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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Cerebral Spinal Fluid (CSF) from Lumbar Puncture (LP) & My Results? WTF!

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As I said in a previous post, I was in the hospital last year from April 21st to July 3rd 2016 for a chiari 1 malformation decompression surgery. All went well during the surgery they stated that once they tested my flow within the brain after cutting the hole in my head that the CSF fluid was not flowing properly and that they had to remove some webbing so they did. However, after surgery I came down with an infection which they could not discover what it was then shortly later I also had chemical meningitis from the dura patch. (I will write a separate blog post on my experience and the craziness that ensued later) However because of the infection and the chemical meningitis they were taking CSF fluid via lumbar puncture every 3-7 days. The last two has raised some concerns for me.

On June 6th 2016 my CSF LP Results. Values in Brackets [ ] are normal values. Keep in mind I still had a touch of chemical meningitis at this point … which are lower than previous values from other CSF LP results. Also, keep in mind my CSF glucose can be low because I am hypoglycemic. I am just posting those that are a concern for me which raises questions … big ones:

  • Appearance CSF: Slightly Cloudy * ABN * (due to meningitis)
  • RBC CSF [0-1 /mm3]: 0
  • WBC CSF [0-5 /mm3]: 228 *HI*
  • Glucose CSF [40-70 mg/dL]: 30 *LO*
  • Protein CSF [12-60 mg/dL]: 92 *HI*

On June 23rd 2016 my CSF LP Results. At this point my chemical meningitis has resolved but compared to the results above they show something else is going on which I still have high values or even higher than the previous results. I was released from the hospital on July 3rd 2016. So I was released with the following values. On July 1st I had another surgery for chiari 1 malformation to repair the dura due to a CSF leak also. Maybe this could account for the high values but they did not do another LP so I am not sure but I doubt it is due to that.

  • Appearance CSF: Clear (meningitis resolved)
  • RBC CSF [0-1 /mm3]: 16 *HI*
  • WBC CSF [0-5 /mm3]: 502 *HI*
  • Glucose CSF [40-70 mg/dL]: 25 *LO*
  • Protein CSF [12-60 mg/dL]: 145 *HI*

So the questions are: Is this due to CEBV? Or is it due to something else?

With all my crazy symptoms which may or may not be related to CEBV or MS or Lupus … I seriously need a new LP to rule in/out other conditions that may be coming into play.

Has anyone else had similar results and if Yes … is it just CEBV or something else? Thank you and big hugs to all.

Also, if you are seeking information on CSF results click on the tab above for “Articles” it has many resources for LP Results. Good Luck!

UPDATE: From what I understand from various MS groups and resources is that you can have the above to due MS … with regards to EBV is still questionable. Resources below:

  1. http://www.healthline.com/health/csf-total-protein#overview1
  2. http://www.healthline.com/health/csf-cell-count#understanding-your-results7

I will update with a new post once I have completed a new LP to rule in/out MS and CEBV effecting the CSF results.


 

Actual Resources and Page Content:

  1. http://www.healthline.com/health/csf-total-protein#overview1

What Is a Cerebrospinal Fluid Protein Test?
Cerebrospinal fluid (CSF) is a clear bodily fluid that cushions and protects your brain and spinal cord. A CSF protein test involves taking a fluid sample from your spinal column using a needle. This procedure is known as a lumbar puncture or spinal tap.

The CSF protein test determines if there’s too much or too little protein in your CSF. Test results that indicate your protein level is higher or lower than normal can help your doctor diagnose a range of conditions. Another use for a CSF protein test is to check the amount of pressure in your spinal fluid.

USES

Why Do I Need a Cerebrospinal Fluid Protein Test?
Your doctor will order a CSF protein test if they suspect you have a central nervous system disease such as multiple sclerosis (MS) or an infectious condition such as meningitis. CSF protein tests are also helpful when looking for signs of injury, bleeding in the spinal fluid, or vasculitis.

High levels of protein in your CSF can indicate:

aseptic meningitis
bacterial meningitis
brain abscess
brain tumor
cerebral hemorrhage
epilepsy
MS
neurosyphilis
Acute alcoholism is another possible cause of high protein levels.

Low levels of protein in your CSF could mean your body is leaking cerebrospinal fluid. This could be due to a traumatic injury such as head trauma or a stabbing.

