Like everyone else, I have been dealing with EBV since Dec 07 or so they say. Have spent many $$$$$$ on MRI, Chest X-rays Blood Test etc. Have come to the end of my rope, Everything but the EBV panel is negative. Back of the head pain sometimes, Lightheaded just about every day, Light pains that move around sometimes stomach sometimes chest (have went to a heart doctor as well (acis reflux or so they say) Does anyone have ONE Type of doctor that might be the ONE to talk to about this?? From what I read there is NOTHING that can be done>
Personally, I would think an endocrinologist. My mom went through so many different problems and pains, and finally someone sent her to an endocrinologist who did some major blood tests on her that no other doctor seems to be trained to do, and found out that many drugs prescribed are useless if taken at the same time as other drugs or certain foods; also found out she is of mediterranian descent, which has it's own problems. I can't remember what disease he said she had, but no other doctor was able to find that out, simply because they aren't trained to check so deep into someone's blood and genetic history. I know I'm not explaining this correctly, but all I know is I wish we could all see an endocrinologist at least once in our lifetimes! Many of my mother's problems were due to this one mediterranian disease and also to certain types of foods that wouldn't allow her medications to work. Please ask if you can get a referral to a endocrinologist for some deep genetics checks and see where the endo doc sends you from there.
Another thought!!! The Raw food diet. Try that! It may work. Also, I have learned over the years that if you eat ONLY RIPE bananas, and purified water for about a week, 90% of your health issues can be gone. Try it! What can it hurt? And think how cheap of a fix that would be!
Thanks, Has your Infectious Dr. helped or just told you the samethings you already have found out? It has only been six months for me, I dont know how I would handle three years. Today my issues are the numbing around the head and face area. I am seeing a Heart Dr, tuesday to check my carotic art. he want to make sure I dont have apich or something. My primary Dr. has told me my head is a sinus issue and not related to the EBV. (Bologna) If all comes back well tuesday with carotic will ask that Dr. to refer me to a Infectious Dr. Hopefully he/she can help Thanks *
just thought I would throw my 2 cents in...I see a Neurologist who specialized in Immune issues, such as Lupus, MS, etc. He is the one who finally diagnosed me correctly after 2 years of hell. I owe him my life.
stilol have no clue I think it is cfs but no real dx yet for me I do have EBV and chronic candida all my symptoms are the same *** HIV but I have tested negative for 2 years (took about 13 or 14 HIV tests so HIV is unlikely)
Took your advise and ask my doctor to refer me to a Ifectious Diease Dr, After submitting ALL the test I have had run (heart, Chest Xray, Blood work,) He called my Dr. back and said there was nothing he could do for me,(SO no appointment) If it was EBV as indicated back in March than no other choice but to ride it out, BOY WHAT A DOWNER,
"If it was EBV as indicated back in March than no other choice but to ride it out," not true there are antivirals like (ACYCLOVIRE) that sometimes help with EBV also they can treat the symptoms and diet changes are supposed to help too then there are some homopathic remidies that allot of people swear by. FIND A DR WILLING TO GO OUT OF THERE WAY TO HELP YOU (they are rare but some people find them)
Thanks for your help, Live in a small town and the doctors are for the most part in tune with one another, would have to travel far to probable get the same results. Hope to get better soon, Go back and see my primary MD in 30 days hope for better news than maybe my EBV Panel will come down from 600 to whatever normal is.
I have heard some of the anti candida remidies are helpfull as is the anti candida diet (cave man diet meat and vegies onlt type) and there are several EBV remidies (no personal experiance sorry) I take ACYCLOVIRE but it does not do much for me SORRY I am not a lot of help because no one really seems to know much about EBV for example I have had a very experianced ID DR tell me I have chronic EBV but then a university hospitol immunology dept tell me no it is a past infection only I tend to believe the ID DR because if it was a past infection only then why would my EBV titers be going up not down
Find yourself a good naturopathic physician. If there is anything else going on, a ND will find it. Their medical training is quite different from regular MD's and they approach you from a holistic point of view. They disect the blood work reports and give you so much information from them. Your insurance may not cover a ND consultation, but the cost would be worth the information you get in return. Fill out the ND's medical history forms in advance of your visit and bring all your labwork reports to the visit.
Hi padro46, sorry this reply is so late, didn't know you posted to me..yes, it is EBV--reactivated..apparently it has been reactivating for 3 years. which is why I have it so bad. was told I had Fibro. Doc put me on anti virals to try, 2 different times. Didn't healp at all, actually made me feel sicker. he also gave me adderall (adderrall) for fatigue. I see pain management doc for pain meds, and just recently my neuro/immuno doc also put me on neurontin.
I really dont know what to do, I posted not long ago I finally got a referral to a infectious disease doctor, He looked at all my test results and would not even see me, advised there was nothing he could do for me just ride it out.(EBV) Talk about a kick while you are down. My main issue now appear to be chest pain, Stomach pain/nausea will be seeing a gastro. dr next week for that hope no colin/stomach issue there.
Would you mind sharing your EBV numbers? I am wondering about mine and I would asume others are also.
