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|Posted By : rscott - 9/16/2005 5:55 PM|
I have been suffering extreme chronic fatigue from high levels of the epstein barr virus. Is there anyway this virus can go dorment? Are there any new drug treatments for this sickness. I can no longer work or do anything. I have been suffering for the past year and a half. Please help.
|Posted By : erin.K - 9/16/2005 6:18 PM|
| Hey there!
I read a post by SNOHARE in the thread "Please, Help"...give the post a read through, it discusses a lot of the "syndrome" effects of CFS.
I'm looking for some other threads for you that might be relevant to EBV related CFS.
erin ( erin schmerin to you)
|Posted By : CaMama - 9/17/2005 11:26 PM|
Hi rscott, Erin sent me your way from the arthritis forum.
In Feb 2003 I came down with an acute case of mononucliosis caused by EBV. I had been dx w/mono when I was 15 - typically you should only get it once in your life, but lucky me got it twice. Mono apparently can be caused by either EBV or the cytomegalo (sp?) virus - and if you're lucky enough to get it twice - the doc said that would be the reason why. One doctor told me many doctors misread the test results due to the way the readings are - I have no idea if that is really true.
But, I digress....I haven't researched EBV since I had it, but from what I did find was that there are NO answers when it comes to EBV. If you do a google search on it you'll find info contradicting itself all over the place....so, I guess what it comes down to is how YOUR body handles EBV and if you have any other underlying causes that may be making you feel like you are not getting better. You will see some people say, you get it, you get over it, it's gone. Other people say it's there for life and you will always have to be careful. You'll find info stating that if you DO NOT take care of yourself when you have it, it will drag on and on. Some say very strict dieting will be your cure all.
I think there has been studies done linking EBV to CFS and you'll probably find that on the web as well. I should probably do the reasearch myself and look at these links the other have posted.
If you have active EBV I would:
1. get time to take care of yourself - I was down and out for over 7 months and then had a pretty decent relapse by month 9 - my health and fatigue has been an uphill battle ever since.
2. get tested to make sure you don't have anything else causing additional problems - Because of my other issues with arthritis and autoimmune issues, it's anyone's guess what the culprit is for my situation. I had liver issues with Mono and then again this past year - they told me mono induced hepatitis disappears when the mono goes, so I don't know what to blame this time around for sure.....when my liver enzymes elevated again last december, I felt exatly like I did w/mono - unable to stay awake among other things.
3. look in to the various articles you can find about it and become as knowledgable as you can. though there are no drugs (that I know of) that can "cure" this, some people DO swear by certain types of eating habits that have helped them feel much better. It could be a bunch of hooey, I don't know.
4. know that it will/can take a long time to get over it you need to be patient. It takes so little to tire out when your sick w/this. My relapse was brought on by very little - so, take it easy, take it slow.
5. Find yourself an infectious disease doctor, oncologist, or whichever doctor is more familiar w/this type of disease rather than dealing w/just your PCP at least for a consultation and evaluation visit. I was dx by infectious disease when admitted to the hospital in 2003 - mono had caused the liver to swell and enzymes to skyrocket, my spleen was enlarging, and I was completely dehydrated. However, I wasn't treated by him beyond the hospital stay...so, I don't know who to recommend for sure.
I'm not sure if this was any help to you...I hope it was something...I am sorry to hear you are going through this...unfortunately, I know exactly what you are going through! I hope you feel better soon, take it one day at a time, and be patient. It's hard to have to work around something like this not know what your body suddenly can and cannot do and finding that walking to the mailbox and back is suddenly means for a very long afternoon nap.
Post Edited (CaMama) : 9/18/2005 10:02:04 PM (GMT-6)
|Posted By : Tension - 9/19/2005 7:27 AM|
Its not the epstein barr keeping u sick unless its active now, if they have done a test for past infection then thats a past infection and its not whats keeping you poorly now, i've been told the same massively high for EBV but thats in the past they did a test on it that people that feel normal have massively high for EBV aswell.
|Posted By : snohare - 9/19/2005 3:04 PM|
Once you are infected with a virus - any virus, not just EBV - you will always have some viral particles lurking in your body, waiting for the chance to get reproducing again. You can take that to the bank, inscribe it on stone, write it on the moon - no virologist will disagree. The body's immune system keeps the numbers down - white blood cells that have learned to recognise EBV are always patrolling, and it is these antibodies that the tests for EBV actually count.
