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

[BFG]

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?

 

[snowathlete]

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.

 

[Ema]

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

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.

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?

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

 

[BFG]

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.

 

[Sushi]

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.

 

[BFG]

Thanks for the replies everyone

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]

 

[Sushi]

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

 

[mellster]

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.

 

[GcMAF Australia]

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.

 

[snowathlete]

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.
.

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

 

[GcMAF Australia]

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

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

 

[Sushi]

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

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]

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

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

 

[August59]

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!

 

[snowathlete]

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

 

[Lotus97]

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.

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]

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.

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

 

[Lotus97]

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

 

[BFG]

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.

 

[ashler]

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