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Old 04-28-2010, 08:04 PM   #1
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Epstein Bar Virus & Fibro

For all that haven't seen my previous posts below is a list of my symptoms. I just received results on a most recent blood test showing that I am positive for active Epstein barr virus. My pain management doctor thinks this isn't all of the reason why I'm hurting so bad, but will be treated w prednisone and vitamin D3.

My question what am I to expect after starting prednisone? IF I do have Fibro how will this affect my symptoms and if there is a positive reaction how long until it goes away?

I've had mono once close to 15 years ago and I know the virus will remain in my body forever, but how long could've this Epstein Barr Virus been active. From my understanding this virus is prior to turning into Mono (am I correct). Could it have been active for months? For years? The only new symptom I've experienced within the past 1-2 months is episodes where I'm unable to stay awake throughout the day.

Any feedback is appreciated.

Symptoms: (starting from head to foot)
- Anxiety
- Depression
- Migraines occur 1-2 times per week lasting 4-8 hours. The migraines are progressive and start with a deep aching pain at the base of the neck and travel behind the ear into the temple, behind the eye, and ends at the top of the skull.
- CONSTANT deep dull aching pain between the shoulder blades & spine that radiates into the shoulder blades and into the top of the shoulders. (Have had for 3+ years).
- Intense burning pain that travels along the perimeter of both shoulder blades.
- Deep dull aching pain primarily in my forearms, wrists/fingers, but sometimes in my biceps.
- CONSTANT mixture of deep dull & sharp stabbing pain in the low back/hip area (apprx 2-3" from the spine right above BOTH hips). (Have had for 1+ year).
- Intense burning pain that radiates into both buttocks cheeks, but sometimes will go further into the left leg.
- Deep dull aching pain in the tailbone.
- Sporadic sciatic-like pain in the left leg.
- Deep dull aching pain in both legs (primarily left thigh, but some times right thigh; knees; calves; ankles). If after sitting for awhile I'll have jabbing electrifying pains in my knees and ankles.
- Sporadically it'll feel like my right side of my lower-back, side, & stomach is on fire if something touches the area; when bathing it feels like my wash cloth is sand paper to my chest.
- Moderate to severe muscle / joint stiffness in the morning
- Pain is worse in the morning (until 11-12) & then worsens in the evening (around 4-5).
- SEVERE fatigue even after sleeping 4-8 hours. (Was prescribed Nuvigil 250 mg, because unable to stay awake during the day. The med helps but at times I have episodes where I have to fight to keep my eyes open).
- Forgetfulness (well not sure if that's a symptom or if it's just me .. lol)
- When talking I can't seem to "find the right word to say" (my wife hates it because sometimes it takes me awhile to finish my sentences / thought)
- Numbness / Tingling in my left foot and toes as well as in my left hand and fingers.
- When standing (after sitting or crouching) I'll have a really bad head rush
- Uncontrollable twitches / jerks in both arms and legs during the day & while sleeping. Any increase in activity causes an increase in the number and severity of twitches I have.
- HORRIBLE nasal allergies & dry eyes (not sure if these are applicable).
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Old 04-29-2010, 05:15 PM   #2
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Wink Re: Epstein Bar Virus & Fibro

Quote:
Originally Posted by F150STX View Post
For all that haven't seen my previous posts below is a list of my symptoms. I just received results on a most recent blood test showing that I am positive for active Epstein barr virus. My pain management doctor thinks this isn't all of the reason why I'm hurting so bad, but will be treated w prednisone and vitamin D3.

My question what am I to expect after starting prednisone? IF I do have Fibro how will this affect my symptoms and if there is a positive reaction how long until it goes away?

I've had mono once close to 15 years ago and I know the virus will remain in my body forever, but how long could've this Epstein Barr Virus been active. From my understanding this virus is prior to turning into Mono (am I correct). Could it have been active for months? For years? The only new symptom I've experienced within the past 1-2 months is episodes where I'm unable to stay awake throughout the day.

Any feedback is appreciated.

