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Living with EBV

Jul 27, 2008 - 17 comments
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Pain

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treatment

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ebv

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I just joined this community.  I have always wanted to be in contact wtih others who understand the impact EBV has on life.  Most people do not understand it.  It is a lot better than 23 years ago when i was diagnosed after a TON of tests coming back negative.  I am interested in any information on treatments or NYC physicans who believe in a holistic approach and  who speciallize in treating EBV.  Here is what I have been through:
I was diagnosed 23 years ago. I was put through cardio tests because of chest pains and papatations, barium enemas, GI series, , IVP for kidney problems, dentists for sores inside my mouth, neurologists for my headaches, orthopedists for my joint pains etc.  My throat, neck, hips and groin area were constantly in pain. I was diagnosed with colitis even though my tests came back negative. (diagnosis based on symptoms)  I ultimately suffered with panic attacks.   This list goes on.  I was tested for mono, AIDS, LUPUS, and host of other disorders. I was put on antibiotics many times.  Everything was negative.  FINALLY after I did some research, I found something about epstein barr and asked my doctor to run the test.  He laughed at me and said "you don't have that."  Well I did have it but he said it was not active.  Many reports indicate that EBV does not cause symptoms if reactivated.   I have had several activations and symptoms come right back full force. I have also had kidney stones and cysts on my kidneys and i swear its from EBV too.  Fortunately the activations when caught early can be fairly well dealt with for me.  I take mega doses of Vitamin C (chewable Super acerola plus) super lysine plus, a food based liquid blend of essential vitamins (Natural Vitality is my favorite, it really has an amazing mix in it), Garlique, Procosa II with tumeric by usana, Fish oils (Biomega has lemon oil and is easy on the stomach) and I take Aloe Vera with water twice a day.  I elimate white flour, sugar, and processed foods as much as possible.  I stay away from alchohol and products wtih yeast.  I drink fresh veg juice as much as possible. (carrot, beet, kale, ginger, apple)  I also do a cleanse for 30 days.  I like cleanse smart,  its easy and reasonably priced.  I try to exercise every other day.  When my ebv is active, I do light exercise because heavy excercise makes it worse for me.  I try to get sunlight and stay positive and pray lots.  Stress is certainly present when I become active.   I surround myself with positive people stay thankful that I can be proactive and feel better with time and effort. I hope this wasn't too overwhelming.  i wish you and everyone on this board the best.

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Avatar universal
by PlateletGal, Jul 27, 2008
Hi thankful,

Has your physician ruled out CFS ?

A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:

cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
unrefreshing sleep
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
sore throat
Other Common Symptoms

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
brain fog
chest pain
shortness of breath
chronic cough
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
jaw pain
weight loss or gain

source: http://www.cdc.gov/cfs/cfssymptomsHCP.htm


Avatar universal
by thankful467, Jul 27, 2008
Hi Plateletgal,
It all sounds like me!  I have asked my doctors about this several times.  Unfortunately they just tell me its epstein barr and even though the tests come back active when I feel the symptoms they tell me that it should not be causing my symptoms.  I have not yet found a doctor that could effectively treat me.  Everytime I go to a new doctor they want to run the battery of useless tests.  I know what the problem is.
I do get better faster when I eat right, take my vitamins and aloe etc.  Right now I am in the beginning of a relapse and I woke up today with pain everywhere and a sore throat.  I am trying to stay positive. What treatments are available for CFS?  

Avatar universal
by PlateletGal, Jul 27, 2008

Hi thankful,

Here's a link to my website. I have posted various treatments, diagnostic tests to help physicians diagnose CFS and the latest research info on both CFS and fibro. Also posted is a link to find a physician in your area who knows how to both diagnose and treat CFS.

I wanted to warn you first that having a CFS diagnosis in your medical records will stay with you for life. I had one physician who knew what I had, but didn't give me a diagnosis. He asked if he could treat me, without a diagnosis, and if that would be acceptable ? It wasn't acceptable, but now I know why he said that to me.  I don't know your situation, but remember it is important to have continuous healthcare coverage once you are diagnosed with any health condition.

There is one test that I listed that apparently every CFS patient is failing... it is the Holter Heart test.

