Hello, can someone tell me or have any experience with specific point muscle ache, ligament, & tendon symptoms with Chronic EBV? I only have 6 of 11 tender points for Fibromyalgia.
My recent labs are positive for EBV EA with high titers three years after the onset of mono (mono-spot confirmed).
In Chronic EBV, what is the average time has it taken for the virus to play its way out of your system. I read 2-4 years avg, does that sound right? Is there anything someone can take to speed up the process of the virus?
thanks for your help. sorry if there are repeat questions from other posts, but i'm desparate (pain).
Hi ! Can you tell me what all of your symptoms are ? According to the CDC, if you are having chronic EBV symptoms for more than 6 months... then your physician needs to rule out other illnesses, including Chronic Fatigue Immune Dysfunction Syndrome.
There are some people who make a full recovery with a chronic EBV diagnosis, but many and the majority... do not.
Thanks for the response. My symptoms are severe myalgia in all extremeties with a feeling of denervation, periodic sinuitis and swollen lymph glands in neck, sore throat, & peripheral neuropathy. I don't get very tired however and my rhuem ruled out CFS. He may prescribe Valrex since EBV is in the herpes family. Has anyone ever tried this or any type of anti-viral drug? Any other treatment suggestions?
It sounds like you currently do not meet the CDC's criteria for CFS, but you might want to look at these other symptoms and make sure.
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
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
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
shortness of breath
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)
weight loss or gain
According to Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", Valtrex is less likely to work in patients who have CMV or HHV-6 (I'm assuming high titers, but that is just my assumption).
You may want to ask your physician about Dr. A. Martin Lerner's study done with Valtrex on CFS patients. Since there have been studies on this... I would ask your physician to consult with the experts first or ask him about his experience with Valtrex on his other "chronic EBV" patients. Dr. Lerner used high doses of this antiviral drug for months on his patients and the drug only helped some patients who met a certain criteria.
I was just dianosed this past Monday with EBV. It has gotten even worse since then, the muscle aches have just set in badly as of yesterday. Now I'm reading this could go on for years? Am I in hell? Is this for real? This is the scariest thing - and from what? The girl at the clinic said I could have gotten it from saliva? I didn't even have sex...this could be worse then AIDS I heard and the public has no education on it whatsoever. I'm totally freaking out the pain is pretty freakin bad.
They now believe that you do not have to have all of the tender points to be diagnosed with Fibromyalgia. There is so much more to Fibro than just the pain in those spots. As for the EBV, I contracted it 6 years ago but it has re-activated with my recent surgeries and I do believe it can re-activate over the years from many things, including stress. I feel I will have it all my life, dormant or active. I also have CFS and Fibro. Learn as much as you can about it and try to eliminate stress from your life, get moderate exercise and eat as best you can. I have tried many supplements for my CFS but honestly, the above plus rest is the best medicine. I wish you luck.
If you were just diagnosed this Monday, this isn't the post you should be in (this one is about chronic EBV); unless you've already been dealing with EBV symptoms for a long time, you should check out some of the other posts on non-chronic EBV. The pain you mentioned, unless it's a sore throat, doesn't really fit in with typical EBV; I would check in with an infectious disease specialist to look at Fibro and other things besides just EBV.
Got diagnosed with EBV Aug 2nd 2011 after being sick for 2 weeks took that long for the test results to come back. My symptoms in the beginning was waking up at 12:30am on July 21, 2011 w/terrible pain in my upper right side under my rib cage & instant diarrhea yellow in color this lasted till 4am about every 25 minutes. went to doctor on the 22nd of July 2011 they told most likely a stomach virus or bacterial infection my white count was 12.2 & went to a high of 14.0 normal being 6 to 10 so She put me on Cipro 2x's a day for 5 days. I was also tested positive for Lymes 3 years earlier. after 3 days on Cipro my stool became somewhat normal, but 5 days after I finished my cipro the yellow diarrhea came back so back to the doctor they took blood at this point I lost 12 pounds & was so tired & weak & stomach nausea so I wasn't eating nothing but chicken broth, water, wheat crackers, jello. sucked big time. And she put me back on Cipro this time for 10 days and they scheduled me for a sonogram of my stomach, liver spleen, etc. that came back w/ a result of a enlarged spleen & I tested positive for EBV @ this point I never even heard of EBV. So it's been almost 4 weeks been through bouts of extreme tiredness and weakness just pass out @ random. and I get pains around the upper right rib area where my liver would be that goes through me to my back and muscle tiredness in legs or arms at different times of the week. The doctor told me my liver blood work came back good but this was after the symptoms I 1st had showed a slightly elevated liver levels. Like I said week 4 starting in a couple of days and I still have alot of stomach & intestine issues gas bloating pain soft stool lite brown and sometimes a tinge of yellow with it. I've also started on my brothers advice who has crohn's disease a regimen of raw organic apple cider vinegar 2 tablespoons 3x's a day this is day two of this & I have to say some of the cramps have subsided a bit but to early to tell conclusively he said I can take up to 2 weeks to get the full benefits & i'm also taking Florastor 2x' a day a bit pricey but at this point anything goes as long as it help. I have more symptoms that come & go I will list them. brain fog, panic attacks for no good reason and this isn't my MO @ all. heart palpitations, burning eyes, neck & back of the head pain, soar throat, uncontrolled dry coughing fits, sticky sweaty feet, random itching chest area mainly. this really ***** im trying my best to stay positive and im a very positive person by nature I really believe this EBV screws with your mind as well or it could be a combo of the lymes to.. I will pray for all of you and I would like you to pray for me as well, God Bless you all lets hang in there. I will keep you posted every so often unless a question is sent my way. take care rest when you can.
Try small/low dose of Endep for the pain. It is an anti-depressant that is used with some migraine sufferers. It help to stop the pain signals being sent out to all the body. It should only be endep 10mg but talk to your doctor if you feel it doesn't work or you need your dosage adjusted. I take it before I go to sleep. It gives you dry mouth but if given in small dose you get less pain for the day (wears off for me around dinner time) and takes away 70% of the excruciating pain in my neck and head. On a bad day maybe less. But worth it for me. Sorry if this hasn't worked for you just think it might help someone.
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