Cerefolin

[BuddyLeesWife]

My husband is also starting on Cerefolin. I faxed the information to our doctor's office and he faxed the same information to the pharmacist, neither had yet heard of it. The pharmacy had to order it and is expecting it to arrive any day. The pharmacist was very interested in the literature and surprised my husband by discussing it with him and requesting an update once he has had a chance to try it for a while. I am hoping it works as well for him as it has for the two of you - I'll make sure to post his experience.

My husband's twin is at Mayo today for testing to try and arrive at a diagnosis for him. I always feel that we benefit from whatever testing he undergoes; unfortunately he doesn't seem to benefit from what works for my husband as his symptoms are still not under control.

[WifeofPotsMan]

Lorrell, I was reading your post with much excitement. I was curious though, what prompted your doctor to prescribe this med to you? I didn't know what symptoms you were having that would prompt him to say - hey lets try this. If that's too personal you can tell me to MYOB. I'm good with that. But my husband is extremely sensitive to meds, so when I read that it was a vitamin I'm encouraged that he might not have a reaction. Your results are really encouraging. I'm sure for you as well. Just to be able to lift some of his "brain fog" would be a relief let alone help with the fast heart rate. Please let me know. Thanks in advance.

[KarenLorrel]

Hi WifeofPotsMan!

You ask what symptoms I have that caused Dr.Grubb to write the prescription for Cerefolin...I was telling him how much the Adderall xr was helping. I was excited about teaching more hours...teaching a college course etc....then I said, "I think I can be fix!!" (which I know is not true but I got a little excited about my progress!)

He reminded me that we are all getting older...etc...well, I got a "little" upset and said.."hey, I just raised 6 children and I am ready to do a lot more." (Keep in mind..the Adderall has really helped...this wasn't my life prior to 6 months ago....so I am pretty excited)

The story continues......I thought he had not been listening to me because he was writing...he handed the prescription to me and said,'here, this is very new and is for cognitive impairment." Needless to say I wasn't ready to accept it with a 'thank you.' My husband who was with me....and trying to understand...said, 'You mean for mentally retardation?" Looking back on the whole scene...it is a bit funny. In fact, to us it is really funny because I used to be a special education teacher who taught cognitively impaired children. My husband's reaction really made me laugh.

After the initial shock and knowing that Dr. Grubb is a great doctor...I willing accepted the Cerefolin!! It is a vitamin and has no side effects...used to treat cognitve impairment, dementia, and Parkinsons..if I remember correctly.

Dr. Grubb explained that it is folate acid...predigested and combined with other vitamins so it can be absorbed in the brain...etc. I believe it has caused 'something' inside my brain to produce whatever is necessary to keep my heart regulated and in turn my stamina has improved.

So...for me...it helped to stop the irregualr heart beats which was causing chronic fatigue. It may help someone else regulate another part of the ANS system.

I think I have already mentioned it, but for me the brain fog (extreme) was cleared up when I started daily b-12 shots..a specially compounded type. This was prescribed by another doctor based on a chronic fatigue syndrome treatment protacol. I have been on b-12 for about 9 months. Dr. Grubb said it was fine to continue.

I hope this long story to your answer helped....I hope you find something that helps your husband and if it is vitamins..even better!!

Take care, Lorrell

[Sue]

Hi

I also was put on cerefolin per Dr. Grubb, for me it was to help with the "day long exhaustion" I feel much better, not completely but enuf I can tell the difference!!!

Sye

[BuddyLeesWife]

My husband has been taking Cerefolin for one week now and has noticed that he is feeling more AWAKE! He even had one evening where he was called out for a problem at work in the middle of the night, something that would usually exhaust him for a few days until he could catch up on rest, but this time he didn't miss a beat

I was trying to find out why folic acid would help with brain fog/fatigue and this is one statement that makes some sense:

Folic acid, one of the B vitamins, is necessary for synthesis of nucleotides (which are the building blocks of DNA). A deficiency of DNA synthesis can most easily be seen in rapidly-dividing cells, such as immature red blood cells. Red blood cells that are formed in the presence of insufficient folic acid have shortened life spans, are larger than normal, and have reduced ability to carry oxygen. (http://www.nlm.nih.gov/medlineplus/ency/article/003686.htm).

I'll be intrested to hear your ongoing experiences with this supplement - I really hope it keeps working.

[KarenLorrel]

Great news!! I am sincerely happy for you and your husband! I pray for continued improvement!!

It doesn't have a punch..rather a gentle sustaining effect...for me anyway.

It is as if it 'completes' a process...an necessary ingredient to a 'recipe.'

Our chemistry is so complex and mind boggling...and everyone is so unique which is exciting, however it makes us difficult to 'fix.'

Someday there will be a computer to hook us up to and it will tell us exactly what is missing! (According to Dr. Grubb, at his lecture at DYNAKIDS camp, there is a prototype PET scan made by Toshiba that will be able to do tell us exactily what is missing...currently in Japan. Interesting!

