Treatment for chronic Epstein-Barr virus (EBV)

This will be long and some of it may make zero since until the end * please read it I NEEd HELP!.. I had been feeling tired and what I could only describe to the doctors as a “general feeling of unwell” for 20 years now. When I first would get basic CBC done all was ok it seemed. I had a case of terrible pelvic pain for about 12 years and no one could figure out why! I had countless testing done put on antibiotics so many times for no reason,laprosopic surgery,Samples taken from my uterus ect.. I finaly had enough and found a doctor who actually listened and we decided to do a hysto to remove the cervix leaving the ovaries. I woke up to find I had one ovary because my right was sererly impacted with cysts hmm how that never got picked up on scans in beyond me. I am a mother of two age 39 and was always active and hiked, walked ect. In 2014 I was so fatigued I could nit stand it and felt terrible. I got sleep studies done blood work. I noticed a pattern with my blood work “your WBC is low some people run low”. I accepted this for a few years. Since my PCM could not give me answerers and made to feel like a hypochondriac, I started digging out blood work from long time ago and my WBC where always normal. SO I tell this to my PCM who also noticed RBC MPV problems Neutrophil problems ect and I was down to 98 lbs. He sent me to Hematology Oncology. There I had some very disturbing CBC’s. He ordered a battery of testing for everything under the sun (but not EBV). I had disturbing low counts on almost everything and pathology found expanding LGL T-cell in bone marrow and blood. Ok so he said no worries precursors for Leukemia these T-Cell problems are affecting my CD8+ and some CD4/CD8 double negative T-Cells showing mildly decreased expressions of CD2 and CD3. They accounted for 28.7 of T-cell and 7.4 of WBC. This was in 2014. We did the bone marrow biopsy said the same thing with some hypocelluar whatever. So I have no aswers other that its a “reactive” process however I have been tested for autoimmune disorders ect. All legative. Then in 2014 (mind you my doctor never told me any of these results thank goodness for patient portals) I had a 1.0% abnormal CD5-Positive population detected. CD19 positive light chain bearing B cells BRIGHT CD5 light chain. WHAT EVEN IS That, never told of it and how does that cell get there? So once again I ask the doctor umm whats that because when I look that up its cancer. I keep getting the I do not know. Then the next blood workup its GONE. The more I looked at my bloodwork the more things started popping up. In 2015 my LGL T-cell blasts are now at 31.7 Tcell and 9.6 WBC He does not know yet again. Aslo no clones present. Went that much higher from 3/15 that ws 28.7 and 7.4. I became concerned because I still felt like garbage and tired and anxiety ect ect. I decided to get a second opinion in September 2016. I went to Vanderbilt. He looked at what little he could get from them and asked if they ever checked for EBV? I said they took about 20 viles of blood when I started I thought I was tested for everything. He decided to check me for that and run another RA factor. Well I came back with a potitive EBV apparently active and apparently exposed not recently 4 blood tests where done. He was 99% sure this was my “reactive” process that they kept saying was the problem with my blood. I was also anemic with some other diagnosis from my serum testing. I took my EBV findings to my Oncologist and his statement was” I can not comment on what that doctor said” I say do you think this is whats causing this” again same answer. I am out of patients I am loosing weight again still tired unless I take meds to keep me awake. I have a constant worry that it will develop into cancer as the other doc said its a “hurry up and worry situation”. I have lost all muscle mass and so boney my rear end now has some weird discoloration. I have been sweating more have some chest pain shortness of breath and lower back calf pain going on for over a year! I do smoke so yes I know its terrible but I stated this habbit in 2014 after being put on meds to help my stay awake and my mental clarity it made me crave cigs and diet soda. I am at a total loss. I bought so many supplements, vitamines, silver, monolarum (spelling) from amazon. I am at a loss I am withering away at 39 I was doing ok until about the last 6 months. I am loosing my hair it will not grow and I need help asap. If chronic EBV is causing this I need some seriouse help. All I was told is do not play contact sports exercise ( thas good for ppl with muscles and energey) and keep my immune system up I rarely get like a cold or anything I am also concerned about these lumps in the back of my throat near my tonsils they do not look like they are supposed to be there yet my incompetent doc says nothing. I am at a loss as there are limited doctors here for Oncology and Should I see a infectious disease specialist I feel like a person with black plague like where did this EBV come from or start never had a diagnosis and married 20 years he never gets sick with it. I am very confused as to if its EBV or something else entirely. Was hoping perhaps others that have this T-Cell and B cell issue may have connected it to EBV. One doc says YES thats the reactive process one has no comment no dietary suggestions no supplemts nothing I google it and buy what ppl say works. HELP at the end of my rope. I uploaded some old CBCs so you can see the pattern of whats going on. Also my salivary glands in my mouth get swollen and the roof of my mouth also hurts and swollen with lumps not sores that come and go kn the bony part

Hello @gracie927,

Welcome to Connect, and thank you for sharing your history. I can imagine how frightening these symptoms must be, especially after doing all you can.

