Treatment for chronic epstein barr

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with this for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

Liked by mapchap, pijax, lioness, nacc ... see all

Welcome to Connect, @halberryo,

Although not always for chronic Epstein-Barr, @jencheney727 @rpkelderman @bestcare @coastalgirl, have discussed the benefits of L-lysine and some other supplements, and I wonder if they have more information?

@halberry0, please note that Mayo Clinic advises that people consult with their current care provider before making any changes to their existing medication or treatment plan. 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.

We look forward to learning more about you so we can help Connect you with members who may be able to offer more insight. Have you been diagnosed with this condition, Hal?

REPLY

I am desperate. I am 47, and I had Mono in December 1987 so bad that I was in the hospital for a week needing platelets. At first, I was scheduled for a bone marrow test because the GP who put me in the hospital wasn’t sure I had leukemia. The lab tests came back with a positive EBV, so they begin to give me lots of meds and platelets to help build my blood levels back up so that I could move. I was covered in peteckei and was not allowed to move unless two nurses were with me because of the risk of rupturing something.
I had been sick for 3 months, and my parents finally decided to get a second opinion. I am so thankful they did. Two years later, the same thing happened when I got pregnant. I felt horrible and was put back in the hospital because I couldn’t stop bleeding and lost that baby. I had had a sore throat, headache, and fatigue for weeks before this.
In 2002, I had a Roux N Y gastric Bypass to lose weight. I weighed 325 pounds at 5′ 4″. After the bypass, I felt amazing. I might add I had two live births and never had another diagnosis of mono again.
My GP was so shocked that all he could find that second time in the hospital was EBV.
In 2006 I had to have a hysterectomy, and since then, I have been constantly dealing with immunity and fatigue issues. My bladder was torn and instigated interstitial cystitis. That in itself has been absolutely horrendous to finally find a docotor who could help with it.
Two years ago I was mono positive again. I am so discrouraged because not one specialist I’ve been to takes me seriously. Depression has become a daily battle, and now I am in full blown menopause. I have had to miss so much work that I finally took a leave for 14 months in hopes to rest and be able to work again.
I know menopause can cause lots of similar issues, but after a very long visit with the best GYN in my area, he explained to me that once I began getting estrogen back in my system, those symptoms would calm down. They haven’t. I used to be able to lie in the sun for hours, now the heat absolutely make sure me nauseas and weak. I also take a ton of minerals, vitamins, probiotics and stay completely away from processed foods, sugar, dairy, and vegetables. I am on a high protein, very low carb diet.
I’m a teacher and have been so excited to hopefully be able to go back to work. But the last 7 weeks I have had a very sore, swollen tonsil, swollen glands, headache, and extreme fatigue.
My GO has run me through 3 different antibiotics, and she took a culture. It is vital, so I am to just rest.
I’m so exhausted trying to find someone who will help me, and I really want to come to Mayo and see someone there because I have been told that Mayo doesn’t just look at one piece of the puzzle.
Over 23 doctors in my area have done little to nothing to help me.

REPLY

So sorry to hear of your suffering. I was done with doctors also when they told me nothing was wrong with me. I was sure I had lost my mind or was dying and no one could figure it out. A functional medicine doctor was able to DX me and give me supplements that seem to help. Doesn’t mean I don’t still have all the symptoms (sore throat, inflamed lymph nodes, fatigue, fever, myalgia and arthralgia) but they are BETTER. The best thing I have done for myself so far is trying to accept that I really am ill and not making this up and treating myself accordingly (if you are sick you rest, eat right, and respect your needs in the moment). Sending thoughts of peace and recovery! Lee Anne

REPLY

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?

REPLY
@kanaazpereira

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?

Jump to this post

Please go to Mayo. You can be sure the doctors there will look at the whole picture and will find out your problems. I cannot recommend Mayo enough. Mayo uses a team approach with different speciality doctors conferring about your case. N need to go to one doctor to another at home and waste time and feel terrible. All the tests you need can be done at Mayo. So sorry for all your misery. Good luck to you!

REPLY

I posted a separate discussion on EBV and a possible link with my precursor leukemia if you all will be so kind to read and help thank you

REPLY
@rkapache

I posted a separate discussion on EBV and a possible link with my precursor leukemia if you all will be so kind to read and help thank you

Jump to this post

I have never had EBV so I can be of little help. I do have an autoimmune disease called giant cell arteritis. Along with prednisone, I take methotrexate. Methotrexate side effects are fatigue and a bit of nausea on the day I take it. However if it helps and I will know shortly after a CT scan in August, it all seems to be worth the effects. Think methotrexate is the usual drug for autoimmune disease along with prednisone which is tapered down each month or so. Sorry that I cannot help.

REPLY

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

REPLY
@rkapache

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

Jump to this post

Rkaphact, I’m so sorry for what you are going thru. I swear that part of our illness comes from the frustration of not being believed or finding a good doctor willing to work till they find our problem. I have Hashi’s, CEB, fibromyalgia, and a fatty liver, diabetes, high BP, sleep apnea & metabolic disease and “non specific autoimmune disease .” I get a multitude of symptoms like you… Has anyone checked your adrenal gland function ? Some of your symptoms sure sound like an adrenal crash…it is a vicious cycle –weak adrenals cause problems , but having constant stress of illness cause weak adrenals . I’ll be praying for you !