Here are my latest: "scale used is 0-99)
Early Antigen Ab,IgG 300 (climbing from 142 1.5 yrs ago)
Ab VCa IgG 3462 (up from 2761 1.5 yrs ago)(had gone down once)
Nuclear Ab IgG 2326 (up from 1114 1.5 yrs ago)(had gone down twice)
Some labs use 0-.9 as a scale.
Anyone have elevated Neutrophilis count on their blood test when their EBV numbers are high? Mine are up for the first time since this whole thing started.
Having reported all these terrible numbers, let me encourage others by saying that I can "create" a good day by pacing myself and focusing on remaining quiet and calm. I have also found that the more time I spend on the computer, on the phone, or watching TV makes my fatigue worse. Cool, calm and breathing deep.
There is no right physician or specialist for this illness. Many of us with "chronic EBV" actually have Chronic Fatigue Immune Dysfunction Syndrome. My physician, who is interested in CFS, is an Endocrinologist. However... not all physicians are willing to diagnose and especially treat this illness.
For those of you still looking for a physician can help you..... check out "Co-Cure's Good Doctor List".
F.Y.I. Primary called 2day after talking to the Nuero, She advised had a very good diccussion with him and the plan is a follows.
1. 50,000 IU Vit D for 2 weeks, After 2 weeks call if no improvement possible start on Predosone. They both think I am fighting may be developing C. F.S. due to EBV Nueropthy is from effects of the Virus.
I know I already mentioned a couple of treatment plans you might want to consider. Your physicians aren't going to probably keep you on the Prednisone for too long... so they will need options for you after that. Here are some of those options... recommended by the experts:
I recently heard a woman on our local news station discuss CFS. She was a heart physician and she was trying to think of other conditions that should be ruled out. In my opinion, she did a horrible job... she didn't even mention lyme disease, thyroid problems and/or autoimmune conditions. Anyway, what really made my blood boil is when she said, "there are no treatments for CFS". That is NOT true guys.... there are treatments and in fact, one woman who was on the treatment that I originally started out with has made a full recovery. Her boyfriend (whom she met on the treatment website).... also did the same.
Hang in there... read everything you can and most of all, do not give up !
I was reading through these posts and can related. I currently am seeing a gastro doc, a pulmonologist, a cardiologist, a rhuematologist, and others with basically no help. I was also told by infectious disease doctors that they won't see me. PlateletGal has posted a link on here to check for doctors in your area that treat CFS/Fibro. Look under the Health Pages link at the top of the forum. It is Co-Cure.....
Maybe that would help.
Also, I purchased the book "From Fatigued to Fantastic" and am reading through it and starting the protocol he recommends. It certainly cannot hurt and I am hoping that it will help. You might want to consider that.
I am finding that YOU have to be your best advocate because in general, most of the doctors that I have seen so far, discount CFS or just prescribe anti-depressants (and they can help); however, they stop there and I don't believe that is the correct way to treat CFS and/or Fibro/EBV. Good luck!
I can put in a positive recommendation for the Hansa Center and Dr. Jernigan if you can make it up to Wichita and afford it. Check out their website at least, www.hansacenter.com, and contact them for a new patient packet that gives details about their services. They like to call their patients the "humpty-dumpty" gang because all of the king's horses and all of the king's men (doctors) couldn't put humpty-dumpty (patient) back together again. They are the real deal in my opinion but you have to believe and have faith in what they are doing.
I know that you have tried some of the Jernigan formulas with mixed results, but the Hansa Center is a whole lot different in what they do and they have hundreds, if not thousands, of natural supplements and remedies that do not have the Jernigan name on it.
The virus stays with you. It does not go away. You are most likely suffering from Chronic fatigue syndrome. This is if you have experienced symptoms past 6 months.I am almost going to gurantee that this is the cause. I have had all the symptoms that you have mentioned and I have that.
Also, just some hints- the only true way to fight this battle along with the symptoms is to overload on vitamins as much as you can. I started a vegetable and fruit juice diet which I believe helps. I bought a juicer and cut up vegetables and fruits and drink it. It seems to help out. Try carrots and apples. There are many things you can do. Buy Amino acids (Lysine), they help greatly.
Hey Padro, I have had it for almost two years now. Yes, I am still working. It is tough, but I fight it out. The hardest part is the mornings. I used to be able to get out of bed and get moving. Now I take my time and alot of times make it to work late, I have an understanding boss. I suffer from Fatigue, muscle aches, restlessness( especially at night) , Headaches, Malise ( feeling ill at times), night sweats ( once and a while) tingling feelings legs and arms, Sensitivity to light, etc. These are just a few to mention lol. Anyway, I have visited a few doctors and they seem to shrug it off or give me a blood test and urine to see if anything is there. But, since my research I have found that there is really no specific Dr. to treat this disease. So, at this point I make the best on my own. The vitamins I take are B-12 with vitiman C, also Vitamin D is important. I remember I have taken AMINO acids (Lysine) at one point and they were extremely effective. I have to get those again. Try those for a while, I used to take like 3-4 a day. They can get expensive but they are worth it. What are you experiencing?
