I have posted here the last day or so on another thread, but thought I would post a new thread to get some more information. After 9 months of feeling bad, heart palpitations, feeling like I had the flu and other assorted symptoms, I was just diagnosed as having Epstein Barr Virus and I guess because I have had it for so long it is called Chronic Fatigue Syndrome caused by the virus. All the time since this started in Dec 2007, the doctors thought my thyroid medicine which I had been taking for 40 years was causing my heart palpitations. After having it lowered several times, then seeing an endocrinologist and being changed to another thyroid medication - I still felt bad. I started seeing a holistic MD in July and she was working to test all my hormones, adrenals, thyroid, female hormones and found things were rather "out of whack" - so to speak. She started me on some vitamins, put me back on natural thyroid, etc. Still not feeling well she said she wanted me tested for Epstein Barr and as a shock to me, it was positive for the virus. I know little about this except what I read on the internet. I think there are 4 groups of numbers on the blood test that show the stages of the virus. The first she said was the first antibody and that number and the second number are normal now. The last two numbers are in the 500's but I don't know the range - it just says more than 120. I know there is no treatment for the virus. I feel like I have the flu and it seems even worse since I learned I had this. One question I have is does this virus get better and worse throughout the its course? Thinking back and thinking of how I am feeling now - seems it did get a little better then worse - but I never felt good one minute of that time - just not as bad. Like now - I am feeling worse. Perhaps someone can share insight into this. I have heart palpitations from time to time and anxiety. I also have stressed adrenals from all of this so the symptoms of that are the same as thyroid and the virus - and chronic fatigue. I am at my wits end feeling bad. The doctor is giving me vitamins by I. V. I only had one so far as I was just diagnosed a week ago - and she said that might not do anything as I am so depleted from all of this.
I have heard from several on this board - but welcome any help you can give. Especially about the virus and if it gets a little better then worse. Right now I feel really bad. She said we need to get the virus under control and get the numbers down - but to get my symptoms under control so I feel better.
I posted on the thyroids boards with you several times. Mine do your symptoms and mine go hand in hand. I had mono, really bad case a few years ago. I am going to ask my doctor now to check me for Epstein Barr.
Hope things improve for you. I will stay in touch, I remember you were waking with early morning anxiety the same as me.
Gosh, I feel for you as you have been through so much. I hope this gets things better for you. At least knowing what is wrong will eliminate some worry I hope.
Yes, I do remember talking with you on the thyroid board. From what I know the Epstein Barr Virus is what causes mono and possibly chronic fatigue. I am not sure at all that mine was truly my thyroid now when this all started 9 months ago - perhaps it was adrenal stress - not sure. The doctor said I had the virus for a while now - I don't know how long that would mean though - but don't think it was 9 months. I don't think I actually have mono as I think that is contagious - isn't it? Doctor said I am not contagious. She refers to it as chronic fatigue or an adult version of mono - whatever that is. Anyway, how long did you have mono? - did you feel like you had the flu all the time? I think the reason I feel so bad now - not that I didn't feel bad the whole time - is that not knowing what was wrong made me very nervous, anxious and frightened all the time and that gave me just enough adrenaline to keep me moving. Now I am crashed which really sounds like the symptoms of mono or chronic fatigue.
How are you doing these days with the panic attacks, thyroid, etc.
I am still waking with the anxiety/panic thing first thing every morning. Some days worse than others. My thyroid levels are normal but I still have very high antibodies. I had a real bad case of mono about 5 years ago when I was 46. Doctors saw elevated liver enzymes and thought of everything but mono. I was tested for every known liver disease all of which were negative. Then they discovered the thyroiditis, or the GI doctor they sent me to found it with a very high heart rate and blood pressure. Anyway, to make a long story short, my teenage son came down with mono, along with one of my students at school, then many people at school and community. I don't think I gave it to them it was just a coincidence that a lot of us got it at the same time. Doctor explained that I had the mono first then the thyroiditis due to my body trying to kill mono virus got my thyroid. etc. etc.
Since I did not know it was mono I did not stop and go to bed as you are supposed to but kept right on going. Now I think I am paying for it.
It rung a bell when you talked about reactivating the virus and it seems that the same time every year I get sick. Feel like poo and 3 of those times was when I was under a lot of stress, my husband very sick in the hospital and burning my candle at both ends. I always tell my doctor it feels like it did when I had mono. I will be getting checked for Epstein Barr and see if it is reactivating.
The last time this happened I had just had surgery and then Christmas. I was just worn out from it all, and then I got sick. Really has not resolved
since that time.