On a personal note, I think the fact that the folate acid is 'predigested' helps my brain to absorb it more efficiently...I even have to take liquid multi-vitamins due the seemingly improvement in the ability for my body to absorb supplements.

Again, let's keep in contact! Hearing your good news made my day!!

Lorrell

[Sue]

I so volunteer to go first with the PET Scan.

Sue

[futurehope]

Lorrell, What is the dosage of the Cerefolin you're taking and how often per day? Is insurance covering it? I will be mentioning the drug to my neuro. Thanks.

[KarenLorrel]

Hi FutureHope....I looked on the information for the Cerefolin and could not find a dosage...I think because it is not a medicine but is describes a 'medical food for the dietary mangement of hypethomocysteinemia'...it is considered a TABLET..so no dosage.

I just divide the 'vitamin' in half.

The information sample reads:

Active Ingredients:

L-methylfolate (metafolin) 5.635mg

Riboflavin (B2) 5 mg

Pyridoxine (B6) 50 mg

Cyanocobalamin (B-12) 1mg

My insurance covered it.

SUE....in regards to the PET SCAN..."I"ll raise 'ya!!"

[BuddyLeesWife]

Thought I would post an update. It's been 2 1/2 weeks and my husband is doing great with the Cerefolin. One day last week he complained of a headache and I thought, oh no...but it was just an isolated case and he has not had another. It has not had any sort of super-charged effect on him, he has just noticed that he is much less tired than he has been and enough of a positive effect that he suggested to his brother that he give it a try. He takes 1 tablet in the AM.

[Sue]

BuddyLeesWife

Great news for your husband, hoping he has continueing energy with this. I can already feel the "lack of" since coming off, I just couldn't handle the headaches. But they are now gone..

Best wishes

Sue

[edntx]

Hi everyone,

I happen to run into this site and was it was interesting to see the topic of Cerefolin. I am a pharmaceutical rep for the company that represents and distributes Cerefolin and I sample Cerefolin to doctors offices. If there is any information and input you would all like to know, just let me know. It comforting and amazing to read the stories on here! Good to know we are making a difference in peoples lives. Hope to hear from you all!

Eddie

[futurehope]

Edntx, Please list the ingredients, the pharmaceutical company, the dosage schedule (if there is one), possible side effects and current recommended uses. If there is a website with this info, direct me. Also, how long has this been on the market offered to the public and is there any research as to its safety or uses? Thank you

[KarenLorrel]

Eddie,

It has given me sustained focus and stamina. It seems to help my body work more efficiently...I compare it to a car needing premium gas to operator optimally.

The only symptoms I am having since taking it...one time a day is a mild headache and recently some tingling sensations in my legs and feet (this may be due to increased activity...blood sugar..etc...I am having blood work done on Monday) But, as a drug rep you may want to know. I also think it may be due to one of the B vitamins in it...I was reading the possible side effects on the back of the sample from the doctor.

I take one in the morning...now I am taking half.

After blood test...ruling out other things then I will look at the Cerafolin. So, far I like the positive effects it is having.

I will keep you posted.

Lorrell

[bunch]

Can someone help me. My neurologist put me on Cerefolin about a month ago. Really I'm not sure why. After reading post from other people I'm really puzzled. I did complain of some fatigue. I was also recently diagnosised with Myasthenia Gravis. Before that I did wonder if I had suffered a mild stroke due to some mental confussion although I never mentioned that to my doctor. He said my blood test showed low levels of b12 and prescribed Cerefolin. I am thinking that was due to the fatigue which also goes along with Myasthenia Gravis (MG). I know on my next visit I need to talk to my doctor more about the low b12 levels. I mainly concentrated on the MG though.

I was wondering if you all take your Cerefolin in the morning or at night. Does it make a difference? I would appreciate any info. Thanks!

[Jersey Girl]

Lorell, I would be interested to know how much and what type of compounded B-12 injections you are taking and where they are compounded. Thanks for sharing about the Cerefolin.

[KarenLorrel]

Hi Bunch,

When I was given Cerefolin the doctor said it was for 'cognitive impairment." He was trying to help with mental clarity. I read on the sample package that it was developed to treat dementia, parkinson's and cognitive impairment.

Since it is predigested folic acid with vitamin b vitamins I thought it was worth a try. Hopefully it would improve my ability to THINK! But what I have found it has helped me with stamina..not energy...I have also noticed that I do not have many tac problems. I think it has helped my body to operate more efficiently.

I hope it helps you in some way too!

Regards.

Lorrell

[beala]

Our insurance denied covering the cerefolin. Has anyone else had trouble with this ? I believe we can file an appeal but not sure how to word it. Any suggestions~ Thanks

[Sue]

Beala

Yes you can file an appeal. Along with your appeal have your doctors office write out exactly why you need this medication and what they are hoping it will do for you, hopefully they will understand and approve your script.

Good luck

Sue