Herpes related viruses may progress to lymphoma

Discussion in 'Fibromyalgia Main Forum' started by netransplant, Aug 25, 2008.

  1. netransplant

    netransplant New Member

    I am not a doctor but I want to relay information that I found fascinating. I have been suffering from chronic EBV since 4/90 but managing my symptoms and living the best life I can inspite of the fatigue, etc. However, in July after pressing for more blood work, my EBV VCA Capsid IgG levels which were around >1:640 in 4/90 are now at >1:10240. Two infectious disease doctors have never seen this alarming rate. They are trying to figure out the reason for the jump when the virus was inactive in 2004. I am writing to tell people to urge their doctors to do annual EBV or other herpes virus related tests. Now, I have hsv-1 and herpes 6 too. From what I have researched, these viruses can progress. This is the sad truth. I do not want to make everyone scared or worried. If I knew, there was a chance the ebv could progress, I would have done things differently over the last 18 years. I know stress can activate the viruses, I would not have taken certain positions. So if you are newly diagnosed, have your doctors monitor you annually if you have symptoms. I have had swollen lymph glands for almost a year and now I am getting the additional tests to rule out lymphoma. The veterans of this insidious disease probably know this but I really want to educate the newly afflicted. Keep in mind, lymphoma can strike anyone, not just people with elevated ebv titers. I have told my family that if I have something serious, it may be a little bit easier than dealing with the lost dreams and experiences from the last 18 years. Don't get me wrong, I feel blessed at the same time I feel cursed. I just want to spare someone from potential heartache in the future. One infectious disease specialist said, there is no magic bullet for us but we need to have great nutrition and supplements. She mentioned NADH as one supplement. Hope you didn't mind the long post.
  2. ladybugmandy

    ladybugmandy Member

    i've had ebv issues since mono over 15 yrs ago. my whole life was ruined.

    i am now very very slowly getting my life back with valtrex and valcyte under the awesome care of dr. a. martin lerner of michigan.

    why don't you take antivirals? many people on this board are.

    it isn't true that there is no "magic bullet". your doctors don't know about it because it is still considered experimental.

  3. Lichu3

    Lichu3 New Member

    1. The increase in antibodies may not necessairily indicate progression but a natural fluctuation. There have been people whose titers have fluctuate between 1:640 - >1:10240 over time, back and forth.

    Both EBV and HHV-6 can hang out in the brain, coming out occasionally into the blood, and causing the shift in the antibody levels (where your immune system is able to act).

    2. There are certain lymphomas highly linked to EBV. Oftentimes, people with these types of lymphomas have high EBV serum PCR levels. Your docs might consider checking if lymphoma is a concern.

    I agree with Sue's comments above.
  4. spacee

    spacee Member

    I am so sorry for situation. I do certainly hope that it doesn't progress. A friend of mine got CFS at the same time I did in 1986. Though we had both moved 8 years before and lived in different states and lost contact. Anyway, she did develope lymphoma early on, went throught the chemo and bone transplant and has been cancer free for about 15 years.

    And yes, it can strike anyone a women in our town has been battling it for years...still living but a lot of chemo treatments over the years.

    I take NADH and would not be without it. It helps mental clarity and and extra bonus it had mannitol in it which stopped my urinary tract infections that were getting uncontrollable.

    Bless your heart...Hugs to you.

  5. netransplant

    netransplant New Member

    Thank you for your supportive and informative replies. We are fortunate to have this resource available to us. One reply asked whether I was ever put on an antiviral and to be honest, not one doctor in the 18 years suggested it as a form of treatment. However, when I had my blood work done in July, the HSV-1 and EBV titers were high so he put me on Valtrex which I took for 18 days. I developed the strangest case of lesions and I had a biopsy done on one of the lesions. The results will come in on Thursday. In the meantime, I started l-lysine in addition to my other supplements. It will be interesting to see what transpires when I get my blood done in Sept. To complicate matters, I have a pituitary tumor and the medication is tough on my body because of the side effects. How I can still laugh in the face of feeling so horrible is sometimes beyond me. To be honest, if I did not have my faith, I don't know where I would be. I will post more when I get my test results. Thanks again for reading and replying.
  6. ladybugmandy

    ladybugmandy Member

    hello. you have other issues so maybe i dont know what i'm talking about, but you would need antivirals for years - not 18 days - to see improvement, if indeed a herpes virus is your problem.

    i have suffered with CFS for 15 yrs and am finally receiving treatment.

  7. SpecialK82

    SpecialK82 New Member

    Just to add my two cents -

    I agree with the other replies above. About the lesions, I have heard from others on this board that they have sometimes had blisters come out when starting on antivirals. There is no concensus as to what that means, but one theory is that the antivirals are working and may be causing the virus to "express" this way. I would say that at least it's a sign that something is happening.

    Please let us know what the biopsy results show, but it may very well be a good thing. The problem for us is finding a doctor that is very knowledgable in this area that can interpret these results correctly.

    To read more about how these viruses work, a good website is cfsviraltreatment.com. This is Dr. Lerner's website (the same doctor Sue mentioned above) and he has many years of research in this area.

    Also, search on this board in the Search box, top left, for EBV and you will find alot of information.

    Thanks for the info in your post, I am definitely concerned about lymphoma. I also have tested at 1:10240 a year ago, and am just starting antiviral treatment with Dr. Lerner.

    Good luck and let us know what you find out!


  8. netransplant

    netransplant New Member

    I appreciate the feedback.

    Where do I begin? I just received the news my HSV-1 level is increasing each month. I restarted the Valtrex yesterday based on the news about the HSV-1 level. By 7 p.m., I had over 100 red spots throughout my body. I guess I may be allergic to the Valtrex. I was comforted when you wrote that others have complained about the blisters. The skin biopsy taken four days after I stopped the Valtrex showed pityriasis rosea or pityriasis rosea-like drug eruption. In addition to having EBV, HSV-1, now I have mycoplasma pneumoniae and the doctor does not know how long I have had this. In addition, I have a virus in my eyes and a urinary tract infection. I am on two antibiotics and the Valtrex. Needless to say, I feel like I am dying. My body is so immune compromised that I am getting any little infection. I am having a full mycoplasa and fungal panel because I have been reviewing over 500 boxes of documents maintained in an offsite storage facility for 2-20 years. Did I mention, I was in a closed file room for six solid months doing this review? I swear, my nodes started swelling after a four months of being in this room. Has anyone ever had simultaneous infections? I have never been so scared about my health. Having endured a melanoma and a non-malignant brain tumor cannot compare to the battle I am facing now with my body. Thanks for the tip about Dr. Lerner's website. I am going there now.