Scary Things About EBV..Do Not Read if You Do Not Want to Know

Discussion in 'Fibromyalgia Main Forum' started by futurehope, Mar 29, 2006.

  1. futurehope

    futurehope New Member

    Hi everyone,

    I wish I would just stop doing search engines on the computer, then I just start getting worried.

    I just found out that I had this (which is in the Chronic Stage) and googled this.

    EBV infection is linked with a number of tumors. Endemic Burkitt lymphoma, the most common tumor of childhood in Africa, is associated with EBV and malaria. Infection with Plasmodium falciparum malaria stimulates polyclonal B cell proliferation with EBV infection and impairs T lymphocyte response to EBV, apparently contributing to tumor pathogenesis. In Asia, EBV infection is related to development of nasopharyngeal carcinoma. Most non-Hodgkin lymphomas are associated with EBV, and evidence of the EBV genome is demonstrable in many of these tumors. EBV also is associated with Hodgkin lymphoma, where EBV genome is present in the Reed-Sternberg cell.
  2. findmind

    findmind New Member

    Yes, it is really scary to read these things about EBV, I have read them, too.

    That is why I make sure my dr. knows of anything that is "different" about my body, my health. He is very good about checking other things out, and he, too, knows with high EBV titer, something is going on chronically, and we must both be vigilant to cancer, especially.

    You know, the latest research has shown some important parts of the puzzle that is CFS, esp. (I don't know if FM was included in the NIH/Scotland study).

    So, don't get too scared, ok? Just keep a close watch on yourself, maybe write down things that seem "different" than your usual array of bizarre symptoms, and discuss them with your doctor.

    Keep up hope, and we'll all hang together and help each other thru the rougher times, ok?

    findmind
  3. futurehope

    futurehope New Member

    It is no wonder that we are all in this vicious cycle of stress and worrying that we can never pull away from.

    Did your Doctor put you on any treatments or give you any advice on what to do to put the Virus in latent mode?

    My Doctor just told me to rest, eat right and said that there was nothing to treat it.

    So depressing!

    Brenda
  4. bunnyfluff

    bunnyfluff Member

    Celiac's are 3 x more likey to get non-Hodgkins lymphoma, so guess who has swollen glands, EBV, and is a Celiac.....

    My face is all swollen up, my eyes are burning, I am SO fatigued I can't stand it. I think I'll just lay down and go to sleep now :(
  5. Cromwell

    Cromwell New Member

    But do remember that EBV is found in most humans, it is the most common virus discovered in ANA testing. So please don't get too worried, as if they tested all people over 18 I am assured that almost all of them will have EBV titers.

    Please also have a redraw and another lab retest, as EBV tiers can vary greatly from lab to lab.

    Hope this gives you a little more hope.


    LOve Anne C
  6. futurehope

    futurehope New Member

    I am so sorry about your condition. I really hope that things get better for you.

    Love and prayers,
    Brenda
  7. futurehope

    futurehope New Member

    Thanks for your response!!!!

    I know that the majority of people have had EBV.
    Do you think that the cancers apply to all of those people, or just the ones that have active or chronic EBV or everyone in general that have been exposed to it?

    Thanks Anne!!
  8. futurehope

    futurehope New Member

    I would be interested to know what I can do to put this into a dormant stage.

    Can you help???

    Thanks!!!

    Brenda
  9. Mikie

    Mikie Moderator

    We are more inclined to get lymphoma than healthy individuals. My doc thinks we know very little about the complications caused by Herpes-Family Viruses.

    Love, Mikie
  10. maja_sp

    maja_sp New Member

    ...to go and search for more help.

    Dear Brenda,
    I guess a LOT OF people here have gone through this: the doctor says, there is not a lot to do than resting, eating well and doing some exercise if possible. Well, guess what? There IS more you can do. And you are already on the right track: you are reading about EBV. So you get information - in my opinion it is better to know a lot instead of just making up opinions. It is important to keep the balance. Don't allow it to make you scary!!

    You even HAVE to get those informations to keep up with some doctor's ignorance about EBV. I already wasted A LOT OF time because instead of questioning more and being more into it about what doctors do with me or why they do it, I excepted it quietly with the result, that my condition did not change.

    If I talk with any doctor today I NEED my knowledge about EBV. Well, it is SOOOOOO obvious: most of the docs are NOT specialist in this field. Even docs for allergy or immunology are insecure.

    One example: two weeks ago they did some bloodwork to check the PCV (polymerase chain reaction). Guess what? Everything was fine. So my doctor was excited to tell me about it. But you know what? He did NOT mention, that a PCR is only a "shot of the moment" and can be different two days later. So? Do you think he told me? NO! Do you think, he told me this bloodwork has to be done more often? NO! How did I know? Through a German forum. People there experienced the same and only some doctors told them.

    So, my advice to you: get up and seaech for help. It can be a loooooong way! It costs time, money and nervs. But you know what? You do it for you! Don't wait to be "picked up" by your doc. He won't do it! It's your turn!

    Go and search for a doctor who AT LEAST is willing to believe you and help you. You know so well that rest won't get you better. We are talking about a Virus. And an Virus does of this kind does not heal by itself in our body, because it found its place to cause a disaster and WE somehow have to stop it or at least get it under control!!

    I wish you GOOD LUCK and the power to walk your way!!
    All the best,
    Maja
  11. code34me

    code34me New Member

    It is very interesting Herb for those looking for something to help with EBV and even cancers. I take it and like it!

    Codey
  12. Cromwell

    Cromwell New Member

    I just think that almost everyone who gets cancer will probably have EBV titers and almost everyone who does NOT have cancer will have EBV titers.