LINK: http://groups.msn.com/Neuro-ImmuneSupport


Keep in touch,

PlateletGal



571361 tn?1221007290
by sissylala, Jul 28, 2008
Hi PlateletGal,

Your information is quite wonderful and refreshing.  I have EBV titers in the thousands, I'm very sick with many other things; read my response to someone else on another issue;

Thanks for responding.  I've been having double over pain,  blood in urine, they found fluid in posterior pelvic area. also have nodules on left lung and three in abdomen, as well as i discovered one on the left side of neck and left side groin.  Severe weight loss, no appetite, severe flank pain, severe fatigue, gastro problems, my joints and bones hurt, and I lock up.  i have swelling in my left hand constantly and have had several palsys in my face, etc.  Tachycardia and short of breathe.  I have alot going on.  My labs are off the charts in some areas and negative in others.  I've developed osteopenia and my lymph % and neutro% are abnormal, as well as cortisol, ALT, Calcium, Vitamin D, Glucose, Mono%, MPV, Neut#, Eos#, Total Bilirubin, Postassium, High Occult blood in urine, high RBC in urine, HCT, Ketones in Urine high, Bilirubin in urine, hgb, rdw,albumin, EBV titers in the thousands, borderline positive (twice) ANA , Band Neutrophils high, Lymphocytes low, basophils high, creatinine blood high, carbon dioxide low, trace protein in urine multiple times. I'm a mess!  This left upper quadrant pain in bad.  My heart has been in the 160's and 170's.  I shake like I have parkinsons. I'M THE MYSTERY DIAGNOSIS.  I'm suffering so bad.  The Endrocrinologist says negative on his end, the Rheumotolist says nah on her end even though they have abnormal tests!  I've been misdiagnosed too many times and I literally feel like I'm dying and I LOOK IT!! I keep losing weight even though I've been eating, God someone help me.  The doctors are idiots were I live.  They say yeah you are very sick, but we need to figure out the source since as you read I have so many abnormalities going on.  Now I'm being told it may be autonomic, plus there is the pulmonologist that says I have COPD and the nodule on my left lung.  HE WANTS TO WAIT AND WATCH IT TO SEE IF IT GROWS, since there is very little growth since the last CT, but does say it could be cancer there are slow cancers, now with all this other stuff and lumps/nodules going on what is one to think or do.  Sorry, I feel all alone and I feel dread and doom.  I'm not crazy although I feel like it some days.  I sleep all the time, so tired and weak.  I am malnurished, but then one of the specialist says the tests don't show that BUT YET I LOOK LIKE SOMEONE WHO HAS AIDS, CANCER OR I HATE TO USE THIS ANALOGY, A CONCENTRATRION CAMP.  I just pray and I'm fighting the best I can; I am a strong women.  This is affecting my family, everything.  I'm not use to this forum and not sure what I'm doing, but I'm trying to get a doc to give me some insight.

Thanks again for responding, you were the only one so far.  I'm a prisoner in my home and the pain and suffering is unbearable.  I loose control of by bowels sometimes and I don't pee much.  If you know how I can ask a doctor on here, could you please try to explain how to do that.  Believe or not I'm pretty smart, although my memory is going a little.

Sincerely
Shannon

Now all the symptoms you talk about with CFS is a dead ringer for me as well.  My neurologist made a comment to me that EBV maybe the cause of how sick I am.  I see her on the 30th; she was frightened at my appearance and the test results and I had an MRI done.  I pray everyday for a proper diagnosis so my life can be again.  The theory is I have more than one issue going on, what do you think after reading the above?

Blessings,
Shannon

Avatar universal
by PlateletGal, Jul 30, 2008
Hi Shannon,

Was your cortisol level abnormally low or high ?

The only thing I can tell is that there is one test that apparently ALL CFS patients are failing. It is the Holter Test (heart) test. In a study, all 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves. source: http://www.chestjournal.org/cgi/content/abstract/104/5/1417  

More info on heart problems in CFS patients:


Lerner AM, Lawrie C, Dworkin HJ. Repetitively negative changing T-waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome (left ventricular dysfunction in a cohort). Chest. 1993; 104:1417-1421.
This first of our CFS publications outlines the essential cardiac involvement of CFS.  We showed that 24 CFS consecutive patients had abnormal cardiac electrical conduction by 24-hr. ECG testing (Holter monitoring) compared to 106 non-fatigued control patients (p<0.03).  In 8 of the 24 patients, gross abnormal cardiac wall motion at exercise MUGA testing was seen.  Coronary artery disease was excluded by myocardial perfusion imaging in all CFS patients.