Are you still waking with anxiety? My adrenaline rushes are not too bad during the day, just early am. I do have real bad shaky, sinking spells. Thought it might be blood sugar related, but so far I have not found any real bad lows. I do still believe my thyroid is tied into this somehow, because I have so many of those symptoms too. My body is just tired all the time and I have to push myself.
I do not have the bad panic attacks that used to wake me up at 3:00 A. M., but I do wake up with feeling my heart beating faster. My doctor believes that it is from the adrenal fatigue because my saliva test showed that in the morning my levels are high and then taper off during the day and then lower at night. Because at night my heart rate is pretty normal and then I wake up with the feeling of my heart beating faster. I am not sure how much is stress either dealing with all of this for so long - probably some of both. We are still working on my thyroid levels, which seem to be better, I still have adrenal stress from everything that is going on and has been and I am fighting the Epstein Barr virus. I don't believe it is mono because it is not contagious she said or she would have warned us. All of these things are connected and many brought on by stress. That is another thing - trying to avoid stress and getting it over and over would be really bad. I have never handled good or bad stress very well and don't know why - but have to find out and learn something. This right now is really frustrating, but there is not a thing I can do, but try to relax and not stress - or it won't get better. Apparently I have had it for a while, but don't know where in my last months of agony and being afraid of what it was - that I actually got this. Never will. It more or less makes it so hard to get out of bed and when I do I just feel like I have the flu all the time. No other real symptoms...it has basically lately curtailed most of what I do -
Let me know how your test goes - when is that? and how things are going. Do keep in touch.
Yes I will. I am still in the searching for answers stage, but do know my Hashi's antibodies are real high. I have also been diagnosed last year with fibromyalgia that I did not believe. I like you have stressed over "I must have something really bad or I would not feel like this" and need to get on with life. I will keep in touch, I am to see ENT about growing thyroid nodules in October and a new endo then also. My internal medicine doctor is good, but she is real busy and I feel sort of abandoned at this point.
I know - even since I have been diagnosed with the virus - my mind still doesn't believe I should feel this bad - that is awful thinking. I am trying to control it - but when you can't do much but lie around - your mind goes crazy. The doctor said I have Epstein Barr, still dealing with adrenal fatigue and still adjusting my thyroid. I guess that is enough to make you feel awful. Right now it is just like a really bad flu - not cold or coughing type - just feeling very bad - wanting to lie down most of the time and when I am up I am beyond exhausted and want to lie down. I know these are symptoms of what she says I have for sure. All these months though of missing my life and the me I want to be are enough to send you into a depression which I fight constantly.
so you were diagnosed in Sept? What has been the course of treatment and how do you feel now?
Just curious as the dr feels this is what my husband has and is being tested next week. He has been ignored saying he pain is stress related and now the dr is finally listening after 4 months.......
I asked for a mono test to be included in my regular blood panel work.. the nurse asked me if I was serious and I said I was. The test came back with high a EBV ab VCA IgG of 2556 and the EBV Nuclear Anitgen abG 368... She told me I had tested positive for an old virus. I feel like I have now. I remember years ago the terrible feeling but never got tested at the time. It lasted for about 6 months and I thought I didnt want to live the rest of my life feeling this bad. I just came out of it one day and I was fine. I have noticed that when I get depressed or stressed out I can feel it coming on the EBV feeling.. I then feel exhausted, headachy the whole nine yards. I have had a sore throat for 2 and 1/2 months. I wish there was more information available to those of us who suffer with this ailment. I know it will end some day soon so that keeps me going. I would love to know if anyone knows of any medication that helps with the chronic fatigue?? I have hope that we may have a better understanding of this draining virus.
I have had what they call Chronic EBV for 18 years. That is just a symptom of a different problem: your body's immune system is not keeping the bacterias and viruses in your body in check. This can last all your life unless you find the protocol that works for you.
Some people follow what is called the Methylation Block Cycle (google it), and are doing very well.
Others are taking an antiviral, which helps some but not all.
Research has shown that there is a part of the immune system that has been "cleaved" almost in half by different viruses, (called the RnaseL system) so the viruses and bacterias begin reactivating, causing cytokines to build up in the body. They are the things that make you feel like you have the flu, sore throats, and body pain and aches.
There's a Dr. Paul Cheney in N.C., whom many patients see for their treatment; he believes the virus attacks the heart muscle, and the "I have to lie down right now or I will die" feeling is actually saving some patients' lives as it re-regulates blood flow to your heart.
