Epstein Barr....Help!

[Scoot5980]

I am a 26 y.o. male who has recently been diagnosed with Epstein Barr. I have been doing a lot of research on-line about this condition but there is so much to read that it is very overwhealming and my doctor has just given the "basics". I currently have had swollen & tender lymph nodes in my neck and groin for 4 months, I get very odd headaches, I have a lot of sinus pressure, and I get very tired easliy. I have recently developed canker like sores under my tongue. My HIV status is negative. I have had my blood work drawn for the past 6 months and my white blood cell count has been elevated and all my other lab work is normal. My doctor recently has stated that I need to see a hemotoligist (sp) because of the white blood cell count and an ENT for my lymph nodes as they have stated that they are 99.9% sure it is nothing cancerous. I would like to know if the pain in my neck and now going up the back of my neck is normal? What are the other syptoms that common affect people with EBV? I guss I am just looking for some answers for people who actually live with this? Does it get better?

[workingtohard]

Quote [You are still pissed off because you don't have HIV. I'm am happy however that you are over on a different forum spreading your BS to someone that you might find to be an audience that will listen to your BS. But I'm sure these people will wise up quick.  } That may be one of the rudest coldest post I have read here. You should be ashamed of yourself for writing it. You are a bully attacking sick people regardless of there condition and I am amazed no one moderates people like you off these forums. And how do you know what peoples problems are? Are you a DR? You sound like a bitter little person I do hope you seek help for that.

[dichotomy73]

do you think the symptoms i described are consistent with EBV flare up?

[chrisneedshelp]

My EBV effects my children too and I have it so bad my quality of life is right up there with end stage AIDS patients (YES IT CAN GET THAT BAD)

[dichotomy73]

hello - i find this thread very helpful - and i would like to share my story and ask a few questions.  i had mono about 20 years ago (i'm now 34).  about 5 years ago, i was diagnosed with EBV (positive labwork), every now and then it flares up - fatigue, fever, swollen glands, excessive sweating, normally sore throat, sometimes diarrhea, aches, etc.  this normally happens under periods of stress and/or too much activity - excessive alcohol, not enough rest, etc.  

about 10 days ago, i had a sexual encounter with a guy (i'm a gay male) - he perfomed oral sex on me.  a few days later, i started feeling a flare up coming on - sore throat, swollen glands, stomach cramps, etc.  about 6 days in i started getting pins and needles in my feet, legs, arms, and hands.  it's now 10 days and i still ahve the pins and needles, the fatigue, and a tightness in my chest.  i was tested for all STD's, which came back negative.  i still have to take the HIV test (i took a rapid but since it's so soon, i need to take another).  anyway, the symptoms i'm having now are not like the symptoms i normally have.  i'm worried that what i'm experiencing now might be early HIV infection (possibly in conjuction with an EBV flare up).  i will get tested asap for this.  but my question is - when you guys have flare-ups, is it always the same symptoms?  or does it sometimes vary?  the pins and needles and the tight chest is new to me, but the others are "normal" to me.  i'm hoping this is only and EBV flare up.  any advice you can give me is appreciated.  thanks!

[PlateletGal]

CFS/CFIDS is a syndrome.... a group of symptoms indicative of some disease. There are so many syndromes out there... Conn's syndrome, Guillian Barre syndrome, Reye's syndrome & Hoffas syndrome... to name just a few.

The MP is setting out to cure people. I've read that Dr. Marshall saved his own life with the MP when he had sarcoidosis. From what I understand the bacteria in sarcoidosis patients is the same form of bacteria in CFS patients.

The website isn't the most user friendly website, but they do have an area where you can request for one of the moderators to send you a private message (on the board) to locate a physician in your area who knows about Th1 inflammatory diseases and can treat them. The MP is a research protocol... but the medications are common and not research medications. They use low-dose antibiotics along with Benicar to kill the mycoplasma that many CFS patients' have. To find out whether or not you would be a good candidate for the MP, you just need two blood tests.... vitamin D and a vitamin D 1,25 hydroxy. When you have bacteria (the bad stuff), you have vitamin D dysregulation.

Anyway, it is something that may interest you. Years ago, I wouldn't have dreamed of taking antibiotics... but I've read Dr. Garth Nicholson's research on CFS patients who have mycoplasma in their tissues and cells and IMO, this is the cause for the immune dysfunction. I take Probiotics, along with the antibiotics and I have herxing symptoms from the treatment, which tells me that this treatment is working for me. Already my tachycardia is better and I can tolerate gluten (wheat) products now.

[Soonerman]

The Marshall Protocol is about the most confusing website ever, what is the protocol and what medications are they using?  Also, CFS/CFIDS is very much unknown at this point; in fact they basically gave a name to symptoms that they can't find a cause for.  I don't believe CFS/CFIDS is the cause of my symptoms it was the name given to my symptoms; however if you can give me more information about this protocol it may be something to look into to CURE my symptoms.