My guess is, ( and this is just what I've heard mooted elsewhere, I have no idea how accurate it is) that the test results can actually mean more than one thing, if they come back abnormally high or low. For example, if the antibodies are busy beating off an EBV attack very effectively, you may feel well enough, but have so many spare antibodies floating around that it seems like you should be dying. What may in fact be happening is simply that something (not neccessarily the virus) has triggered that immune response. It is widely believed that autoimmune diseases may well start off when the immune system starts to mount an aggressive response to innocuous substances that in some way resemble some kind of pathogen. Alternatively, it may be that the immunoassay test does not recognise antibodies that are latched onto viral particles - so your immune system may be fighting the mother of all battles, you feel lousy, and yet the numbers come back as low !
Just to confuse matters, CFS sufferers may actually have a problem whereby whatever causes their fatigue also gives them the equivalent of an immunological "broken arm"; so no antibodies may not mean no active viral load, or many antobodies may not mean an effective response. That may well be a major part of the CFS puzzle. But the broken arm idea is a theory that the jury is definitely still out on.
So, you could have EBV and not get CFS, then without the handicap of an ineffective immune response you never get ill with EBV again. Or you could get EBV and recover, but develop CFS and always thereafter have to worry about overdoing things lest you suffer a relapse. (I know former EBV sufferers who have this problem.)
If you're not confused yet, you're just not paying attention. Clear as mud, eh.
My experience is, the people who state definitively that you cannot get it twice are the people who have only had it once....denial, anyone ?
|Posted By : CaMama - 9/19/2005 7:13 PM|
It's a tricky puzzle, that is for sure - all these autoimmune issues are! They are so interlocking it can be tough to figure out which came first and where the cycle can be broken, if at all.
The doctor who said many of his collegues misread the test results said that there were variations on the reading - having in your system, having it active, etc.
I was told that most people (I think 80%ish) carry the EBV virus. You can get it as a toddler (apparently a high percentage of people contract EBV between the age 2-5 as a flu) or older as mononucliosis. (Technically, EBV causes Mono, not the other way around.) The intesities of it vary - as with any virus. The virus comes and then is supposedly just living and hanging out in your throat and periodically becoming active and though you are not sick, you are contagious through your saliva (a cough, a sneeze, a kiss.) But, as snohare said - those who say it doesn't affect you more than once haven't had it more than once!
Soooo, I guess because THEY say 80% of us are walking around with the virus periodically affecting others, and the bulk of the population is NOT in bed with mono per se, THEY assume you only are affected by this virus once?
In my case, I just cannot be sure what part, if any, EBV is playing in my life now. I've had arthritis since I was a child. My autoimmune problems tripled during my 2nd pregnancy 4 1/2 years ago, and I had mono 2 years after that. . . since then, I'm typically "not well." Needless to say, fatigue is a big part of my life and always has been.
Let us know how you are doing. I hope you start feeling better soon.
|Posted By : erin.K - 9/19/2005 9:22 PM|
| hey Mr. Scott ....where the heck are you???? i hope you check on your replies soon . we need to hear some signs of life! LOL.
to contribute to this EBV thread. in 2001 i had a surgery...i couldn't really shake off the complications from it (had abdominal surgery w/ oopherectomy, appendectomy, chocolate cyst removal and part of the bowel to which it had adhered)...and developed peritonitis soon after.
had been having joint problems since age 14...but after the surgery 2001, i had positive Rheumatoid factor and ESR (@ age 20) . and basically felt like crap. the rheummy ran EBV and the whole mono labs. came back positive for both. he said under my condition it was a chronic mono and from being compromised picked it up just like anybody else. i don't even bother having labs done on them because once you have titers, they'll pretty much always be present.
you're right with the stats...mostly everyone who's left his house has some titers of EBV.
now you just have to do the things that make you feel more physically and mentally well.
i normally do not post here because CFS is not my main issue...although with my disease process i do suffer extreme fatigue but it stems from pain, inflammation, med side effects and systemic complications from RA and CD.
and remember happiness, love and laughter are sometimes better than any medicine out there.
|Posted By : snohare - 9/20/2005 5:55 AM|
A "chocolate cyst", eh ? I always knew that women had to have an organ devoted specifically to that food product...but what's its' Sunday name, I've never heard of it ?
