Epstein Barr....Help!

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 (symptoms) 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?

[Hityty]

I second everything Plateletgal just said! Just wanted to add that I was Dx'd with EBV & Mono 18 years ago, I had them both for 3 years. Extreme sleepiness & fatigue were the most prevalent symp's. I then developed FMS/CFS after that (Like Plateletgal said) and I also wish I got treatment from a Naturopath. But yes, you can recover from it, and probably will since medicine (especially alternative medicine) has come a long way! Try not to fight the fatigue, if you CAN rest or sleep when your body tells you too. Don't give up.

[PlateletGal]

According to the government link below, EBV is considered "chronic" in patients' who have been ill for 4 or more months. When the illness lasts more than 6 months, CFS and/or other possible syndromes or diseases should be considered. There are people with CFS who recover and others who don't. Some get better and others get worse.

I have CFS and had symptoms after I had mononucleosis years ago. If I could go back.. I would have visited a Naturopath physician immediately after having mono. Just a suggestion you may want to consider. The Naturopathic physicians always helped me through my illness and seem to know a lot more about EBV and CFS than other physicians. I do believe, the sooner you get treated... the better. I would consider adding a Naturopath physician to your list to help you recover from this illness.

http://www.cdc.gov/ncidod/diseases/ebv.htm

[PGB]

I was diagnosed with EBV in the spring of this yr.  I was then diagnosed with CFS.  My anxiety and depression has lead me to TMJ Syndrome.  I would try EVERYTHING possible.  As early as possible.  It stands to reason that the quicker you receive treatment, the more successful it will be.  Best of luck to you.  Hope you have a lot better luck in 2007!

[scarlet37]

EBV will run down your immune system. Keep up with your vitamins and get as much rest as you can. Your elevated white cells show your body is fighting an infection adn your doc was right, it's not always a cancer thing.  Everyones body reacts different so your symptoms may be different than someone else's. Don't fret just follow your dr.'s advice. EBV is a very common virus almost everyone you know has had it at least once in their lifetime even without knowing it. Get as much rest as possible, baby your self until you're better. It may take up to 3 mths before you feel 100%.Good Luck.

[Scoot5980]

Thank You To Everyone! I am very greatful that people have responded to my post. I have noticed that with the EBV that my axiety level has risen a lot and that I think that every pain or headache I get is something serious and not the EBV! I am seriously going to look into a Naturopathic Doctor because it seems like my regular PCP knows about it but wants to just treat it with another pill. I want to know what to look for, why syptoms (symptoms) to watch out for, more about the condition, etc., but it seems I just get the general answers! I have noticed that as it gets colder here in Michigan that my syptoms (symptoms) get worse. Is this common that with the weather changing that the EBV gets worse! What other things do I have to look for? I have read that there is Chest Wall Pain, General Pain In The Chest And Back, Severe Headaches.....are these common?

[PlateletGal]

Those symptoms sound familiar. I hope you are able to see a Naturopathic physician. They tend to spend more time with their patients' and have some natural medicines that can help clear the virus out of your system faster. I had wish I had seen them right after I had mono, but it is too late now. Also, if you have health insurance, they may cover the visit... you may want to find out. My insurance had a $300 deductible. What I did is when the Naturopath wanted labwork, I asked my regular physician to run the labs, so my insurance would cover it.

Be sure to google their names before you seen them and find out more about them before you make an appointment. I've learned to become more picky when it comes to choosing my physicians' now.

Keep in touch and good luck !

[BJL]

Hi Scott
I am a 35 year old female that was recently diagnosed with Epstein Barr. I mostly have the fatigue and pain chest (which is interesting you noted you have seen that as symptom as i have not come across anything mentioning it as symptom).  I just today decided to make appt for naturopathic doctor although not sure how quickly I can get to one.  Would love to compare notes as we are both recovering.  I was under the weather for 3 weeks without being diagnosed properly and was told to continue doing cardio etc which didnt help the cause. I then rested for a week and was feeling better (while visiting parents in Fla)-I then flew back to Colorado and moved from Telluride to Denver three days later and all the running around with traveling and moving has set me back.  I normally work out 5-7 days a week so I am anxious to get better!  But feel like my fatigue level has remained the same all week.  Keep me posted...although it sounds like the naturophatic remedies are probably specific to each individual...good luck!

