CEBV: Do Not Suddenly Stop Taking Vitamins

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Over two weeks ago, I saw my neurologist and she is doing a complete workup from blood work, MRI of brain, cervical and thoracic spine and a lumbar puncture (LP). I must say I was shocked that finally I found a neurologist who was going to step up to the plate.

But due to her doing a LP I thought maybe I should stop taking my vitamins so if something such as the EBV or MS (Multiple Sclerosis) was in the cerebral spinal fluid (CSF) it will show more easily. Really with regards to MS, once you have the O-bands from what I understand is you have it for life (correct me if I’m wrong). But I thought as far as the EBV she was going to check the CSF for EBV levels.

The reason for this is I told her a year ago many of my CSF showed elevations in protein, red blood cells, white blood count and I was low in glucose but I am hypoglycemic which could account for that. I asked her to test for any and everything should could think of that could cause this along with checking for MS and levels of EBV.

So with this in mind I thought I’d stop my vitamins so to get a more accurate reading for the EBV levels. This was the worst decision I could have made. I have been bedridden for over a week due to the various symptoms. I just don’t want to move I hurt so bad and the fatigue is excruciating. After being bedridden a week I decided to restart the vitamins and now I am still trying to recoup. At this point I’d prefer staying in bed all day still … which I have been doing with the exception of this post.

So word to the wise: You may think the vitamins are not doing nothing but they are and if you stop them you will see it is obviously doing something and keeping the CEBV at bay to an extent. Even when taking them I am still fatigued and in pain and have various symptoms but at least I can do small things around the house versus being bedridden. So I have learned my lesson and never again.

For your reference here is the vitamins I am currently taking:

Please be aware if I list 2 links under a vitamin it is for alternative options and convenience for cheaper pricing, do not take both at same time. Do not take all the ones listed simultaneously! Just offering options that I may use in case multivitamins or vitamins are discontinued or sold out.

Most of these vitamins are for assisting the immune system, or antioxidants or helping other areas of the body which EBV could be effecting.

  • Methyl-B12: **1000mcg or 5000mcg 1-2x a day. Helps a little bit of everything. Highly recommended if you are experiencing leg and/or feet pains or have diabetes. This helps to maintain and/or lower glucose to appropriate level. Also, helps with Gout Arthritis by expelling the uric acid out of the body and liver.. I know. Also a must if you have MTHFR.

Jarrow Formulas Methylcobalamin **1000mcg

 

  • ** SmartyPants a multivitamin with high quality forms of each vitamin along with activated forms of B vitamins. I take the recommended dosage daily. I take the women’s formula. I did list the adult formula as well … my son takes that one. The good thing about these vitamins is that they also have fish oil, coq10, vit k and others that are nice. Will thin blood due to fish oil and coq10 in women’s vitamins.

SmartyPants Women’s Complete Gummy Vitamins

SmartyPants Adult Complete Gummy Vitamins

 

  • ** D3: 1x a day

NOW Foods Vitamin D3 5000 Iu

Doctor’s Best Vitamin D3 5000iu

 

  • ** Vitamin C: 1x a day

NOW Vitamin C-1000 Sustained Release

 

  • ** L-Lysine: 1x a day

NOW L-lysine 500 mg

 

  • ** Magnesium (chelated form): 1 a day

Doctor’s Best High Absorption Magnesium

 

  • ** Zinc: 1/2 pill a day

NOW Zinc Gluconate 50mg

 

  • ** Turmeric / Curcumin: 1x a day. Helps with inflammation. Does thin blood. Take with caution. If bleeding or nose bleeds starts quit immediately. Some of the suggested doses on the bottles are high so take minimal amount due to being on blood thinner.

Turmeric Curcumin Complex with Black Pepper

Life Extension Super Bio-curcumin

 

  • **Selenium 1x a day

Selenium 180ct 200mcg

 

  • ** Melatonin for sleep: 1-2x a night

Natrol Melatonin 5 Mg

 

  • ** Epsom salt & baking soda baths:  2-3 soaks a week. I have found taking epsom salt & baking soda baths to be more effective. Epsom salt baths help in expelling toxins / waste out of the body and lymph nodes through the wrists and the bottom of the feet.

