Now I know why xPAP wasn't working...I have Epstein Barr

[lazyace]

I have the good fortune of having two conditions contributing to my severe fatigue: OSA and EBV. Never saw the latter coming. I always assumed that teenagers got EBV (one of the viruses responsible for mono), not someone that just turned 41. Further testing will determine whether my infection is new or a reactivation of a previous one. Apparently, 95% of adults in the U.S. have the virus, and it typically remains dormant after the initial infection. However, in some cases it can be reactivated by stress or other medical conditions.

The part that concerns me the most is that there is considerable research that connects EBV to both MS and CFS. While this new diagnosis explains why my fatigue has been so bad, it doesn't tell me whether some of it has been due to OSA.

For those that suffer debilitating fatigue, I strongly recommend getting in depth EBV blood testing done (not the simple Monospot test). In fact, while you are at it, get the CMV (cytomegolavirus) and HH6 (human herpes 6) tests done as well. Until very recently, I didn't know what EBV was, or that it is a nasty virus that is part of the Herpes family. It can cause significant long term fatigue, along with a host of other serious health problems, including heart problems, Hepatitis and malignancies.

[millich]

I'm glad, lacyace, that you've finally found the cause of your fatigue! I know this has been a difficult journey for you.

[lazyace]

I'm glad, lacyace, that you've finally found the cause of your fatigue! I know this has been a difficult journey for you.

Thanks M,

I just wish I knew whether this is the beginning or the end. I need something positive right now!

[momof2inmn]

I'm glad, lacyace, that you've finally found the cause of your fatigue! I know this has been a difficult journey for you.

I second that, glad you finally found out. Hope now you can get some relief.

[lazyace]

I'm glad, lacyace, that you've finally found the cause of your fatigue! I know this has been a difficult journey for you.

I second that, glad you finally found out. Hope now you can get some relief.

Momof2,

I took your advice and tried reaching Ms. P, but apparently she books out further than the doctor does...go figure. However, I contacted the guy who runs the sleep lab and we spent about 45 minutes on the phone going over my PSG report. He is WAY more knowledgeable than Dr. V. At least from the perspective of being able to communicate knowledge to the patient. He had me go back to the machine I was originally on, and changed the settings. Dr. V had prescribed settings on the trial BiPAP that no one including the manufacturer had ever heard of. When I mentioned this to the lab manager, he said "wow, that's not right".

PM me if you want the guys name (maybe you already have it).

[Eureka]

Lazyace -- sorry to hear that you are getting a double whammy on the fatigue problem. My fatigue is so much better now that I am on the cpap -- guess I just had the plain ole vanilla osa. I am going to google EBV -- at present I don't know anything about it. Is there treatment or do you have to wait out the virus?
Hope they have something that will help soon and that your OSA treatment goes well and you can get to feeling better. If you can get help on both fronts you hopefully will see significant improvement.
CLW

[williamco]

the only way to know what part of fatigue is due sleep apnea and what part of any is due to EBV, is to look at AHI number and see if it is a good number (<3 ) or not, because EBV doesn't affect AHI

you don't have this capability according to your profile, and it might be a good time to have it if you are having a party of contributing factor for fatigues.

I only want to warn before going down this rout of EBV, that it might be the wrong direction allowing you to omit apnea therapy ineffeciency for some time

by the way Measles is tied up with MS not EBV. EBV is only with chronic fatigue syndrome, but it is usually a diagnosis of no diagnosis
I don't know if you can do anything about it. in other terms, is there any treatment for it?

[Kiralynx]

LazyAce,

My husband was was 47 (in 1992-93) when he got hit with EBV -- he was out of work for six months because he was so fatigued that just getting up to come eat breakfast left him so tired he had to rest before walking back to bed.

His doctor eventually prescribed high-dose B vitamins for him, and I did a batch of research and came up with a nutritional plan for him, and now he's fine. Well, as long as he follows the plan.

[Hawthorne]

I had mono when I was 40. I thought only teenagers got it too!! I wasn't diagnosed with sleep apnea until I was 63 and I don't think I had sleep apnea much before diagnoses (certainly not when I had mono) because, when I began to feel fatigue again at 63, I checked it out right away. It was not mono and I had the sleep test, diagnosing me with severe sleep apnea.

In "treating" the mono, my doctor said lots of rest and no alcohol until it was over (blood test to show that it was over). Not sure why the "no alcohol". I don't have an alcoholic drink more that a couple of times a week but I followed his advice and got over it. I can't even remember how long it took me to get over it! I have never had a recurrance and never had it before that one bout!

[bast]

Hi Lazyace,

one of your earlier posts said you need something positive about now. i don't know if i have that for you, but here are a few resources that might be useful. I was diagnosed with "post infectious fatigue syndrome" or "virus-induced central nervous system dysfunction" (or ME, or CFS, or whatever you want to call it ) in january of 2008. this was not quite a year after i had started successful xpap treatment for sleep apnea, so we knew there was another cause for my utter collapse.

it's good that you know about HHV-6 and CMV as well as EBV as potential causes for your fatigue issues. It wasn't clear from your post whether you also are currently positive for either of the other virus antibodies at levels indicating a reinfection. The post saying that EBV is not implicated in MS is incorrect - chronic EBV infection is acknowledged in the medical literature to be something of a gateway for other problems, including lymphoproliferative disorders and MS.

