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Epstein Barr Virus (EBV) Community
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see what you guys think Ok its like this about 3 years ago i got real sick (could not get out of bed sick) I even had to sell my business. I had sever fatigue,low testosterone, low b-12,psoriasis, peeling hands,loss of control of left leg,  oral thrush, new moles and freckles, lost about 10 lbs, night sweats,fungal rash, periodontal cavities, white sores on side of tung,sores in mouth,and on top of head, went to doctors they suggested i get an hiv test so i did results where neg. after about a month to month and a half i felt somewhat better but still had oral thrush that would not respond to treatment (even I.V. treatment) I also had a lymphocyte transformation to antigens test which said my white blood cells are no longer able to fight candida (a condition usually seen in HIV patient according to my DR) and early on my eosiniphicals (spelling?) where twice what they should be along with my constantly elevated WBC (11.5) also my Blood calcium was high
when i received my labs i had a high white cell count that was about it. i have had every test known to man borderline diabetic and have continued high white count
over the last 3 years i have had about 9 antibody test 2 viral load test ( one at about 7 months and one about 15 months) and a (NAT)at about a year  also just had another negative elisa at 22 months test  all of which are neg. I still have the oral thrush and have been gaining weight over the last year (which i know is not a sign of hiv) but none of the doctors seem to have a clue I have tested for CMV, HTLV 1 and 2 hep,Lyme,autoimmune, hiv, ebstienbar(witch one doctor said i had but another said no way )but my EBV titers have doubled since then also, and lupus. my cd4s where 1560 at 6 months and 1530 at about a year.and 1230 at about 21 months
i am wondering if any of these symptoms could be CEBV
oh i have reoccurring middle ear infections to yea. My children and wife a affected to wife got hpv so bad in 1 years time required surgery to remove (bad surgery cut her up BAD) and my 2 year old is slow to develop small for age has reoccurring ear infections sick allot and has new strange rash on butt(not typical diaper rash), and 8 month old is same 2 year old got hiv tests at 7 months and 1 year (antibody only) wife got a couple hiv tests too
I Still have not found the real cause of my illness, but am somewhat sure it is CFIDS (Good luck getting a DR to back up something most of them do not believe in though)
5 Responses
Avatar universal

Hey Chris.... as you know, my EBV titers are off the charts. The CDC says that if you've had symptoms of EBV for over 6 months, then it is time to talk to your physician about CFIDS. Did you know that Cher and many other famous people have CFIDS ? I remember Cher said what caused her symptoms was the Epstein Barr Virus.
Avatar universal
I just wish I could get a straight answer. Is this all because of EBV or not? 2 infectious disease DR's say yes and 1 immunologist and another infectious disease DR says no. Can EBV cause my lymphocyte transformation to antigens (candida in particular) to malfunction or not (if so extremely rare)? Why the wife and kids having symptoms if CFIDS can not be contagious?Same for EBV why would they also be so effected since most will not be effected to that degree? I feel like every road I go down ends back at the beginning of where I started. It is very frustrating to deal with this for three years and still not have a real answer!!!  
Avatar universal
"Why the wife and kids having symptoms if CFIDS can not be contagious?"

Hey Chris... do you remember that link I sent you on L-form bacteria and how it is transmitted ?

