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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My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he’s been constantly fatigued, just doesn’t feel great half of the time, and is constantly contracting other infections and viruses.
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@jean2018 – What brand of L-Lysine do you use? I found Natural Cure Labs Monolaurin, thank you so much for the information.
My naturopath has me on Monolaurin supplement called "Lauricidin" – 3000mg of Monolaurin a dose. I take it 3 times a day. Have been doing it for about 6 months and feel like my energy is better. She says I will most likely need to take indefinitely. I also just began a prescription of Acyclovir to prevent the EBV virus from multiplying. These seem like they are helping and I don't feel as fatigued overall. Hope this is somewhat helpful!
@jamienolson in late 2007 my PA and doctor finally decided to test my IgG and IgM and ANA levels. Additionally, EBV was ordered. All were positive and high. Since then, the levels have remained active and high. In 2008 I was sent to a wonderful Rheumatologist who had the brilliant idea of putting me on Valtrex. Since then up until about 1month ago I was taking it. As I I had moved to another state and my new PCP kept “fighting” me on continuing me on Valtrex despite my records and blood work showing the positive lab values, he has stopped my Valtrex. He referred me to a local ID doc who sent a reply to my PCP saying he could manage me that I didn’t need to be seen at ID clinic. Slowly, my energy has been depleted. My muscles are extremely fatigued easily. I feel like all the great years I’ve had have been thrown away. I’ve gone from feeling great, being able to function, work, workout 5x/week to now being barely able to work. What can I do to convince this PCP that Valtrex does work. I’ve tried giving him literature, etc. he even has my records. Please help.
That stinks. It sounds like you have SEID/ME/CFS and have been able to manage with medication that works for you. I’d get another doctor!
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I don’t mean to sound dumb but what are SEID/ME/CFS? I’ve contacted my previous rheumatologist as she is also a friend to let her know what’s going on and see if she can perhaps speak to my current PCP. Something has got to give.
I asked to be checked for Epstein Barr when I became too tired to eat and chew (at 240 lbs. that was a first). Sure enough I had reactivated Epstein Barr. Please friend me if you have info about this disorder. I am hoping to come to Mayo MN in October to assess my chronic pancreatitis, possible nonalcoholic cirrhosis, Memory issues and TIA's and possible MVD (usually a difficult to diagnose women's heart issue). I also deal with Type II Diabetes, GERD, IBS, a neck fusion in C4-7in my spine and 2 knees that need replacing. Oh and ruptured disc in back, Anxiety, Bipolar disorder and PTSD. I am open to support and to hear other's issues.
Hi @dbreed. Systemic Exercise Intolerance Disorder, Myalgic Encephalomylitis, Chronic Fatigue Syndrome. They all kind of overlap.
Hi @aesmayo01. That's great that your doctor was willing to check for EBV. Even thoucgh I have active antibodies my former doc pretty much dismissed it and told me to exercise and then put depression in my chart. I used to run half marathons and lift weights so. Believe me, I would exercise if I could!!! Anyway, I would recommend checking out the Mono Project from the University of Minnesota. Also heck out some loses facebook groups for EBV. There are a few of them out there. I wish you all the best. Remember you are your own best advocate!
Ty! I wasn’t familiar with those. The good news is I spoke at length with my PCP this morning and he listened to me! We discussed everything again and he has reordered the Valtrex. Thank God!!! He also said he is going to research more on EBV as he really didn’t know a lot about what’s out there to help.
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Systemic exertion intolerance disease is the new name for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It is an autoimmune disease that is brought on most commonly by a virus (EBV and Lyme disease are the biggies). It causes autonomic, neurological, neuroimmune, GI issues and many other issues.
There are few specialists in this field. I got my dx at Mayo Clinic, but they are way behind on the research. Standford is where they are doing a lot of research and have specialists there that have tests for it. There is no current treatment and the one most commonly recommended by doctors around the world actually can make the disease progress and worsen (GET and CBT). But a lot of research is being done right now on it by immunologists, virologist, neurologists, radiologists, etc.
SolveCFS.org and ammes.org are good resources to do a symptom check to see if any of it even fits.
I just hate you were all better and a new doctor won’t let you be well again! I’m so sorry!
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Ty you very much for the information! I’m so sorry you’re unable to exercise. When I’m feeling good, it’s a lifesaver. I feel better. I’m not sure if you’ve tried it, but I have a massage therapist who does lymph massage using the cupping technique. It truly helps with ridding your body of toxins. I try to go at least twice a month. It’s made a difference and has really helped with inflammation and swelling. I also do detox baths at home with ginger and epsom salt. I hope this helps.
@aesmayo01 I hope you’ll be able to get some answers and helps.
@uldiver ty so much for the great information. I will definitely check into it. Truthfully, for the most part since 2008, my health status has been kept in check w/Valtrex. However, I didn’t look further into other possibilities as I put the DX out of mind and just pushed forward. I’m in the healthcare field too! My heart goes out to all of the folks on here who are searching for answers and desperately needing relief. It’s an awful chronic condition. However, it can be managed as long as we have the right medical professionals who recognize this is a real problem and treat patients accordingly.
@mrmie ty!!! Also, if you read my other responses, I thought I was responding to you. I’m new to this forum and keep forgetting to put the @ symbol to respond.
Thank you! I was just thinking that I need a massage.
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