First, I'd like to give you some information for contacting Mayo Clinic. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

I would encourage you to view some of these active discussions on Mayo Clinic Connect:
– Male, 23, Possible Autoimmune Issues, Difficult to Diagnose: https://connect.mayoclinic.org/discussion/male-23-possible-autoimmune-issues-difficult-to-diagnose/
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/

I'm also tagging @dash99999 @mcpucho @sebley12, @brie87144, @wesbig, @crhp194, @debdeb, @meghan33, @emmie @jatl @cheryldotson @jenchaney727 @juliemd who have experienced some similar challenges (fatigue, autoimmune issues, EBV), and can likely relate.

@gracie, you might also want to look at this conversation about menopause in the Women's Health group:
Living with early menopause - let's chat: https://connect.mayoclinic.org/discussion/living-with-early-menopause-lets-chat/

I'm glad to know that you may want to get an opinion from Mayo Clinic; may I ask what did the culture show? Did your doctor recommend a high-protein diet?

This will be long and some of it may make zero since until the end * please read it I NEEd HELP!.. I had been feeling tired and what I could only describe to the doctors as a “general feeling of unwell” for 20 years now. When I first would get basic CBC done all was ok it seemed. I had a case of terrible pelvic pain for about 12 years and no one could figure out why! I had countless testing done put on antibiotics so many times for no reason,laprosopic surgery,Samples taken from my uterus ect.. I finaly had enough and found a doctor who actually listened and we decided to do a hysto to remove the cervix leaving the ovaries. I woke up to find I had one ovary because my right was sererly impacted with cysts hmm how that never got picked up on scans in beyond me. I am a mother of two age 39 and was always active and hiked, walked ect. In 2014 I was so fatigued I could nit stand it and felt terrible. I got sleep studies done blood work. I noticed a pattern with my blood work “your WBC is low some people run low”. I accepted this for a few years. Since my PCM could not give me answerers and made to feel like a hypochondriac, I started digging out blood work from long time ago and my WBC where always normal. SO I tell this to my PCM who also noticed RBC MPV problems Neutrophil problems ect and I was down to 98 lbs. He sent me to Hematology Oncology. There I had some very disturbing CBC’s. He ordered a battery of testing for everything under the sun (but not EBV). I had disturbing low counts on almost everything and pathology found expanding LGL T-cell in bone marrow and blood. Ok so he said no worries precursors for Leukemia these T-Cell problems are affecting my CD8+ and some CD4/CD8 double negative T-Cells showing mildly decreased expressions of CD2 and CD3. They accounted for 28.7 of T-cell and 7.4 of WBC. This was in 2014. We did the bone marrow biopsy said the same thing with some hypocelluar whatever. So I have no aswers other that its a “reactive” process however I have been tested for autoimmune disorders ect. All legative. Then in 2014 (mind you my doctor never told me any of these results thank goodness for patient portals) I had a 1.0% abnormal CD5-Positive population detected. CD19 positive light chain bearing B cells BRIGHT CD5 light chain. WHAT EVEN IS That, never told of it and how does that cell get there? So once again I ask the doctor umm whats that because when I look that up its cancer. I keep getting the I do not know. Then the next blood workup its GONE. The more I looked at my bloodwork the more things started popping up. In 2015 my LGL T-cell blasts are now at 31.7 Tcell and 9.6 WBC He does not know yet again. Aslo no clones present. Went that much higher from 3/15 that ws 28.7 and 7.4. I became concerned because I still felt like garbage and tired and anxiety ect ect. I decided to get a second opinion in September 2016. I went to Vanderbilt. He looked at what little he could get from them and asked if they ever checked for EBV? I said they took about 20 viles of blood when I started I thought I was tested for everything. He decided to check me for that and run another RA factor. Well I came back with a potitive EBV apparently active and apparently exposed not recently 4 blood tests where done. He was 99% sure this was my “reactive” process that they kept saying was the problem with my blood. I was also anemic with some other diagnosis from my serum testing. I took my EBV findings to my Oncologist and his statement was” I can not comment on what that doctor said” I say do you think this is whats causing this” again same answer. I am out of patients I am loosing weight again still tired unless I take meds to keep me awake. I have a constant worry that it will develop into cancer as the other doc said its a “hurry up and worry situation”. I have lost all muscle mass and so boney my rear end now has some weird discoloration. I have been sweating more have some chest pain shortness of breath and lower back calf pain going on for over a year! I do smoke so yes I know its terrible but I stated this habbit in 2014 after being put on meds to help my stay awake and my mental clarity it made me crave cigs and diet soda. I am at a total loss. I bought so many supplements, vitamines, silver, monolarum (spelling) from amazon. I am at a loss I am withering away at 39 I was doing ok until about the last 6 months. I am loosing my hair it will not grow and I need help asap. If chronic EBV is causing this I need some seriouse help. All I was told is do not play contact sports exercise ( thas good for ppl with muscles and energey) and keep my immune system up I rarely get like a cold or anything I am also concerned about these lumps in the back of my throat near my tonsils they do not look like they are supposed to be there yet my incompetent doc says nothing. I am at a loss as there are limited doctors here for Oncology and Should I see a infectious disease specialist I feel like a person with black plague like where did this EBV come from or start never had a diagnosis and married 20 years he never gets sick with it. I am very confused as to if its EBV or something else entirely. Was hoping perhaps others that have this T-Cell and B cell issue may have connected it to EBV. One doc says YES thats the reactive process one has no comment no dietary suggestions no supplemts nothing I google it and buy what ppl say works. HELP at the end of my rope. I uploaded some old CBCs so you can see the pattern of whats going on. Also my salivary glands in my mouth get swollen and the roof of my mouth also hurts and swollen with lumps not sores that come and go kn the bony part

