SAO PAULO, BRAZIL. One of the key features of Parkinson's disease (PD) is loss of motor control, that is, difficulty in walking and moving muscles as instructed by the brain; even turning over in bed can become increasingly difficult as PD progresses. The degree of motor function in a PD patient is often evaluated using the Hoehn and Yahr scale where 0% means that the patient requires assistance just to stand up while 100% means that the patient has full, normal motor control.

Researchers at the University of Sao Paulo now report that supplementing with riboflavin (vitamin-B2) and avoiding all red meat can markedly improve motor function in PD patients. Their study involved 31 PD patients and 10 dementia patients with no PD symptoms. Blood analysis showed that all 31 PD patients were deficient in riboflavin while only 3 of the 10 dementia patients exhibited a deficiency. The researchers also observed that the intake of red meat among the PD patients (2044 grams/week) was almost 3 times higher than that of 19 healthy random controls matched for age and similar social and cultural backgrounds (789 grams/week).

Other research has shown that a low riboflavin status is found in about 10-15% of the population and is associated with low activities of two important enzymes, erythrocyte glutathione reductase (EGR) and pyridoxin(pyridoxamine)-phosphate oxidase. Low EGR activity may be associated with the glutathione depletion and impaired antioxidant defense observed in PD patients even before their disease becomes clinically evident. Glutathione depletion would be particularly deleterious if accompanied by a high heme iron intake from red meat.

Based on the above theoretical considerations the researchers decided to supplement the PD patients with 30 mg of riboflavin every 8 hours while at the same time removing all red meat from their diet. The results were quite astounding. After just 3 months motor function had improved markedly and after 6 months the average motor capacity (Hoehn and Yahr scale) had increased from 44% to 71%. The treated patients also reported better sleep at night, improved reasoning, higher motivation, and reduced depression after as little as 2 weeks of treatment. Some very disabled patients were able to change body positions in bed as early as on the third day of treatment.

The riboflavin level in the treated patients increased from 106 ng/mL prior to treatment to 179 ng/mL after 1 month. Withholding riboflavin supplementation for a few days did not reverse the observed improvements indicating that some beneficial permanent changes had occurred due to the supplementation and total avoidance of red meat. The researchers conclude that riboflavin supplementation and red meat avoidance may be highly effective in halting and even reversing the progression of Parkinson's disease.
Coimbra, C.G. and Junqueira, VBC. High doses of riboflavin and the elimination of dietary red meat promote the recovery of some motor functions in Parkinson's disease patients. Brazilian Journal of Medical and Biological Research, Vol. 36, October 2003, pp. 1409-17

oops just realised this was posted 3 years ago - did anyone try taking the B2 and abstaining from red meat?

Trixiedee

Funny and we've all gotten excited by something and deflate when we realize the date.

i remember people talking about it on braintalk many years ago and think some claimed improvement. i remember a Brite or Britte making some improvement but see if anyone responds. i couldn't give up red meat it is one of the things i can count on to keep things moving along if you get my drift.

no pride left

B vitamins are getting my attention lately, though riboflavin has not been on my radar until now. B12 has been, along with B6. All of course vital for the nervous system. NWPF has dietary advice on B12 & folate for people taking l-dopa in the long term. Also found this

http://www.hbi.ucalgary.ca/news-stor...pamine-dilemma

which seems to suggest that supplementation with cobalamin (a form of B12) may be useful in a type of peripheral neuropathy that may be induced by long term levodopa usage.

Slightly off topic I know, but maybe connected?

Lindy

I have recently added B12 to counteract the homocysteine levels we end with when levodopa metabolizes. This stuff, admittedly haven't looked that closely, has been linked to an increase in cardiovascular disease and problems. Just what we do not need.

I ran across this research on B2 but felt deflated when I saw that the authors were called out by their peers on really shoddy research design. In the end, this combo may benefit some of us. We do not know, nor likely never will from a clinical study/FDA standpoint because it is not patentable. I thought that the most interesting thing about all this was the exchange between the scientists over methodology. I give the author's kudos for making this point and for asking their detractors to come up with their own study instead of merely complaining.

From the journal: authors' response to criticism

Our inexpensive therapy (1) addresses the cause of PD and, rather than merely alleviating the symptoms (the major goal of the costly palliative treatments available), may provide partial disease regression even in the more advanced stages and, when administered to recent onset PD patients, may even lead to the asymptomatic state. In addition, nobody can register patent rights for riboflavin. Therefore, if properly considered by patients and colleagues, the confirmation of our results (allied to an early PD diagnosis and identification of predisposed subjects) may dramatically reduce the incidence of this disease, thereby alleviating the related burden on public and private health insurance systems. Ferraz and associates may best serve the interests of their questioning patients and colleagues by conducting their own study on this subject.