Who's Mr Scott ? ( Note to Trekkies; I already know about that Mr Scott.)
|Posted By : erin.K - 9/20/2005 1:21 PM|
|hah! LOL. i wouldn't want that on any sunday! actually, the chocolate cyst looked a heck of a lot like a candied apple (it's where blood and tissue forms on the ovary...a benign tumor) and the appendix looks like a breakfast sausage link! eewwww.|
and mr. scott is RSCOTT! i suppose though he has been "beamed up" somewhere.
hello?? are you out there??
|Posted By : Tension - 9/21/2005 8:48 AM|
|I was diagnosed the same and i've been the same as you for 5 years post fatigue which leads me to beleive its not post fatigue and that i have an underlieing cause what i dunno me thinks virus
|Posted By : Tension - 9/21/2005 8:49 AM|
|No treatment as usual|
|Posted By : rscott - 9/25/2005 11:14 PM|
|Hello Jennifer and everyone,|
I am still around, crawling around. I had undergone more tests. I found an infectious desease specialist who is also an allery specailist. She specializes in treating CFS patients. First, she found two amino acids completey missing in my protein profile. Which she said was very odd and I must supplement them. Then she told me, not only do I have very high EBV levels, (I must have had a very bad case of mono, but never realized it was what she said) but also high herpes simplex 1 and herpes zoster (I had Chicken-pox and encephilitis when I was 35, I lost 30% of my hearing), and I have even higher herpes 6.
Herpes 6 is what she is worried about. She said this was the cause of my fatigue. For some reason there is a connection with herpes 6 and MS. And possibly other major deseases. She also found my immune system is extremely low and must be boosted immediately with Immuno-globin. She also prescribed an anti-viral drug. She said all these high herpes are having a party and my immune system is paying for it. By increaseing the immune system and taking the antiviral drug she thinks she can suppress these viruses and I will get my energy back. I hope.
Thank you all for your nice comments
I guess I should have never went snorkling down in New Orleans.
|Posted By : CaMama - 9/26/2005 8:13 AM|
Well, I'm SO glad to hear you found a doctor who gave you some answers! THat is a rare find. I hope these meds help put you on the mend asap.
Do you think this was contracted from snorkeling in New Orleans? Wow...when I was 15 I was my family when to Carson Nevada and they all got ice cream, I was so hot I just wanted a glass of ice water - BIG mistake. My abdomen fought a viscious war for a long time because of it! I contracted the parasite ghiardia (sp?) and almost failed 9th grade because I was out for so long before they figured out what was wrong with me.
Feel better soon! I wish you good health asap. It sounds like you've had more than your fair share of illness and deserve to get on the road to health.
|Posted By : watercolour - 9/27/2005 5:14 PM|
| I still cannot figure out how to make the font bigger nor put an icon where I want it so sorry this is so small.
Anyway, RScott, how blessed you were to find a dr. who dug as deeply as she did. I had a dr. once who was like that but left her because she was kinda crazy and extremely disorganized. There staff lost my complete medical files!!!
Anyway, as far as Epstein Barr goes, she found that and cytamegalovirus in me. Both were active at the time. No one has mentioned B12 shots. She gave me those on a weekly basis and they worked wonderfully for the fatigue. I too have much bigger illnesses to deal with, two that I didn't have then, but can't say enough about B12 shots. In fact, may asked my PCP to give me one when I go in next time.
It was also explained to me that once you have these illnesses the symptoms come and go. She said that after a regular illness such as a cold, bronchitis, etc., you have to start over in treating the Epstein Barr with vitamins, rest, etc. as it sticks it's ugly head out again. The CM virus, not sure.
Again, RScott, it's so great to see that there are still dr's out there that look "outside the lines". Hope you feel better soon.
|Posted By : KKeen - 9/29/2005 7:27 PM|
Just started searching some of these forums to see if I can find out any answers for my mom who is suffering for EBV. She is starting to get so depressed and I keep telling her to get involed in a support group or an on line chat to talk to other going through the same things. rscott, I would really love to know the doctor you found that was even interested in taking your case, cause nobody will talk to my mom. I want to find anyone that will try something! Anything!
Post Edited (KKeen) : 9/29/2005 7:34:02 PM (GMT-6)
|Posted By : KKeen - 9/29/2005 8:05 PM|
|Thank you. Yeah i am trying to get my mom involved. She is getting so depressed about all of this. I think the worst part is that nobody has any REAL answers or solutions. You just have to deal with it. I tried to tell her to make some sense of this and focus on positive energy. I just want to find someone holistic or medical that is willing to try something. Anything! At this point what could it hurt?|
Sometimes, even if it's just a mind set, it helps. It gives you a purpose. At least you feel like your trying to accomplish something.
