EBV: WE MUST learn more!

I have been an advocate for cebv awareness for about four years now. I moderate on an ebv forum (there are a few) and have learned much through experience, research and time.

I know some may think lyme opens the doors for the different virus', but really, who knows? It is like the age old question 'which came first the chicken or the egg?' For me, I am certain I contracted ebv before lyme. I had mono eleven months before I became ill and a month into that I was initially diagnosed with MS. It is a long and daunting road. No one journey will be like another's, but there is hope and lots of information to share. Even, if like with lyme, much of it is theory. However, unlike with lyme, there have been numerous studies on ebv, it's effects (long and short tem), trials and all sorts of findings, acknowledgments and advancements. Of course through my own personal journey I have developed my own theories, not just on ebv, but lyme too. (I don't believe in a multi abx approach, from what I have seen and experienced, most often other treatments are more beneficial (like what is offered at the Hansa center). My husband and I have spent well over $100,000.00 these past four/five years in search of a treatment to make me whole. I was completely bed bound for several months, I suffered for years with one thing or another - all debilitating in some form or another. Now I am most days functioning well.

You can not ignore one infection while trying to treat another and another truth to that is why you are treating one thing or another, something else (usually in the endocrine cascade) is going awry. But, "everything must be addressed." ( For this statement alone, I think Burrascano is worth his weight. )

I encourage everyone to be tested for ebv, fifth's disease, the various herpes strains, etc. Human Parvo/Fifth's Disease, although a typical childhood disease, is particularly horrid for adults. It is crippling, very mimicing of RA. I have survived it and can attest to being rid of it! Along with the ebv. It didn't happen over night, but it did happen and it can for many sufferers. Will I ever revert back? Who knows, maybe. For now I am living my life as best I can as I can (I give alot to God and trust him and that truly helps) and occassionally pop by some of the forums I used to visit to share. (some people appreciate it, some don't, but if any of what I say helps one person, than it is worth it)

+Lyme, to try and answer your questions, I just marked my five year anniversary Sunday (of becoming ill). It took me a year and a half from the intial onset for a hormone specialist in Jacksonville to find the longstanding ebv. My primary at the time, who would later move out of state, was great but clueless. He actually sent me to Mayo Clinic in hopes of finding some help, it was a complete waste of time, money and energy. I would go back there two more times through the years. When I looked back over thoseinitial labs two years later, I saw multitudes of issues they should have picked up on. And yet, ironically, at that time, their lyme test came back negative. I was in a terrible state while there, I just knew I was going to die and wanted to just to get me out of the misery I was in.

The hormone doctor in Jacksonville sent me to an Ear, Nose and Throat doctor he had heard of in Ormond Beach who is said to work miracles with EBV, fibro, etc. I treated with him for nine months on valtrex, I saw some improvement but wasn't there yet. By this time my endocrine system was going beserk, I developed hashi's and had started armour thyroid (with him also). My female hormones tested at the Mayo as if I was an "80 year old woman who had been through menopause 40 years before" I had just turned 39 and had mentrual cycles every two weeks. I was a hormone nightmare! Fed up I sought out another opinion from a  doctor I heard about in Tampa (Dr C) I was looking for another view on the treatment of ebv, I didn't have a clue about lyme at the time. After testing with him, the CDC called me to tell me I had positive confirmation on several bands and was "lyme positive" - That was quite an experience, the CDC and Dr C. I certainly don't want to stir the pot here, but the CDC rep I spoke with was wonderful and very helpful. Dr C,  I don't like and I'll leave it at that. I refused treatment or at least his and spent the next year and a half or so, maybe two years searching for a doctor that would work with me. I have been as far as the Poconos to see a 'specialist'. That was exactly two years ago. (He almost killed me - literally). Last year, in October, I saw a infectious disease doctor who is very lyme literate. I did what most would think is nothing; four months of doxy - that made me so sick, I refused to continue. I stopped the doxy. I currently have another hormone doctor in South Florida who I love and is super great to me. We do our appointments over the phone and he has helped me alot. (coincidentally his mother has had chronic lyme, but that is another story) My hormone doctor and I then did some baseline nutritional testing (I had gone gluten free by now) and was pretty much dairy and egg free too. Those labs were astounding in their deficiencies. He was shocked! I spent the next couple of months supplementing what I tested low in. In late July I ended up in the ER with what I thought was a gallbladder attack, but to this day noone knows what caused me such pain. (I think it was NAC which can be bothersome if not taken with 2x it's dosage in vit C- I thought I was dosing right,but.....it can just happen to where it  causes biliary issues) From then on I stopped everything! I only take my thyroid medication and black strap molasses at this time. The only conclusion I can come up with is that I treated everything, virus's, bacteria, hormones, nutritional deficiencies, etc. It all has to be treated.And we have to question when we do treat and it isn't working like it is supposed to. We must learn to trust our instincts. Treatments should not make us worse off than what we were! I understand how blurry our minds work and the heavy burden and overwhelmingness all of this illness can bring, but we need to learn to trust oursevles.

I saw literally dozens of different doctors in different specialties during those four/five years and we spent tons of money. I have been "guinea pigged" without care and I have had almost every test known to be and for the most part, only one or two were worthwhile.

Illness is a HUGE money making business. Even the best doctors are out for profit, it isn't just MD's, but ND's, chiro's, etc. The supplement industry has boomed in the past 5-10 years. Illness has increased and the cycle repeats. It is a sad, but true state of our society during these times. Why people don't ask themselves when they take one thing for something, why they end up on more to combat the side effects of the first thing. It just doesn't make sense to me and it shouldn't to all of us. But hey, thats just my opinion.