[Safa1]

I just want to share my experience with Chronic Epstein Barr Virus (CEBV).  I have had Chronic Epstein Barr (CEB) for about 2.5 years now.  My main symptoms were mainly tender lymph nodes especially in the groin, light fever, muscle pain, odd burning sensations in my legs and arms, dry mouth, funny taste in my mouth, sleeplessness and fatigue.  At about the same time my brother was also diagnosed with CEB but suffered slightly different symptoms.  He lost about 10kg

[jenniegirl68]

I am 38 and have just been diagnosed with EBV.  I think I have had it for quite some time but did not get to the dr as I should have.  I have had severe pains in both arms and legs, swelling of joints, night sweats, numbness and tingling in both my hands and feet, swelling of my eyelids in the middle of the night and back spasms at all hours.  I have 3 young children and work full-time and I am exhuasted and scared because I cant keep up with all of it.  I have been referred to an infectious disease dr and I am praying he can give me some answers and will test me for every possible thing this could be triggered by.  I am finding it almost impossible to function and I am so discouraged.  I am just learing about the virus and realized that I had mono when I was 16 and that it has been dormant in my system ever since that time.  I have been under a tremendous amount of stress the last 3 years and I am pretty sure that was a trigger for all of this.  I will keep good thoughts for you and for all of you out there that are suffering with this thing! All my best-Jenniegirl68

[PlateletGal]

You may want to check out Med Help's FIBRO/CFS board. I think you will feel right at home there because it is active and filled with patients' who have FIBRO and/or CFS symptoms.

[ladybugmandy]

please see dr. martin lerner or dr. jose montoya or one of the CFS specialists before its too late. i waited 14 years after my mono to get help and it looks like it might be too late for me. i listened to the docs around me who told me it would go away or i was crazy.. and now i am VERY sick.

please get help now. if you get on the appropriate antiviral there is a great chance you can recover.

sue

[Soonerman]

I have been sick and fatigued with various symptoms for going on 4 years now.  Many tests and only things found were low b12, and positive EBV.  My doctor said the EBV was indicative of a past infection; of which I don't remember ever being really sick at any one point.  My doctor said that it would always be positive and didn't mean it was a current problem.  Is this true or should I consider the EBV a potential cause of the fatigue, tiredness...?  Also Safa1 I do have odd burning sensations in hands, legs, and even buttocks that tend to go along with red areas when I sit or have pressure on them.  The redness and burning disappear after awhile of removing pressure.  Is this sort of the burning you described above?  

[PlateletGal]

"Is this true or should I consider the EBV a potential cause of the fatigue, tiredness...?"

Can you list all of your symptoms ? Unrefreshing sleep...? Muscle aches ? Headaches ?

[Soonerman]

Fatigue, tiredness, unrefreshed after sleep.  Poor memory and concentration, brain fog.  Irritability.  I don't really feel like they are headaches, but forehead feels tense/tight at times.  Muscle weakness/aching especially after exercise.  I used to lift weights, but I don't like my muscles aching for days so I don't anymore, and less endurance during sports, running.  No fever or sickness, but some mornings I do regurgitate/throw up clear fluid, sometimes yellow, only when brushing my teeth (so may just be a gag reflex thing, I don't know).

[PlateletGal]

It certainly sounds like you could have CFIDS >> http://www.cdc.gov/cfs/cfssymptoms.htm

These are some of the symptoms listed on the CFIDS Association of America website... you may want to take their quiz, "Do I Have CFIDS" ?


Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity
Unrefreshing sleep
Substantial impairment of short-term memory or concentration
Muscle pain
Pain in the joints, without swelling or redness
Headaches of a new type, pattern or severity
Tender armpit and/or neck lymph nodes
Sore throat

So which labs have you had done so far ? It is important for your physicians to rule out any other conditions first before diagnosing you with CFIDS (or any other condition for that matter). I read your posts about Candida --- the Candida free diet is helpful to many people who have yeast problems (most of these patients have CFIDS, fibromyalgia and other health issues). The research protocol I'm on uses medications (not research) to kill the bacteria in my tissues and cells that is causing the immune dysfunction. It is called the Marshall Protcol and they have a website --- you might want to check out their success stories.

[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.

[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.

[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!

[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]

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

[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.

[SickbutEmpowered]

I have suffered with Chronic fatigue since I was about 13 along with joint pain and weakness. Now everything has gotten a lot worse. I was diagnosed with active EBV by a Immunologist where I used to live. I wish I still was there so I could get better care. I also was diagnosed with T cell fighting defect and CVID (common variable immune deficiency). There is another treatment which helps some patients just like patients with immune deficiencies that are primary. It is called IVIG. Honestly, it was the most effective treatment I ever had. I still didn't feel that well, but no more lymph swelling, no more chronic infections. I was on it for about a year and then since I had to move out of state due to falling and a back injury, the doctor said see how I do and if I started getting really sick again to get help where we were moving. Well for about a year, at least I didn't have very many infections. So, if you have insurance...and even if you don't there are programs out there to help a patient with this if antivirals are not for you. You should have a full immune workup in my opinion, not just the viral assays. I too saw Dr. Lerner years ago, but at the time I had not been exposed to the EBV virus and the found nothing except some heart issues but hey he is pretty well known from my understanding.Three years later I had EBV. When I first got sick I had an internist who didn't like me very much because I was on pain management for joint pain and he had a problem with it. So when I developed swollen glands and a problem with lump in my neck he refused to treat me and a lot of other things. I have said this before, with all the good and caring doctors out there, I seem to have bad luck lol. I also have found very nice ones too. Maybe it is just my inquiring mind they don't like. I am not stupid just because I don't feel well. Me, now I have not tried the antiviral route. Has this helped any of you greatly? I am going to see an infectious disease doctor here where I am to get on IVIG again, because I just got over pneumonia and am fighting a bad sinus problem. Not to mention a darn skin infection which came out of nowhere. Life is always so unpredictable. Take care and Peace

[zzzgirl]

I was diagnosed with Epstein Barr in January.  It has been so hard to find specific information although there are a million sites on it.  I fight fatigue, still need to sleep 90 percent of the day, glands stay a little swollen all the time but if I'm unable to get enough sleep they really swell and my throat and ears hurt along with headaches that get so bad it's hard to sleep even though I'm exhausted.  I worry because my symptoms are still so bad I can't hardly function.  We also can't find any information and can't get answers from the dr. about when it's safe for my husband and I to kiss.  At what point is it safe does anyone know.  I really appreciate this website and will look for a Naturopath physician.  Has anyone gone to one in the Dallas area?  Thanks for any help you can give.

[mamaluv430]

My 25 year old daughter was just diagnosed with active EBV after two bouts with pneumonia and nearly annual severe illness from tonsillistis.  It is almost always her throat and lungs which make her ill. Other than the acute illnesses, she is athletic, healthy, very, very fit.  The doctor says that monthly "globulin" shots will prevent the immune suppressed illnesses such as MS, Rheumatiod Arthritis, and Lupus.  Is this a real treatment?  Do you have experience with this?  He showed us a lot of research but there have been, over the last 20 years, many reports that EBV was NOT the cause of these things. It could be a miracle if these shots boosted her immune system and "did the trick".  I am very interested in learning from all of you.
Thank you.

[mrbeansmom]

Wow! I just posted about strange armpit pain and now I was reading this thread and am starting to think this is what I'm dealing with. I was told years ago that I had "very high titers" for EBV, but like another poster, I was told that if I ever had it in the past it would always show positive. I have been so very tired all of my life. I always chalked it up to having so many kids, and being a foster parent as well, but to be honest I seek those things because they keep me awake and I am so afraid of succumbing to the tiredness. It's a very unnatural tiredness. Now I have this tender armpit. Hhhhmmmmmm.............

