Mayo Clinic Connect
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.
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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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I cannot take steroids by mouth due to gastric bypass nor by shot any longer. I was getting a steroid shot about every six weeks or so when I finally had a severe reaction to it. I wasn’t placed on oral steroids during and for three months after each hospitalization in my 20’s due to the extreme spleen and liver swelling. I actually lost about 50 pounds both times due to my stomach being pushed closed by my spleen.
Liked by John, Volunteer Mentor
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?
@kanaazpereira Thank you so much for all the information. I thought I had responded back to you specifically. Yes, I am on a high protein, actually, almost all protein diet at the moment. As I prepare to officially go back to work tomorrow, I have had so many exhaustive relapses these last three weeks. I am a teacher and have been placed at a new school. Trying to get my room ready has been such a chore. I see my surgeon in two days to see if i have some sort of complication from my abdominal wall reconstruction surgery that was done January 31. Tomorrow officially starts my school year, and I don’t feel that I can tell anyone about what is going on because I have learned from past experiences that 99.9% of all people – family, best friends, and Christians eventually just look at you as lazy or deranged because pushing through is not something I can do most of the time. This is especially true for me as I get older and get out of a schedule, or over due things physically or emotionally. My throat is still sore along with headaches, neck aches, and back aches. Today, after working going through my classroom books and dust, even my eyelashes ache. I got up and took my shower to head to school and had to just lie down after bathing. This is something new along with some other symptoms my husband and i have noticed the last month or so. My vision and light sensitivity is changing again. I just got my new prescription in April, and I cannot see well out of my glasses except to drive. I have also noticed a twitching in my left leg when sitting, and my bladder IC is driving me crazy regardless of diet, meds, or rest. I did fill out an appointment form, and right now I am praying I get seen. I have also been researching different blood and genetic testing possibilities to find answers. Hopeless is set in. I am so discouraged because I had so hoped the set back would be better if I rested more and ate better. But, if anything is true, I am worse all over. I hate to be a Debbie Downer, but I know my husband, children and my dad all need me. And, I want my life back. If I can’t live my life then what am I here for? You know what I mean?
@airsleeper please know you are in my prayers!
Thank you! My appointment at Mayo is August 9. I’ll keep you posted.
I hope your son is doing better now. I know the pain of fatigue. I contracted Mononucleosis in Germany back in 1986 while stationed there with the Air Force and the Military did not have regulations for “PROPER” time off to get well from Mono, so I came down with Epstein Barr for years. My immune system has been “Compromised” for all these years and I am 52 now. I took Echinacea liquid, which I drank with orange juice and it seemed to help somewhat, there are capsules as well. I drank a lot of water, Vitamin C and B and now we have Alkaline water which absolutely ROCKS!!! Glyco-nutrients are a health breakthrough – made from a highly concentrated form of the Aloe Vera plant – they have kept me on a great track now for some time. You can find MPS at Dr. Wheeler’s website and only a little is necessary…but daily to build immunity, one tub goes a long way.
Sorry for coming to this late.
I had EBV in 2010. Since then I’ve struggled with the usual, fatigue, bone and joint pain etc. I also have ehlers danlos type 3, postural orthostatic tachycardia syndrome, bladder dysfunction and interstitial cystitis.
My ALP has been consistently raised since my EBV diagnosis fluctuating from 222 to 330 odd. Recently I had more bloods which showed my EBV IgG, EBV IgM, Anti EBNA 1 IgG all showed as “reactive”.
no one could ever explain my ALP other than linking it with vit d defficiency I had back in 2012 so they gave me supplements and my levels are now 55 for vit d but no explanation for why ALP so high constantly). Mentiomed Osteomalacia but again was just sort of left hanging with no treatment 5 years ago and struggled intil this day.
Does anyone have any ideas about what is going on here? I cannot speak to my consultant for 2 weeks and my GP has no desire to look into all this. How do you know if you have reactive or chronic reactive EBV?
I look forward to hearing from someone soon xx
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.
Liked by John, Volunteer Mentor, Justin McClanahan
Hello @airsleeper, this is all great news and was a pleasure to read. Thank you for coming back to the group and updating us all on your appointments. Three weeks is certainly a long time to spend in a city that you are not familiar with, all the while going to multiple doctors appointments. As a lifelong resident of Rochester, I am also happy to hear that your stay in our city was pleasant… I would always say so, but I am biased 🙂
@airsleeper, did you utilize the Mayo Clinic Concierge Services during your stay to help with lodging and maneuvering the city?