A chartered U.S. gov't organization is called the International Association for CFS/ME (IAFCFS/ME) that has a new group of professionals dedicated to finding answers for the condition.
They haven't accomplished very much over the years, but have new director who seems to be compassionate, very focused on finding answers, and has done some important research into the problem. I think her name is Dr. Nancy Kaiser.
You can google the "other" national organization in Mass., which is all volunteer, with a medical board, and get lots of the latest information, researh being done, and plans for the future. They are focused on finding a treatment that works for all the varied ways CFIDS/ME can play out its "program" in each individual person. We are all different, genetically and physically, but they believe that there is one reason for the illness, and they are following where the science leads to find exactly what it is that leads one patient to get labeled with EBV, another with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), or, as they feel the real name is, Myalgic Encephalmyelitis. I posted a thread today about not only the different names, but research anyone can do to learn more.
Until you know more, there are some important things you can do, and the first is pace yourself: you have an "energy envelope", which may be 4 hours, 30 minutes, or even 10. You may feel great one minute and deathly ill the next; that's when you stop everything and get flat on your back until you feel stronger. After a while you know how much activity causes this bad feeling, and you will learn to pace yourself accordingly.
There seems to be many paragraphs spaces below: keep scrolling down, there is more improtant info there for you....
The CDC recommends Cognitive Behavioral Therapy (CBT), to help you learn to cope (as with any chronic illness, this is very important.)
They also recommend exercise, but almost all the expert CFIDS/ME drs say it is dangerous because anerobics can make us severely ill. If you can walk for a few minutes and not fall sick within 48 hours, you can add 5 min. increments at a time, and judge what that feels like later; if it makes you sick, cut back some more until you find the pacing that is not detrimental to you. If any length of aerobic exercise makes you feel worse, you should not do it as it means your body goes from an aerobic condition to an anerobic condition (not using your oxygen properly, or it gets depleted abnormally); this brings on an oxygen starvation to your entire body, including the organs and brain.
One doctor says some of his patients are actually having oxygen be toxic to them, a serious condition.
There are expensive clinics called the Fibro and Fatigue Clinics that do far more testing, and prescribe accordingly. There are about 10 across the country.
The new Whittemore Petersen Institute just opened in Nevada; the lead scientist's daughter has been very ill for a long time. She has said they will have a cause and treatment in a year. We will see; I have seen this before, having read everything printed about EBV and CFIDS/ME for the past 18 years, and a lot of promises have been made with no results.
Try to eat high quality proteins, many, many, veggies (steamed), no stimulants like caffiene, and no foods with sulfer in them (cabbage, onions, brussel sprouts, etc.) You can probably google sites that can tell you the full list.
I wish you the best and hope you find a protocol that works for you!
Last edited by curiousk; 11-08-2008 at 02:43 AM.
Reason: Sorry, didn't proof well...
Thinking back I can remember for several years every now and then getting this weird feeling like I was extremely tired and it was like this black cloud would just take over me for weeks or months and then poof it was gone. I remember thinking during one episode that I didnt want to live if the rest of my life if it had to be that way. I was miserable and the fatigue knocked the wind out of me. I think I can handle anything except the bone crushing fatigue. I would and do get this back again and it is always during times of high stress or when I am getting depressed about something. I can feel it coming and can sometimes push it away and keep it at bay but if the stress or too many things all at once happening that are negative I lose the battle with this thing and it will take over my life for weeks or months and I have to ride it out. Every night I think this is hopefully the last day of this. I hate that people think I am just lazy and like to sleep in. Believe I am sure we all want to all be up bustling around and feel good. Just give me a choice. So as for me I believe is stress related... and most of the time I cannot control what happens around me. Just need a way for it not to affect me mentally and then physically. Sometimes I take on others problems and that affects me also. Does anyone else have recurring problems when you have high level stress or just stress in general. I want this crap OVER.
I was diagnosed in 2001 with Chronic Fatigue Syndrom due to EBV. I was sick a while before the diagnosis. I struggled to work (at Medicaid) and to keep up my community activities. Slowly I gave up unnecessary things to focus on keeping my job. Every time my bloodwork was done, the EBV antigens show higher each time. I also have fibromyalgia. The EBV has weakened me to the point that I also have a heart condition, sinus tachycardia, which causes my heart rate to beat very much faster than normal. I can wake from sleeping with a rate of 150.
I got to the point where I had given up everything except my job and I struggled to keep it as long as I could. I retired at age 52 (disability retirement) from the State of GA. officially in Dec. 2007. I am now in the process of applying for my SS Disability.
