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Marianne
@mrmie

Posts: 36
Joined: Jul 05, 2018

EBV? or Adrenals?

Posted by @mrmie, Mon, Jul 16 4:06pm

I'm wondering if anyone has had luck going to the Mayo Clinic. I have been battling life-changing, wicked fatigue for 2 years. Before it hit, I was a healthy, 43 y/o working as a nurse, working out, and loving life! I am no longer working now. I went back to working (part-time) after I thought I was well enough only to relapse after 1 month. Besides the fatigue, other symptoms I have experienced are salt cravings, increased thirst, hypoglycemia, decreased appetite along with a 10 lb weight loss. I saw an infectious disease MD in 2016 since my EBV IgM titer was elevated. He ran a PCR test to look for EBV DNA and that was negative. So he said I do not have EBV. I decided to see an endocrinologist due to the nature of my symptoms. His work up was negative except for reactive hypoglycemia and recommended going to the Mayo Clinic. He thinks it has to do with the EBV since the lymph nodes in my neck are swollen. At this point I am looking for answers. I have no diagnosis but my life has been turned upside-down! I appreciate you taking time to read this and wish you the best on your journey! (I also spent 6 years in my twenties with chronic EBV and had a 1 year relapse in my late thirties. I really want answers!!)

REPLY

Hello @marianne, I am sorry to hear you are going through so many troubles and symptoms. You mentioned that your endocrinologist recommended that you go to Mayo Clinic. Did he discuss giving you a referral? If so, I recommend following through and asking that he give you a referral. I think you may also may find it worth your time to check out the following discussion as well, https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/. I see that you also posted in a discussion about adrenals. While we wait for others to join in, or while you check out the chronic epstein-barr discussion, how have you been doing with your reactive hypoglycemia?

@JustinMcClanahan

Hello @marianne, I am sorry to hear you are going through so many troubles and symptoms. You mentioned that your endocrinologist recommended that you go to Mayo Clinic. Did he discuss giving you a referral? If so, I recommend following through and asking that he give you a referral. I think you may also may find it worth your time to check out the following discussion as well, https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/. I see that you also posted in a discussion about adrenals. While we wait for others to join in, or while you check out the chronic epstein-barr discussion, how have you been doing with your reactive hypoglycemia?

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Thanks @JustinMcClanahan for the info. The hypoglycemia is under control now. It's usually only really bad when I am in a severe relapse. My endo said to have my PCP do the referral. I just got a new PCP and she is referring me to another doc who likes dealing with these mystery illnesses. I will see what he says and also get in with another endo for a second opinion. I know it could take several months to get into Mayo so I also was considering getting the ball rolling on that in case I need it. I've checked out the post you mentioned. Whether or not I have EBV, it is nice to know I'm not the only one feeling like this. Thanks!

I have a similar undiagnosed situation for two years. My symptoms are slightly different (no history of EBV) but many many other severe symptoms. I too was recommended to go to Mayo and was told “if anyone can figure it out, it then”. Well this is not true. Like every other doctor, they evaluate you quickly and in the context of the most common clinical presentation. The specialists seem to look at your symptoms on pertaining to their specialty and fail to consider a bigger picture. The 15 seconds of attention and jump to conclusions exists at Mayo just as it does everywhere else. I saw good doctors but none worked too hard to make sure they turned over every stone. Some were dismissive and one was downright offensive telling me I didn’t want to believe what I was told by other doctors, yet I’d only been told what it wasn’t. Combined with his inference I had mental health issues (I’ve never had), it was clear he felt it was all in my head. I wanted to run for the door within the first 5 minutes. I sucked it up and stayed for a week, but left with nothing of value. I had the same fruitless, cursory exams I’ve had over and over again. Just a heads up. Mayo may be a better second opinion for treatment options once you’re diagnosed. It seems diagnosis of challenging issues is a systemic problem across the board unfortunately. I’ve had physicians prescribe toxic drugs without a diagnosis, and others who made me feel my pursuit of a diagnosis was unreasonable and the fact that I had none should be acceptable. It often seems no one cares. I’m sorry for what you’re going through. You’re not alone.

@rockymeeka Thanks for your response and input. After interacting on a few online support groups I have decided to not go to Mayo. I have been doing a lot of reading about EBV and other stealth microbes and have decided to start a diet and herbal protocol via Rawls MD. I totally get your frustration with conventional doctors. They don't understand how devastating the symptoms are and don't want to take the time to listen and do a little research on their own. I'm tired of trying to explain it to them. Dr Rawls was practicing OB/GYN when he became ill in his forties. He was diagnosed with fibromyalgia, chronic Lyme, and chronic EBV. His colleagues were unable to help him so he research and was able to help himself. Now he shares what he knows Anyway, I wish you all the best on your healing journey!

I'm glad you are finding help. Does Dr. Rawls practice, if so where? Not sure if he has a book you were finding or an online presence. I'm in Florida and am always looking for doctors who know what they are talking about with EBV.

@michellebelle I just typed up a long response to answer your question about Dr. Rawls. However, it would not allow me to post it because it is " similar to a previous post." That's crazy. So, to put it short, check out Rawlsmd.com. I have checked out his medical license in North Carolina and it checks out good.

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