harka

Jck,

Jojo brings up some good points, but the sentiment about doctors "not thinking outside of the box" is a dangerous one for patients to have. Patient advocacy is good, but as soon as you stop trusting your doctor, it doesn't matter what ANY doctor says, you will stop listening to him unless he is telling you what you want to hear. It sets up quite a slippery slope. There is some controversy with these so-called "subclinical EBV and mycoplasma" infections, but they have been borne out in studies over and over to not really exist; unfortunately, when doctors express this to some patients they're accused of "not listening" or "being close-minded".

Fibromyalgia is a very troubling syndrome, and has symptoms which are very real for the patient. Unfortunately, there haven't been many things found in studies to really help the symptoms. People have definitely examined in the past to see if there is a relationship between fibromyalgia and EBV, but here's the thing: while many fibromyalgia patients have high EBV titres like you do, JUST as many people WITHOUT fibromyalgia also have high titres. EBV (as well as other Herpes viruses like CMV, HHV-6, HSV-1 & 2) are very common viruses in the environment and MOST of us have been exposed to some or most of them by the time we turn 30.

It is ABSOLUTELY right that we constantly have bacteria/viruses bombarding our bodies trying to (and being successful in) entering, but that is why we have a very well evolved immune system to take care of it. If it is true that "subclinical EBV infection" is a real entity, then 80-85% of the N. American population would have fibromyalgia, or at least could be considered sick with the virus and should be treated--that is obviously not true.

One last thing: a very good point was made about Chlamydia pneumonia (now known as Chlamydophila pneumonia) and Mycoplasma in that they are not regular bacteria. They try to evade the immune system by actually living INSIDE the cells of our immune systems. These are referred as INTRACELLULAR pathogens. This includes organisms like: Borrelia burgdorferi (Lyme disease), Mycoplasma, Chlamydia etc. etc. Some people think that this makes them somehow special and also require long long courses of antibiotics to kill. Well two things:

#1. We have a very well-developed branch of the immune system which is specially designed to fight these infections--it is known as the cell-mediated immune system which involves T-cells and their corresponding antigen presenting cells.

#2. There are plenty more intracellular pathogens which live inside cells, that we know are curable by antibiotics, but no layperson ever thinks of them the same way as Lyme disease, well because, they don't have the training. A very good example is Mycobacterium tuberculosis (the bug that causes Tuberculosis). This bug lives inside cells and can do so for periods of 40-60 years! In fact 1/3 of the world's population is infected with this bug! Some people say you have to treat Mycoplasma for ONE YEAR because it lives inside cells and it divides every 5-8 minutes. Tuberculosis divides every few weeks (the slower it replicates, the harder it is to kill) and can do so for FORTY to SIXTY years. The average treatment length for the most common type of tubercular infection is 6 months. Another common intracellular pathogen is garden variety Salmonella!

#3. Okay I lied...three points! Many of the antibiotics used have the specific property of being able to kill intracellular pathogens. Quinolones, Macrolines, tetracyclines and Lincosamides are just a few of these. Most pathogens require but one dose of one of the above to be killed!

So you're definitely going to find information out there, and it's going to be difficult to distinguish the stuff which is biased (unless of course you have medical training! ) Just because a doctor tells you that there is no relation between EBV or Mycoplasma infection and fibro, doesn't mean he is close-minded--he is basing his medical facts based on medical evidence the same way people know that high cholesterol and high blood pressure can lead to strokes and heart attacks. The difference is, most laypeople know those things can lead to heart attacks because they're much more common and visible in the people around them, while the microbiology of things like EBV and Mycoplasma are largely foreign and anything anyone says can potentially bear influence.

Think about that if/when your doctor tells you s/he doesn't want to treat you with antibiotics or antivirals for long periods of time.