Thanks for the ears!
|Posted By : Tension - 10/20/2005 10:22 AM|
|I'm going to get mine herpes checked out once and for all now that u had success.
Can u tell me are these herpes active now?????
I think you other guys reading this should get checked out get ya mum checked.
|Posted By : CP - 1/5/2006 2:07 PM|
My daughter has been ill with what i think is the epstein-barr virus.....going on now for 4 months. its reoccuring...again. i found this site to share with everyone:
we are also on a regimen of antiviral supplements.
hope this will be helpful to someone.
*Please refer to forum rules before posting links* Rule #4
Post Edited By Moderator (Foreign) : 1/5/2006 7:08:38 PM (GMT-7)
|Posted By : sslaird - 3/3/2006 4:07 PM|
|i too have read about valtrex for ebv. i take 1000 mg per day, because my cfs fevers seem to come from this. i also have high herpes-1 titers and this helps control this. neither are fully controlled, so i am going to ask my doc to up the dose. i understand up to 4 mg per day is ok|
|Posted By : Grammie7 - 6/10/2006 8:07 PM|
|I've just been diagnoised with EBV. I'm looking for anyone who can help me learn to explain it correctly to my employer. The only thing they seem to understand is that it is mono. I've tried to explain that that's incorrect but I'm not getting anywhere. If anyone can help me on this topic I would greatly appreciate it. Thank you.
|Posted By : michellemu - 7/29/2006 12:56 AM|
|I have been feeling very tired and dizzy with headaches for about a month now. I had some bloodwork done and my doctor sent me the results in the mail stating the my EBV titers were VERY high. So I called him today and he didnt seem to concerned about it. He said that my levels were 4000 and the average levels are around 100. If I dont feel better in 3-4 weeks to come back for further testing. This just doesnt sound right to me, any suggestions?|
|Posted By : CaMama - 7/29/2006 3:07 AM|
get yourself to another doctor.
You probably have mono and need rest, etc. Often the severe symptoms of mono only last between 2-6 weeks - but you should know if that is what you have and they should make sure it hasn't/doesn't affect your liver. It can take many many months before you feel better completely.
|Posted By : pollyandsay - 8/1/2006 8:06 PM|
I had ebv when I was 18. I was actually hospitalized for a week in ICU with a nurse at my side 24/7. My throat looked like there was a football stuck in it, and my liver and splene were protruding from my stomach. It was the most horrible thing I ever could have imagined. I would not wish it on my worst enemy.
I have never been the same. Lived every day of 14 years with chronic fatique. I had read those articles about CFS and ebv, and wondered if I had CFS, but last February I was diagnosed with Narcolepsy. I do not know if the Narcolepsy is a result of th ebv, but I cannot begin to tell you how nice it felt to know that I was not a hypoconriac! My mother was convinced it was all in my head and that I was just lazy.
|Posted By : CaMama - 8/1/2006 10:50 PM|
Wow, and I thought my experience in '03 was bad! I had Mono twice, once in 86 and the other in 03.....we can only assume that the first pass was thru cytomegalo virus and not ebv.
There is controversy out there that once you have EBV you don't get rid of it....good luck.**
|Posted By : Ronnie99 - 8/2/2006 9:44 AM|
|By the time a person is 40 years old over 95% of people have been in contact with EBV and are carriers for life. My understanding is that a person is only highly infectious though when they have a recent infection or if they have a resurgence of the virus. It is also possible as far as what I have read that people who first encounter EBV in middle age can get more sick than teenagers do. For older folks it sometimes becomes a chronic infection.|
|Posted By : pollyandsay - 8/2/2006 5:47 PM|
|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 By : CaMama - 8/3/2006 10:45 PM|
|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 By : panicky - 8/7/2006 2:47 AM|
|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 By : hippimom2 - 8/7/2006 7:17 AM|
|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.
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|Posted By : panicky - 8/9/2006 2:55 AM|
|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 By : mandi2006 - 8/28/2006 2:21 PM|
|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 By : mandi2006 - 8/28/2006 2:22 PM|
|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 By : CaMama - 9/9/2006 10:07 PM|
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 By : tanarican - 4/8/2008 2:21 PM|
|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.
|Posted By : supadupagirl - 5/12/2008 12:41 PM|
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.
|Posted By : down&out - 1/14/2009 3:03 PM|
|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 By : andrean - 2/19/2009 5:26 AM|
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.