I wouldn't wish this kind of fatigue and pain on anyone. Nobody understands how it feels unless they have it. My neice, age 34, has also been diagnosed with the EBV, Chronic Fatigue, Fibromyalgia, and tachycardia. She had been sick for years but would not get the bloodwork done until this year.
It concerns me when I research EBV that it has been linked to many serious diseases. I have had the first test for MS, but it was inconclusive, so they didn't do the second test which would have been a spinal tap.
I would like to hear from anyone who has suffered from another serious disease after suffering from EBV.
I have been suffering with what I believe to be CFS, possibly FM with a strong adrenal fatigue component for over 12 years! I have been to numerous MD's, ND's, FNP's, you name it. They all do tests. Some come out normal, others not, but no one has come up with anything that helps. I have suffered from unrelenting fatigue all this time, went in to early menopause, (strong symptoms started at age 40 when all this started and then menopause at age 49), which I believe is from my adrenals first robbing estrogen to convert to cortisol and then not making any once my ovaries no longer were making any.
One FNP did saliva testing for cortisol levels and said she didn't know how I got out of bed in the morning, but only prescribed compounded estrogen and progesterone, which I took for a couple of years, but did nothing.
Last Dr. a ND, ordered $2000. worth of tests.
Results: CMV AB, IGG - high 7.8 should be less than .9 (not sure what this is cytomegliovirus?)
EBV AB VCA, IGG 2553, should be less than 100 to be negative
EBV NUC AG AB 574 also s/b less than 100
all of my sex hormones were lower than they should be.
He told me that whenever he has seen EBV # that high patients complain of extreme fatigue, but nothing much helps. Thanks doc!
I'd travel anywhere and pay anything that I could to find relief. I had to give up a very lucrative job when this all started. I have found that when under stress, I am much worse. That's the adrenal fatigue. Your body has no reserves to fight. I also don't sleep well anymore. Terrible hot flashes and night sweats, almost constant. And wake up during the night and can't fall back to sleep. Really great for the fatigue! Just when I seem to improve ever so slightly, something happens to stress me, and I am right back to square one!
I also suffer from gluten intolerance, I formerly thought was IBS until I gave up gluten.
Sorry I have no answers. Maybe someone does? Anyone have a practitioner out there who understands and can treat. Someone spoke of the fibro cf centers. That must be the ones started by Jacob Teitelbaum. I heard they will take ALL of your $$$ but not help.
To all of you suffering with the so-called chronic fatigue syndrome, I am so sorry for your pain and fatigue and confusion.
Stress is an absolute killer if one has "CFS"...which is correctly named Myalgic Encephalomyelitis.
A "trigger" causes the body to lose its ability to hold down common viruses and bacterias, whether EBV or CMV (Cytomegalovirus), HHV-6, or any other virus in the herpes range especially (these cause the mumps outbreaks we've read of not too far past).
There are several non-profit orgs that you can go to: the National CFIDS Foundation, or the Fibromyalgia National Association, especially, to learn more about these scourges.
This illness is a pandemic, but the CDC has now changed its criteria to include any fatigue at all, and over 200 different illnesses cause fatigue, and that word means nothing to doctors who follow the CDC's deliberatly misleading criteria.
Look up the Canadian Criteria for Myalgic Encephalitis and see how many of their symptoms you have.
You can also look up "Methylation Block Protocol" and follow those leads to even more fascinating information about "CFS" (and Autism, which CFS has been compared to biologically, by a Dr. Sarah Myhill, doing wonderful work with patients.
I think she is in New York, but I may be confused; she may be in the UK.
Unfortunately, in the U.S., the Fibro and Fatigue Centers have captured all the attention, and yes, they are very expensive.
The best two drs treating patients in the U.S. are Dr. John Chia in California, and Dr. Lerner in Bloomfield Michigan; the first has found an enterovirus in the guts of 85% of CFS patients. The latter is treating patients with a variety of meds; anti-virals alternating with antibiotics I think.
Rich VanKonnenberg, Ph.D, is on another site; he has done extensive research regarding the "Methlation Block Protocol" and there are sites with narratives weekly from patients using his (and Dr. Sarah Myhill's) treatments, with slowly but surely success.
Every one of you should be reading "Osler's Web" by Hiliary Johnson, who wrote the book "Seabiscuit". It is the true, documented story of this plague.
Many "medically inclined" people on here believe "CFS" does not exist; until they get it, it is unbelievable, I know from firsthand experience.
