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.
Liked by mapchap, pijax, lioness, nacc ... see all
@clghanimo @suzyp @jonnybear619 I thought this video might be helpful for you.
What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj
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Awesome video. Thanks, John, for posting. I understand how frustrating it must be to be a woman and an illness be passed off as an irrational woman thing. However, what is even more frustrating and even more demeaning to me is to be a man with ME and made to feel less of a man because this illness is usually diagnosed in women. The lady in this video does a great job explaining the history of ME. It’s just another way that the medical community is avoiding the medical issue of ME. I am a 54 year old male. I was finally diagnosed in 2013 with Chronic Epstein Barr Virus, Chronic Fatigue Syndrome (ME), and a host of many other things. I’ve had to leave a job that I loved and excelled at after 21 years, relationships have suffered, and finances are a mess. I am a man with a disease. THIS IS NOT A GENDER SPECIFIC ILLNESS!
Liked by John, Volunteer Mentor
Hello @airsleeper, I completely agree with you. I'm guessing there are a lot of illnesses that may fall into that category of occurring more with women than men or vise versa. I think it probably has more to do with different levels of experience, specialties and expertise of the different doctors involved. That's really why (IMHO) a person has to be their own advocate and learn as much as they can about their illness and ask lots of questions and not taking I don't know for an answer – that's a little over the top but I think a person has to be persistent. We patients may not have the medical knowledge but we do know how we feel and we need to make sure the doctor understands, pushing them to find the answers. I've had many of those discussions with my primary care docs because they change every few years in a family clinic. My last doctor wanted me to take statins to "help" lower my cholesterol and was quite taken back when I told her I'm not taking them, I will work on my diet to try and bring the numbers back into line. I told her one of the things I have learned about my peripheral neuropathy is that statins make it worse so why would I want to take them.
Anyways, I'm hoping all of us can find some answers and the help that we need. Have you found anything that helps you that you can share?
Liked by Colleen Young, Connect Director
I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.
Thank you Kanna…..i appreciate your
comments. I am sorry for the multiple posts –I’m having a little trouble navigating on this site yet. Say a prayer that I can find the right doctor. Susan
John, thank you for the info…the video was very touching ….I’m considering trying to get an appt. in Jacksonville.
It is really nice to connect here and read stories similar to mine! I am 57 years old and one year ago contracted Herpes Type II from my long term partner. Since that time I have experienced extreme fatigue, depression, digestive upsets, headaches, myalgia, arthralgia, inflamed lymph nodes, sore throats, low grade fevers. No testing from regular doctors resulted in anything “wrong” with me. In the last 10 years I have had thyroid cancer (in complete remission) and viral meningitis (hospitalized for 2 weeks). I had given up on drs and decided I was probably dying and they couldn’t find what was wrong. I regularly thought I would have my children put “I told you I was sick” on my gravestone! Ha ha.
I finally saw a Functional Medicine Physician would dx’d me with Chronic EBV prior to testing me and she was right on the money. Since that time I have been taking LOW DOSE NALTREXONE. There is a book out there you can read about LDN and plenty of websites. It has been working for me; no cure by any means but definitely helps. I also take supplements; N-Acetyl-L-Cysteine, Aller C, VS-C (natures sunshine), 25mg Thyodine, Circum Eval (circumin) and 2k+mg Vitamin C per day (I use rose hips variety), 800 mg Magnesium, 200 mcg Selenium, and 10000iu Vit D daily.
I continue to have good days and bad days. The best advice I have been given is “do not run on adrenaline”. I am working on regulating my days to include small walks daily (I used to be a very active athlete, but over the years have just not had the energy), standard bed times and rising times, and learning not to expect too much of myself. There are days when I sleep 14-18 hours. I am working on paying attention to what my body needs. I switched over last year to a Vegan diet (not perfect at it but generally am). I found I cannot tolerate dairy (especially cheese and yogurt), lots of breads (try to minimize or eliminate all together), and simple starchy foods (such as white potatoes). I still use some sugar but miminally. I eat a lot of black beans and chick peas and tons of veg. When I keep my diet this way, I feel better and have more energy and less bad days. If I keep a regular schedule and go to bed around 9pm, rising around 6-7am, I do ok. If I need a nap in the middle of the day I take it. If I had a regular job I would be BROKE, but I work for myself and so I am able to continue to make a living without having to go to an office every day. I do travel for work and find that I have to limit the number of clients I see in a day and when I am more than 200 miles from home I choose to stay in hotels.
