could have changed since the time of the original testing.
The HHV-6, Mycoplasma and B12 Methylocobalamin (in relation to neurological function and methylation) would be on top of my list, if I were in your situation.
Take care,
Niko
Thank you so much for your reply. Yes, it is pretty complicated. I can answer a few of your questions now. Some I need to look for the details to answer, as docs have been going round and round for years about one thing or another. The labs were all done at Quest. Some labs I have done at a Community Hospital, but none of those are the above labs.
My iron levels a while back, probably 6 or 8 years now, were very high and other tests to go along with them were off. I had an MRI I think of upper and lower abdomen which didn't show abnormalities associated with hemochromatosis. It did show gallstones which I have had for many years and they haven't caused any difficulties that I know of so far. The doctors questioned hemochromatosis due to the high iron levels and other blood tests. I have not taken iron supplements as it has never agreed with my stomach, not even in a multivitamin. I did have one gene only and I think you need two genes for hematochromatosis. My methyocobalmin B12 levels were also running very high around 1200 for quite a few years which is strange since I had malabsorption from celiac for many years, which had been confirmed by testing. Levels of everything are now in the normal range. I also had secondary parathyroidism, and very low vitamin D levels at that time. Vitamin D was below 10. Now last time Vitamin D was 96 during the winter, and I was told to reduce dose to 5,000 4 days a week instead of 7 days a week. i do not spend time in the sun as the heat really bothers me.
My last malabsorption tests were also normal just about normal a year ago.
I am still taking an enteric coated prescription enzyme called Zenpep when I eat. I have tried a couple of times taking non prescription, but haven't been successful yet.
I was on folic acid for a while for I think high homocysteine levels. That I believe was normal last time and I haven't had to take folic acid for years.
I was seen by a neurosurgeon and specialized urologist at Beth Israel due to a back injury with hydronephrosis of the kidney and bladder nerve disfunction with retention in 1984. They did all the testing available at the time for MS and it was negative.
I am not sure what testing they are doing now for MS. I may have had it done again 6 or 8 years ago with a Rheumatologist at Brigham, and possibly a few months ago when over 100 tests were done. If you tell me the tests, I can look them up.
I did look up Herpes Virus 6 on my labs and it did say exactly what you wrote above.
I also had an MRI of the brain 10 years ago to check on a Pituitary Adenoma that they had been watching since I was about 30 years old. This never interfered with my vision as I had annual photos, humphrey Visual field Tests and MRI's once in a while along with Prolactin levels twice a year. That was fine, in fact they could not even see an adenoma, although scattered white matter was seen which they could not identify.
I am having another MRI of the brain as soon as it can be scheduled.
I have read some of your answers to others, and you seem to be able to put some of the pieces to the medical puzzles that writers present together in an understandable way. That is a skill that not too many medical people have. It has been difficult for me, as some of the specialists, look only at their specialty and not the entire picture.
Thank you so much, again.
Garden 86
My iron levels a while back, probably 6 or 8 years now, were very high and other tests to go along with them were off. I had an MRI I think of upper and lower abdomen which didn't show abnormalities associated with hemochromatosis. It did show gallstones which I have had for many years and they haven't caused any difficulties that I know of so far. The doctors questioned hemochromatosis due to the high iron levels and other blood tests. I have not taken iron supplements as it has never agreed with my stomach, not even in a multivitamin. I did have one gene only and I think you need two genes for hematochromatosis. My methyocobalmin B12 levels were also running very high around 1200 for quite a few years which is strange since I had malabsorption from celiac for many years, which had been confirmed by testing. Levels of everything are now in the normal range. I also had secondary parathyroidism, and very low vitamin D levels at that time. Vitamin D was below 10. Now last time Vitamin D was 96 during the winter, and I was told to reduce dose to 5,000 4 days a week instead of 7 days a week. i do not spend time in the sun as the heat really bothers me.
My last malabsorption tests were also normal just about normal a year ago.
I am still taking an enteric coated prescription enzyme called Zenpep when I eat. I have tried a couple of times taking non prescription, but haven't been successful yet.
I was on folic acid for a while for I think high homocysteine levels. That I believe was normal last time and I haven't had to take folic acid for years.
I was seen by a neurosurgeon and specialized urologist at Beth Israel due to a back injury with hydronephrosis of the kidney and bladder nerve disfunction with retention in 1984. They did all the testing available at the time for MS and it was negative.
I am not sure what testing they are doing now for MS. I may have had it done again 6 or 8 years ago with a Rheumatologist at Brigham, and possibly a few months ago when over 100 tests were done. If you tell me the tests, I can look them up.
I did look up Herpes Virus 6 on my labs and it did say exactly what you wrote above.
