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How do you function being sick all the time??
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How do you function being sick all the time??

I have had CEBV for the past 5 years and most times it makes me so sleepy that all I do is sleep.  I barely eat or do anything else.  My husband says that I am an adult and I should just push through it.  This virus has pretty much ruined my life.  My son is 9 and I barely spend time with him or with anyone else.  I am very isolated and am afraid to make friends because people don't usually understand.  Is anyone with me on this?  I need to take care of my son and I can barely take care of myself.  There is no one else to help.  It is very depressing.
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472714_tn?1207528248
You describe my feelings exactly. I have been since for only 15 months, but I am so exhausted and sick all the time that I have become a recluse. I don't go anywhere or do anything. I have 11 year old twins and 15 year old. They have been pretty good, but when my husband travels they are angry with me for not being able to take them to social functions, most of the time I can't drive from the dizziness. I am also embarrassed by my appearance. This virus has not only robbed my of my life, but my looks also. I have gained allot of weight, I am very pale, my skin is red and splotchy and my hair is falling out. I can be very depressing. I am right there with you!
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Avatar_f_tn

What helps me is pacing myself.  I'm not depressed... I'm actually a happy person. What helps me is focusing on getting well and keeping busy by keeping up-to-date on this devastating illness. Currently I'm on a research protocol that is set out to cure people with CFIDS, autoimmune illnesses and other conditions. I am getting better and some of the improvements I've made is the headaches have gone away, my menses is back, the tachycardia is present now only on bad "herxing" days, I can tolerate gluten again and when I'm not herxing... I have more energy now on my good days.

There are also various treatments that can help people with CFIDS function, although not cure them. I post many of these treatments on my website.... I also posted information on the research protocol that I'm doing. The medications are not research medications --- any physician can prescribe them.  Here's the link to my website:

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




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Avatar_f_tn

P.S. --- Have you guys heard about Dr. Montoya's success with CFIDS patients using a very powerful antiviral drug ? The first research trial was successful and now they are doing another one... I believe with 1,000 patients. Let me know if you would like more info. As far as I know, there are two possible cures for CFIDS... I'm doing one of them.
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484212_tn?1210183595
I feel the same way.  I'm still not sure this is what has been wrong with me for the last couple of years and unfortunately your husbands opinion is the one I hear all the time only inside my head.  I went from being a successful type A workaholic to a person who is grateful to be able to make the coffee and feed my cat in the morning before having to go back to bed.  I don't have any children to take care of thankfully and my husband has said all along that something was wrong with me and I needed to go to the doctor so he is very supportive (for now anyway). But I always though diagnoses like "Chronic Fatigue" or something like Chronic EBV that doctors don't even seem to be able to agree on was a lot of bull for people who were hypochondriacs, depressed, or lazy and wanting sympathy.  Karma seems to be biting me in my self-rightous butt and I still am having a hard time accepting that Chronic EBV is "all" that is wrong with me.  I used to be so independent and now I can't even make a living or dinner for that matter.  My greatest fear is that my husband is going to get fed up and leave me and then what do I do?  He has been great so far but how long can he put up with this?  I think I would leave me at this point.  I just feel so guilty and worthless all the time.  I am a ghost of the woman I was three years ago (a fat, pale, sleepy ghost) and I don't have a clue what to do about it.  Tell your husband I have spent three years trying to "walk it off" and all I got was sicker and sicker for the effort.  I am a person who graduated 1st in my class, enjoyed the "challenge" of basic training in the military, and was very successful in a competitive male dominated business (where I was my husband's boss when we met) and now I can't keep up simple household chores for two people and a cat.  Whatever the **** this is (Doctor says CEBV), if I can't do any better than I am I don't know how anyone could take care of children.  I am struggling to keep up with the laundry and dishes etc for us and we order take out almost every night or my husband grills.  I don't know what I would do if I didn't have my husband's support.  I am so sorry for you that you don't have yours.  I just keep trying to tell myself that all I can do is the best I can and if I'm doing the best I can I shouldn't feel guilty about not doing things I used to do.  
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Avatar_f_tn

I think "Chronic EBV" is actually Chronic Fatigue Immune Dysfunction Syndrome. And unfortunately... it can be disabling. I think I've had CFIDS since I was 18 years old, after a severe case of mono and then proceeded by valley fever. Although I suspected for years that I had CFIDS, I wasn't actually diagnosed until a couple of years ago... when my illness took a turn for the worse.