 

2. http://www.healthline.com/health/csf-cell-count#understanding-your-results7

Understanding your test results
CSF cell count
Normally, there are no RBCs in the cerebrospinal fluid, and there should be no more than five WBCs per cubic millimeter of CSF.

If your fluid contains RBCs, this may indicate bleeding. It is also possible that you had a traumatic tap (blood leaked into the fluid sample during collection). If you had more than one vial collected during your lumbar puncture, these will be checked for RBC to test the bleeding diagnosis.

A high WBC count may indicate infection, inflammation, or bleeding. The associated conditions may include:

intracranial hemorrhage (bleeding in the skull)
meningitis
tumor
abscess
multiple sclerosis
stroke
Differential cell count
Normal results mean that normal cell counts were found, and the counts and ratios of the various types of white blood cells were within normal range. No foreign cells were found.

Increases, however slight, in your WBC counts may indicate certain kinds of infection or disease. For example, a viral or fungal infection may cause you to have more lymphocytes.

The presence of abnormal cells may indicate cancerous tumors.

FOLLOW-UP

Post-test follow-up
If abnormalities are found by the CSF cell count and differential cell count, further tests may be needed. Appropriate treatment will be provided based on the condition that is found to be causing your symptoms.

If test results suggest bacterial meningitis, it is a medical emergency. Prompt treatment is essential. The doctor may put you on broad-spectrum antibiotics while conducting additional tests to find the exact cause of the infection.

Giggle Time: Chiari 1 Malformation or CEBV or Something Else?

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When odd things happen to me I just laugh them off and so does my family. Laughter is the best medicine when dealing with chronic illnesses. I am going to share something which is short and sweet but really funny. I, however, am not sure what condition this is related too. I do believe EBV can cause more severe symptoms than reported. At this point in my life I have had CEBV (chronic ebstein barr virus) for over 20 years.

Well let’s get to my funny. One night I was preparing everything for bed which I have a certain routine. After I got my youngest son to bed, I proceeded to turn the lights off which due to a positive romberg sign I need light so I work from the front to the back of the house towards my bedroom. But one special night my son turned off the hallway light and I thought I was good because my oldest son’s light was on … I could see fine then all of a sudden he hit the light switch to his bedroom off. Suddenly I bounced off the hallway wall and quickly returned to my normal standing position. I was like “what the hell just happened?” LOL. My son quickly turned back on his bedroom light and said “are you okay?” He asked what happened? All he heard was a loud thud. LOL.

The take away lesson is never trust others to leave their lights on for you … LOL. Just teasing. Needless to say my son now always leaves the lights on and always allows me to turn every light off for my stability. This happened several years ago and since then my balance and the dark has worsened so due to this I have night lights in the bathrooms, I keep my bedroom tv on all night to light the room in case I need to get up and I have special lights throughout the house to light my way through the night. They are motion activated lights and they are a life savor.

Good luck and Stay Strong!

 

CEBV and The MS Hug … Ribs Squeezing Pain

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The MS Hug, not just for MS (Multiple Sclerosis). 

Do you sometimes feel as though a gorilla is giving you a huge hug around your rib cage and the result is PAIN! Yes, that is the MS Hug. You may experience this pain around your entire rib cage or just part of your rib cage.

Here is an excerpt from About.com on MS Hugs:
http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

How Common is the “MS Hug?”

This is hard to say. Up to 75% of people with MS will experience pain as a symptom, but statistics on the MS hug are difficult to find.

What Causes the “MS Hug?”

It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?

Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

  • As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
  • Focused in one small area (usually on one side or in the back) or go all the way around the torso
  • Worse when fatigued or stressed
  • Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
  • Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure

How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack.

Hope you find this helpful. I was experiencing the MS Hug for years so I thought you may find this helpful if you are experiencing the same pains.

Side notes: you may still experience MS Hugs without having MS. It’s called Costochondritis.

How to Get Relief from the MS Hug aka Costochondritis!

The best way I have found to  calm it down is with ice packs (I prefer the gel kind) on the breastbone and upper back following the spine downwards. This is the best way I have discovered to relieve it quicker. You can also take one or two of your muscle relaxants such as; gabapentin, valium, flexeril, robaxin … whatever meds you have to assist the process but ice packs is a given with it or you will be waiting a lot longer for it to subside.

Good Luck and Big Hugs! Stay Strong!

UPDATE! As of 2017, I recently was made aware that fibromyalgia can also cause costochondritis … just FYI.

 

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.

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.***

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