Symptoms: (starting from head to foot)
- Anxiety
- Depression
- Migraines occur 1-2 times per week lasting 4-8 hours. The migraines are progressive and start with a deep aching pain at the base of the neck and travel behind the ear into the temple, behind the eye, and ends at the top of the skull.
- CONSTANT deep dull aching pain between the shoulder blades & spine that radiates into the shoulder blades and into the top of the shoulders. (Have had for 3+ years).
- Intense burning pain that travels along the perimeter of both shoulder blades.
- Deep dull aching pain primarily in my forearms, wrists/fingers, but sometimes in my biceps.
- CONSTANT mixture of deep dull & sharp stabbing pain in the low back/hip area (apprx 2-3" from the spine right above BOTH hips). (Have had for 1+ year).
- Intense burning pain that radiates into both buttocks cheeks, but sometimes will go further into the left leg.
- Deep dull aching pain in the tailbone.
- Sporadic sciatic-like pain in the left leg.
- Deep dull aching pain in both legs (primarily left thigh, but some times right thigh; knees; calves; ankles). If after sitting for awhile I'll have jabbing electrifying pains in my knees and ankles.
- Sporadically it'll feel like my right side of my lower-back, side, & stomach is on fire if something touches the area; when bathing it feels like my wash cloth is sand paper to my chest.
- Moderate to severe muscle / joint stiffness in the morning
- Pain is worse in the morning (until 11-12) & then worsens in the evening (around 4-5).
- SEVERE fatigue even after sleeping 4-8 hours. (Was prescribed Nuvigil 250 mg, because unable to stay awake during the day. The med helps but at times I have episodes where I have to fight to keep my eyes open).
- Forgetfulness (well not sure if that's a symptom or if it's just me .. lol)
- When talking I can't seem to "find the right word to say" (my wife hates it because sometimes it takes me awhile to finish my sentences / thought)
- Numbness / Tingling in my left foot and toes as well as in my left hand and fingers.
- When standing (after sitting or crouching) I'll have a really bad head rush
- Uncontrollable twitches / jerks in both arms and legs during the day & while sleeping. Any increase in activity causes an increase in the number and severity of twitches I have.
- HORRIBLE nasal allergies & dry eyes (not sure if these are applicable).

 
Old 04-30-2010, 05:01 PM   #3
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Re: Epstein Bar Virus & Fibro

What a long haul to go through. A vast majority of mono cases (85 percent) are caused by the Epstein-Barr virus. Both of these viruses are members of the herpes family. Just so you know, nearly 90 percent of people over 35 years of age have mono antibodies in their blood, indicating that they have at some poine contracted the disease without even knowing it.

I would suspect the prenisone will help you. Here are some other nutrients that might help you, especially if you like natural cures (with doc's permission):

- acidophilus as directed on label
- proteolytic enzymes as directed on label
- Vitamin A with mixed carotenoids 25,000 IU daily for 2 weeks then slowly reduce to 15,000 IU daily
- vitamin E 400-800 IU daily for 4 weeks then slowly reduce to 400 IU daily (use d-alpha-tocopherol form)
_ vitamin C with bioflavonoids 5,000-10,000 mg daily in divided doses

A diet composed with at least 50 percent raw foods.
Drink 8 eight ounces of distilled water
No coffee, fried foods, processed foods, soft drinks, stimulants, sugar, tear or white flour products as they depress immune function.
If your spleen is enlarged, do not strain when having a BM as it may injure an enlarged spleen.
No aspirin

Once contracted, EBV remains in the body for life, but the ACUTE stage of the illness eventually runs its course in nearly all cases.

Antibiotics are of no use unless there is a secondary injection such as ear infection or strep throat.

Many people who have FMS have a history of injury or some traumatic virus/illness/etc. in their life. The reasong for FMS developing under these conditions is yet unknown at this time.

Take care, get lots of rest!
Kirstee

 
Old 05-02-2010, 07:29 AM   #4
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Re: Epstein Bar Virus & Fibro

Thanks to everyone who has responded. I intend on respond longer, but I've been on vacation for the past week to week and a half and my Internet on my phone isn't that reliable where I'm at. So again thanks for responding!
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Old 05-05-2010, 09:40 PM   #5
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Re: Epstein Bar Virus & Fibro

I saw my pcp and he informed me that after having mono I'll always test positive for the EBV and that it's very difficult to know if the virus is active and pretty much they go by symptoms. If I'm showing signs of mono then good chance it's rearing it's ugly head.

I've started prednisone (day 2) and haven't seen any noticable change in anything yet ..
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Old 05-06-2010, 07:28 AM   #6
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Re: Epstein Bar Virus & Fibro

Hi,
i'm 27 developed glandular fever (mono) at 15, turned into ME/CFS....everytime i was checked for EPV it was in my blood. However, I recovered fully from ME at 20 (was v severely ill bed/wheelchair bound). And when i had another EPV test it had gone out of my system.
Hopefully continued research will get to the bottom of all this and increase understanding! never really understood it myself at least in the past few yrs people realise how serious and debilitating it can be.

Your symptoms are horrid *hugs*. My best piece of advice is just never to overdo it. once i paced myself carefully so there were no major highs or relapses I began to improve. However, sadly each person is different and it was probably 'just my time'.
I do hope you start to improve soon.
with love
xx

 
Old 05-06-2010, 09:00 AM   #7
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Re: Epstein Bar Virus & Fibro

I have been told that if you have mono that it'll always show in your blood work because it is a strain of the herpes virus; just like cold sores or (God forbid) genital herpes. It will lie dormant until your immune system is low and come back and "slap you with it's "pimp hand.""

I am on day 3 of my prednisone and again haven't really noticed anything major. Hopefully if it is active it'll start showing something.
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