How is your physician treating you ?
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484212_tn?1210183595
So far I'm just taking anti inflammatory drugs and nothing else.  I was just told about EBV and got the bloodwork back a month or so ago.  Right now I am still being tested for a billion other things to rule out something else.  The funny thing is I don't remember ever having mono.  I just started going to the doctor after Christmas so I'm just learning about all of this.  
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Avatar_f_tn

I'm not surprised to hear that you haven't never had mono. There are many people with CFS who have never had a mono diagnosis. The latest research points toward a variety of triggers prevalent in CFS.... a chronic bacterial infection, a viral or chemical exposure which leaves the nervous system in chaos or a viral/chemcal exposure that caused a temporary injury to the brain in the area of the brain that deals with immune response.

I am happy to hear that your physicians are ruling out other conditions. I heard about one woman who was diagnosed with CFS and she found out years later that she was misdiagnosed... she had diabetes ! I don't know how her physician missed that one.

All the best with getting a diagnosis and proper treatment.

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485720_tn?1218539760
Wow, how great to see a forum on EBV. I was recently diagnosed with EBV after testing positive through blood work and have spent nearly every waking moment on researching it (probably not a good thing but I want to know what is going on with me). I have posted on multiple forums for answers on what could be causing my problems, but it seems either no one knows or I get no answers. Some posts were prior to finding out about EBV, some after. Anyways, I'm new to all of this and have more questions than I have answers.

I'm not so sure that EBV is the only thing wrong with me though. I've been to multiple dr's who have given me multiple diagnosis and "possibilities" but no one has been able to provide effective treatment. I was diagnosed with brain injury but the neuropsychologist doesn't feel this is causing my problems. I've been to a psychiatrist who suggested it might be fibromyalgia. I have many of the symptoms, with the exception of pain when touching the trigger points. I know that's the requirement for diagnosing it. I've been to a neuro who after an MRI told me he doesn't think it's MS (he initially thought but changed his mind after getting MRI results), and he told me he couldn't help me because he was clueless as to what's wrong with me. He said the MRI showed some vascular abnormalities (no particular name given and he didn't seem concerned about it) and he concluded that more than likely it's EBV causing the problems. He threw out some possibilities of chronic meningitis, early stages of MS, and even cancer. I don't fit the symptoms of chronic meningitis, although I did have meningitis as a child. My pediatrician thought it was mono and told my mom to take me home and let the illness ride out on it's own. Hours later, I couldn't move my head and my mom took me to another dr who sent me straight to the ER. He said another 24 hours and I would have been dead. Cancer is too hard to isolate based on symptoms alone. Everywhere I go, I'm told no one can help because they can't figure out what's going on with me. It is so frustrating that I broke down in the neuro's office.

I've been on multiple muscle relaxers, pain meds, etc. with no help. I scheduled an appointment to see my family dr, who I was told could treat EBV. I'm also going to have the spinal tap and EEG done that my neuro recommended, despite not feeling it will provide any information. However, I want to make sure I've done everything possible to determine the cause. Although the pain is horrible at times, I can deal with it better than I can the fatigue. It's so bad that I suffer from what I can only refer to as "sleep attacks" where all of the sudden I become extremely sleepy to the point that my eyes burn and I can't hold them open, and I experience this strange noise in my ears that I can only describe as "whooshing". Adderall (adderrall) XR and Provigil have not been helpful. I tested negative for sleep apnea, narcolepsy and hypersomnia.

A ton of tests, a ton of medications and still no help...extremely frustrating!
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Avatar_m_tn
I know this does not help,  but I am with you on your problems.  I on the other hand could live with the tired all the time issue, mine is the dizzyness and moving around minor aches (back of the head, stomach, chest etc)  Do you ever have those issues, and spending $$$$$$ on all kinds of test and not seeing a light at the end of the tunnel.  You just feel you have to do something.    
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485720_tn?1218539760
I don't really have a lot of dizziness but I do have the aches. Sometimes I have chest pain or tightness that isn't horrible but very noticeable. I also have pain in my back, legs, arms, and hands. Those are where I typically have the most pain. I get stomachaches often, but that's contributed to my IBS. Do you have IBS or have you been checked for it? I've spent quite a bit of money in medications and could probably treat every symptom for an army. I've had multiple tests done and have had to take several days off from work to see doctors. Yet despite all of this, the only answer I've been able to get is testing positive for EBV. As someone very in tune with my body, I think there is more going on than just EBV. However, my family doctor blatantly told me it's all in my head. I understand completely what you mean by feeling like you have to do something.
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Avatar_m_tn
Thanks,  What is IBS,  The only belly issue I have had is acid reflux on Prevacid for that.    Can a Infectious Dr. Test for IBS,  Will try and get a referal to one on tuesday after my Carotic test. (another test just to be sure)   Thanks *
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485720_tn?1218539760
IBS is irritable bowel syndrome. With IBS, the most common symptoms are bouts of diarrhea and constipation, bloating, abdominal pain or discomfort, and gas. Sometimes the urge to have a bowel movement will hit you all at once and you have to go immediately. Other times you might not go for days. There are no real tests to determine it. Most diagnosis are from physical examination and talking to your dr about it. He/she might ask you to keep a food diary to see which foods trigger it. Stress is the worst for flaring up IBS. Heat can also contribute to flare ups.

