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Posted 8/2/2006 4:47 PM (GMT -7)
I actually had a milder case of mono about 6 months after the big case. Which back then they said could not happen, but it did. I strongly believe that ebv lingers in a person forever.
Posted 8/3/2006 9:45 PM (GMT -7)
It is true, from what I understand, the older you are the worse it can be. A large percentage of people, I'm told, get it before the age of 5 and it appears as a flu and nothing else.

 

Posted 8/7/2006 1:47 AM (GMT -7)
yes im 27 male diagnosed with mono may 1st they said i had a mild case did any of you have muscle aches and pains and weakness in muscless that was the main thing for me and sore ribs and itchy skin throat a little sore and 1 swollen node not to swelled though but i been fatigued still light hurts my head i get anxiety attacks i can't take this much more i feel like im 80 im so streesed my father is in the hospital with an anuerism on his heart my mother wanted me to wake up today and take her to see him i felt so bad i couldn't get up but eventually i did and can mono lower your lymphocyte count mine was 15.9 normal is 20-51 from my hospital my tonsils were never white also but monospot is only 85% accurate i was worried about hiv or mold in my apartment cause my g/f has same symptoms as me she was neg for hiv though and neg for monospot twice if you have mono and it goes away will the monospot be positive for the rest of your life. but im startin to think i have CFS, here in pittsburgh it seems like alot of people are getting sick with mono kinda strange maybe there puttin somethin in the food to weaken everyone's immune system for when the bird flu hits
Posted 8/7/2006 6:17 AM (GMT -7)
panicky, it's hard to know what might be going on, but even a mild case of mono can take a long time to recover from. I think a lot of people are more succeptible to fatigue and cfs after they have had mono - I know that was the case for me. I'm not sure if mono can affect your lymphocyte count, but your doctor could answer that question. SOmetimes it does seem like there are clusters of illnesses where a lot of people in one geographic area get sick. CFS came to the forefront in the 1980's after a bunch of people in the lake Tahoe area came down with a "mystery illness" that was later named cfs. I do think our world is becoming more and more toxic which probably makes people more succeptible to these kinds of illness. I'm sorry you are going through so much stress lately - it makes it hard to recover. Also anxiety is pretty common for people with cfs. DOn't give up trying to find out what is wrong - keep going to the doctor. SOme people have found that going to an infectious disease doctor has been helpful in figuring out what is wrong. Hang in there - we are here for you. Diagnosis:  UCTD (probably lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Prednisone taper   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/
Posted 8/9/2006 1:55 AM (GMT -7)
ty mom well my doc said my lymphocyte count was a little low because of the mono but i don't know i don't really ever take naps but when i sleep i sleep 10 - 12 hours sometime but when i am up i have no energy but my family always tells me and my g/f don't go to doctors they will make you sicker and tell you that you have this and that which my mom is 70 smoked for 50 years never ever goes to the doc and she's in really good health i think better than me but i worry about hiv alot but i don't know im a big worrier.
Posted 8/28/2006 1:21 PM (GMT -7)
Hi, I have been suffering from extreme exhaustion and nausea (even though I never actually get sick) for over 3 months now. I have been working out since February which struck me as odd because I always heard if you work out it will give you more energy. Well, I finally went to the doctor last week and they took blood. Turns out, I have EBV, which makes absolutely no sense to me. I've been reading up on it and basically find alot of different answers. My main question right now is that I'm seeing a person with EBV should contact an infectious disease doctor. My doctor told me if I'm still feeling this way in three months then to come back and have more bloodwork done. What do I do? Go with my doctor's advice or what I'm seeing on the internet. I've been told not to always believe what I read on the internet. Help!
Posted 8/28/2006 1:22 PM (GMT -7)
Also, I'm finding alot of herpes involved with this... Do I have an std? I'm starting to freak out but understand I might be misconstruing what I'm seeing on the internet.
Posted 9/9/2006 9:07 PM (GMT -7)
Mandi,

Don't freak out. If you have reason to believe you have an STD then go get checked for them. If you have a lot of concerns, find a doctor you trust and see him/her. Get a second opinion on the subject if necessary.

There is a lot of contradictory information out there on EBV....you have to just go with your gut and do what you think is right. Mono/EBV DOES take a long time to get over. If your liver and spleen are affected by it, it will take even longer to recouperate. If your liver is affected AND you were put on medications, that will slow the process down as medication will make the liver worse.

