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 group.

Specialists involved in the care of someone with CAEBV may include:
– Infectious disease specialist
– Immunologist
– Hematologist

Tagging fellow members, like @nataliem @mblack @jbri @dquick @michellebelle @kkathysan @lisajensen and others for their recommendations of centers that treat EBV.

Grasshopper, what specialists have you seen?

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@colleenyoung

Specialists involved in the care of someone with CAEBV may include:
– Infectious disease specialist
– Immunologist
– Hematologist

Tagging fellow members, like @nataliem @mblack @jbri @dquick @michellebelle @kkathysan @lisajensen and others for their recommendations of centers that treat EBV.

Grasshopper, what specialists have you seen?

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I haven’t seen any…only naturopathic doctors.

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Can anyone tell me what is fact for sure what is the survival rate for someone that has been diagnosed with Cronic Epsteen Barr Virous,

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@grasshopper123

I haven’t seen any…only naturopathic doctors.

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Do you mind sharing what the naturopathic doctors have advised that has helped you? I’ve only seen traditional doctors that have not helped. They think if your bloodwork is fine, then you must be fine. So far from the truth! I have heard of a place around Nashville that specializes in chronic fatigue, but it’s expensive. I found it online about a year or more ago. I don’t know what kind of results they get.

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@cknight

Can anyone tell me what is fact for sure what is the survival rate for someone that has been diagnosed with Cronic Epsteen Barr Virous,

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There is no way to tell what the survival rate is for any specific illness, as there are many forms of each one, as well as the general health of each patient. And there are treatments being developed or improved every year to treat previously incurable conditions. One of our member mentors, @merpreb, is a 27 year survivor of lung cancer.

You have not mentioned when you were diagnosed and what your current symptoms are. Do you have Chronic Active Epstein-Barr Virus (CAEPV) or intermittent recurring EBV? Are you under the care of a doctor for this?

Sue

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@nataliem

Do you mind sharing what the naturopathic doctors have advised that has helped you? I’ve only seen traditional doctors that have not helped. They think if your bloodwork is fine, then you must be fine. So far from the truth! I have heard of a place around Nashville that specializes in chronic fatigue, but it’s expensive. I found it online about a year or more ago. I don’t know what kind of results they get.

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I have been researching EBV/COVID-19 topics today. For the past 2 years I have been into research concerning possible medications/diet supplements that may be used in the prevention and early treatment of COVID-19 along with many on twitter and elsewhere. @drjohnhaiti This from a ResearchGate publication by Dr. AguirreChang is the most interesting finding so far.

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I had stage 5 EBV when I was 17 where I was in a coma, convulsed and vomited regularly. They tapped my Madula; I convulsed during the "24 hr stay flat" period and ended up loosing my speech and ability to walk or stand. I am now 70 but for the last 5 years I have been getting EBV again. Most recently after COVID vaccine I was down for 3-months of sleeping and horrible leg pain, foggy brain and no appetite. 6 months later (and 6-months ago) I got COVID and it took me down further. My liver is enlarged, I eat half my meals, I drink a gallon of liquid a day, pool aquatics 3x's a week, climb stairs and take care of my paralyzed husband. I sleep 11 hours each night and nap 2-hrs. in afternoon. My leg and ankle pain gets so bad, even sitting is not a good position. I elevate my legs super high B4 bedtime for 30 mins, 1-Melatonin, 2-CBD gummies and 2-accedaminaphin before bed just to stay asleep and not be awakened with the pain. My test last year shows the same numbers as last year EBV VCA lgG 138 U/ML, EBV VCA lgm 10 U/L, EBV NUCLEAR Antigen, IGG 51.6, EBV EA lgG 79.6. My numbers were about the same last year with little or no change. I am now green juicing and still eating chicken and veggies at night. I am exhausted and walk periodically for about 15 minutes and then have to lay down, not sit down, I am in too much leg pain. Please help me, I am in deep need of a form of relief. I know liquor is quicker and it does put you out of you pain, but I also know if you have EBV it is not the preferred treatment. No, I am not drinking.