Baking soda – big bag 13.5 pounds

Baking soda – big bag  12 pounds from walmart

Epsom salt 8 pounds. walmart has a great price when available

Epsoak Epsom Salt 19.7 pounds

 

  • ** CBD Oil: This helps with a lot of various pains, seizures and helps me sleep better too. You can vape it or get the drops. The following is the most popular sources for buying. Also, keep in mind this is legal in all 50 states. It is cbd oil from hemp.

CW Hemp – everyday  or everyday plus drops. Sign up for newsletter for specials and coupon codes. BTW! Visit the site and register from this link, and we’ll both get rewards points towards future purchases! Create an account now! Awesome!

Cloud9Hemp – for vaping and has various flavors. They have a coupon code for new customers on the home page.

 

  • ** Metamucil and Generic Forms: for irritable bowel syndrome and overall health. 1x every other day. I rotate it out with the probiotics. One day metamucil the next the probiotics then repeat. Helps w/ digestion which is important with EBV.

Equate – Fiber Therapy – Smooth Texture

Equate – Fiber Therapy: Walmart

 

  • ** Probiotics: 1x every other day. Rotate it out with metamucil.

Digestive Enzymes Plus Prebiotics & Probiotic

For other helpful items for making your life easier visit my Products I Use page. At the bottom of the page I list many items I use to help me be more comfortable and have a better quality of life. Big hugs!

Good luck and Stay Strong!

 

 

NIH Trials: Recruiting Now for Chronic Active Epstein Barr Virus

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Hello All! I just was made aware that NIH will be doing trials for Genetic Studies of Chronic Active Epstein-Barr Disease. They are recruiting CAEBV recipients now so please apply if you meet the criteria. I also heard that they have a special living area aka a hotel where you stay free during the trial.

I think this genetic trial testing genetics is a great idea. I still feel the chronic form can be caused by specific genes if exposed to EBV. The genes I think that made us more prone to having the chronic form is Factor V Leiden Mutation and MTHFR plus my mom has Protein C. I’ll share a little story as to why I think this.

Over 20 years ago, I was very bad off. I couldn’t sit up by myself, I could maybe wash 5 dishes at a time, my energy was extremely low. I was very fatigued and I had tons of other symptoms but because I was so fatigued my mom thought maybe it was due to low blood sugar. She has diabetes type 2 so she had a glucose monitor and decided to take my sugar which resulted in being within normal range. Because I had kids she did not want to throw the lance in my trash can (don’t ask me why, she is special).

Later she took her blood sugar as normal and forgot she tested my blood … she ended up using the same lance. Two months later she was fatigued and very bad off like me.

With regards to all the doctors I saw they kept saying I am too young to have a chronic illness. With her, they did a work up and nothing out of the norm showed but then a friend suggested she see a nephrologist because her friend said he found things other doctors didn’t. She went and after numerous tests he said she had CEABV. Which caused her enlarged liver along with the various symptoms.

A month later I went and he confirmed I also had CAEBV. After years of all these doctors and finally a diagnosis that corresponded with my symptoms. I was relieved but yet it was bitter sweet because all they could do was treat the symptoms.

My mom had the fatigue, enlarged liver, sore throat, all over body pain, flu like symptoms but her’s was not as severe as mine when I started with all my symptoms. My symptoms consisted of fatigue, all over body pain, flu like symptoms, headaches or migraines (as the docs stated 😦 ), sore throat, red and sore eyes, ringing in the ears, tachycardia, high bp, nausea/vomiting, diarrhea, visual disturbances, photophobia, vertigo … these are the ones off the top of my head.

20 years later both our symptoms are the same but different. We still have all the same symptoms but my mom’s liver is effected more than mine but yet both our kidneys are effected. I am effected more with balance issues, vertigo, seizures (absent and drop seizures), walking issues (leg doesn’t work so I need to drag it), foot drop, positive romberg sign … just to name a few. She does not have these symptoms.  I also have hypoglycemia and she has diabetes 2 which could be one reason for the difference plus she has the protein C in her genes and I do not but why do I have more extreme symptoms??? I believe there may be other genes at play we are not yet aware of. I am looking into getting other genes checked in the next few months.

Also, to see the latest trials open for new recipients you can visit NIH’s CAEBV Trials page.

For more information on CAEBV you can visit RareDiseases Info page on CAEBV.

Also here are some FaceBook Groups for CEABV you may want to join:

Chronic Active EBV Support Group

CEBV (R & R) Research and Recovery

Good Luck!

 

 

 

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