This will be long and some of it may make zero since until the end * please read it I NEEd HELP!.. I had been feeling tired and what I could only describe to the doctors as a “general feeling of unwell” for 20 years now. When I first would get basic CBC done all was ok it seemed. I had a case of terrible pelvic pain for about 12 years and no one could figure out why! I had countless testing done put on antibiotics so many times for no reason,laprosopic surgery,Samples taken from my uterus ect.. I finaly had enough and found a doctor who actually listened and we decided to do a hysto to remove the cervix leaving the ovaries. I woke up to find I had one ovary because my right was sererly impacted with cysts hmm how that never got picked up on scans in beyond me. I am a mother of two age 39 and was always active and hiked, walked ect. In 2014 I was so fatigued I could nit stand it and felt terrible. I got sleep studies done blood work. I noticed a pattern with my blood work “your WBC is low some people run low”. I accepted this for a few years. Since my PCM could not give me answerers and made to feel like a hypochondriac, I started digging out blood work from long time ago and my WBC where always normal. SO I tell this to my PCM who also noticed RBC MPV problems Neutrophil problems ect and I was down to 98 lbs. He sent me to Hematology Oncology. There I had some very disturbing CBC’s. He ordered a battery of testing for everything under the sun (but not EBV). I had disturbing low counts on almost everything and pathology found expanding LGL T-cell in bone marrow and blood. Ok so he said no worries precursors for Leukemia these T-Cell problems are affecting my CD8+ and some CD4/CD8 double negative T-Cells showing mildly decreased expressions of CD2 and CD3. They accounted for 28.7 of T-cell and 7.4 of WBC. This was in 2014. We did the bone marrow biopsy said the same thing with some hypocelluar whatever. So I have no aswers other that its a “reactive” process however I have been tested for autoimmune disorders ect. All legative. Then in 2014 (mind you my doctor never told me any of these results thank goodness for patient portals) I had a 1.0% abnormal CD5-Positive population detected. CD19 positive light chain bearing B cells BRIGHT CD5 light chain. WHAT EVEN IS That, never told of it and how does that cell get there? So once again I ask the doctor umm whats that because when I look that up its cancer. I keep getting the I do not know. Then the next blood workup its GONE. The more I looked at my bloodwork the more things started popping up. In 2015 my LGL T-cell blasts are now at 31.7 Tcell and 9.6 WBC He does not know yet again. Aslo no clones present. Went that much higher from 3/15 that ws 28.7 and 7.4. I became concerned because I still felt like garbage and tired and anxiety ect ect. I decided to get a second opinion in September 2016. I went to Vanderbilt. He looked at what little he could get from them and asked if they ever checked for EBV? I said they took about 20 viles of blood when I started I thought I was tested for everything. He decided to check me for that and run another RA factor. Well I came back with a potitive EBV apparently active and apparently exposed not recently 4 blood tests where done. He was 99% sure this was my “reactive” process that they kept saying was the problem with my blood. I was also anemic with some other diagnosis from my serum testing. I took my EBV findings to my Oncologist and his statement was” I can not comment on what that doctor said” I say do you think this is whats causing this” again same answer. I am out of patients I am loosing weight again still tired unless I take meds to keep me awake. I have a constant worry that it will develop into cancer as the other doc said its a “hurry up and worry situation”. I have lost all muscle mass and so boney my rear end now has some weird discoloration. I have been sweating more have some chest pain shortness of breath and lower back calf pain going on for over a year! I do smoke so yes I know its terrible but I stated this habbit in 2014 after being put on meds to help my stay awake and my mental clarity it made me crave cigs and diet soda. I am at a total loss. I bought so many supplements, vitamines, silver, monolarum (spelling) from amazon. I am at a loss I am withering away at 39 I was doing ok until about the last 6 months. I am loosing my hair it will not grow and I need help asap. If chronic EBV is causing this I need some seriouse help. All I was told is do not play contact sports exercise ( thas good for ppl with muscles and energey) and keep my immune system up I rarely get like a cold or anything I am also concerned about these lumps in the back of my throat near my tonsils they do not look like they are supposed to be there yet my incompetent doc says nothing. I am at a loss as there are limited doctors here for Oncology and Should I see a infectious disease specialist I feel like a person with black plague like where did this EBV come from or start never had a diagnosis and married 20 years he never gets sick with it. I am very confused as to if its EBV or something else entirely. Was hoping perhaps others that have this T-Cell and B cell issue may have connected it to EBV. One doc says YES thats the reactive process one has no comment no dietary suggestions no supplemts nothing I google it and buy what ppl say works. HELP at the end of my rope. I uploaded some old CBCs so you can see the pattern of whats going on. Also my salivary glands in my mouth get swollen and the roof of my mouth also hurts and swollen with lumps not sores that come and go kn the bony part

