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.

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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@bbresson

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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Hi @bbresson, welcome. I moved your question about recommendation for EBV specialists in the Phoenix area to this existing discussion:
– Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV) https://connect.mayoclinic.org/discussion/ebv-chronic/

I did this so you can connect with other members like @bt123 @kefnb @tricia13 @seehawkeye @mrmie @cknight @lesd70 who may be able to provide recommendations and answer questions for you.

You might also be interested in this related and active discussion:
– Treatment for chronic Epstein-Barr virus (EBV) https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

Bresson, If Mayo Clinic is an option for you, here is more information about how to submit a request for an appointment online: http://mayocl.in/1mtmR63

It sounds like you might benefit from the multidisciplinary approach of Mayo Clinic.

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@colleenyoung

Hi @bbresson, welcome. I moved your question about recommendation for EBV specialists in the Phoenix area to this existing discussion:
– Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV) https://connect.mayoclinic.org/discussion/ebv-chronic/

I did this so you can connect with other members like @bt123 @kefnb @tricia13 @seehawkeye @mrmie @cknight @lesd70 who may be able to provide recommendations and answer questions for you.

You might also be interested in this related and active discussion:
– Treatment for chronic Epstein-Barr virus (EBV) https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

Bresson, If Mayo Clinic is an option for you, here is more information about how to submit a request for an appointment online: http://mayocl.in/1mtmR63

It sounds like you might benefit from the multidisciplinary approach of Mayo Clinic.

Jump to this post

Thank you

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