If you suspect IBS, a gastroenterologist is the best dr to go to. He/she will want to rule out Crohn's disease and other stomach disorders that can cause the same symptoms.
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Avatar_f_tn

Hi Brandi,

It is not in your head. Here is a list of diagnostic tests that are often abnormal in a patient who has CFIDS:

██ T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."

Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/library/showarticle.cfm/id/4320

██ ANA -- "Up to 25% of ME/CFS patients have an abnormal ANA" --- Dr. David Bell   link: http://www.davidsbell.com/PrintLynNewsV4N2.htm

██ Uric Acid --- "Uric acid levels in CFIDS patients are among the lowest I've ever measured, in all of medicine". --- Dr. Paul Cheney

source: http://www.dfwcfids.org/medical/cheney/heart04.part2b.htm --- but also see:

http://groups.msn.com/Neuro-ImmuneSupport/cfidsresearch.msnw?action=get_message&mview=0&ID_Message=395&LastModified=4675644569616562305

██ A.M. Cortisol Level --- source: http://phoenix-cfs.org/Hypocortisolism%20in%20CFS.htm and Evaluating Salivary Cortisol Levels in CFS Patients

██ CD4 Count --- "We have 155 cases with random CD4 counts below 500, 62 cases below 400, 21 below 300 and 3 below 200." --- Dr. Paul Cheney

Cheney also says, "some of my sickest patients have elevated CD4 counts"  Source: http://www.immunesupport.com/92fal007.htm

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

██ MRI Scan --- "Half have abnormal MRI scans" --- Dr. Paul Cheney

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

"Cranial MRI will show small T2 weighted high intensity lesions in 80% of cases" ---- Dr. Charles Lapp

source: http://www.cfstreatment.info/for_your_doctor.htm

██ SPECT Scan --- "80% have abnormal SPECT scans" --- Dr. Paul Cheney

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

██ EEG --- "95% have abnormal cognitive evoked EEG brain maps" --- Dr. Paul Cheney

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

██ Tilt Testing to Rule out POTS (postural orthostatic tachycardia syndrome) ---  source: http://www.cfids.net/archives/2000/2000-4-article01.asp?view=print

██ DEXA Scan --- source: http://phoenix-cfs.org/The%20SITE/OsteopeniaCFS03.htm

██ Holter Test (heart) "All 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves"

http://www.chestjournal.org/cgi/content/abstract/104/5/1417

██  Viral Testing --- EBV titer, CMV titer, HHV-6 titer (best methology & lab: http://www.drpodell.org/chronic_fatigue_syndrome_hhv6.shtml ) You can also visit the CFIDS Association of America's page on viruses that play a role in CFS patients.



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485720_tn?1218539760
Thanks for the info. I went to another PCP today who seemed to be a little more understanding. He said that he's thinking that in addition to the EBV, I may also have Chronic Fatigue Syndrome and Fibromyalgia. However, he needs all of my medical records to be sure. I'm still waiting on my EEG and spinal tap results to be sent to my neurologist to rule out MS and any other neurological disorders. He put me on Elavil to see if that helps. It's one of the most common meds prescribed for fibromyalgia. It's amazing how an antidepressent can help pain, huh?

Most of my lab work and other tests are coming back normal, which as you pointed out, doesn't necessarily mean anything. I'm just hanging on in hopes that we will find out exactly what's going on, whether EBV is the main problem or an underlying issue.
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Avatar_f_tn

Hi Brandi,

The CDC used to say (can't find the link now) that if you have had chronic EBV for 6 months, then your physician should rule out Chronic Fatigue Syndrome. I actually believe that chronic EBV is CFS and I know that singer-actress Cher has CFS... due to Epstein Barr Virus.

I'm happy that you have a physician who knows how to diagnose and treat CFS. There are still some physicians that don't believe CFS is real ! Really amazing because the research on CFS is quite extensive and if these physicians would read it, they would have to change their minds. You have some options for treatments. I listed many of the treatment plans written by the experts on my website (check my profile for the website address if you are interested).

Best,

PlateletGal
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