Speaking of stress: it is vital that anyone with true CFS/ME does not do anything aerobic. Our bodies go into an anerobic (without oxygen) state anywhere from 15 min. to 72 hours later.
Heart damage is a concern, however, it is Diastolic Heart Failure, from a low volume of blood pumping into the heart, not Systolic or Congestive Heart Failure; the two are different and need different treatments.
There is a test, Impedence Cardiograph to test for that; a company called BioZ in California (call 1-800 Information) and ask them if there is someone in your area that does the testing, then go to a good cardiologist with the results.
EBV can do damage to your body; it is well known to be implicated in many cancers, especially nasal-pharangeal, so be aware, but not scared, of that. Just keep watch on your mouth, throat and voicebox. EBV is one of the few viruses that can cross the blood-brain barrier, and it can wreak havoc with your brain, causing the famous "brainfog" CFS/ME and FM patients have.
CFS/ME is also being linked but not proven yet, to a specific type of leukemia, by the National CFIDS Foundation.
Viruses have been found in many types of cancers, so do have your annual checkups and tell your dr. of any unusual symptoms....learn the "7 signs of cancer" (search for them).
One dr. has found an astounding 6000% increase in thyroid cancer in his patients; if you are hypothyroid and you think the replacement therapy is not working, ask for a thyroid and parathyroid CT scan just to be safe.
(This is Dr. Byron Hyde, who edited the amazing "The Clininal and Scientific Basis for Chronic Fatigue Syndrome" book; another very education read for any patient who can understand a little medical terminology).
I never mention my "CFS" to my dr... they just look at the false and purposely misleading CDC treatment guidelines (Cognitive Behavioral Therapy-which can help any person with a chronic illness, so you could try that), and Graded Exercise Therapy - which can be fatal for some of those with serious CFS/ME, which has been proven in so many (ignored) studies that it is criminal.
I am advocating for two things: that the CDC adopt the Canadian Criteria for M.E. while stopping the push to psychologize "CFS" like the UK has done for 20 years, causing untold suffering for their patients. Second, I am advocating for a class action lawsuit against the CDC and NIH for not using money expressedly given to them for "CFS" research, but instead diverting to other research, like measles.
One of the national organizations used to call it Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), and thousands of us supported them and their research. Then they got a $5 MILLlON grant from the CDC to start promoting their lies, and they fell for it and propagated an "Awareness Campaign" which went out all over the country...yes, it raised awareness, but of a watered down, fatigue based illness. M.E. is not fatigue based; it is neurological, immunological and involves the CNS and endocrine systems also.
There is much to learn about your illness, but you must start reading and learning in order to understand it. Besides "Oslers' Web", which is an investigatory documentary, a book which can help you understand and cope is Katrina Berne's "Running on Empty". I have met her and she has CFS/ME and she is a psychologist who can only work a few hours a week, maybe less since I last saw her.
She understands what you are going through and she can explain to you in layman's terms what each symptom means, and how you can help yourself cope with this illness.
I've gone on forever here, but when I see people so ill and wondering what in the world happened to them, I feel your frustration, anger, grief over lost lives, and your very real pain.
I have had CFS/ME for 18 years; FM also. I have learned to cope with it mostly by listening to my body; saying "no, I cannot do that, I'm sorry" to demands from others; by sleeping on the schedule my body demands or rebels against if I ignore it; by not grieving over what I have lost, but building slowly but surely a quiet, reasonable life, with stress, sure, but letting it go as much as possible and just doing what I can do by not trying to change others. I do not try to "explain" my illness(es) to others, but if I get visibly sick in front of them, I say I must stop what I'm doing for an hour, and go lie down, I don't care what is going on at the time. Lying down when you feel like you are going to die may save your life, Dr. Paul Cheney says...he's a leading expert on CFS/ME in this country.
A new Whittemore-Peterson Institute is open now, in Nevada; they claim they will have a test and treatment withing one year. I don't know if they are taking patients yet; they just got the building done, and their website doesn't give too much info yet. They need donations to keep going. The lead scientist's daughter is severely ill with CFS/ME, which led to her work in geting the Institute built. The NV legislature contributed to its being built also.
I will go now, it is very late in the morning, and my bedtime. I pray each and every one of us will have a treatment soon, and will be able to get our lives back; meanwhile, build calm and serenity into your daily lives until that happy day..
Last edited by curiousk; 12-04-2008 at 02:45 AM.
Reason: Name errors, typos, the usual while so tired and close to bedtime. Thanks