I think the main thing everyone does agree on is that a healthy diet is essential, lots of raw veggies, lots of water, lots of rest, and take good care of yourself, listen to your body.

Let us know how you are doing.

***

 

Posted 4/8/2008 1:21 PM (GMT -7)
I was just diagnosed with EBV after having been sick for 6 months. It started with constant nausea, fever, and utter exhaustion. Now, it is much more mild than in the beginning, but I aways feel a general feeling of fatigue, dehydration, and nausea. I am an extremely physically active person, energetic, and driven, and refuse to accept that I am just going to have to feel like this forever. I know that the symptoms can be somewhat controlled by making dietary changes, taking vitamins, etc. I was wondering if anybody out there with this condition has found a regimen that has helped them to manage the virus and live a somewhat normal life.

In addition, what kinds of laboratory tests/etc have people done in order to assess the situation, and are there other related conditions that I should be vigilant of?

Basically, I'm just looking for a very practical way to tackle this thing. In about 6 months I will be in a position to really seek good, thorough medical care but in the meantime I am out of the country doing volunteer work and have limited access to medical care. I'd like to do what I can while I am away to control the situation, then get after it with my doctors when I get home.

Thanks everyone.
Posted 5/12/2008 11:41 AM (GMT -7)
Hi everyone!

I only read the first post so not sure what you other people wrote. I have talked to some people with active EBV and it seems sometimes it´s active according to the tests and sometimes it´s not. You can´t say you can´t contract a virus again, since some of them lay dormant in the nerve endings for long periods of time. Here in Sweden the doctors say they can´t do anything about it. I have seen some trials of Valcyte on the internet and someone wrote about it on the next thread as well. Dr See wrote that in an article I read a long time ago that you can have many viruses active at the same time in Me/Cfs. Some herbal therapists suggests various herbs to combat viruses and strenghen the immunesystem. Some people think oxygen as in hydrogen peroxide and ozone can clear viruses. Some people think Rife machines can destroy viruses. There are various options but none that can guarantee you getting better. When your immunsystem gets stronger it naturally suppresses viruses as well, so it´s also the other way around sometimes.

Maria
Posted 1/14/2009 2:03 PM (GMT -7)
hi, I just wanted to know if anyone knows the extent that this virus affects the liver and does anyone know if this condition is fatal?
Posted 2/19/2009 4:26 AM (GMT -7)
Hi,
I was diagnosed with EBV in 2006 and Dr. Jenefer Huntoon gave me therapeutic enzymes to open the cells and allow the virus to come out and another set of enzymes to digest the virus. The program worked without the side effects of drugs. I still take some enzymes but only in small quantities now. Here is a link.

http://ebvenzyme.blogspot.com/
Chronic Fatigue; Epstein-Barr Virus; IBS; Food allergies to milk, wheat, sugar

I have been helped the most with therapeutic enzymes and botanicals prescribed by Dr. Jenefer Huntoon and relaxing music and the practice of yoga

Posted 2/19/2009 8:34 AM (GMT -7)
Hi! I'm from over on the Ulcerative Colitis forum and seen the title of this post so I thought I would stop in and ask a question. How long can mono stay in your body? Is it a lifelong thing meaning that once you have it does it remain dormant in your system until something activates it again? Truthfully I am not that educated on mono but I did have a pretty bad case of it when I was 17. Lately I have been so extremely fatigued that shouldn't be contributed to my other illnesses (which are in remission) nor my medications. I have been to the doctor and she has tested me for everything under the sun but yet I still feel sometimes weak and I feel like I can just fall asleep on my feet. I'm just trying to figure out the cause of this intense fatigue.

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Posted 2/22/2009 6:08 PM (GMT -7)
hello. it would be helpful if you could see an infectious disease specialist who specializes in CFS/EBV such as dr. a. martin lerner in MI. you will need EBV antibody subclasses test. you may need antivirals to solve your problem.

good luck

sue

Posted 5/7/2009 10:02 PM (GMT -7)
I have had EBV for 14 weeks, ( bedridden for 11 weeks) and have thankfully started to feel a bit bettter and wanted to share what I've done in order to get back to a semi-normal life. I have been completely frustrated with the treatment for EBV....doctors just say, "Go home and sleep". This is not a good enough answer for me. I am fortunate enough to have good health insurance and I just wanted to share and hopefully help anyone who is suffering from this virus. I searched and searched for answers and believe me...there is really not much out there except for out dated and conflicting advice.

