Long Term Chronic EBV

[pvn]

Has anyone experienced long-term issue with elevated EBV numbers going up and down, but aways elevated numbers? Which, I think, is termed "chronic/active infection."

If so, how long did it last? Or, is lasting...

[PlateletGal]

Hi Debby,

A few of us fibro/CFS patients are sharing some of our stories about what it is like for us to have an invisible illness. Feel free to jump in if you like... that goes for everyone else as well:

http://www.medhelp.org/user_journals/show/17120

[debby1]

In the  U. K there is an accepted  difference between CFS and ME. Some interesting research came out of the university of Dundee which identified chemical markers in the brain in ME patients The two disorders should never be grouped together. They of course
have similarities but the origins are different and CFS is now recognised in its own right,so much so that the government has set up guidelines for looking after people with CFS. It is good news but some old dinosaur phsicians are SO stuck in the old days and have such big egos that they can't or WON'T read the research.
I am VERY interested in what you tell me because Tim first had his problems about three weeks after the pre school booster! They thought he had scarlet fever but the SF titre was negative so they tried to fob us off with some random diagnosis. It is sometimes difficult for me because I do appreciate that vaccination and clean water
have had a huge impact on public health but I do wonder if some individuals do not respond in the desired way to vaccine and society accepts that as sort of 'the acceptable risk'. I sometimes struggle because I myself administer vaccines.
The BCG is interesting and I know you don't do this over there. We now only administer it to 'high risk' individuals. I wish I had never let Tim have it but at the time
I was less informed and bought into the the fear of TB , living in London it seemed the right thing to do. I now realise that it was not only a pretty useless vaccine but quite a dangerous one especially for someone with an immune disorder. Have you ever had a
flu jab? I have never let Tim have it because it is live . I am in a quandry sometimes.
As a respiratory specialist nurse I manage many children with asthma and the 'Dutch
Barn' Study is interesting with its conclusions about endotoxins and the prevalence of asthma. We are just too clean in many ways these days with our antibacterial this and that! I sometimes wonder if healthcare professionals who are continually bombarded with bacteria and viruses and chemicals to mix and administer have a
higher risk of immune disorders in themselves or their children? I worked on a paediatric unit for many years with many others who stayed there years and it alarms me that so many of my colleagues have gone on to develop cancers, lymphomas, MS
Very weird!

[PlateletGal]

That is horrible what you & your son have endured. I've heard many horror stories like that from CFS patients. At least in the U.K., they are calling CFS.... "myalgic encephalomyelitis". Here were are struck with the label "Chronic Fatigue Syndrome". As someone had said on another website, it is like calling Parkinson's disease, "Shaky Hands Syndrome". There are politics involved with CFS as well.

I don't know too much about vaccines and CFS, but I do know that the physician who created the Marshall Protocol and other physicians have expressed concerns about vaccines and immune dysfunction. Since I've had CFS symptoms, I cannot tolerate vaccines very well at all. The allergy shots were making me so sick that I went against my allergist's advice and stopped altogether. Years later, another physician told me that I did the right thing (this was before I was diagnosed with CFS).

Here is an article on vaccinations by a physician who has my attention and respect. (check out his bio online...!)  If the computer asks you for your username and password, click on "CANCEL" and the article will appear:

http://www.immed.org/autoimmune/CrimPol_Vaccines_03.rtf

Everything he says makes sense and the studies done in New Zealand. Well no wonder why so many children here in the U.S. have allergies and asthma problems.

[PlateletGal]

I'm sorry to hear that you have this condition, but I am happy that you have a HEM/ONC physician who found something that was previously missed by your other physician.

I would consider addressing your concerns with your new physician. I know the immune system is so complex... but I have heard that we have thousands of lymph nodes in our bodies.

Do do you believe this lymphoproliferative disorder was caused by your EBV infection ? It sure sounds like it could have been.

Sending hugs your way,

PlateletGal

[pvn]

I met with an Atlanta Hemo yesterday.  
He said of all the tests I've had in the last two years, the one that jumped out at him was from 11/06 where a Chromosome Analysis was done of a lymphnode.

It read,"Chromosome complement in which 3 of the 20 GTW banded cells analyzed we hyperdiploid with gains of multiple chromosomes and rearrangements of chromosomes 6 and 19." "Seventeen normal cells were observed."
"Consistent with Lymphoproliferative disorder."

He wanted to know why none of my previous doctors picked up on that. I didn't know.

Anyway, he believes that indicates a lymphoma somewhere. He said it must be low grade or I'd be in a world of hurt now (two years later).  He wants to take several lymph nodes out and tests them.

He said if they do not show lymphoma, then he wants to do DNA testing as sometimes lymphomas hide in T3 cells.

I wonder if, hopefully, because he is an hemo/ocon, he is jumping to a logical conclusion in his field; and my other doctors ignored it because the Flow Cytometric analysis done at the same time showed noi abnormal lymphoid population. I'm hoping that or something like that.

I hate to have more lymph nodes taken out as I know it compromises the lymphatic system. And, mine is already slowed down and I have to massage it daily to keep it flowing steadily.

Any thoughts?

[debby1]

Thanks so much! I have spent so much time researching that I feel i do have a good understanding of what is going on and the knowledge you have is amazing...it makes me
feel stronger in my beliefs. I am tired of being treated like a fool by doctors and talked down to as if I couldn't possibly understand. A family doctor once told us that Tim lacked 'brain juice' and that some people who lack brain juice kill themselves and others kill other people! She obviously felt that Tim was not able to understand the word endorphin!
She refused to refer us to a CFS clinic even though he met all of the initial eight criteria.
She said he was overweight spotty and depressed  and needed  to run around the block a
few times. She did not seem to appreciate that we had already tried graded exercise and CBT. What can anyone do when they are met with such ignorance. There is a great charity over hear called The Tymes Trust who are doing some great work in supporting young people with ME or CFS.
Have you ever looked at some of the links between polio enterovirus and ME/CFS
and the creation of ' super viruses' like EBV when there is a void created in the virus world by the development of a vaccine. There were some interesting studies carried out on nurses. I'll have to brush up on it! One of my patients has CFS and is a professor. He has in the past  come uncomfortably close to uncovering some links between  some vaccines and syndromes such as CFS. It has suited the medical profession to  label him 'mad'. It is often easier to discredit than to face up to the facts and what could ensue if his theories were proven! Thank you for all the info!