Cerefolin

[KarenLorrel]

On Tuesday I was put on Cerefolin which is very new on the market. It is a vitamin supplement that feeds the brain. It is used for mild cognitive problems, dementia, and Parkinson's disease. It is classified as a 'vitamin' but must be given under the supervision of a medical doctor.

It allows the folic acid to be transfered into the brain. My understandins if the it is predigested( synthetic folic acid) combined with a form of b-12 and something else I am not familiar with with permits the folic acid to transfer into the brain.

I think this helps explain why I have had such great success with daily B-12 shots....cleared up my brain fog..and aches and pains. I have been on these for 9 months. The folic acid must be something my brain needed to begin the complex process of regulating and balancing the ANS system. (my theory)

The day after taking it I noticed that I had not had one episode of rapid heart beat and my dizziness was greatly improved. It was almost 'spooky.' The seond day..was the same. Today will be the third day and so far...no rapid heart beat...feel rather normal...although I am not sure what 'normal' is anymore. But, it is for sure that I am not have any unusually heart racing or blood pressure changes.

I am also taking Adderall xr 25 mg in the morning which has been incredibly wonderful..yet I was still have blood pressure changes and dizziness but I was able to be much more acitve. By adding the Cerefolin...I am feeling pretty darn good! I realize it is only the 4th day but I wanted to share this information with all of youl

I will keep you posted!

Lorrell

[dizzy]

Please keep us posted. I find this interesting because I have high folate levels on blood test. I wonder if the folate is not getting into the brain to work and therefore I have high levels in my blood ??? who knows?

I noticed a few weeks ago someone else posted they had high folate levels also.

Dizziness and brain fog are my worst symptoms.

Thanks for the info,

Susan

[KarenLorrel]

Dizzy...interesting....observation...I will keep you posted..Lorrell

[Michelle Sawicki]

Hi Lorrell!

Thanks for posting about this; I had never heard of it before. Taking a B-complex has really helped me in the past. Unfortunately I now have stomach issues and have to be careful about taking vitamins. The salt tablets just kill me, but I can still drink pedialyte.

Please keep us updated on your progress with this vitamin. I find it interesting.

Michelle

[KarenLorrel]

Hi Michelle...Dr. Grubb recommended the supplement..so this will be interesting. I respect his knowledge and wisdom. I keep checking back to see if anyone else is on it.

I just got back from Pilates inwhich she had me up and down..which is usually NOT the case because I get so dizzy...but I did not get dizzy. My heart rate went up but seemed appropriate to the exertion level. I am not experiencing any high or low blood pressure changes.

I also take b-12shots....b-complex and magnesium/calcium and zinc(together) and Adderall XR. I have noticed since I started the Adderall XR, which was 3 months ago my body temperature is regulated. I have always been so cold or intolerant of heat. Interesting!

I'll keep you posted.

[Guest veryblue]

how is this working for you lorell?

[KarenLorrel]

very blue...

Great! I have not had any tachycardia episodes....it is really exciting...I am even walking up and down steps and not having any reaction. I do work to keep my head up so that helps too.

Interesting...I will celebrate after 2 weeks.

This is almost exciting...will keep you posted!

[michiganjan]

Lorell,

how much crefolin are you taking and do you buy it over the counter or is it prescription?

I am so glad you are doing better

Michigan Jan

[dizzy]

If you don't mind - how much does it cost?

[KarenLorrel]

Hi Dizzy...it is by prescription(Cerefolin) and I pay a co-fee and I am sorry to say I didn't look to see how much it cost. I usually do.

FYI...my brain fog cleared up when I started giving myself B-12 shots everyday..intramuscular shot..a compounded B-12 formula. Early I had been diagnosed with CFS at the University or Michigan...I research treatment plans and found a Dr. Cheney in North Carolina who is a guru in CFS and it was one of his treatment plans. Within a few days my brain fog cleared and the aches and pains that were constant were gone and that has been 9 months. (I have been trying various treatment plans for 10 years)

Interesting tid-bit...this form of B-12 can act as a detoxin.

There is a form of B-12 in the Cerefolin too...interesting..huh!!

I am not cured but definitely operating better. I have been under a lot of stress the last 2 days and my symptoms have not gone out of control as they normally would have....I have not slept well and am tired but can still functioning...still clear thinking....went to Pilates....no dizziness....no tacycardia....I did take a nap around 4:00. This is improvement for me...in fact, amazing for me!

I'll keep you posted.

[BuddyLeesWife]

I think this article gives a good explanation of the role of Folid Acid and B12.

Folic acid with or without vitamin B12 for cognition and dementia

Updated: 04/01/2004

A substantive amendment to this systematic review was last made on 25 July 2003. Cochrane reviews are regularly checked and updated if necessary.