First, I have never in my life experienced anything like this virus and my struggle is still continuing. Thankfully, the bad days have started to become less and less. But, in the beginning, I really thought I was dying or going crazy. For the first 2 weeks, I could not move or eat. I finally got the diagnosis when I went to an internist and begged him to test me for everything. My EBV was 1522 and DHEA was 1342. I'm a 37 year old healthy female, the only problems I was having before this were hormonal issues and I was also in severe pain after working out (of course, people responded "you just need to work out more".....in my case, not so.)

My second lab test (about week 5 or 6 of virus onset) the EBV elevated to 2338. I finally broke down and started Valtrex, and it honestly helped ME alot. I wish I would have gotten the precription for Valtrex at the first diagnosis, but I'm hard headed and I'm not a big supporter of pharmaceuticals. But, with all honesty, they have helped me.

The early symptoms I had:
*fatique so bad, like the blood in my body wasn't even flowing; a complete energy crisis
*Dizziness & tunnel vision that both lead to nausea
*Extreme Muscle pain (especially in neck, back and legs)
*Insomnia
*Heart Palpatations
*Unable to think, eat, almost dulsional
* I had to force water into my body
*Weakness and tightness in muscles (for a week it was hard to walk and when I did get up it was like I was drunk)
*Migranes
*Major anxiety
*Sensitivity to noise and light
*Heartburn, constipation, severe stomach aches
*ear aches & buzzing in ears
*Mild fever
*Lots of tears, frustrations, bouts of anger

I'm about 75%. I still suffer from muscle aches and tightness, spasms, migranes and fatique. But, I am not bedridden everyday like I was for the first 11 weeks.

I read the book "From Fatique to Fantastic" and I'm following the vitamin supplementation in the book. It's alot of pills to swallow, but I will to anything to kick this virus. I do believe it has helped. I had low Vitamin D, so also I've added it 2 X a day. I would highly recommend Vitamin D if you are in bedridden. I wish I would have started it in the beginning of the virus.

I am doing restorative yoga just about everyday or when I can move or feel like it. I started a few dvd's about 4 weeks before I got sick and whenever I can do 5 minutes just to stretch my muscles I feel better. I highly recommend "Candlelight Yoga" and "Meditation for Beginners" they are both gentle and relaxing. I rented them from Netflix, then I liked them so much I bought them both from Amazon.

I am taking the following RX:
AM: Wellbutrin, Celexa, Valtrex (500 mg)
PM: Valtrex (500 mg), Ambien CR (12.5 mg)

Before I got the EBV onset, I was taking no rx drugs.

I have also changed my diet in MAJOR ways. I flew from CA to Portland, Oregon 4 weeks ago, around week 10 of virus (it was an very painful & tearful flight). The doctor did a blood test to find foods that were inflammitory and that my body was reacting to. Among the list were thing that I was eating alot of and I thought were healthy. On the list were eggs, all beans, flax, dairy, and others. I cut them out and I'm not having the bad stomach problems and pain. I know this is not for everyone. But, I am determined to not eat anything processed or in a box. This is out of sheer determination to heal my body and be healthy.

I now only ocassionally eat meat and my diet consist of mostly veggies and fruit. I use our juicer ALOT (atleast once daily, mostly 2 times a day). And...those of you that say eating healthy is expensive, I swear, it's not! At Costco, you can get in HUGE amounts organic carrots, celery, grapes, apples, oranges, berries, kiwi, plums. I am able to load up for around $55 for the entire week. This also provides enough fruit and veggies for my husband and daughter.

I hope that anyone that is reading this this that has EBV is surrounded by love, compassion and understanding. It is an unexplainable experience and I wish I could say that it has been easy. My only advise is to listen to what your body is telling you and give it what it needs. I can't tell you the things I have done will help anyone else, but I have reached out to many doctors and I recieved no real answers. I wasted alot of energy to try and find "the answer" at a time when I had very little energy available. I have a new found compassion for people with chronic illnesses. I hope that by sharing what I went thru, I can help anyone who is able to find this information.
Posted 9/15/2009 3:07 AM (GMT -7)
Hi there,
I view your post here and I really need to comment.
I too had high level of EBV, I also had severe sleep problems, so although I wasn't really diagnosed with CFS, it was really bad.
Based on a friend recommendation and a short research I did on my own, I started taking Gene-Eden, and my life, especially my sleep was changed!