Liked by John, Volunteer Mentor, Ace, Su Cante, sullisme
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.
I would recommend a functional medicine physician. I am also using LDN therapy and it seems to really be helping.
You might want to try a functional medicine physician in your area….
Super interesting the number of people who were DXd with Hashimotos’ who also have Chronic EBV. I was Dxd with this in my early 30s and had radioactive iodine therapy. Hmm. Does anyone know if there is a link between Hashimoto’s and Chronic EBV?
I have been researching both Hash and CEB…:i have been dx with both high antibodies of each. They seem to go together…a dr told me one time that my low thyroid made me suseptable to a lot of other illnesses.
It does sound similar. I don’t have all of the issues you have but the recurrent infections is very familiar. (I am pre-diabetic and have sleep apnea)
I have to say that despite the last year being extra difficult, I just had a great month. I traveled to Europe wtih my family and was blessed with energy to make it through the trip. I don’t know what to ascribe it to . . . many, many prayers by myself and on my behalf, more vitamin D, sweating out impurities, walking tons (which usually takes me down fast), the vitamins I started taking before and during my trip (I followed mostly what jenchaney727 posted above as well as liquid coenzyme Q–Costco sells this at a good price–Fish oil supplements–Wild Alaskan Salmon Oil–also at Costco, and a good probiotic.) Maybe it was all of the above. Who knows. It has helped me to build up my stamina and now I can excercise low/moderate intensity for much longer (30-60 minutes) without it making me sick.
I also looked at the reply posted below by akhippiechic and read about LDN therapy. It talked a bit about how endorphins help the immune system. Maybe the excitement of traveling did something too. I don’t know, but I am making a point of getting outside daily, getting more exercise and trying to find ways to enhance my endorphins.
I know there are plenty more ups and downs ahead, but at least I am on a good track for now. I hope this helps and I am sorry about your suffering. It is so hard to find a dr. who understands. I haven’t found one yet. I guess that is why we have to support each other.
Liked by Justin McClanahan, Akhippiechic
Thanks for mentioning LDN therapy. I am looking into it. I thought the info about endorphins on the lowdosemaltrexone.org website was really interesting.
Liked by Akhippiechic
Thank you …its great you could enjoy your trip ! There must be something to the endorphins …when i go on a trip I usually have more energy …enough to enjoy myself but then when i come home i crash . I am getting set up with a functional dr. My neurologist ordered did order an iron; ferritin and B 12 , the other day for my fatigue . I had a rough year with 3.surgeries on the same year so it could be part of the reason I’m having a bad flare right now. Best wishes to you as well !
Hi. I have read the good majority of everyone’s posts regarding their struggles with this virus. I was diagnosed in October 2016, with mononucleosis (relatively moderate to high ranges for each test), and felt pretty horrible for a short period. I never had a fever, swollen lymph nodes, and/or rash, but my upper left abdominal hurt and my body felt like I was hit with a Mack Truck. After several weeks, my PCP ordered an abdominal CT scan (without contrast), which did not reveal anything of concern. I started to feel much better with more energy and sporadic upper left abdominal pain, but had to take a short of leave of absence from work. More recently – last week – had my blood levels rechecked. I was totally alarmed by the current results. It showed: EBV EA (D) An, IgG = 101.00, EBV EBNA = 164.00, EBV VCA – IGG = greater than 750.00. It showed a much worse scenario with this virus, however, my WBC actually decreased from 10.8 to 10.1, and there was no indication of thrombocytopenia. My PCP admitted he was at a loss with understanding these results and has now referred me to an infectious disease specialist. I’m waiting for an appt. Any insight to this craziness??
Welcome to Connect, @penelope41,
I can completely understand your concern, however we cannot diagnose conditions, or make specific treatment recommendations through Connect. That being said, I am confident that the members in this group will be able to offer more insight into your symptoms and test results. If you would like to get a second opinion from Mayo Clinic, you can start that process by using this link, http://mayocl.in/1mtmR63.
I’m tagging Connect members @jenchaney727, @suesiegel, @aman_23_23, @copiela, @jatl, @cheryldotson, @clghanimo, @dash99999, @emmie, @suzyp, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to answer your questions.
This Mayo Clinic webpage has some relevant information on EBV which you might also wish to view:
I’m glad that you have found us and we look forward to getting to know you; @penelope41, are you experiencing any symptoms such as fatigue or other recurring infections?
Has any one had any success supplimenting L-lysine to suppress epstein barr? I know they use it to treat other viruses of the herpies family.
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