chronic epstein barr

[orbison]

I had Mono about 20 years ago, that is how I got CEBV I have Mono symptoms that come back a few times a year, this time I have had it for over a month, I lymph nodes are swollen, and my throat is on fire, I have night sweats and chills.  I am extremely fatigued, what I do not know is when I have these reoccurring symptom's if I am contagious, and if I still need to be careful so the spleen does not rupture. Does anyone know if you are contagious every time you get the Mono symptom's?
  

[mkh9]

I wanted to tell you I just read that a anaerobic bacteria called Fusobacterium necrophorum and other Fusobacteria sp. and can cause chronic sore throat and F. necrophorum also has been linked to Lemierre syndrome, which has peritonsillar abscesses but also thrombophlebitis of the jugular vein (which you don't have) after acute sore throat.  So, I know you had EBV thought to be the cause of our tonsil. But did they culture it out? If not I wonder you don't have any tonsils left at all? Because the F. necrophorum (which can be found in the mouth) would make sense. Just thought I would mention it.
mkh9

[mkh9]

Just wanted to say I 'm glad you didn't buy into the MS thing. And that they didn't tell you you had it. Have you ever had a EEG? Do you have migraines too? The electroencephalogram or EEG looks at the electrical part of the brain. It is more for looking at migraines and seizures. It might explain the cluster headache. You really have had the run around. I have too with my migraine variant. I hate that the doctors are more focused on money than care. But that is the way it is. I am glad that more people are going to get coverage with Obama care than those that couldn't afford it but if it makes the medical system get worse due to cuts and layoffs  it won't be a pretty picture. Only time will tell really. At this point things are still very competitive so it doesn't matter. That is a good idea having the two doctors talk. Let me know what happens.
mkh9

[orbison]

Thanks for all the help you have given me already.  What I think I will do is see if the Dr. I am seeing now will consult with my other Dr.  They is such information he can give her just to help with what EBV can do to the body I was astonished by what he said to me, he asked me if I have had weird sensation inside by head, and I told him oh my God yes, some of them are painful like small electrical volts shooting all over. This happen a lot last year with painful headaches everyday all day I night long, they did a CT scan and it showed slight swelling on one side of my brain but they waiting a while then did and MRI but during this time I had to go to the emergency room a few times the headaches were so bad, they said they were not migraine nor were they cluster headaches.  After the MRI they said I had MS sent me to a specialist in a bigger town a few hours from where I live and this is what he said to me.  I can tell you what you don't have, you do not have MS, and you have not had  a stroke, and you do have Parkinson. You do have white matter on the brain but it is not consistent with the above and I do not know what its from are why you are having these headaches.  Did not offer any other information other then if they come back like that I will do and MRI again.  My other Dr. said he was not surprised by the white matter he sees it with a lot of his patients that have EBV,  When they removed a lymph node many years ago because he was enlarged they kept sending it to different labs all over the US.  They first told me I had lymphoma, then they said AIDS not HIV, I just could not believe what they were telling me so  went  to see my other Dr. and he looked at me and said not to worry you do not have either of those,, they don't understand what they are looking at, if you give me a phone number to call them I can explain what they are seeing which was EBV.  It ended up he was right.  I just I could afford to move back to California to keep him as my primary care provider.  I have never met a Dr. like him since.  Now it's all about money and the insurance company has so much control and it will get much worse with Obama Care.  I am thankful I don't have to get Obama Care.  You have a good night talk to you soon.

[mkh9]

Sorry I just got your message late. Sounds like you had a great doctor. Maybe you can at least continue to use him as a consult. They seem to use magnesium for a lot of things. I'm using it for my back and migraines but since it works on enzyme activity it must work on boosting immunity.  Glad to be here to chat about it. I wish I could be more of a direct help. But I know gamma globulin boosts the immune system, and I'm not sure if acyclovir would work for EBV since it is used for Herpes and EBV is in the Herpes family but it may be specific to Herpes. Also, ribavirin may just be for RNA viruses not DNA viruses such as EBV. And, interferon is expensive too, has bad side effects but also boosts the immune system. I'm sure if anyone has tried this on EBV. Maybe you could ask you doctors about these. If you want me to look into any of these I will.
take care,
mkh9

[orbison]

Oh about he tonsils, I had them when I was younger but they were honestly eaten up by a viral infection most likely the Mono.  Its been great having someone to chat with about this.

[orbison]

No I have never had to anything done to my tonsils.  I never realized they were gone until I found this great Dr. to knew about Epstein Barr.  He helped me for many years, He gave me gamma globulin mixed with B12 short once a week for almost a year.  I was great for over ten years then I had to move away from that Dr.  I did call him the other day to discuss what was going on with me.  He said he is not able to treat patients with gamma globulin because of the price, when he treated me it was $12.00 a vial and not it is over $2,000.00.  He explained that Dr's are more restricted now and insurance will not pay for it.  He said I positively have EBV which caused Chronic Fatigue Syndrome from his person studies.  He explained out he got involved with viruses because of the patients having the same symptoms. It bothering him watching them suffer with all the different symptoms that can affect you.  He cared, He said it was sad to say that many Dr's don't care he has talked to many and they have no interest because it is complicated and they don't have the time and can't make any money off of it.  He explained a lot of things that have been happening to me since I left California many years ago.  He did say he is now trying a mix of B-12 with magnesium injection, not as successful as the gamma globulin, but does help some.  Seriously this Dr. was amazing, and he is just an M.D.  I wish I lived in California just to see him again.

