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  1. #1
    ICN Member Kara Isabel's Avatar
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    Epstein Barr-Mono-very high antibodies?

    A few weeks ago, the new pain clinic ran a zillion blood tests, okay..more like 13 viles of blood but one of the results was very 'unusual'

    My Viral antibodies were "off the charts high", especially the Epstein-Barr (mononucleosis, which I had as a teenager) was the "HIGHEST he'd ever seen", he even called the lab and had them run it again it was so 'high'.

    I guess the normal rate is around 200 (for people that have had mono) but mine was around 2800.

    Every single one of my viral antibodies were higher than normal, which explains the chronic fatique and general malaise, but here I am wondering again if anyone else has been tested with high EBV antibodies or other looming viral counts..I feel like a walking virus! UGH!

    I just started my research on this, but I wonder if it has anything to do with the IC? It is linked to fibro, but then again...fibro is linked to IC, so one never knows..
    Hugs and Wishes for Pain FREE days!!,
    Kara


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  2. #2
    ICN Member Kara Isabel's Avatar
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    Here is something interesting I found about high EPV levels:

    EBV belongs to an insidious group of DNA-replicating organisms called mycoplasma which, once inside the "host" (person infected), set up housekeeping by invading every immunity-producing function of the body. Even more insidious, is that this organism, in order to survive, steals fragments of its host's DNA in order to create optimum living conditions, resulting in altered DNA which then can be passed on to future generations. In other words, EBV once contracted, acts like a parasite-- desiring life, rewriting our DNA, and thriving off of our blood, serum, and sterols--in return, attacking multiple immunologic systems and neuro-muscular function, activating pre-existing conditions like arthritis or shingles (from Chicken Pox), and passing on a legacy of weakened DNA to future generations of unsuspecting individuals.[2]
    Hugs and Wishes for Pain FREE days!!,
    Kara


    www.loveforearth.net ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
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    Me and my Guccigirl... she helps me through those painful hours!

  3. #3
    ICN Member Want2BPainFree's Avatar
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    Intriguing. I wonder, do they think you have an active case of mono right now? If so, why is it recurring?

    I haven't had these antibodies checked in me since I was a teenager. Turns out I am a carrier, and I got my boyfriend, best friend, and sister all infected within about a week of each other. I felt so bad.....and viral. I never had one symptom of EBV.

    However, I have had shingles. And that I'm told is quite rare in someone my age.
    Sonja

    Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

    Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

    IC Diet: Very diet sensitive, esp. to spices.

  4. #4
    ICN Member Kara Isabel's Avatar
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    No, I don't have an active case of mono, I guess I'm a 'carrier' or 'host' is a better word. I just asked my mom when I had mono and she said it was in the 9th grade, here it is 20+ years later and I have sky high levels of Epstein barr?! I guess that would explain the mysterious low grade fevers I get and those muscle aches/pains that are very similar to the flu/mono-like illnesses.

    But if this is linked to other AI conditions, I just wonder if it is connected to this one? I wonder how many of us have had mono?

    K
    Hugs and Wishes for Pain FREE days!!,
    Kara


    www.loveforearth.net ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
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    Me and my Guccigirl... she helps me through those painful hours!

  5. #5
    ICN Staff SharonA's Avatar
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    I have not had mono.
    Sharon

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  6. #6
    ICN Member kuntrygurl78's Avatar
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    I had mono when I was 16. I had it so bad that I almost died from it. I was in the hospital for two days. They gave me fluids. They were most worried that I would lose my airway because my throat was so swollen. I got sick Mother's Day weekend, and I didnt feel "better" till the middle of June. It was the end of June before I could go back to my part time job..and even then it started as 2-3 hours every few days. It took me most of the summer to recover from it.

    One of the things I remember the most was that I was so hungry all the time I was sick. But my throat hurt so bad that I couldnt hardly eat or drink anything. When the swelling went down, I just ate and ate and ate. I couldnt get full.

    My mono experience was probably one of the worst experiences in my life. It would be interesting to know if it is somehow related to my IC.
    Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

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  7. #7
    ICN Member Grammy's Avatar
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    Same thing for me

    I had these tests done a couple of years ago and my antibodies were very high in three out four catagories. The doctor told me that at one time I had to have had mono but honestly it had to be a mild case because I did not know it. I was told by my doctor that almost everyone is exposed to the epstein barr virus but most people have strong immunities so they can fight it off. Apparently all four tests had to be postive for me to have an active case of mono. Interestingly I had a slight case of the shingles last summer so I think our immunity gets rattled by being in so much pain. I think somehow it is all connected. I often wonder if someone who studied autoimmune disorders would find a connection to many different conditons. I also think in my case having had a hysterectomy was something that messed up my whole nervous system because I awoke from that surgery in a state of panic. I have wondered about Suzanne Summers theory about bioidentical hormones as being helpful to a lot of us that suffer from pain and fatigue. But how do you find a specialist that deals with that?

  8. #8
    ICN Member Kara Isabel's Avatar
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    I called my mother on this one and asked her when I had mono, she said it was when I was in the 9th grade, that sounds about right to my memory, it is just so odd that twenty some odd years later, I have such a high level of these antibodies in me? I guess I came back high for several viruses, and I think this particular pain-doctor seemed to validate for him the ailments I have, He said there is a correlation between this and fibro, but I wonder what other AI issues too?

    I just remember being sick alot as a child, I think I probably just drew the short straw on health. LOL Although, there is absolutely nothing the medical community can do for these high antibodies.

    However, that would explain the random, mysterious fevers I have gotten my whole life, I'll just spike up to 100-102 with no other symptoms! I gave up asking doctors why that happened, they just looked at me like I was a crazy hypochondriac, which sometimes..I feel like! haha.
    Hugs and Wishes for Pain FREE days!!,
    Kara


    www.loveforearth.net ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
    Twitter: Love4Earth

    Me and my Guccigirl... she helps me through those painful hours!

  9. #9
    ICN Member anewday's Avatar
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    I had a mysterious illness when I was 12 that lasted forever- cough, fever, severe fatigue. They were sure I had mono but I tested negative. Then I was diagnosed w/Lupus at 15, so maybe I had mono- I know Lupus can cause you to have a negative mono test because Lupus patients have high levels of white blood cells, so decreased wbc would be in the normal range for regular people.

  10. #10
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    I had Chronic Epstein barr 5 years ago and it made me...sm

    so sick for a year and a half I was practically bedridden. I was so weak and just sick all the time. I too have IC. Now I am thinking I have Fibro. I have the symptoms. I am gonna have to have that checked out though. But I had really high antibodies when they tested me also.

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