here's a link to an interesting article about the combination of HHV-6 and EBV in reactivation, and a summary of a research conference held on post-viral fatigue last year.
"smoldering viruses" article:
http://www.marketwire.com/press-release ... 71774.html

http://www.hhv-6foundation.org/Baltimore-CFS-Lay.pdf
summary of baltimore meeting on post infectious fatigue syndrome


It sounds like you are waiting for antibody titer results. If you would like to discuss the results off list, or would like other resources, feel free to contact me via private message. i don't check in here too often anymore, (my mom is a regular cpaptalker and she alerted me to this thread) and it sounds like others have commented on the difficulty of your journey, so i'm guessing you've been struggling for a while. i'm sorry.

if you want someone to talk with who's been dealing with this for a while, feel free to pm me. there is a forum (much less active than this one) for people with chronic epstein barr infections, too. that address is: http://ebvcommunity.com/forum

be prepared if you are a reactivated case that some doctors will tell you it doesn't exist. this is an ongoing problem. if your doctor is helpful, stick with him/her, do research yourself, and keep trying.

Teitelbaum's book From Fatigued to Fantastic (unfortunate title, but a great resource) gives an outline of various supplements to try and/or to avoid. I have been having some success by taking ATP- D-ribose for smoother energy and Proboost for immune system function. Both of these are suggested in his book, apparently recently recommended in Oprah's September 2009 magazine by Dr. Oz. see: http://www.endfatigue.com/ or this review: http://aboutmecfs.org/Rsrcs/BkReviewFat ... astic.aspx . Teitelbaum is adamant that sleep is the most important healing factor - so he has some strong beliefs about the importance of getting people to sleep. could be useful for plenty of folks here.

best wishes,

Bast

[Wulfman]

Ace,

Glad to hear they found the source of your fatigue. Hope your recovery is quick.


Den

[lazyace]

LazyAce,

My husband was was 47 (in 1992-93) when he got hit with EBV -- he was out of work for six months because he was so fatigued that just getting up to come eat breakfast left him so tired he had to rest before walking back to bed.

His doctor eventually prescribed high-dose B vitamins for him, and I did a batch of research and came up with a nutritional plan for him, and now he's fine. Well, as long as he follows the plan.

Hi Kiralynx,

I'm glad to hear your hubby recovered! It's so confusing because some docs are telling me that EBV recovery is rarely more than two months. Because my infection is either active or very recent, it makes it almost impossible to discern whether this has been the cause for the last seven months, especially if it is true that it only takes two months to recover. I have been reading about cases like your husband's, where folks were down for 6-12 months. Did he ever get vitamin B-12 shots? I have read that some people with EBV have gotten them. I take a multivitamin but maybe that isn't enough?

[Muse-Inc]

I have the good fortune of having two conditions contributing to my severe fatigue: OSA and EBV...concerns me the most is that there is considerable research that connects EBV to both MS and CFS.

wow, LA, no wonder you've been so challenged to make CPAP therapy successful -- I'm sorry. Now, read: http://www.ncbi.nlm.nih.gov/pubmed/17574770 regarding vitamin D status and EBV here's a quote

MS risk is associated with low vitamin D status prior to disease, and Epstein Barr virus (EBV) infection seems to be a prerequisite for MS

I googled "vitamin d "epstein barr" and got 67,000+ hits...happy reading

...CMV (cytomegolavirus)...

This one is killed by adequate amounts of coconut because one of its primary oils is converted to monolaurin by the body which then dissolves the lipid outer layer of the virus destroying it. This works for every single lipid-enveloped virus and there are quite a few of them to which we are susceptible. If you're not familar with Dr. Mary Enig's work, she's the lipid scientist who was blacklisted by big biz for her dedication to getting the word out about how dangerous trans fats are, we can thank her for it on food labels today. This is a great post of one of her talks, this one on coconut that you might find helpful http://www.westonaprice.org/knowyourfat ... t_oil.html
I keep my herpes simplex (cold sores) in hibernation by taking L-Lysine daily and been doing this since I was 17...back in the Dark Ages when I learned that herpes only re-activates in a high-arginine environment and that argine and lysine are antagonist, so when lysine is high arginine is low. 4 days ago I started subbing a protein shake for b'fast and got 2 familiar itchy spots and immediately took 2000 mgms of L-Lysing, found my prescrition Denavir cream (good, still valid), then checked the protein power amino acid breakdown: lysine to arginine ratio is 4:1 so I'm taking enough L-Lysine to make it 6:1 to see if that sends the damned virus back into hibernation. I am also using a whole lot of coconut oil to kill the active virii...herpes is a lipid-enveloped virus.

[lazyace]

...herpes is a lipid-enveloped virus.

Given that EBV is HHV-4, would coconut be effective?

[Muse-Inc]

...Given that EBV is HHV-4, would coconut be effective?

My undoctored opinion would be a big YES. Read that long article by Mary as somewhere in that one I think she talks about the amts need to kill the virus. Coconut oil, gotta be organic to avoid the hexane some mfgs use to separate the oil...BAD, may they all die. I use Spectrum's organic refined for all my cooking (the unrefined tastes like coconut and has a much lower smoke point). I have been known to melt it and add to sour cream dressings. The form you get must melt at 72 degrees or it's been messed with. This fully-saturated (can't turn rancid) oil makes fried/sauteed foods so incredibly yummy...I used to melt and add to brownies, fry potatoes-chicken-fish, now I don't eat carbs but I still saute with it including eggs (half coconut oil, half KerryGod pasture-grazed cow's butter...yum).