Hello everyone! My last post in July said I was headed to Mayo Clinic at their Rochester, MN campus in August. My wife and I spent three weeks in Rochester with me going to appointments. I can't say enough positive comments about Mayo, the doctors and staff, and the residents of Rochester! After numerous appointments, tests, and changes in appointments, the final result is a primary diagnosis of Idiopathic Hypersomnia. At first, I was was disappointed that Mayo doesn't recognize Epstein Barr as a chronic condition. However, their explanation made sense to me, and I am willing to accept their idea. I had been previously diagnosed with IH,
But Mayo made me feel better about my doctor and his treatment. Mayo doctors also didn't confirm some other diagnoses from my local doctor and took me off five medications immediately. I am feeling much better since I stopped taking medications that my body didn't need. The Mayo doc also sent my local pulmonologist his recommendation to revamp my medication dosage and/or change my medication to allow me to be able to stay awake better. Treatment for IH is just treating the symptoms...stimulants to keep me awake during the day. I see my local pulmonologist next week. Mayo also found a small issue with my pancreas, which I will be contacting a gastroenterologist locally for that. So do I think EBV is real? Yes! I also blame that virus for my IH, which the Mayo doc said was possible but it can't be determined. I still have a little brain fog and pain, but nothing like it was before my Mayo visit. I recommend anyone who has ongoing health issues to make a trip to Mayo Clinic. Insurance is accepted, and lodging options vary according to your budget. We opted to take our travel trailer because of the length of time we would be there. Autumn Woods RV Park provided us with everything we needed. I am still curious how this plays out. IH isn't curable, but it is manageable somewhat. I will be keeping up with everyone on here, and I appreciate everyone's concern and prayers during my trip.

Hello everyone! My last post in July said I was headed to Mayo Clinic at their Rochester, MN campus in August. My wife and I spent three weeks in Rochester with me going to appointments. I can't say enough positive comments about Mayo, the doctors and staff, and the residents of Rochester! After numerous appointments, tests, and changes in appointments, the final result is a primary diagnosis of Idiopathic Hypersomnia. At first, I was was disappointed that Mayo doesn't recognize Epstein Barr as a chronic condition. However, their explanation made sense to me, and I am willing to accept their idea. I had been previously diagnosed with IH,
But Mayo made me feel better about my doctor and his treatment. Mayo doctors also didn't confirm some other diagnoses from my local doctor and took me off five medications immediately. I am feeling much better since I stopped taking medications that my body didn't need. The Mayo doc also sent my local pulmonologist his recommendation to revamp my medication dosage and/or change my medication to allow me to be able to stay awake better. Treatment for IH is just treating the symptoms...stimulants to keep me awake during the day. I see my local pulmonologist next week. Mayo also found a small issue with my pancreas, which I will be contacting a gastroenterologist locally for that. So do I think EBV is real? Yes! I also blame that virus for my IH, which the Mayo doc said was possible but it can't be determined. I still have a little brain fog and pain, but nothing like it was before my Mayo visit. I recommend anyone who has ongoing health issues to make a trip to Mayo Clinic. Insurance is accepted, and lodging options vary according to your budget. We opted to take our travel trailer because of the length of time we would be there. Autumn Woods RV Park provided us with everything we needed. I am still curious how this plays out. IH isn't curable, but it is manageable somewhat. I will be keeping up with everyone on here, and I appreciate everyone's concern and prayers during my trip.