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 By : Red_34 - 2/19/2009 9:34 AM|
|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 By : ladybugmandy1 - 2/22/2009 7:08 PM|
|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.
|Posted By : amy1998 - 5/7/2009 11:02 PM|
|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)
*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)
*Sensitivity to noise and light
*Heartburn, constipation, severe stomach aches
*ear aches & buzzing in ears
*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 By : orchidea - 9/15/2009 4:07 AM|
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.
|Posted By : Birdy86 - 9/23/2009 7:05 PM|
|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 By : EBVME08 - 7/14/2010 9:35 PM|
|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 By : pa7k - 2/16/2011 2:59 PM|
|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 By : panther fern - 3/17/2011 11:21 PM|
|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 By : scaredofswine - 3/25/2011 1:10 AM|
|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 By : Deb25 - 3/31/2011 4:22 AM|
|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 By : seekanswers - 7/13/2011 2:02 AM|
|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 By : Deb25 - 7/13/2011 3:21 AM|
|Sorry Seekanswers, I can't answer that...I have no idea.|
|Posted By : seekanswers - 7/13/2011 3:30 AM|
|Thanks, Deb25. Maybe someone else will.|
|Posted By : ktp812 - 7/14/2011 6:10 AM|
|seekanswers - I recently had my EBV tested and it was 640 which is a different number from yours. I was told it was extremely elevated. My test didn't have a range on it so I have no idea what the range even is. Mine was also EBV IgG VCA|
I did have HHV6 done and it was 21.44 with a range of 0-1.1 being normal so I know that one is high. Was your EBV an Elisa test from Quest?
|Posted By : seekanswers - 7/14/2011 12:55 PM|
|ktp812, I just found a category above the one i listed B4.|
Epstein Barr Virus VCA
EBV Capsid AB IGM is <OR = 0.90 In Range Index
<OR = 0.90 Negative
0.91 - 1.09 Equivocal
>OR = 1.10 Positive
Then it says
Epstein Barr Virus VCA
EBV Capsid AB IGG 5.92 H Index
<OR = 0.90 Negative
0.91 - 1.09 Equivocal
>OR = 1.10 Positive
ktp812, I don't know if this means anything to you.
If not I hope someone can tell me what that means.
|Posted By : pitbull486 - 7/23/2011 8:14 AM|
|pa7k, I am interested in hearing more about evtox and the results you have had with it. I have given up on Western Medicine as they have done nothing for me over the past 3 years except keep me sick. Any info you can provide would be greatly appreciated.|
|Posted By : wynnie - 9/17/2011 8:37 PM|
|@SeekAnswers: Anything above 1.10 is positive so your result is positive.|
I have chronic EBV and am currently seeing an infectious disease specialist. My EBV (VCA) IgM is within normal range; however, my EBV-EA is very elevated. I don't know the difference between these tests.
I hope that helps explain a little on your tests and hope you're beginning to feel better. I have had chronic EBV for over 20 yrs and was always told by doctors that there was nothing they could do for me but to treat the symptoms. I'm hopeful for the first time in my life. I am on 1 gram Valtrex 4 times/day. I also have HHV6, a heart condition caused by the chronic EBV, & mycoplasma pneumoniae. I was negative for Lyme, CMV and many other viruses.
|Posted By : phoenixlemur - 2/1/2012 5:15 PM|
|Ditch the antivirals. Try Larrea Tridentada. When it works, and I'm willing to bet a lot it will, get on with your life and tell other people. This has helped quite a lot of people with anything in the HHV family. No sense in living like a ghost. Seriously try this.|
|Posted By : Dunwidit - 3/17/2013 11:51 AM|
I was diagnosed with lyme disease and EBV back in 2009. I went to a homeopathic doctor for treatment because the antibiotics only made me relapse into a worse state. Once on the homeopathic remedies and herbs and supplements, now 4 years later it is under control. However I still have bouts of chronic fatigue and I seem to catch every flu and virus that comes along. After my second flu this winter I went to the doctors to get multiple tests done. They found my EBV levels were at 535 when they should be under 38. I also had Mycoplasm pneumonia and herpes 1. The doctor had me out of work to rest to get over all this. Its been 4 weeks now and I am back to work full time. I need to nap at lunch time to get through the day and when I get home, I just change my clothes eat, clean up and go to bed. I have been taking anti viral herbs, Lysine, Olive Leaf extract, adrenal supports and homeopathic remedies prescribed by my homeopathic doctor. I am feeling better every day and I am hoping to get to the point, again, where I can exercise, do yoga, walking, etc, and still have energy the next day. It seems now I have to watch evvery activity as to not over do it. When I get 10-12 hours sleep I feel almost normal. Does anyone else have this up and down stuff. I seem better in the spring and summer , then fall comes and I want to hybernate and I get sick alot and the fatigue is very hard to deal with. If it wasnt for my special doctor and the diet, herbs, supplements she has me take, I dont know where I'd be. The Medical Doctors did nothing but tell me to rest. I would have been on disability for weeks and weeks. Thanks to my doc I was only out 2 weeks and one week at part time. The worst thing though is people just dont get the exhaustion we feel. They say, oh everyone gets tired. But not like we do. But I am hopeful that with a good attitude, the right foods and supportives that we can get better.