"Back of the head pain sometimes, Lightheaded just about every day, Light pains that move around sometimes stomach sometimes chest."
Unforutnately, EBV and even more so CFS are sometimes self diagonosed or even diagnosed by doctors as a, "If all else fails" syndrome. This is probably because over 95% of us will have had EBV at one point in our lives (Center of Disease Control). I mention that because this is a very common virus so it is easy for doctors to say this is the problem when in actuality it may not be it at all.
I bring this up because your symptoms don't completely match up with many EBV carriers. Does this mean you dont have EBV, not neccessarily, considering you had high EBV levels in your blood work. With that being said high EBV levels doesn't always mean you have EBV.
Try using a reliable source like The Center of Disease Control. This has some info on EBV: http://www.cdc.gov/ncidod/diseases/ebv.htm
I realize what I'm saying doesnt hold many answers, and certainly isn't letting you know what you have. However, especially medically sometimes it is better to have the right questions than pre-determined answers.
You might want to go about this in a more objective way. It seems that you believed you have had EBV for over a year now and unfortunetly it hasn't gotten you anywhere. Maybe focus on your symptoms and how they may/ may not match up with different diseases and syndroms (syndromes). You have done a TON of research and talked to many professionals which is impressive. Now, you might want to direct that in a different and less focused way.
Thanks so much for the responses--brett I have not really focused on EBV my many docs have because with all the testing I have had the ONLY thing to show up is high OLD EBV numbers--My primary will not even test for it anymore due to the old numbers do not come down and the blood does not show I have it now. The three Nueros say I have left over Nerve damage most probable caused by EBV--I have had no other answers thus the EBV Dx--Janell I have Monthly B-12 shots and take a Vit D supplement-All is better but not The SAME as B4
I am glad you have seen a Endo because my GP said my levels were normal at 3.24. I didn't give up and went to an Endo which said the new standard levels are near 1.0. So he put me on meds to try to regulate. I am not there yet but working on it. I to have EBV and my doc will not retest me. Just says there isn't anything they can do.
I have been battling this since 1957. Yeah you read that right... 1957. I was 10. Misdiagnosed by the Army doctors. Sent to a shrink that told my parents to discipline me more because I was lying. Several months of spankings and running away instead of resting my body was ruined by the time it (Mono) was detected by a civilian doctor. I've played hell to this day. I've been to every type of doctor, in several hospitals, taken every test imaginable so many times I've lost count, and pills out the gazoo. No one could find anything or do anything. When CFS was discovered by the medical society in the 80's, that fit my problem but no one knew what to do with it either. Even now, the CDC and the CFS organization are messing things up (long story) and dropped the neurological symptoms involved. This is now the ME part of CFS. There is another organization that calls it CFIDS/ME, and I go more with that. But no one seems to know what to do about it in my area. I still have constantly high EBV readings, much higher than you'd get if it's just showing that you've had it sometime in your life. Anyway ... after the hell I've experienced with being called a liar, that I was nuts, that there was nothing they could do, the bad side effects of the pills they did try, I have totally given up on doctors and have gone my own way with it.
Because I am super sensitivities to foods/drugs and chemicals I've done a lot of trial and error on things I use/eat and get around. When I was poisoned by sevin dust in 05 I was so toxic that I could barely tolerate eating any of my favorite junk foods and prepared foods. So I just quit eating everything except fruits, veggies, and boiled chicken. I don't drink anything except water too. As time passed I did find a few items I could tolerate that weren't pure, like white bread (whole wheat has too much gluten in it), a certain brand of flour tortilla's and noodles, and one brand of pumpkin pie. Not very exciting but I'll tell you this. My new diet took away a lot of the horrible muscle and bone pain I had, and that horrible flu feeling I had all the time. I also started walking which has helped, and now that I'm on ZERO caffeine I finally, FINALLY, am able to get to sleep most nights which I had a lot of trouble with. I also have less restless leg syndrome symptoms. I also take a multi vit, calcium with D, extra magnesium, C, and a banana everyday cuz the pills don't set right with me.
Be prepared to suffer, I'm sorry to say. But hopefully a little of what I did that helped me will help you if you try it. I think the crap they put in our food is slowly poisoning us, so I'd start there. It's a pain not eating the good tasting stuff, but I'll do without pizza, and burgers to feel a little better. I just wish I would have tried this a loooooooooooong time ago. Perhaps I would have had a better life.
My wife was recently diagnosed with EBV. She has expereinced low Hemoglobin (8.4-9.7) and has many of the symptoms described by others. She has an appt with a hemotologist in the next 3 weeks. Cannot get her hemoglobin levels above 9.7 and is not producing red blood cells. Not sure what that really means? She is concerned about bone marrow issues. Any ideas?
My son was daignosed with EBV last year. Prior to that he went to an infectious disease doctor who ran all types of tests to no avail. At one time they thought he had Lymphoma , all his lymph nodes were swollen and his spleen was enlarged. After surgery taking out a lymph node they determined is was badly infected but thankfully it was not lymphoma. He suffers from severe headaches and fatigue, does soemone have and answer we need help.
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