2 Dworkin HJ, Lawrie C, Bohdiewicz P and Lerner AM Abnormal left ventricular myocardial dynamics in eleven patients with the chronic fatigue syndrome. Clinical Nuclear Medicine 1994;19:675-677.
Continuing the CFS cardiac focus, 11 CFS patients were studied using the cardiac nuclear medicine MUGA test which measures muscle strength of the heart.  Abnormal cardiac wall motion at rest and stress, dilation of the left ventricle and segmental wall motion abnormalities were observed.  The cardiac abnormal dynamics worsen as CFS continues.

link to entire document:


http://www.treatmentcenterforcfs.com/cfs_publications/index.html


Avatar universal
by PlateletGal, Jul 30, 2008

What is ME ? What is CFS ? Information for Clinicians and Lawyers :

http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm



571361 tn?1221007290
by sissylala, Aug 01, 2008
Hi,

Sounds like me to a tee amongst others; I'm so glad I found this site. I've been so lonely and isolated while dealing with this and I don't know what to do.  I now have hope thanks to all of you.

Avatar universal
by PlateletGal, Aug 01, 2008

Welcome aboard ! !  I felt the same way until I started my treatment and found thousands of people online on the treatment website who were just like me !!!

I sent you some great links. Please read everything when you can (I know it is harder for us).... and let me know what you think. Also be sure to PM me.... so I won't miss your posts on the journals.

I'm glad you found this place... I think you are in the right spot.



Avatar universal
by qtipp, Sep 27, 2008
Hi...new to this board.
I've been diagnosed by 1 doctor only recently that i have CFSID and suggested treating me w/natural remedies.  Blood work show nothing wrong, i had epstein barr once but no longer have it.  Regular blood tests show that my cholesterol, thyroid,kidney, liver, blood pressure etc...all normal.  I'm going on 4years of not knowing why I have chronic throat inflammation which leads to flu symptoms.  I start extremely cold(to tip of my nose), then within 15min. i run a fever which reduces to low grade for about 30-1hr. Then i have EXTREMELY sore eyes, puffy around the eyes (to the point where my co-workers n family are surprised at how i look sometimes), sometimes whole body fluid retention, headaches, bodyaches, extremely tired, stuffy nose, indigestion,dry skin, hair seems to fall out more than usual, cannot concentrate, blurr vision and few other symptoms.  The weirdest thing is that my symptoms change by the minute, hours etc...I can't tell if the next hour or day how my condition will be....or sometimes i have all the symptoms and sometimes just a few.  I recently went to see a ENT that said my tonsils are small n looks normal.  Allergy specialist I just went to see suggested running  a few more blood test for like Lupus etc... other tests that i haven't had yet.  Yesterday, I developed a new symptom that i didn't have before.  I felt really dizzy, my head felt really heavy and had to lie down. Trying to work 6 days straight hasn't been easy w/my condition....It makes even harder cuz i have hmo insurance and not ppo to run certain tests i have to get approvals ...etc...
It seems like everyone has a few diff. symptoms along w/the same.....when it comes to CFS / CFSID. Half the people i know thinks i'm just tired n overworked.  The other half don't believe me or give me pills like Lyrica and anti-depressents which i don't want to take.  I know a lot about natural remedies/herbs cuz i worked at a health food store a long time but i haven't found anything that helps w/ CFSID.  I know natural remedies work but i can't seem to get over this condition by taking it and i wonder if i have something else???...
Anyone heard of Marshall's Protocal? Heard of Dr. Joseph Sciabarrassi who i have seen 2x but not sure about him yet.
  I wish there was a doctor who knew more about my condition or cared enough to search for answers to help those who are suffering from undiagnosed conditions so that everyone on this board /or other boards, could get help/ relief and resume normal life style.  Even a healthy person has stress, but for those of us who are sick, its another challenge to deal w/the stress that come w/being sick....
I wish everyone luck in finding help, just as i pray everyday to find mine.
thanks for your time....
qtipp