Background: Folates are vitamins essential to the development of the central nervous system. Insufficient folate activity at the time of conception and early pregnancy can result in congenital neural tube defects. In adult life folate deficiency has been known for decades to produce a characteristic form of anaemia ("megaloblastic"). More recently degrees of folate inadequacy, not severe enough to produce anaemia, have been found to be associated with high blood levels of the amino acid homocysteine. Elevated blood levels of homocysteine have been linked with the risk of arterial disease, dementia and Alzheimer's disease. Such degrees of folate inadequacy can arise because of insufficient folates in the diet or because of inefficient absorption or metabolic utilization of folates due to genetic variations. Conventional criteria for diagnosing folate deficiency may be inadequate for identifying people capable of benefiting from dietary supplementation. There is therefore interest in whether dietary supplements of folic acid (an artificial chemical analogue of naturally occurring folates) can improve cognitive function of people at risk of cognitive decline associated with ageing or dementia, whether by affecting homocysteine metabolism or through other mechanisms. There is a risk that if folic acid is given to people who have undiagnosed deficiency of vitamin B12 it may lead to neurological damage. Vitamin B12 deficiency produces an anaemia identical to that of folate deficiency but also causes irreversible damage to the central and peripheral nervous systems. Folic acid will correct the anaemia of vitamin B12 deficiency and so delay diagnosis but will not prevent progression to neurological damage. For this reason trials of folic acid supplements may involve simultaneous administration of vitamin B12. Apparent benefit from folic acid given in the combination would therefore need to be "corrected" for any effect of vitamin B12 alone. A separate Cochrane review of vitamin B12 and cognitive function has been published (Malouf 2003).

http://www.medscape.com/viewarticle/477429?src=search

[KarenLorrel]

Hi BuddyLeesWife,

Thank you for all the information and the link!

Another interesting point is that the folic acid in this supplement is 'predigested,' which is suppose to help the tranference into the brain too.

Again, thank you for the information link.

Lorrell

[KarenLorrel]

Just read the article on folic acid and b-12..interesting...as the study indicates...there needs to be further studies in the future.

From my limited experience B-12 shots have made a hugh difference in my case and the Cerefolin is helping with the tachycardia symptoms.

It is too early to tell...I will not celebrate for a while.

I still have mild tachycardia symptoms but nothing like I did...exhausted me.

As I see it...it must be causing something in my body to respond 'appropriately.'

Only time will tell!

This morning I took a dance lesson and learned to Cha-cha..even learn to turn...didn't get dizzy. Pretty good...on my feet for one hour...remembering dance steps...and making turns. THis is a fair cry from too exhausted to put my tennis shoes on! Aching...couldn't concentrate...focus or even read...among 100 other symptoms!

Each step seems monumental to me!!

Wish me luck

[BuddyLeesWife]

When we saw Dr. Grubb this past April, he told my husband to take folic acid (1 mg or 1000mcg) a day. He also said you need to take the B-vitamins at the same time to work with the folic acid and that a multiple with B-complex should be fine. He said that while studies on vitamin supplements tend to show differing results, the studies on folic acid have ALL been positive and that there is "overwhelming evidence" of its benefit. He told me to take the same thing so we have both been doing so. My husband takes a good multi-vitamin, 800 mcg. of folic acid and a B-12 (sublingual). I am going to ask his doctor about the Cerefolin because as you noted, the folic acid is supposed to be more available to the brain.

Somewhere I have a study that shows that the sublingual form of B-12 is an effective alternative for B-12 shots but I need to locate it.

Thanks for sharing the information and keep us posted on your improvements (and your dance moves!)

[BuddyLeesWife]

Vitamin B12 Deficiency

ROBERT C. OH, CPT, MC, USA, U.S. Army Health Clinic, Darmstadt, Germany

DAVID L. BROWN, MAJ, MC, USA,Madigan Army Medical Center, Fort Lewis,Washington

http://www.aafp.org/afp/20030301/979.html

Oral vs. Parenteral Therapy

Because most clinicians are generally

unaware that oral vitamin B12 therapy is effective,

17 the traditional treatment for B12 deficiency

has been intramuscular injections.

However, since as early as 1968, oral vitamin

B12 has been shown to have an efficacy equal

to that of injections in the treatment of pernicious

anemia and other B12 deficiency

states.

Schedule for Vitamin B12 Therapy

Route of

administration Initial dosage Maintenance dosage

Oral 1,000 to 2,000 mcg per day 1,000 mcg per day for life

for one to two weeks

Intramuscular 100 to 1,000 mcg every day 100 to 1,000 mcg every one

or every other day for one to three months

to two weeks

[KarenLorrel]

Hi!

Thanks for the link. I will read it!