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@colleenyoung

Specialists involved in the care of someone with CAEBV may include:
– Infectious disease specialist
– Immunologist
– Hematologist

Tagging fellow members, like @nataliem @mblack @jbri @dquick @michellebelle @kkathysan @lisajensen and others for their recommendations of centers that treat EBV.

Grasshopper, what specialists have you seen?

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I am looking for a doctor who specializes in CAEBV and takes insurance. I am currently seeing an Integrative Medicine doc, and have had some improvement – but he does not take insurance and I am running out of funds. So it is go broke or let nature take its course. Neither choice is acceptable.

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@bronz

I am looking for a doctor who specializes in CAEBV and takes insurance. I am currently seeing an Integrative Medicine doc, and have had some improvement – but he does not take insurance and I am running out of funds. So it is go broke or let nature take its course. Neither choice is acceptable.

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Bronz, that is a difficult position to find yourself in. Might Mayo Clinic be an option for your insurance coverage?

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I have had high EBV titer since being diagnosed with ME/CFS over 30 years ago. I have a Primary Care Doctor,
Cardiologist, Nephrologist, Endocrinologist. Not one of these people has suggested any treatment for EBV or suggested seeing another type of doctor. The information I get from these people is that there is no treatment. Also, no one seems to know what EBV can cause. All this is puzzling to me particularly since I started participating in the Mayo Connect groups and have discovered so many people who have high titers. It seems
rather strange. Are there Mayo physicians doing research on what this disease can do to the body and how it
affects immunity? Are there physicians anywhere doing this research. If there are, they're not publishing material available to the the general public and apparently physicians don't know about this research or, I hate to say this, don't care about it. Tests for EBV should be included on all yearly blood tests that are given as part of wellness exams. They aren't. If they were, a pattern might develop. In the meantime, all of us with high titers are left to research on our own. Very peculiar for something that turns out to be fairly common and could affect our well-being. Also, consider the fact that we're in the midst of a Covid epidemic. None of this makes sense.

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After my 2nd Covid shot I was walking to my car and could not walk a straight line. I got to my car and literally reclined my seat, rested for 30 minutes, drove home and went to bed. I slept for 4 days getting up intermitently to walk to the bathroom. My legs were so weak in my calves and thighs, I would just fall back into bed and sleep forever. After 2 months of this I went to my family physician and she ordered an EBV. I had had 2-bouts of it; once at 17 (stage 5 & hospitalized) and then at 58. Now 70 Y/O, still working and once very active, I am doing everything I can to stay vertical. I do cardio in the gym pool for 45 mins. but cannot climb up the steps to get out of the pool, my legs are like jelly with no muscle strength. My numbers have hardly changed in over a year. I did the green diet for 5 days and saw no change, no sugar in the diet and primarily organic chicken diet with organic vegetables. I have good days and bad days, but still am so weak and still need to nap. Everyone says this will pass, but I do not want to spend the rest of my life saying this will pass. I need relief! Any help is welcome.

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Similar to many of you within this group, I have found that I have never been successful diagnosed nor had any successful treatment. I have been diagnosed with autoimmune diseases; hashimoto's disease, rheumatoid arthritis, thyroid disease, etc. It was thought that I had lymphoma for a few months and keep testing for it. It seems clear that I have chronic EBV as my AG AB IGG result of over 600 and have continued to climb over the years.

Does anyone have any good doctors to recommend in the Phoenix/Mesa area?
I am looking into the Mayo clinic and chronic EBV specialists in this area, so if anyone has any info that would help I would greatly appreciate it! Infectious disease specialist, immunologist, hematologist and naturopathic doctors are other routes I have looked into, so if you have any highly rated docs, please send my way. Thank you for your help and sending good vibes out to all those on here who are also suffering.

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