Good luck everyone and good health to you!
|Posted By : kbielec - 7/1/2015 12:43 PM|
|I am hoping someone reads this and can help me.|
I am 38 and a mother of an almost 3 year old who works from home. I was diagnosed in January with "mono" and the numbers are still "high" well two of them and I don't understand why I can't kick this and why I'll feel better then I won't and I have had such crazy symptoms. Swelling, migraines, neck pain, I have been tested for EVERYTHING and nothing (thank god) is positive but this...HELP!!
The EBV VCA, Igm is 60 (has gone down 3) since Jan.
EVB Ab VCA, IgG is 346 (was 185)
I am so over this!
|Posted By : kbielec - 7/1/2015 12:51 PM|
|Thank goodness I have found this. I hope someone reads this.|
I felt terrible and had "weird" symptoms (swelling, stiffness, etc) in Jan this year so after a handful of ER trips and a lot of CT scans, tests, Doctors, MRI's they found EBV. I can't get rid of it.
I just had my levels run and they are higher than they were in April.
I now am being treated for Migraines which I have NEVER had. I have had PT on my neck, it's killing me and now they are going to inject steroids in it. I see my blood doc for Factor V and MTHFR that they found 5 yrs ago and he is trying hard to help me get rid of the EBV but dang...
I work from home and have a daughter to care for this is NUTS. HELP! Suggestions?
|Posted By : orbigirl - 7/11/2015 8:02 PM|
|Hi I have active Epstein Barr, I have had it for many years. Back in the 80's I was treated with B-12 and Gamma Globulin shots once a week for about 6 months, I was in complete remission for over 10 years, I never caught a cold, the flu, did not have any symptom's of Fibromyalgia or Chronic Fatigue Syndrome either. Now I live in another state and can not find a Dr. who is will to help me I called my old Dr. who treated me and he said he is now giving B-12 with Magnesium shots and they seem to be helping his patients. The only way to take it is injections just taking the vitamins does not work. I still have not been able to get anyone to help and I can not afford to fly back to where my wonderful Dr. is located. I understand how you feel as I walk that same path. I will keep trying to find some Dr who can help. The problem is that most Dr. don't care and I had a Dr tell me that. It takes many many hours of research for them to understand what people go through with Active Epstein Barr and they don't make any money do that. Hope you feel better soon.|
|Posted By : babs64 - 7/15/2015 4:14 PM|
|I will be, 64 next month. 6 years ago I started having a sore throat that wouldn't go away. I didn't go to my doctor until months later. I was moving from where I was living to another state, so, my insurance was going to change. I would no longer have my doctor I had, had for, 25 years. I went to see him the day before I moved. It concerned him so much how bad my throat looked and how long It had been hurting, he wanted me to stay long enough to be tested for, cancer. My saliva glands were also swelling up, very large for several months. It would come and go. But, it wasn't until the day I moved that getting sick set in. Before that, my throat hurt and my glands would swell up pretty bad, but, I didn't feel sick. So, July 17th, 2010, the, horror started. I had every test known to man. ENT, did the scope. No cancer. MRI's, CTS's, because I was so sick, everything hurt, etc. they did, colonoscopy's, gallbladder, all of it. Nothing. Till one day I couldn't take it anymore, I was so sick. I hadn't slept in almost 2 months. The pain, the sick...so, my daughter told me there was a clinic up the street and she had seen a, PA there, that was very nice. ( I won't even talk about how rude the doctors had been. I still can't get over that) Anyway, I went to this, little piece of heaven, PA, named, Anna. I told her all that I just posted. She took a couple of blood tests. I waited for several days and hadn't heard anything. So, I figured, they too came back negative. But, it was, 5 days later her nurse called. Low and behold, I had, mono. My B12 and D were extremely low. She said just the, B12 and D being so low could cause you to be so tired, but, mono on top of it..So, now it is, six years later. I know there is nothing they can do to get rid of it. Time went by, and nothing got better. Anna, treated the symptoms. Its all she could do. She gave me sleep meds and pain meds, B12 and D3. I had all those symptoms I've seen others talk about. The extreme tired. You're so tired, something you've never felt. But can't sleep. So sick I couldn't eat, but I was gaining weight. Memory was shot, confusion, blurred vision on and off. My muscles hurt