Avatar universal
by thankful467, Sep 28, 2008
Hi Qtipp,
Plateletgal knows so much!!  Write to her!!  She is amazing. I am taking Jernigan's protocol and it seems to be helping. I know what you mean about the symptoms being so eratic.  It's so confusing and weird.  I have learned to live with it and have chosen the alternative methods.  I get massages a couple of times a month, I take Jernigans, llysine, olive leaf supplements, omega fish oils, garlic supplements, MSM, Vitamin C and probiotics.  I really watch my diet. NO white flour, limit dairy,  eat plenty of plain yogurt, fruits, vegetables, brown rice, chicken and fish.  I try to limit sugar and my foods are grilled or baked only.  I exercise even when I do not feel like it.  I too have a crazy work schedule, my family constantly tells me to slow down, but I cannot.
I find that my spiritality is necessary to function.  I hope you feel better.  Staying proactive and choosing your plan is important because it relieves the stress of having to keep looking for answers.  I will pray for you!
Thankfl

Avatar universal
by thankful467, Sep 28, 2008
Hi Plateletgal,
Hope all is well and things are getting better for you!  Are you still on Jernigans?  I am and I will continue the protocol.  I still struggle especially in this rainy NY sinus horror weather.    :)   I am going on yet another trip t Oklahoma next month sometime.  The trips are actually pretty good for me.  I am away from work stress and I have peace and quiet.


Avatar universal
by PlateletGal, Sep 29, 2008
Hi Thankful,

Great to hear from you ! I'm glad I caught this journal because many times it will be bumped and I will miss the journal posts.

I'm still on Jernigan's, but I'm on a break because I'm waiting for the Microbojen. I'm happy to hear that you are making progress. It can be a long road to recovery...  but IMO... better than taking drugs to treat my symptoms and not treat the actual disease itself.

_______________________________________________________________________________________________

Hi qtipp,

Welcome to the confusing-frustrating CFS diagnosis world ! Yes, I have heard of the Marshall Protocol and was doing that before I switched to Dr. Jernigan's protocol. I still continue to avoid vitamin D because in my opinion... vitamin D is a symptom of a disease and not the cause for illness ( at least not all illnesses ). Like other chronically ill people, I have vitamin D dysregulation due to intracellular bacteria. Although I'm on Jernigans.... I am still avoiding D. It is funny how my body does worse when I take vitamin D. I used to feel better on vitamin D.... I think Marshall sums it up real well on his website.

Here is the link to the fibro / CFS fourm. I am the Community Leader in the forum and we have a great team. Also consider reading the health pages. I recently added various treatments for CFS. I hope that you will post there or send me a PM. If you post in your journal, there is a good chance that I may miss your post.

LINK: http://www.medhelp.org/forums/show/44



Warmest Regards to both of you :

PlateletGal






,





,

Avatar universal
by MaryJanesWorld, Sep 11, 2011
I have been through so many doctors I cant even count. They all either think Im a hypochondriac or a drug seeker. Im 32, i have swollen lymph nodes on both sides of the front of my neck and in the cervical region. I have pain in the lymph nodes around my left breast axillary region and diaphragm. I do have EBV but have never had complications from it since the first and only time I had mono. I am tired all the time (i super dose on caffeine and im full blown adhd and medicated with adderall so the fatigue doesnt hit me as hard), i cant eat without being sick, i have tremors and twitches, not only visual disturbances but actual shadow and such out of the corners of my eyes. I get dizzy super easy, for the first time in my life Im having regular headaches, I have random pin point pains that spider web out and dissapear, itchy skin, numbness and tingling and swelling in all extremities. Im miserable!! I have 3 small children and I was always a fairly healthy person til recently. In June there was a night I couldnt make my body move!!! I sat on my bed and cried because my body wouldnt respond :(. I have slow response time and foggy head.......I fit every symptom of alot of things, but not everything fits me. My MPV has been on the decrease since at least 2007. I have a very stressful life so I thought it was stress, but this is too much!! The doctors around here suck and will not listen to me. They keep trying to treat my symptoms as separate entities. Even though almost all the symptoms came on at once. Right now we are experimenting with celiac. Im starving! The only thing that was maintaining me at a healthy weight was the bread products. (I cant stomach chicken and beef anymore and Im lactose intolerant) I dont know what to do. My mom died 2 years ago because of some mystery she refused to get checked out. I dont want to not wake up. My heart flutters constantly and noone will listen. Im starting to believe I am just crazy. Multiple Sclerosis is the only thing that fits all my symptoms but I cant even get the doctor to say that. I have a cyst on my left ovary that is all of sudden bothering me too. Noone wants to even look at it. HELP PLEASE!!!! My babies need me! Im all they have!