The Cerefolin is very new on the market so that is probably why Dr. Grubb didn't mention it. Dr. Grubb said the pharmacist might not be aware of it yet. It has really helped with the rapid heart beat...which exhausts me! It seems as it my body is beginning to work in harmony. (when the meds wear off by 10:0pm...I have some trouble but nothing that I can't manage)

As far as the B-12 shots...that is something started by another doctor....it was a treatment plan recommended by Dr. Cheney who is a CFS specialist. I had tried the sublingual but did not have this kind of results. Perhaps now that I am doing better I could try it again. When I mentioned the shots to Dr. Grubb he said it would be okay to continue. My b-12 levels have always been normal...always tested normal... but when I doubled my 'normal' level I felt SO much better.

Another tip that I got was to keep my head up as I get up from a chair or walk up or down the steps...I naturally look down and then up and get very dizzy and have a rapid heart beat. The techniques as been very helpful!

I have heard, but dont' know it it is true, but the 'normal' range for b-12 in Japan is 2 times what our doctor's/labs considerate normal. I am looking for research to support this.

Since I am doing so well with the b-12...I also take a b-complex and magnesium supplement...I will continue. My switch to another form as time goes on.

Take care! Next dance is the Rhumba

[briarrose]

I didn't find what you are looking for but this is an interesting article

http://www.diabeticneuropathy.org/deficiency.htm

http://www.nobel.se/medicine/articles/carpenter/

http://www.betsyhealth.com/oct03.htm

http://www.sierratimes.com/archive/sthealt...arleftm0101.htm

Vitamin B12 deficiency has another effect on the heart as well. Turkish researchers recently reported that people with megalobastic anemia have abnormal electrical conductivity of the heart. The problem originates in the nerves that control heart rate. When the anemic volunteers took supplemental B12, heart rate returned to normal.

[briarrose]

This is interesting

http://www.cerefolin.com/

[goldicedance]

Any concern that cerefolin might permanently exclude you from long term insurance--given its use for Alzheimers. Ha, ha...with our problems how could we get or afford long term care insurance.

Goldie

[Sue]

Hi Lorrell

I started on the Cerefolin today. It actually took my pharmacy a few days to get a hold of it. I talked to the pharmacist for quite awhile, he didn't seem to have any concerns over the vitamin supplement, and is actually hoping it may give me some relief from being so exhausted My hopes exactly!! Well wish me luck we'll see what happens in the next few days, not ready for no cha cha's!! not yet anyways.

Sue

[KarenLorrel]

Hi Sue!

Just got back from a camping trip and was wondering how you are doing on the Cerefolin?

Lorrell

[Sue]

Hi Lorrell,

Well I am definately noticeing I have more energy. But hasn't helped with the dizzyness. I will take anything I can get I managed to keep up with my family all day yesterday, my husband was impressed. We just worked around the yard, barbequed, went in the pool, Family stuff. But I didn't have to go in for my naps like usually

[KarenLorrel]

Hey Sue!

FANTASTIC!! Ready to Rhumba?

I am having about the same....doesn't help with my dizziness. Really help control my tachycardia.

I am using the technique of keeping my head up as I get up and down AND when I go up and down steps...this strategy has been a God send...via Dr. Ken Davis who Dr. Grubb referred me to...he is a clinical psychologist who specializes in chronic illnesses. I wanted him to help me with techniques such as how to handle dizziness etc...he watched how I got up from a chair and from the floor and told me what I was doing to cause the blood pressure to change....he showed me several techniques that really have helped!

We are discussing Dr. Grubb's book next time..and helping me to understand a more about POTS...then I can deal with how to handle it better...that's my basic nature....high need to understand..and this is a perplexing disorder!!

I am so glad to hear you had some good days....the 'vitamin' has been good for me too...hurray for you.

Will you be at DYNAKIDS camp tomorrow?

Again, I am so happy for you!

Karen

[Sue]

We were definately attending but had some family problems, My father had a stroke and is paralyzed on his right side, my mom is his sole care giver but at the moment she is ill and needs a hip and knee replacement. So even though I can't help much I am still going over even just to keep her and my dad company. I was really looking forward to attending but will just have to settle for next year. you sound so much like me. I have to understand everything.

Please let me know how it goes if you are attending.

Take care

Sue

[KarenLorrel]

Sue,

I am sorry to heard about you dad. I am sure they will appreciate you being with them....it has to be a difficult time for all of you.

My husband and I are going to the camp...looking forward to learning more.

I will let you know if there is something particularly interesting.

I dropped off magazines and books at Dr. Grubb's clinic today...hoping to give the kids something to read while they are waiting for their appointments.

Take care...you have my thoughts and prayers.

Karen "Lorrell"