so bad I could lift anything and took everything I had to get, upstairs. The harder I tried to function, the sicker I got. She told me to quit doing that. To rest. Most important thing at that point was, rest. But, now this six years later. My muscles don't hurt, I"m not sick. I can't lose weight as hard as I try. I still get blurry vision, I still have trouble with, memory, trying to find words, etc. Finally, she put me on, amphetemines. The first, prescription was too strong. So, lower dose. I still take sleep meds. and I still take, amphetemines. She called the, CDC when I was still testing positive and they said, " after six months and the tests haven't changed and symptoms haven't changed...they call it, Chronic Fatigue. That was after 6 months of the original diagnoses. Then I had a flare up a few months back, the tired and sleepy was so, extreme. My body hurt everywhere, on and on. So, she sent me to the, CDC. ( she did the blood work) she said the numbers were way too high. The CDC said, yes, you've had, EBS and mono...but at this point, they said, " You have an active virus infection, but, there is no way to know exactly what it is. It's either, Chronic Fatigue or Fibromyalgia. Because of the body pain, she's going with, Fibromyalgia. There is no conclusive test for either. Just symptoms. So, what I am doing besides taking my, sleep meds and amphetemine...I'm doing liver cleanse, I've cut out, milk products, wheat, and very little meat and no sugar at all. I take a cell cleanse detox. What I'm trying do is, clean as much as built up toxins out. I eat all organic, i use, essential oils, take my raw, D3 and B12, and Magnesium/calcium. 90% of our meals are, raw vegetables and fruit. small amounts of meat. eggs and bacon. no nitrate bacon. only carbs we get is from the salad. I'm starting to feel better. and we have fine tuned my meds. Just the exact amount for now, for sleep, energy, and very little pain. I also go to a, chiropractor once a week. As I feel better, i cut back on the pills. I went long enough in pain, no sleep, and NO, energy and way too tired. The stress from all of that, was enough to keep you sick. So, my stress is down a lot, I can participate in life, we even went and helped in a soup kitchen last week. I'm not back, 100% but I'm working towards it. The reason I detox, is, this site I go to on supplements said, when you have a life time of toxins from the air, your home, body products, things in food, etc...your body is full of toxins, if you don't detox it, you can take all the supplements you want and they won't work. Your body can't handle it. So, I'm trying to clean 60+ years of toxins out. I think the, mono happened in the first place because of stress...at that time, 6 years ago. I lost my mom, my sister, my husband was having major surgerys on his spine for over a year (5 surgery's) my daughter and her husband and kids moved here where we live now, which took my grandkids away, it just got too much so I can see how I was getting sicker and sicker...so, now, I've warned everyone. You want to give me grief, etc. don't even try. I gave so much to others, I had none left for me. So, for now. I make it about me. except for my grandkids...it will always be about them. That also happened after we moved here. I had just had a major surgery and was back up on my feet for a week, when my grandson was diagnosed with cancer, he was 12 at the time. We spent the next 9 months getting our baby well. If I took all the stress I have ever had in all my life and added it together, my dad dying, my mom dying my sister dying, and just life in general, wouldn't add up to the stress and horror that was. The love of my life, him and his brother is what kept me going to that point. They were the reason I needed to keep trying...and now, one was fighting for his life. But, by the grace of God, he is in remission, he has, 3 more years of tests before they will call him, cured. But, we all know that the, chemo and radiation will rear its ugly side affects some day...he will be, 16 in a few days and he makes my heart smile..him and his brother. God is good. So, that's my story. Nothing new for some of you. But, if I can be of any help answering questions, etc...I would be happy to. Thanks for letting me share. If anyone has any suggestions for me that might help in my quest to get well, please let me know. Babs|
|Posted By : babs64 - 7/15/2015 4:36 PM|