I also had an MRI of the brain 10 years ago to check on a Pituitary Adenoma that they had been watching since I was about 30 years old. This never interfered with my vision as I had annual photos, humphrey Visual field Tests and MRI's once in a while along with Prolactin levels twice a year. That was fine, in fact they could not even see an adenoma, although scattered white matter was seen which they could not identify.
I am having another MRI of the brain as soon as it can be scheduled.
I have read some of your answers to others, and you seem to be able to put some of the pieces to the medical puzzles that writers present together in an understandable way. That is a skill that not too many medical people have. It has been difficult for me, as some of the specialists, look only at their specialty and not the entire picture.
Thank you so much, again.
Garden 86
Hi Garden 86. I'm sorry you're going through all this.
A truly challenging medical case.
Herpes Virus 6 IGG 1:10 should have read :
Herpes Virus 6 (IGG) 1:10 Borderline High Normal
According to to the theory of molecular mimicry in autoimmunity
T cells may be confusing HHV-6 with myelin protein, thus attacking the myelin, resulting in Neurological disturbances and damage.
HHV-6 has been associated with MS and while all we're saying here
is based on theoretical assumptions, it is a possibility that should not be
overlooked, to my opinion.
Also,do you know which lab was used for the mycoplasma pneumoniae AB and was it an EIA/ELISA serological essay?
Mycoplasma pneumoniae is a very resilient pathogen and it can easily evade detection. Your IgM 20 level could very well be a false negative!
Should this go untreated -it is notoriously difficult to treat because it also
it evades the immune system AND antibiotics have only bacteriostatic action-NOT bactreriocidal!- it may become a systemic infection.
Your immune system, being already compromised, would not have the
immediate & necessary bacteriocidal action against it, once it recognizes it's presence in your tissues (thanks to the bacteriostatic action of the abx).
Consider getting in touch with Dr. Garth Nicolson, he's a part-time contributor in MedHelp and the world's leading expert in Mycoplasma
Infections and Co-infections. Just do search here in Medhelp.
He's extremely approachable- I met him a few years ago at a conference.
You could also have low methylation issues, which would cause high homocysteine levels, high histamine levels and a lot more!
This would also be consistent with low methyocobalmin B12 and methylfolate (both neurological forms of cobalamin and folate, respectively)
even if the non neurological forms of these are normal or high!!!
High homocysteine has been associated with various eye issues,
among many other conditions.
Have you ever been tested? Let me know, because this opens another
big chapter, which could explain a lot of things.
BTW EBV is highly contagious. It's passed on mainly through saliva.
The good news is that many people only develop mild symptoms and in most cases EBV remains dormant in the host's body.
I hope this helps and I know you will have a lot of questions.
Please feel free to post again or message me, however, my comments and suggestions are not intended to replace medical advice.
Best wishes,
Niko
A truly challenging medical case.
Herpes Virus 6 IGG 1:10 should have read :
Herpes Virus 6 (IGG) 1:10 Borderline High Normal
According to to the theory of molecular mimicry in autoimmunity
T cells may be confusing HHV-6 with myelin protein, thus attacking the myelin, resulting in Neurological disturbances and damage.
HHV-6 has been associated with MS and while all we're saying here
is based on theoretical assumptions, it is a possibility that should not be
overlooked, to my opinion.
Also,do you know which lab was used for the mycoplasma pneumoniae AB and was it an EIA/ELISA serological essay?
Mycoplasma pneumoniae is a very resilient pathogen and it can easily evade detection. Your IgM 20 level could very well be a false negative!
Should this go untreated -it is notoriously difficult to treat because it also
it evades the immune system AND antibiotics have only bacteriostatic action-NOT bactreriocidal!- it may become a systemic infection.
Your immune system, being already compromised, would not have the
immediate & necessary bacteriocidal action against it, once it recognizes it's presence in your tissues (thanks to the bacteriostatic action of the abx).
Consider getting in touch with Dr. Garth Nicolson, he's a part-time contributor in MedHelp and the world's leading expert in Mycoplasma
Infections and Co-infections. Just do search here in Medhelp.
He's extremely approachable- I met him a few years ago at a conference.
You could also have low methylation issues, which would cause high homocysteine levels, high histamine levels and a lot more!
This would also be consistent with low methyocobalmin B12 and methylfolate (both neurological forms of cobalamin and folate, respectively)
even if the non neurological forms of these are normal or high!!!
High homocysteine has been associated with various eye issues,
among many other conditions.
Have you ever been tested? Let me know, because this opens another
big chapter, which could explain a lot of things.
BTW EBV is highly contagious. It's passed on mainly through saliva.
The good news is that many people only develop mild symptoms and in most cases EBV remains dormant in the host's body.
I hope this helps and I know you will have a lot of questions.
Please feel free to post again or message me, however, my comments and suggestions are not intended to replace medical advice.
Best wishes,
Niko
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