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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Update: MTHFR Protocol and Affects on Diabetes

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Since finding the MTHFR Protocol I have been taking the methyl-B12 (20mg daily) and methyl-folate (3200 daily). I have found that I have increased energy…very little though. I am still in the stage of adjusting these doses to get the maximum benefits. I believe if it wasn’t for the chronic fatigue syndrome (cfs) and chronic epstein barr virus (CEBV) these doses would be very beneficial for the MTHFR.

As a side note, my mom has the same conditions plus diabetes. Before giving her the methyl-B12 and methyl-folate she would have pains in her legs which made her dread walking also her sugar levels were out of control plus her good and bad cholesterol levels were at war with each other…HIGH! The doctors tried and tried time and again to control these factors with no success. With the MTHFR and especially the CEBV irritating these levels one moment her sugar levels would be an 8 and the next 320 – her levels would be erratic. She also has a history of multiple mini-strokes and a fatty liver/non-alcoholic liver. Once I researched the MTHFR protocol further along side of clinical trials then I placed her on a regimen of vitamins.

This is the vitamin regimen she is currently on;

Methyl-B12 (5000mcg 2x daily): This proved to relieve the leg pains 90% when she misses a dose the pain rapidly returns. The protocol also stated that the methyl-B12 would assist / normalize the management of sugar levels and cholesterol…along side the methy-folate. Brand I prefer is WonderLabs Methyl-B12 and Jarrows is another good alternative.

Methyl-Folate (1600mg 2x daily): This was taken with the methyl-B12 for the most benefits. Research has shown that the majority of B12 deficiencies stem from a folic acid deficiency.

P5P (25mg 2x daily): This in combination with the above vitamins has proved in clinical trials to greatly reduce strokes at 50mg a day.

Basic B Complex by Thorne Research (1x daily): Taking a B complex is important in case there is other deficiencies. If there are other deficiencies within your B complex for example B6 then the B12 will try to compensate for this deficiency. This specific brand of B Complex are all active forms of the B supplements.

Now Foods Spectrum Multi-Mineral (2x daily): Further support for B supplements. While using the B vitamins it may deplete your iron, potassium and others.

Silymarin WonderLabs (1 daily for 2 weeks than 1 every other day): Further research has shown this reduces liver inflammation and rids the liver of toxins thus improving liver function. I alternate this, once a month with Now Foods Liver detox-rejuvenator. This also assists with clearing out toxins in the kidney and lymph nodes. She takes the Liver detox for 1-2 weeks then switches back to the silymarin.

With the above vitamin regimen after 2 months she has expressed that her vision is more defined, her legs no longer hurt (as long as she continues taking the B12), her doctor has checked her good/bad cholesterol levels and they were well within the normal range … which made her extremely happy that it is under control. Her doctor also reported that her sugar levels were normal and liver and kidney function tests have vastly improved. She has also tested her sugar on a daily basis since starting the above regimen and has noticed no erratic fluctuations….so everything seems to be working wonderfully. Plus in addition to the positive outcomes of the tests, she was also taken off of 2 diabetic meds.

Taking the above regimen she has also noticed more energy but just enough to stay awake about 2 hours longer than her norm. (Of course this is due to the CEBV).

***Please consult a doctor prior to making any changes to your regimen. This is for my reference/journal and is for informational purposes only.***