[Padro46]

It would sure be nice to get some Doctors on this forum to help with the EBV problems perhaps even come over to the EBV forum.  Seems to be alot of differant answers in regards to EBV problems.

[PlateletGal]

Hi Mamaluv,

I'm happy that your daughter's physician is at least taking her condition seriously.

I can tell you that I have a good friend who recently married. His new wife, an R.N., was diagnosed with an immunodeficiency disorder years ago and as a result, she regularly gets gamma  globulin treatments. These treatments have been working for her and she's been able to lead a somewhat normal life. Well I found out recently that she had immunodeficiency problems right after she had mono and that her original diagnosis was and still is... Chronic Fatigue Syndrome due to EBV !

Here is more information on gamma globulin in chronic EBV (CFS) patients:

http://www.ahmf.org/database/ivigtreatment.html

[PlateletGal]

"many reports that EBV was NOT the cause of these things."

A nurse, who has CFS and who was on the same research protocol that I was on wrote this to me once:

"The virus was found loitering at the scene of the crime. That does not mean it perpetrated the crime, it may have only been an 'accessory after the fact."

[richardbri]

Here is your answer: If you have a high Epstein Barr titer, say for example 1:3000, ask the Dr to put you on Valcyte. Do an internet search for Dr Montoya at Stanford University. He has done studies on using Valcyte for high Epstein Barr virus which is one of the causes of CFS. The titer must be high since about 90% of people in the US will test postive for epstein barr virus anyway. If you have a low titer, say 1:160, it will not work. Good luck.......
Ricky

[PlateletGal]

Were you on one of the Valcyte trials ?

I'm debating between the treatment that I'm doing, which can take years, vs. the Valcyte trial... which I hear only takes about 3 months. But I have some concerns about Valcyte, as expressed on Dr. Podell's website. I'm also concerned about the effect that it could have on my immune system.

_______________________________________________________________

"Valcyte is a drug with potential toxicity."

"Potential side-effects of Valcyte/Ganciclovir include suppression of white blood cells, red blood cells and/or platelets. Low white blood cells increases risk for infection; low red blood cells causes anemia; low platelets increase risk for bleeding. If not monitored, detected and reversed, these complications can be fatal. Fortunately, side-effects can usually be reversed by stopping the Valcyte or by lowering its dose."

http://www.****.***

[PlateletGal]

P.S. ~ The treatment that I'm on (Dr. David Jernigan's protocol) kills viruses, bacteria, mycoplasmas, etc. It is not only successfully treating lyme disease patients, it is also treating chronically ill patients. And the best part is... no antibiotics ! I'm actually having herxing symptoms on his protocol, so that tells me that it is doing its job.

[Padro46]

Going back to my IM Doc next week any questions or addtional testing I should ask for,  Have had a ton of blood drawn this year,  she is not concerned by the EBV numbers even though they are high.

[Jenelle44]

I have had a terrible battle with mono/ Epstein Barr for almost 2 years now. I am a 28 year old female and find this disease to be quite debilitating. When I was first diagnosed with mono, I didn't know I had it. I wasn't feeling well at all, suffered from fatigue (extreme) nausea, sore throat( swollen glands) Headaches, dizziness, etc. I went back to my Dr.( primary care) a second time when he asked me if I ever had mono, I said no. So, he tested me and come to find out I had it. I had been going to work everyday, and though people with mono were bed ridden. So, he told me just to take vitamins, and get alot of rest. I started taking amino acids (Lysine) and found this to be effective. Vitamin c on a regular basis. At one point I pretty much that I had beat it. Now almost two years later I find myself  feeling odd again. I also gave it to someone else that I was seeing. After a year later I could not believe it was that contagious. I have been lazy with my vitamins and stopped taking my Amino acids. I am going to start the cycle up again and see what happens. I am aggravated and tired of being taxed and sick. My energy is at 0 alot, my mental alterness maybe at 2. The quality of life for me has changed drastically in the last two years. I am thinking of seeing a Infectious disease Dr. hoping there is some explanation for all this.