[mkh9]

Have they ever cultured your tonsils? Also, how long have you had this particular bout of sore throats, night sweats etc.? This didn't happen to you in the past right? I still wonder if you got something else or something new. If you read about EBV all the textbook, publications etc. Centers for disease control, Mayo Clinic all say no you don't get mono symptoms when you recur. You do recur but don't get symptoms. But one site said rarely. I have read a lot about this. There seems to be mostly that they say it doesn't do this and that it is due to something else as I mentioned. But te data is mixed. I guess the best thing is that if the antiviral meds work then that will help decide the course of action. I'm just trying to help you understand what is going on. As to your feelings , I am so sorry you feel despair to the point that you sometimes wish you weren't here. It must be really bad. I am glad you aren't suicidal. Keep a check on those emotions because I have been there before and felt the same way when I was sick in my 20's and again more recently with my back pain and I couldn't get of out the house. It is obviously depression creeping in.  Try to write down positive affirmations about other things that are positive in your life even if it is minor things. Like if you have kids or are married  or something that is oositive  Like I was kissed or I saw a beautiful flower or saw a great TV show, I woke up in less pain. It is better to focus them away from the pain. Even buy yourself a small thing like a magazine you like or a flower. It will help over the next few weeks But if you need counseling get it. It is good to talk to someone about your feelings. You won't be contagious to someone by just talking to them. You could wear a mask if it makes you or them feel better. But you won't transmit it that way. Or just talk on here. I'll be glad to talk to you to on my message on my home site. I think I may have fibro too from my back injury. I am just getting so I can walk  miles after 3-4 years of chonic back pain. But I still have the pain and I won't go into it unless you want to. But basically My legs are always sore. I figure I have to live with it. Well, let me know how it goes.
mkh9

[orbison]

The Dr I have now is treating it with and antiviral medication but it takes several weeks before you will know if it is working I also have Fibro.  It sounds like they are real sure of  what causes what.  I asked about those shots I had them many years about once a week for a year and I never got sick with a cold, flu anything for about 10 yrs but she would not give them to me. I am so tired of feeling so sick with night sweats, chills, muscle aches, and my throat on fire all day long.  One Dr. told me my tonsils were eaten away by the virus I have big pockets where my tonsils were.  I do know I have a lot of severe sore throats they test them when they are inflamed but always come back neg for anything. Its weird I know.  the last few days I have honestly wished  I could go to sleep and not wake up  to these ailments.  Not to worry no suicidal thoughts just get over whelmed with this going on every day all day long.  I really need to find a good Dr. but I live in a very small town no specialist here of any kind.

[mkh9]

Yes some people and some doctors still think that EBV causes chronic fatigue syndrome but it is supposedly now known to be caused by HSV type 6. This is new. I know that you keep antibodies for life for EBV. So I'm not sure about the C that they designate. There is some mixed data on this. But whether is it is one or the other doesn't matter you have it.  But they say it is rare and/or little or no evidence (yet) that you can have recurrances of actual mono like symptoms because it is supposed to be shed and spread around without the person having symptoms. Anyway, that is what is known about it. Maybe you could get a shot of immunoglobulin and that would boost your immunity.
take care,
mkh9

[orbison]

Thank you for the reply I was for hepatitis , not sure about the other,  I do have Chronic fatigue syndrome. But I get these flare ups just like the Mono symptoms. It attaches my throat and lymph nodes. I have had a  lymph node removed and tested. I was told that my CFS was caused by my EBV. Also that I have CEBV C for Chronic.

[mkh9]

Sorry you are having these symptoms. Epstein barr actually doesn't come back as chronic mono. There is no evidence for reactivation in the form of chronic mono symptoms. Or, they say it is very rare because they can't prove it  You can be contagious at any time however. Apparently, Toxoplasmosis and hepatitis can mimic symptoms of chronic mono. So when you reactivate your Epstein Barr you shouldn't have any symptoms. Chronic fatigue syndrome is actually caused by Herpes virus 6. So you may want to get tested  for the toxoplasmosis, hepatitis and you can try to see if you come up positive for active mono but they say you can't rely on these results once you have had mono. But you will always be contagious for mono off and on. Since about 80-% of adults have EBV it is impossible to control giving it to others. You can give it to teenagers and young children though. But there are no recommended precautions. It Is transmitted by kissing, sharing food and drinks, using the same cups, eating utensils, or toothbrushes, having contact with toys that children have drooled on.
Hope this helps.
mkh9