Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV)

Posted by grasshopper123 @grasshopper123, Aug 25, 2020

Hello
Can anyone recommend a doctor in California? Or...anywhere ? Which specialists deal in this disease? 💛🙏

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

ginaelise1 | @ginaelise1 | Feb 4 12:30pm

I would look outside the traditional system and find a functional medicine doctor. Specifically for Ozone Therapy

If you want to hear my story with EBV let me know.

markco1234 | @markco1234 | Mar 15 6:53pm

In reply to @mahsan "Can you tell your EBV Titers Please......." + (show)

Titers are unreliable, you need to get a EBV PCR/DNA whole blood test. It will measure the viral load of EBV in your blood.

joyfulyhis | @joyfulyhis | Mar 16 10:46am

In reply to @markco1234 "Titers are unreliable, you need to get a EBV PCR/DNA whole blood test. It will measure..." + (show)

Who can do this whole blood test? I live in Illinois.

markco1234 | @markco1234 | Mar 16 12:58pm

In reply to @joyfulyhis "Who can do this whole blood test? I live in Illinois." + (show)

Your doctor can order it, and a lab like Quest or LabCorp can do it. Ask for (EBV) PCR Quantitive, DNA PCR whole blood. You need to ask for PCR whole blood test, not serum.

joyfulyhis | @joyfulyhis | Mar 16 1:35pm

In reply to @markco1234 "Your doctor can order it, and a lab like Quest or LabCorp can do it. Ask..." + (show)

Thank you

Sent from Yahoo Mail for iPhone

angwolf37 | @angwolf37 | Apr 5 10:04am

In reply to @anne0230 "I find it very convenient the medical profession disregards EBV until I found out auto immune..." + (show)

Agree. They should have a vaccine after all of these years, with no excuses. This should be integrated in yearly labs as well, since 90% of the population has it, and it is easily passed on from parents to children. It's ridiculous that regular MD's are not even educated to this virus. It's all about the money.

mr117 | @mr117 | Nov 15 12:36am

In reply to @sueinmn "There is no way to tell what the survival rate is for any specific illness, as..." + (show)

@sueinmn I was diagnosed with EBV roughly 10 years ago. Also now in Stage 4 kidney failure. I also get told there is no treatment for it, but have developed extreme sensitivity to heat and also have CFS. I take a lot of vitamins which seem to help some with the CFS but there are times when I still sleep 16 hour days. Last year my dr found that my blood tests showed my light chains were off, and I also tested + for SGA (Schogrens A but not B strain). Went to specialist for that and was told no It was a false +. so again no answers. I too have a lot of teeth pain that comes and goes with no explanation. I see a chiropractor regularly to help with my jaw and neck and back pain.I have been doing lots of googling and saw an article that stated EBV was in the same family as the herpes virus (cold sores), which I also have. Yet there is a treatment for that with Zovirax, so wondering if that would/could help with EBV? Plan to ask my dr that next visit. Really tired of not being able to do anything much like I used to do.

Sue, Volunteer Mentor | @sueinmn | Nov 15 11:28am

In reply to @mr117 "@sueinmn I was diagnosed with EBV roughly 10 years ago. Also now in Stage 4 kidney..." + (show)

@mr117 I can understand your frustration with always feeling tired, it is a common issue with chronic illness. asking your doctor is absolutely the right approach, as your full health history helps determine the appropriate treatment for you. Members of Mayo Connect are fellow travelers in your health journey, not medical professionals.

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