    It is the point I am getting at.

    Like everyone who drives a car is at risk for getting in an accident.

    But everyone who drives a car does not get in an accident.

    It is a risk factor.


    Love Anne C
  13. Mikie

    Mikie Moderator

    Herpes Family Viruses can go latent in the body for decades and then reactivate. Shingles is an excellent example. These viruses almost never completely go away. It is true that most of us would test pos. for EBV but the virus load levels can tell whether the infection is active.

    HHV-6 may be the most debilitating of these infections but then again, not much is known about what these viruses can do long term.

    If one absolutely cannot find a doc to help with chronic infection, one will have to develop her own treatment. There are transfer factors, herbals, and electronic zappers which can help eliminate infections. Some have had good results with Tagament or bromelain in lieu of Heparin to fight the hypercoagulation which often accompanies chronic infection. What we cannot do is depend on docs and we cannot just let these chronic infections thrive in our bodies.

    Probiotics, undenatured whey, and colostrum help to rebuild the immune system. These are all things we can do on our own. If one is lucky enough to have good docs like mine, it is easier to develop a treatment plan. Still, docs do not have the time to research. We need to do that ourselves.

    Love, Mikie
  14. futurehope

    futurehope New Member

    for your responses!!

    I am in the Chronic Stage (per the four tests that I just had ran) to test for EBV.

    IGM - Negative
    EBV Early Antigen (IGG) - Positive
    EBV VCA (IGG) - Range 0-19 / Mine is 170
    EBV Nuclear Antigen (IGG) - Range 0-19 / Mine is 200

    I was diagnosed as having it in the active stage in the middle 1990's.

    I want to get this back in the inactive stage.

    I have too many different medical problems right now. I have been in the Panic / Anxiety Mode all day.

    Thanks all!!!
  15. futurehope

    futurehope New Member

    I am always one of those people that go onto the internet and find out what I can about everything (especially my medical concerns).

    Every time I go to a Doc., I have questions for them. I have also found that they do not elaborate much and I usually force them to because DARN IT I WANT TO KNOW!!!

    They want to leave you hanging in the dark. So I question and re-question if I have to.

    I agree with someone who posted to me earlier (you sound a lot like me)!!!!

    Doctors do not like me because I think they think I am questioning their abilities because I know things and I will bring them up.

    Love and prayers,
    Brenda
  16. findmind

    findmind New Member

    Sorry I didn't get back to you...

    No, my dr. had no idea what to do about the EBV titer being in the thousands! See, that is a reactivated, not 1st case, of mono, I think.

    Some of the others responding have excellent suggestions! Do try to get your immune system working to control it, as I have...mostly by good food, supplements and rest. I didn't have the money to do much, but little things can help a lot.

    Maybe keep a journal of things you try and every 2 mos or so, evaluate each one you start, ask yourself if you feel any better.

    I hope you find things that work for you....

    All my best,
    findmind
  17. Paracelsus

    Paracelsus New Member

    Those of us who fight EBV should keep it in perspective. It is a virus--and when the body is in good enough health it knows how to keep nasties like viruses in check.

    Our body contains a natural intelligence and wisdom on how to keep itself healthy. It only needs the right materials and conditions to do so.

    The reason why EBV thrives in some individuals and not the rest of the population is probably due to many factors:

    genetics
    immune stress or dysfunction
    other underlying infections
    diet

    To use an analogy, just as a seed will not germinate and thrive unless conditions are just right (soil, moisture, temperature, etc.), so too infectious agents won't find a foothold in the human body and thrive unless the "soil" is right-- that is, a run-down, depleted, or otherwise non-resistant host body.

    This idea gives us hope. If we can remove the conditions that made the virus find a suitable home in our bodies, then the unwanted guest will not thrive, and ideally will be banished.

    This site has had much discussion on EBV. A search will turn up many posts with helpful info.

    May good health find you and keep you.
  18. Cromwell

    Cromwell New Member

    THAT WAS EXCELLENT POST THE LAST ONE. Absolutely.


    Love Anne C
  19. futurehope

    futurehope New Member

    I will by trying to concentrate on applying these suggestions and getting down to the root of things.

    First of all, I absolutely have to eliminate my stress level, I know that for a fact. I am just so unsure about how to do that.

    I have Panic/Anxiety Disorder and am on Meds for it. They are helping, but I still obsessively worry.

    I have a lot of medical conditions are are going on right now that have nothing to do with CFS.

    Still going to see the Oncologist (had a Bone Marrow Biopsy and Pet Scan), WBC's like to rise with me, also seeing Gastro, and Infectious Disease Specialist, also seeing the Dentist because my Pet Scan showed increased uptake around the dental area.

    I am trying to eat more too, as I only weigh about 86 pounds and 5' 3 1/2" inches.

    I am tangled up in a weave of horror.

    And to top it off, I am quitting smoking, my last cigarette was this past Monday. I am wearing the patch.

    The last time I seen my regular MD, about 2 1/2 weeks ago, he got upset with me as his voice changed and got a little louder and spoke really fast. Like he was tired of me.

    I know, I am rambling here, sorry about that.

    Please forgive me,

    Love and prayers,
    Brenda
  20. rockyjs

    rockyjs Member

    I think that the cancer risk is for the 5% or so of the population that has recurring EBV infections. There seems to be a strong genetic component and since EBV is harbored in the throat and nasal passages during the latent phase, that's probably the reason for the cancer risk in those areas.

    Genetics are a funny thing...people like me who got severe neuroinvasive West Nile virus have a genetic factor that made us more susceptible. On the other hand that same gene defect or aberration also causes us to be practically impervious to HIV infection.

    Jan