Seeking treatment and evaluation

Posted by bandolsmom @bandolsmom, Thu, Feb 21 8:19am

After moving to Connecticut from Maryland in 2008 and beginning to experience lowering hormone symptoms, I also began to experience neuropathy, severe vertigo, severe weight loss, chronic joint pain, Raynauds syndrome in my fingers, my veins in my arms and legs enlarged so much that they appeared like tree roots on top of skin, I was weak, dizzy felt completely out of control. I spent the night in a hospital due to heart palpitations. When my heart rate right dropped during the night, the nurse came, took notice, administered morphine, phoned the doctor and attributed the drop to the morphine she gave me after the event. I later developed mouth sores. I went to 5 different doctors took blood tests, that included HIV, lupus, cancer screenings. I was accused of being a chronic alcoholic who was jealous of my sisters success and told to stop drinking. I cried when this judgement was made, I was too hurt to be offended. My symptoms improved after 3 years, except my white blood cell count has remained low. I did get treatment for my hormones, with hormone replacement. No more hot flashes and I haven't had fibroids since, after two surgeries.

I recently began taking collagen supplements and three months later had a massive hsv2 outbreak. I stopped having outbreaks over 20 years ago. Only have had very mild ones off and on that were never a real issue. This time was different. I stopped taking the collagen, and paid $700 for brand Valtrex after about 2 weeks, outbreaks stopped. I researched about how arginine can cause outbreaks, I was skeptical because I had never been diet sensitive before. Because I loved what the collagen did for me, physically, I do have arthritis in my thumb I didn't want to stop, so I did insane research and stumbled upon the Goop article about the medical medium, Anthony Williams. Reading that I finally had a diagnosis, CAEBV. One doctor did test me for Epstein Barr during my initial infection in 2008 and the results were off the charts. My EB VCA IGG was 3119, EB EA IGG 108, EB NA IGG 793.

I have had CAEBV for 10 years without a diagnosis. The whole body collagen supplement I took this past summer has reactivated EBV. I now have very swollen lymph glands, pins and needles. I did start taking Lauridicin to help with the herpes outbreak. Now I am looking for a specialist.

I am now in Highland Park, Il. My primary care doctor rejected that my Epstein Barr test result from 2008 was significant. I recently saw a functional doctor who did not diagnose or comment on the same test. I began juicing celery and taking oil of oregano. I am pretty sure I overdosed with oil of oregano last Friday. I just don’t know what to do.

Hi @bandolsmom that must be frustrating going so long without a diagnosis, and then having your new doctor say that the test result that gave you a diagnosis isn't significant.

I wanted to introduce you to fellow Connect members @mrmie @smcivor94 @momnxtdr and @lisajensen as they have experience with EBV and may be able to offer you support.

Back to you @bandolsmom how have you been feeling today? Why did you begin juicing? Has that been helpful?

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Hi, I was also diagnosed with chronic Epstein Barr. Tested positive 6 months ago and doctors have done nothing for me yet except prescribe vitamin c! In the last few weeks I'm experiencing fatigue, nervousness,horrible vertigo (like I'm drunk but I don't drink) arm and leg weakness and always feel warm. After reading these forums I've decided to go to my doctor tomorrow and demand he send me to a specialist! I have a child at home and it's not fair to her that I'm sick all the time. I didn't realize so many people were suffering with this condition. Thank you for sharing your story!

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@bandolsmom I'm in Chicago and have been ill for 5 years/diagnosed 1 year ago (age 47) I have chronic fatigue, swelling and muscular pain. I tried to get into Mayo but was denied. I have spent the last year taking thousand of dollars worth of supplements suggested by my integrative doctor, and feel no better. I can't find anyone who specializes in EBV and am so exhausted and frustrated.

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@ninireid1

Hi, I was also diagnosed with chronic Epstein Barr. Tested positive 6 months ago and doctors have done nothing for me yet except prescribe vitamin c! In the last few weeks I'm experiencing fatigue, nervousness,horrible vertigo (like I'm drunk but I don't drink) arm and leg weakness and always feel warm. After reading these forums I've decided to go to my doctor tomorrow and demand he send me to a specialist! I have a child at home and it's not fair to her that I'm sick all the time. I didn't realize so many people were suffering with this condition. Thank you for sharing your story!

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Hello, where were you diagnosed? I had my daughter (16) at Lurie Children's hospital today and the infectious disease specialist literally laughed when I told her the pediatrician sent us to confirm her diagnosis and said chronic EBV isn't a real thing. I am so frustrated!

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@jmevac

Hello, where were you diagnosed? I had my daughter (16) at Lurie Children's hospital today and the infectious disease specialist literally laughed when I told her the pediatrician sent us to confirm her diagnosis and said chronic EBV isn't a real thing. I am so frustrated!

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@jmevac, Welcome to Mayo Connect. I am sorry to learn about your recent experience. I can understand your frustration as you try to get medical care for your daughter. I am unfamilair with EBV. I did locate 3 discussions that I want to share with you. Each one is related to EBV. Why don't you read thru them and join in anywhere you want. You will find some support and points of direction from others who have experiencewith EBV. You are not alone.

Is chronic reactivated EBV different from chronic active EBV?
https://connect.mayoclinic.org/discussion/is-chronic-reactivated-epstein-barr-virus-different-from-chronicle-ac/?pg=9#comment-289480

treatment for chronic epstein barr
https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/?pg=1#chv4-comment-stream-header

Teen with weird mono…or not?
https://connect.mayoclinic.org/discussion/teen-with-weird-mono-or-not/?pg=1#comment-270598

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@jmevac

Hello, where were you diagnosed? I had my daughter (16) at Lurie Children's hospital today and the infectious disease specialist literally laughed when I told her the pediatrician sent us to confirm her diagnosis and said chronic EBV isn't a real thing. I am so frustrated!

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Hey jmevac! Sorry for the delayed response. I didn't think I'd be on here again, thought I was getting better, ugh, it's back! Epstein Barr is very real, I was diagnosed a couple yrs ago at the local clinic. Doc told me I had mono when I was a teenager (I'm 40 now) every couple months or so I get so tired, swollen glands, body aches, severe vertigo etc. Epstein Barr is part of the herpes family, and like herpes, it never goes away. Some people have flare ups, some don't. I hope this helps .god bless.

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