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EBV, CFS, clinnical depression or all of the above?

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Chronic Fatigue Syndrome
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Posted 3/13/2012 4:29 PM (GMT 0)
Was diagnosed with convalescing infectious EBV in January. Symptoms were severe fatigue, faintness, body aches, also had some episodes of vomiting, chills and other flu-like symptoms. He suspected depression initially, prescribed 50000 mg of vitamin d as levels were low.

Returned a month later with the same level of fatigue, and the doctor acted surprised to hear it. Did a few tests and discovered I had an ear infection, prescribed amoxicilin. Still suspects depression, and now CFS, but agreed when I suggested EBV could be lingering on, didn't have much comment on that.


Last week saw a slight break with some improvement, but still not back to normal. It really does start to drive you crazy feeling this way day in and out. It really makes you feel like you're dying, it feels like you are not yourself, it feels like your whole life is a hallucination. Your surprised to see another day each morning.

Today it feels like the circulation to my head is being cut off, sort of like a tension headache. I also notice that lately doing ANY kind of physical activity that is straining at all results in weakness and soreness of any muscle that was used, like I've just finished a workout. Something as little as carrying a bag of groceries.

Is there ANYTHING that can help? Are there any home remedies to fight extreme fatigue and lightheadedness? Any way fight the feeling of hopelessness?

Post Edited (needsomehelp22) : 3/13/2012 2:54:57 PM (GMT-6)

Posted 3/14/2012 9:58 PM (GMT 0)
Hi Needsomehelp,

Sorry you are feeling so ill. Just feeling that poorly can really get you down.

You ask if there are some home remedies for fatigue; have you tried any type of detoxing? Your body could be holding on to a lot of toxins as a result of your long illness.

Hop on over to the Lyme Disease forum. There is a permanent thread at the top of the forum titled, "New to Lyme? " start here. In there is a section on detoxing that is really thorough.

I think you will find it helps a lot. Some of it may sound simple or even silly, but it really does work!

Hope you feel better.
Posted 3/16/2012 1:43 PM (GMT 0)
There is a woman who was a professor at a university in Pennsylvania who developed very severe CFIDS after she contracted EBV during an epidemic on campus. Most of the students got well, but she did not. She lost her job and moved to Arizona where she can get legally get the only drug known to hold symptoms in check. My CFIDS brain cannot remember the name of the drug, but it's currently illegal in most states.

It is not known why some people recover and some do not. Clearly there are other factors at work. You have not been sick for a long time, so you have a good chance of recovery. It can take a few years though.

Make sure you're eating healthy and I would suggest a natural anti-viral like Olive Leaf extract. It needs to be taken long term to see benefits.

I believe Lysine is known to suppress the EBV virus also.
Posted 3/17/2012 5:22 PM (GMT 0)
Most clinicians believe myalgic encephalomyelitis, sometimes also called CFS, can be diagnosed clinically after a month. Research diagnosis is after 6 months, but that has no clinical meaning according to some ME and CFS experts.

A 2006 CDC study found that the key characteristic in patients who did not recover after an acute infection was the severity of the original infection regardless of the pathogen. This probably combines with a genetic predisposition or an immune system assault that throw the immune response off. Dr. Ron Glaser has done multiple studies associating EBV (HHV-4) with this disease as have others. Others have looked at other pathogens. According to Dr. Dharam Ablashi, co-discoverer of HHV-6, has testified that about 10-12 pathogens have been implicated. These may or may not join with environmental assaults.

Dr. John Chia, who is an infectious disease specialist whose son developed ME after a bout with an enterovirus, sells a proprietary anti-viral formula of Chinese herbs called Equilabrant. There is a link to purchase on a page on the Enterovirus Foundation site. The caution there is he does not recommend it if you have a genetic tendency toward autoimmune disease.

Drs. Martin Lerner in Wisconsin and Jose Montoya at Stanford both have done successful pilot studies of anti-virals (Valgancyclovar I believe) in CFS patients where EBV was the identified pathogen. This only works if EBV is the only pathogen present. Many people have multiple pathogens in the mix.

The key to a diagnosis of ME is specifically post exertional malaise lasting 24-hours or longer, unrelieved by rest, and upon minimal exertion such as walking the dog or doing the dishes. This combined with memory problems forms a pattern that is unique to ME. Please note that this very specific and severe form of fatigue is completely unrelated to the tiredness of depression. Depression can co-occur with any disease including ME - being this sick is depressing and being situationally depressed is normal - HOWEVER it is not a symptom of any disease.

When your doctor says you are probably depressed what they are really saying is "I have no freaking clue and it is easier to blame it on depression than admit I'm clueless." Run do not walk to a more informed doctor.

I would recommend that if you meet this diagnostic criteria in a few weeks that you make an immediate appointment with an infectious disease specialist (Not your GP - they are not trained to handle this sort of thing) or get on the waiting list to see an ME specialist. Print out this study to take with you.
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

Some of them take insurance, some do not. If you do have a viral trigger the sooner you are seen by an expert the better your odds of an anti-viral being effective. The longer you wait, the harder it will be to find the original pathogen.
Posted 3/20/2012 10:11 PM (GMT 0)
If your fatigue etc. is from EBV and other viruses, you can be treated successfully with Valcyte, Famvir or Valtrex. I had CFIDS caused by viral infection-- had it for 3 years, VERY severely; I tested positive for EBV and HHV-6. I got much better after being on Famvir for 6 months. Then, I took Valcyte for 10 months and achieved full remission. I would recommend trying to get in to see Dr. Martin Lerner in Michigan. I didn't see him, but I have read good things about him on-line. Be aware that when you first start taking antivirals, your symptoms will get much worse for awhile. It is die-off of the virus, but it means you are healing. Don't give up!! You can recover from chronic viral infection-induced chronic fatigue syndrome (also known as M.E.)
Posted 3/28/2012 12:09 AM (GMT 0)
Loopy Pig-MN here.  Can you give me a list of things to test for in regard to viruses?  I have a new doctor I will be seeing soon, and need to get this as my CFS was viral induced.  I am optimistic to hear your story....because yours was a viral onset as well.  I tested positive for EBV on 2 of 3 markers, the one negative being that it was not currently active.  My other doc said it didn't matter in regard to knowing which virus, you just have to let it run its course.  Here I am 16 months later still dealing with it.  Would like to try what you did to achieve remission.  Any suggestions would be great!!
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