If you have Medicare, you can get tested for CFIDS through Red Labs USA.... they have a website if you would like more information. Also have you checked my website and looked under "diagnostic tests" ?
Avatar universal
EBV can be tricky. There are 4 panels to run when doing blood work.  I had candida and EBV at the same time. I am 6 months in still fighting EBV as i was exposed to mono back in July. And yes I have had mono before...junior high. My candida is under control...2 6 week rounds of Nystatin oral. The EBV messes with my Thyroid so I go hypo (weight gain fatigue etc) when active. Bloodwork to support.  I suspect I have had the ebv popping up over the las5 5 years. I was exposed directly to active mono back in July. Not many Doctors are well trained in EBV. There is no cure. 92% of the population carry the virus in a dormant state. I see a very smart Oesteopath that is familiar with the virus and since there is no cure...we are boosting my immune system. I believe this can be suppressed back to a dormant state and I can live normal again. My life has been borderline hellish for a while now. but without hope I have nothing. I messed up in the beginning by trying to continue my lifestyle of heavy weightlifting etc. Made it worse.
7 Comments
Hi, I’m having. A really hard time battling a virus at the moment waiting to see an ID specialist. I am also struggling a lot with Candida issues. I’ve had several HIV tests out to 15 weeks all negative. I’m really struggling to keep a positive outlook on things. Have you any tips? As awful as EBV is I’m hoping it’s the culprit of my ailments. Much more welcomed than HIV.
Hi. The struggle is real. I have been fighting for 7 months and if I really look back...prolly 5 years. For the candida I took 2 6 week rounds of Nystatin oral. 2 pills 3 times a day and I believe it's under control. My symptoms were yeast infections on my penis. Don't use an antibiotic soap as it kills the good bacteria as well. In fact 2/3 of my showers are soap free now.  Quit eating sugars and bread....i know it's hard but if like me I was desperate. In July I contracted mono for the second time in my life and as you an avid weight lifter. i would feel good for a couple days....train hard and the next 3 days be worse than ever. I had to stop completely. A lot of overcoming EBV is time and supplements to boost the immune system. And sleep...which I struggle with. I do take massive amounts of vit c daily in powder form along with Also B D and the rest of the good vitamins. I don't see a regular primary but a good oesteopath educated in EBV. Seriously doubt you have HIV if you keep testing negative. Within the 7 months I have been fighting EBV there were days I was so fatigued I almost called 911. Thought I was on my way out. It's been hellish. i office from home so that really has been a godsend. Otherwise I would be out on sick leave. i think I am at the tail end of the EBV. I honestly believe if you can keep your immune system in check you can suppress the virus back into a dormant state. 92 percent of the population carry the virus in a dormant state. It's our weakened immune system that leaves us vulnerable. Stress is EBV and candida enemy as well. i'm naturally high strung and stresful. Part of me thrives on stress. Love hate relationship. You can overcome this....don't give up and do everything to boost your immune system. is the key to all of this IMHO.
Thank you for replying so quickly. It really is very comforting to know I’m not suffering alone. The Candida issue really got to me as it is the first tell tale sign of HIV if you google it on the net - big mistake! I have suffered from both forms orally (which is rare for a otherwise healthy fit 24yr old) and vaginally. I have started taking many supplements including high dose vitamin c, COD liver oil and B complex. Blood tests revealed I am deficient in vitamin D so I also take daily dose of that too. I can totally relate with the energy or lack of issues. Some days I feel almost back to normal with little to no pain, other days I need complete bed rest. I’m hoping I get some answers from my ID doc soon. But from what I’ve read EBV is a life long battle.
The Nystatin oral is what pretty muched knocked out the Candida for me. No side effects. I truly believe this does not have to be a life long battle. It's rare to have chronic active EBV...but possible. I believe our lifestyle attitude and what we put in our bodies will determine our future with is.
I’ve had a 1 week course of nystatin plus 2 fluconazole pills which seems to have helped. However I still get a thick coating towards the back of my tongue each day, and I’ve noticed my tongue appears somewhat patchy is places? Is this something you have experienced also? I’ve always been cautious about how I treat my body, eat a well balanced diet exercise regularly etc so I’m shocked to be experiencing such physical hell. I don’t think there is one part of my body which hasn’t been affected. My digestive system is completely shot despite eating plenty of fibre. I have severe constipation. I feel I’m at a total loss. Doctors are not helpful in the slightest so I’m praying for a miracle when I see my ID specialist
The Nystatin is meant for long term use...not a week. You can chew the pills for the oral part and the rest gets in your system and slowly fights/removes the yeast. heal the gut. Take a good probiotic several times a day. Ebv and candida can wreak havoc on your thyroid. get a thyroid panel done. if your TSH is above 1.5 or 2. get on a good NDT like armour or Naturethroid. I am hypo right now. I am constipated as well without thyroid meds. I have to take 1 grain of armour daily to keep my metabolism functioning properly and my bowle movements regular. This suppresses my TSH down to just above low normal...maybe .5 and this is my "sweet spot' for the meds. This is a very complicated situation that affects so much of your body.  
Get a 6 week course of Nystatin...2 500,000 unit pills 3 times a day. This is a slow action antifungal meant for extended treatment.  Please understand and believe if properly attacking this situation ...EBV Candida...you can overcome and get back to normal...not overnight but in time.
Avatar universal
How do you test for Candida ?  I believe I have Candida but it's hard to get any doctor to even test for it.  Can someone please let me know?  Thank you.
1 Comments
They can test for systemic candida https://www.cdc.gov/fungal/diseases/candidiasis/invasive/diagnosis.html  They can do a blood test of infected area.  Some doctors will just treat with oral tabs that work throughout the whole body if suspected.  
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