Hey Justin. I didn’t use Mayo’s concierge services. I found the RV park through Google and didn’t have any difficulty getting to and from the park and the clinic. I did check out the service,
though, and decided I had everything covered.
Have you added foods that will get rid of the virus? And removed the ones that feed it? Check out the book Medical Medium
Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.
Read medical medium and cure it
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Hi, my name is Vincent Ernst, I contracted Mono between 2014 and 2015 and have a persistent, on and off again feeling of lethargy and general weakness, in addition to other vague symptoms. It is unclear when exactly I contracted the infection since only an EBV anti-body count tested in early 2016 confirmed that the infection had taken place “recently”, and perhaps at this stage this had already become chronic. To provide some context, I first started feeling unwell in Autumn 2015, when I noticed that I was frequently feeling sick, but not seriously ill with any fever or severe symptoms. It was like a mild cold every two or three weeks. During this time period I was completing senior year of high school as well as studying for my IB Diploma and I didn’t miss a single day of school. I also performed as a DJ at parties, whilst sick and also drinking alcohol. This stress never seemed to impact my symptoms. This phase lasted until my 18th birthday, in mid February 2016 and suddenly ceased for some time until early may when I contracted a bad flu and was then hospitalized with double Pneumonia, thus missing my Final HS Exams. In late 2016 there was a second, three month phase where my symptoms worsened and didn’t go away. I was treated homeopathically with 2LEBV, antiviral, immuno-stimulating drug, as well as other supplements. After taking some newly prescribed probiotics at the end of this three month period, I miraculously recovered within a few days. However, this year I still got ill frequently, always preceding or following events of high stress and alcohol consumption. I also got Pneumonia again, however far less severe than the first time. As of this writing where I am again feeling ill, there is no measurable fever, only a little yellow phlegm and a feeling of mild depression, malaise, light headedness, feeling hot and cold as well as a yellow discolored tongue. Every doctor denies that I have a persisting infection, except the homeopathic one who treated me, with temporary success. I might even describe myself as a hypochondriac, feeling scared and stressed of possible sources of infection since the events of the last two years. In my childhood I was rarely Ill, about once or twice a year and now I frequently have 4-7 day periods of feeling unwell, and every now and then serious illnesses such as pneumonia. I’m 19, attending university in Florida and I’m afraid that this will have a severe impact on my future adult life. A psychosomatic doctor even diagnosed me with “suspicion of personality disorder, namely recurring, currently repressed, depression” which is, excuse my French, bullshit. I feel a little helpless, but I’m not willing to give up and I want to improve my ok-mediocre quality of life before it gets worse and turns into CFS!
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My 24 year old son was diagnosed with strep throat 8 months ago and has been left with extreme fatigue that never goes away. About a month after the strep diagnosis we had him checked for the Epstein Barr syndrome and he tested positive to a recent virus. We now think he had mono not strep. We are at our wits end with what to do to help him. Looking for any help or even some one to comparison symptoms with.
Sorry to hear about your son. Both my daughter and I were diagnosed with EBV about six years ago. She struggled but did complete her doctorate degree. I continued working, but had to finally retire four years early in 2014. I’m convinced EBV caused me to need a pacemaker and infected other organs of my body. However, with lots of doctor visits and numerous treatments, I’m now able to participate in more family activities. This illness is very much a management issue. If you haven’t read the Spoon Theory yet, google it and you’ll get a better understanding about how your son feels. My daughter works full time but is exhausted. She spends at least one day of the weekend sleeping although she gets 8-10 hours a night during the week. I sleep 8-13 hours a night and sometimes take naps during the day. We both take prescribed stimulants to keep us functioning during the day. My lifestyle had to change drastically because retirement fixed income and my stamina to do anything physical is so low. However, I have improved greatly these past three years. I went to Mayo Clinic in August. Although they don’t recognize EBV as a chronic condition, they were able to rule out many other previously diagnoses and took me off most of my prescriptions. I highly recommend going to Mayo in Rochester. They won’t stop searching for answers until they have found them.
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