REPLY
@gracie927

I am desperate. I am 47, and I had Mono in December 1987 so bad that I was in the hospital for a week needing platelets. At first, I was scheduled for a bone marrow test because the GP who put me in the hospital wasn’t sure I had leukemia. The lab tests came back with a positive EBV, so they begin to give me lots of meds and platelets to help build my blood levels back up so that I could move. I was covered in peteckei and was not allowed to move unless two nurses were with me because of the risk of rupturing something.
I had been sick for 3 months, and my parents finally decided to get a second opinion. I am so thankful they did. Two years later, the same thing happened when I got pregnant. I felt horrible and was put back in the hospital because I couldn’t stop bleeding and lost that baby. I had had a sore throat, headache, and fatigue for weeks before this.
In 2002, I had a Roux N Y gastric Bypass to lose weight. I weighed 325 pounds at 5′ 4″. After the bypass, I felt amazing. I might add I had two live births and never had another diagnosis of mono again.
My GP was so shocked that all he could find that second time in the hospital was EBV.
In 2006 I had to have a hysterectomy, and since then, I have been constantly dealing with immunity and fatigue issues. My bladder was torn and instigated interstitial cystitis. That in itself has been absolutely horrendous to finally find a docotor who could help with it.
Two years ago I was mono positive again. I am so discrouraged because not one specialist I’ve been to takes me seriously. Depression has become a daily battle, and now I am in full blown menopause. I have had to miss so much work that I finally took a leave for 14 months in hopes to rest and be able to work again.
I know menopause can cause lots of similar issues, but after a very long visit with the best GYN in my area, he explained to me that once I began getting estrogen back in my system, those symptoms would calm down. They haven’t. I used to be able to lie in the sun for hours, now the heat absolutely make sure me nauseas and weak. I also take a ton of minerals, vitamins, probiotics and stay completely away from processed foods, sugar, dairy, and vegetables. I am on a high protein, very low carb diet.
I’m a teacher and have been so excited to hopefully be able to go back to work. But the last 7 weeks I have had a very sore, swollen tonsil, swollen glands, headache, and extreme fatigue.
My GO has run me through 3 different antibiotics, and she took a culture. It is vital, so I am to just rest.
I’m so exhausted trying to find someone who will help me, and I really want to come to Mayo and see someone there because I have been told that Mayo doesn’t just look at one piece of the puzzle.
Over 23 doctors in my area have done little to nothing to help me.

Jump to this post

Has anyone in this group had a gastric bypass? To me, this is the big difference when being treated for anything medically. My doctor prescribed me an oral steroid she should know I can’t take. I mentioned, and she replied with oh yeah. I was taking an anti-depressant for 6 years that wouldn’t digest. No one knew till I had a period of anxiety I couldn’t get passed.

REPLY
@akhippiechic

So sorry to hear of your suffering. I was done with doctors also when they told me nothing was wrong with me. I was sure I had lost my mind or was dying and no one could figure it out. A functional medicine doctor was able to DX me and give me supplements that seem to help. Doesn’t mean I don’t still have all the symptoms (sore throat, inflamed lymph nodes, fatigue, fever, myalgia and arthralgia) but they are BETTER. The best thing I have done for myself so far is trying to accept that I really am ill and not making this up and treating myself accordingly (if you are sick you rest, eat right, and respect your needs in the moment). Sending thoughts of peace and recovery! Lee Anne

Jump to this post

Thank you! It helps just to know there are people out there who understand, but I do wish no one in the world suffered with this like all of us have.

REPLY
@kanaazpereira

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?

Jump to this post

The throats culture showed no bacteria. I have been on a very high protein diet since January after an abdominal reconstruction due to a soccer ball sized hernia that protruded in late November of last year. I have also been very intentional about resting, exercising, staying away from processed food and drink. I also drink a lot of water and pray daily for healing. I will not give up this time. I do not want a diagnosis of illness, but if something is not well, I want to tend to my health the best I can because I want to live and enjoy my family. I can not tell you how grateful I am that someone has listened and given me hope. God bless all of you!

REPLY
@rkapache

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

Jump to this post

I am so sorry for all you have been going through. I can relate to so much you’ve shared. Prayers for you that you can get in to Mayo or another place where a team of doctors will look at all aspects at the same time. I sit here with tears streaming knowing it is horrible to feel so bad all the time, and no one has answers.

Liked by Gracie927

REPLY
@rkapache

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

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Thank you! I do have appointments with Mayo in August. I hope it’s worth the energy and expense!

REPLY
@rkapache

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

Jump to this post

Your appointment will be worth your time. I understand that getting there is no easy task. Mayo doctors treat you like an adult, are extremely polite and kind. The doctors are salaried so it doesn’t matter if you need more time than a community doctor. Of course they are busy but rest assured, the doctors will get to the bottom of your problems. Almost all appointments are in the same area. If you need a wheel chair and someone to take you to appointments, that can be easily done. Information areas in the clinic are knowledgeable and helpful. Good luck to you! Keep us posted.

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