Avatar universal
by Brook31184, Jul 09, 2012
Hello everyone. I'm new to this board. But I'm extremely happy I stumbled on this. I have been sick the last three months.  It took me calling and calling my doctor complainging over and over before she finally ordered bloodwork. So I finanlly get the phone call with results saying I have EBV but it's no longer active and I shouldn't be feeling so bad and be in pain! And that was all I'm just stuck to research this and learn on my own. I just went back to my Dr and had to do a whole load of bloodwork.  I'm waiting for results now. No one knows how terrible I really feel  I feel like the people around me think I'm making most of this up. And some days I'm so down and over whelmed that I question my self I start to ask or u really going threw this do u really feel this much pain.  I have these symptoms headaches everyday, blurry vision, eyes burn, my heart beats irregular often, my body aches, lower back and hips are the worst parts, shortness of breath, extremely fatigue and tired everyday all day and night, some days are really bad that I can't keep my eyes open, I can't focus, trouble remembering things, dizzy and light headed, trouble standing up, my balance is off. A whole bunch of things aren't right with me. My doctor says I shouldnt be feeling this way because my counts are in the lower number. I don't know what to think or where to go with this anymore. Anyone has suggestions or opinions   Anything would be appreciated! Thanks Brook

Avatar universal
by hawkmama311, Jan 10, 2014
I am truly thankful that I stumbled onto this website! It was a year ago this month that IS knew something was wrong and that I was sick. I had some pretty weird symptoms, in my opinion. I first noticed a puffy, swollen feeling under my armpits, kind of like I had hand towels folded up under my arms all the time. Sounds funny, I know, but that's the best way to describe it. Was having some issues with my right hip, where it was painful and getting more and more difficult to walk. Then came the worst of the fatigue! I could barely walk up the stairs in our house without nearly passing out from exhaustion and shortness of breath. I was tired all the time, sleeping constantly and no amount of rest made me feel less tired. I was also working a fast-paced job, so that wasn't helping. I don't have medical insurance, can't afford it yet, but I broke down and went to the doctor. After months of tests and everything coming back negative, the results of the ebv IgG test came back as 224 with anything over 21 being abnormal. We tested for everything and I was seriously concerned about lymphoma, due to the swollen lymph nodes in neck, stomach, and pelvis. Thankfully, it wasn't that, as far as we know, but living with ebv hasn't been easy. It's been 6 months since dx, and I was feeling better after being on b vitamins and taking a d supplement, since that's all the doc said we could do. Now, however, it seems to be catching back up. Starting to feel tired a lot again. I have lost 40 lbs since I got sick and I wasn't overweight to begin with, 5'4", now 104 lbs. Starting to worry about my inability to gain weight... don't really know what to do at this point, but try to keep up with the yoga and eat whatever, whenever and try to rest as much as I can. Though I hate the thought of anyone else going through this, I am glad there are others who understand. I wish you all the best of health and look forward to hearing from you. Thank you!

Avatar universal
by Arasafina, Jun 16, 2014
I was diagnosed in August of 2011 after a ton of tests.....it makes you feel just crappy I have good and bad days....I am tired a lot I am 30 now.....I find after vigorous amounts of exercise and lack of sleep hits me hard....I crash for almost 24 hours then I'm "ok" anyone else have this issue???

Avatar universal
by cassiedi, Aug 16, 2014
Yes. I do! This is my second run with ebv flare up. I've battles cas since about age 22. I'm 48 now, but I power through the cfs. Refuse to give in to it. The ebv......Thank God this is only the second major episode in 25 years, but it is horrible. I had to stop bodybuilding and get tired pushing a shopping cart. I eat super healthy as do others on here. Treating candida seems to help alleviate ebv symptoms the most!

Cassie

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