Why did I choose it over other supplements available?
well, first of all, I am not taking drugs and sleeping pills because of side effects, and I have tried other "green" supplements as well, some helped less and some more.
But this one, It's an antiviral supplement that specifically targets chronic (dormant) viruses in our body, such as EBV, CMV and Herpes.
By reducing the level of chronic viruses in our body, they reduce the risk of having serious chronic diseases adn disorders.

I decided to take a simple blood test to check my EBV, CMV and Herpes levels before (the supplement), and after (2 months)- to see if there are any medical results.
CMV was ok, but I had high level of EBV before taking the supplement, and after 2 months my EBV level went significantly down (didn't disappear completely)!
I went from lower dose (2 caps per day) to higher dose (4 caps a day)- after 4 weeks, and this is when I started feeling the improvement.
It was after few weeks only that I started feeling the difference in my sleep- it became deeper, I woke up less at nights, and was full of energy during day time.

I also changed few nutritional habbits (ate less during night time, less caffeine, etc)
In overall, I am doing good now.


smurf
Posted 9/23/2009 6:05 PM (GMT -7)
There's such a thing as CFS caused by chronic mono (the Eppstein Barr virus), which is what my doctors are looking into as well. Not that it's that useful of information seeing as, to my knowledge, it's as without a cure as all CFS is. I completely understand your frustration-- I've been sick for 2 1/2 years with no end in sight. I just have to hope there's a better way of coping that I haven't discovered yet... and that's why I'm here.
Posted 7/14/2010 8:35 PM (GMT -7)
Now, I really don't feel alone. I'm 41 and was diagnosed with EBV/MONO in June of 2009. I had to be my own advocate on this mission, because, I was misdiagnosed from November of 2008 until June of 2009. I was very sick and the older you are with this thing the worse off it is. If I would have known what it was and not have stressed out so much, it, would have been easier on my immune system and overall healing. Make, no mistake this virus is linked to many things. Dr.s are not going to be your healer or your best friend. Dr.s practice medicince..I put the emphasis on "Practice"....Maybe, there are a few good ones left?? I had all of the classic symptoms of mono and elevated WBC along with the really rare and dangerous ones. I was blown off as just having depression. When, your immune system is compromised you get depressed.I advise homeopathic remedies for EBV.
Posted 2/16/2011 1:59 PM (GMT -7)
I am on evtox to get rid of Epstein Barr, its been done before by others. Its homeopathic. I am feeling so much better since.
Posted 3/17/2011 10:21 PM (GMT -7)
Often viruses stay dormant in the body,like the varicellis zoster virus which is considered a herpes virus gets stored in your spinal ganglion and as you get older and in times of high stress this comes out as Shingles. The varicellis zoster virus is extremely common.. it is chicken pox.

I know the Epstein Barr virus is a tricky one, I am not sure if your body rids of it or not but i will be interested to look for that information

Whoa, i just got a big wave of I am tired.

Wishing you all of the best.. If i were having a multitude of immunology problems I would write down the question and investigate the internet or wherever to look at how immunology works.. i like to understand things.. some people don't either way is cool. anyway i just wanted to send all of you best wishes on your search for answers.
Posted 3/25/2011 12:10 AM (GMT -7)
Panicky was my old nickname can't believe some of my posts are still around from 2006 and still feel the same except mush worse leg pain, and amy1998 i have like every symptom you have.
Fibromyalgia, Manic depression, Panic disorder, Anxiety attacks, Degenerative disk disease, Arthritis, Bulging disks in L4 L5 C4 C5 All this at age 32 :-(

Xanax 1mg twice a day, hot baths for the pain, due to strange doctors where i live
Posted 3/31/2011 3:22 AM (GMT -7)
I was diagnosed with CFS because of my elevated EBV.  My doctor told me that once you get this virus, usually from mono, it is always in your system.  For most people, EBV lays dormant, but sometimes will flare.  From what I have read, by adulthood, most people do have this virus laying dormant in their bodies.
Posted 7/13/2011 1:02 AM (GMT -7)
I have an 5.92 Range is H Index, for an Epstein Barr Virus VCA Antibody (IGG) EBV Capsid AB IGG. Ot says <OR = 0.90 Negative, 0.91 = 1.00 Equivocal, > OR = 1.10 Positive. So what does a 5.92 mean?
Posted 7/13/2011 2:21 AM (GMT -7)
Sorry Seekanswers, I can't answer that...I have no idea.
Posted 7/13/2011 2:30 AM (GMT -7)
Thanks, Deb25. Maybe someone else will.
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