CEBV, CFS Hibernation … Don’t You Love The Winter Months?

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If you have CEBV … I think you know what I’m talking about. From Late Fall to early Spring my CEBV symptoms get worse especially the fatigue. If I could sleep for weeks on end I probably could with no problem.

Let me know if the these months are worse for you. I think it has to do with how the weather shifts. I am aware that if we are getting a bad storm, snow or rain, my body’s pain intensifies to the point I do not want to move.

When I first came down with CEBV, over 13 years ago, all I could do is lay on the couch. When I say lay on the couch I mean lay completely flat on my back so my whole body could rest. If I did not lay completely flat I could feel my tendons, muscles … pulling in pain. Until I got CEBV I was not aware of these muscles, tendons etc. We all know we have them but to feel the pain feathering out though every tendon, muscle and joint, bones…is pretty bad. At times it feels as though my ribs are going to crush me. My ribs will have a crushing and an electrifying shock just by moving … twisting, breathing, etc.

To make things worse, for me to even get off the couch I had to ask my 3 year old son to help pull me up because my body was so weak I could not sit up on my own. I could not wash dishes…just standing I would get extremely shaky and feel as though I’d collapse. My body was literally losing the battle the EBV was taking over every part of me. I was having all over body pain (muscles, tendons, joints), chest pains, kidney, liver pains and not to mention head pains. I could feel the veins in my head swelling but the mri and cts said I was fine…lol. I could touch my head where the veins were and you could feel the swelling veins but they said nothing was wrong. Visual disturbances, ringing in my ears … photophobia. Seriously in my experience if something is out of the scope of the doctor or they don’t want to bother researching … they won’t. They are useless. I only go to the doctors for basic symptoms that I know is not related to the CEBV but sometimes it takes me a while to realize if it is or not. Because CEBV also causes me nauseous and swelling throat…I drink coffee all day and it seems to help. When I first came down with this I also noticed hostess donuts would help with the nausea. (Just FYI)

The doctors tested me for everything under the sun and only until my mom got it were they able to diagnose it…this was about 6 years later. In the mean time I was diagnosed with secondary symptoms; photophobia, heart problems – my heart would throw in extra beats or skip beats, speed up what ever it wanted to do, hypertension (was put on a beta blocker), my knees needed to be replaced but I did not follow their recommendation for this. I asked them could they tell me what the primary cause was and they said no. I knew if I had my knees replaced it would be a miracle if I made it through the surgery due to how weak I was and that is not even saying that my body would except it. Considering my body was rejecting everything else…I knew it would reject the new knees. To boot at this time in my life I was only 22 years old…how awful is that.  All this by the time I was 22. Life is just beginning and I am done before I even start.

After spending this many years with CEBV my only advice is to seek a competent doctor who is aware of CEBV otherwise your wasting your time. Once you find that doctor they will only be able to treat your secondary symptoms because there is not enough research on CEBV. You simply need to rest and not over due. You may also notice if you do too much activity that you may begin to vomit and get diarrhea…so rest. We have every symptom in the book … just rest.

Accept what you can do and don’t get depressed over what you can’t…this has helped me through.

Some activities that my mom and I do to get me through the day…unfortunately it’s couch potato stuff but be thankful for the internet, facebook, video games, netflix, wordpress – start a journal to get out frustration or daily activities, struggles and don’t worry too much about spelling…be thankful for spellcheck…I am. Smile   Remember it takes  years to build up your resistance to do some of these things. If you are new to CEBV just watch TV flat on your back the rest is for those use to their limits …. just be sure to listen to your body, if it says lay down …lay down … which is pretty much all the time but I am referring to if you go to the bathroom and the room starts spinning or what ever beautiful symptom you may display at that time.

PS if a doctor calls you a hypochondriac…find a new doctor that doctor is a flake for not doing their research. I’ve heard this one before. Doctors say this when they are lazy and don’t want to bother with helping you or do their job. My mom found a great doctor who is an internal med doctor and a liver/kidney/spleen doctor might be able to diagnose you. (Sorry forget the name of specialist hepat….something. LOL. Smile

Good luck and keep in touch.

CAUTION MTHFR dx: NAC Disables Epstein-Barr Virus

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Or so I’ve read from the NIH trials on their website. As per the treatment/protocol for MTHFR (see tab) from the genome project, I began the suggested 600mg of NAC daily but soon realized my pain intensified and my blood pressure rose an additional 20pts daily with use. This may be due to my MTHFR or simply the EBV fighting back. Once I discontinued using NAC my blood pressure slowly returned to normal over the following two weeks.

Many conflicting articles online states that NAC does assist in Chronic Fatigue Syndrome and EBV but for MTHFR sufferers due to the methylation being insufficient may cause a detox reaction to NAC and other gluthiane precursors. Personally, I believe starting NAC at lower doses such as 100mg would assist with detox reactions in MTHFR sufferers.

Previously, I have used NOW FOODS Liver Detox and Rejuvenation without any ill effects even though this product does have the ingredient NAC at 100mg. I cycle with this product and Silymarin 250mg daily…3 days on the Liver Detox and 10 days on Silymarin then repeat. Plus 2-3 Epson Salt baths weekly to assist in detoxing my body of free radicals.

For those starting NAC proceed with caution regardless of your illness. NAC can cause chest pains due to the process of making your heart think it is not having enough oxygen. You may Google how NAC effects your body, it is a somewhat uneasy process.

*Always consult a physician prior to changing your regimen. For informational purposes.

Hello world! Live and Laugh with CEBV, CFS, and MTHFR!

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Daily life, living with chronic Ebstein-Barr Virus, Chronic Fatique Syndrome, MTHFR, Factor V Leiden Mutation and more. This is my journal of my life dealing with the ups and downs of my illness and laughing with my mother who also suffers from CEBV, MTHFR, FVL and CFS. I am actively seeking a cure or remedies to simply assist my mother and I in feeling normal with many trial and errors. Connect with me to follow us as we discover new ways to normalacy through laughter and remedies.