|Once I understood that, EBV is a virus like, chicken pox. meaning, with, EBV, if you've had it, you can get, mono later. They said you had to have had, EBV, to get mono. Just like, you had to have had, chicken pox to get shingles. Not everyone does but you are at risk for it. It said, 95% of people have been exposed and had, EBV, in their early years. So, once I understood that there is no cure for a, virus, but it can and does go into, remission. There is no test for, Chronic Fatigue or Fibromyalgia. But they seem to go, hand in hand. Just different symptoms. I had mono, then the CDC said after six months and you're not well, they call it, Chronic fatigue, and now, with the new symptoms plus the old symptoms, they are calling it, fibromyalgia. Because of the all over body pain and inflammation. But, I am taking hold of all this. After 6 years i had to. yes, I take sleep meds, pain meds and amphetimine prescribed by my doctor. It keeps my stress at a low level, so I can work on this. 100% organic, no dairy, no wheat, no sugar, small amounts of meat, lots of beef and chicken stock for protein, that helps in healing. and tons of raw. Raw veges ( we grow our own organic garden ) and raw fruits, the specific supplements I need. And pray...if this doesn't do it, nothing will. As I feel better, I reduce the, meds...after six years of this, come and go, come and go...and even when i would get better, that wasn't saying much. But, when It would flare up again, it was always worse than the time before. So, i'm two months into this, " getting myself well " and I'm, praying and hoping by this time next year, I will be well. But, I'm giving it all I've got. My doc knows I won't abuse my meds. But, I told her. As long as I'm, sick, hurting, tired, tired x100 I'll never be able to get well. I'll never be able to do what it takes to hopefully get well. You can't be, exhausted and hurting everyday all day, year after year...and get well. So, by God's grace and hard work...we will see. I also go to a, Chiropractor. which really does help alot.|
|Posted By : babs64 - 7/15/2015 4:42 PM|
|There is no cure for, EBV, aka mono, chronic fatigue, or fibromyalgia. EBV is just that, a Virus. You can't cure a, virus. You can prevent them with, vaccines, if there are vaccines for what you have. Like, chicken pox. But once you have a virus, its not going anywhere. In some cases for what ever reason, a virus will leave the body but thats rare. Mostly they go in, remission and some never do. Like, if you end up with, chronic fatigue. It most likely isn't going to get much better...EBV is a virus there is no cure for a virus...just remission.|
|Posted By : leanabeana - 5/2/2017 11:10 AM|
|I just got my EBV results and I am thoroughly confused. A few of my values are high, but my doc says it's nothing to be concerned about because it only indicates past infection. |
Does anyone have insight?
EBV AB VCA, IGM <36.0 U/mL 0.0 - 35.9 U/mL
Equivocal 36.0 - 43.9
EBV EARLY ANTIGEN AB, IGG <9.0 U/mL 0.0 - 8.9 U/mL
Negative < 9.0
Equivocal 9.0 - 10.9
EBV AB VCA, IGG 119.0 U/mL 0.0 - 17.9 U/mL H
Equivocal 18.0 - 21.9
EBV NUCLEAR ANTIGEN AB, IGG >600.0 U/mL 0.0 - 17.9 U/mL H
Equivocal 18.0 - 21.9
|Posted By : jeanneac - 5/25/2017 5:45 PM|
|EBV is in the herpes virus family and all herpes viruses live in the body, we never get rid of them. Just like chicken pox and HSV 1 and HSV 2. It can come back to haunt you. |
Many, possibly most, people get EBV and it barely affects them. The rest of us get very sick from it. I had it when I was about 19. Got so tired one day I thought I couldn't make it to my car. I seemed better in a week though and went back to college. I seemed fine until I got around 40 and started having problems with fatigue. I had a high titer to it still in my late 50's when I was tested a few years ago. The doctor thought it was important. I also had high titers to another herpes virus and a parvo virus. I've had Hep. B and no longer have antibodies to it. I think keeping the high titers means the virus keeps trying to attack my system.
|Posted By : bornwitheyeshut - 6/4/2017 12:18 PM|
|this is my first reply to a post and first time on here I'd like you to bare with me. |
I have EBV, CFS (or whatever they named it now, I think SEID?), Severe Sleep Apnea (60 apneas per hour), AIWS (which is Alice in Wonderland Syndrome) & recently memory loss.
The AIWS is not fun as some may think but in fact very scary. My neurologist has suggested I take Riboflavin/B2. I'm still waiting for that to build up in my system so I take Excedrin Migraine at the onset of the migraines.
The reason I am including all these things is because they all go back to EBV in some way or are worsened because of the EBV.
Other things I know I've dealt with but haven't been properly diagnosed are Entoptic Phenomena & Nickel Allergy. Which are substantially present during or around peak times of any of things I suffer from.