I have since reading this added B2 with the B12 but think I am taking too high a dosage of the B2...the study had patients taking 90 mg daily. I will say that since starting it I have more energy and when I have good PD days the are way better than usual as in I do not even notice meds and feel "normal". I also noted that I seemed to get a little more "on" time maybe up to half hour. Not great, but I'll take it.

Has anyone else tried this (including cutting out red meat)?

Laura

Basically for everyone, B2 is crucial for normal activation of B6 pyridoxine (inactive form) to pyridoxal (active form in tissues).

The enzyme that does this task has B2 riboflavin as a cofactor.
Riboflavin also contains ribose, which is not plentiful in the diet.
Ribose is used to make adenosine which is in the mitochrondia where adenosine MP, DP and ATP are made. It has also been found that adenosine outside the cell is the signaling compound for initiating sleep. It is also released in large amounts during acupuncture. One can improve adenosine levels I think with taking some ribose extra... I use d-ribose myself, now and it is quite nice. It is very slow to act (in onset) but does deliver more stamina and better overall sleep. It might be useful in PD, but I have not seen yet studies to that effect. It IS being used in chronic fatigue and fibromyalgia with some success now.

This is why taking a B-complex (which contains riboflavin) is important to getting full benefit of B6 therapy.

Pyridoxal kinsase (the conversion enzyme) may be blocked by some drugs. I recall Theophylline being one. But I don't think research has expanded on many drugs to see their effects on this enzyme. So it can be bypassed by using P5P form of B6, which contains the active form. NOW makes a nice one which is enteric coated to preserve the P5P actions as much as possible. It is not expensive and easily available online.

Here I go again, but in her book "Minding My Mitichondria", Dr. Wahl harps at length about the B vitamins because they are CRUCIAL to our mitochondria functioning properly. If you google the B vitamins you'll find lots of references to "nervous system health" but the reality is that they are truly vital and without them we end up in deep doo-doo.

Since we are trying not to eat many grains, it is hard to get all the Bs that we need, so we do take Jarrow's supplement for this called, appropriately, "B Right". It'll turn your pee OSHA yellow, but that just means your kidneys are working and excreting the B vitamins you don't use.

It has the methylcobalamin form of B12 and the P5P form of B6, I think it is, so it's a good blend. I think you need magnesium as well for optimal absorption, not sure about that or the timing, whether you have to take it at the same time (we don't, just too many pills) or have magnesium in your system. Magnesium is also critical and most people do not get enough in their diet.

I have come to realize that, if taken at the right time, a B-complex has a major influence in relation to my first "On" cycle in the mornings (the closest to a baseline situation I can manage with the sinemet factor). This morning is a good example: Took sinemet and sinemet cr at 7:15. Was sluggishly coming on at 7:45 and took a B-complex. Was "sparkling" by 8:00 and generally feeling good.

One thing about the study with riboflavin that I wonder about is the red meat. The assumption is that it was a negative. But our bodies do drive us to consume foods (or even dirt for goodness sake) that contain specific nutrients that we lack. It seems a reasonable possibility that these folks in the study were not overeating in the red meat department and creating problems for themselves, but were, rather, dealing with a problem by instinctively seeking out large quantities of red meat in an effort to get the nutrients - B vitamins in this case.

We established long ago on this forum that, despite all the warnings that protein was bad for PWP, that many of us lusted after red meat.

B-vitamins are water soluble and any of us dealing with nocturia are starting the day already unbalanced. Since the B-vitamins are needed to process levodopa in the brain while at the same time the two get in each others way in the GI tract, timing is critical. At present, for me it seems best to give the Ldopa a half-hour head start and then kick it in the butt with a dose of B.

With the recent reports of PWP having unusual bacterial overgrowth in the small intestine and the importance of the same area in the B-vitamins story (both for synthesis and absorption), one has to look at this more closely.

Keep in mind that some of humanity's greatest scourges have had such prosaic origins.

As patients, we hate to hear it because l-dopa is our only life line.. and as doctors, it means the crumbling of the main pillar of the financial empire built arround PD treatment. Thank you Lyndy for the link. Pls allow me to quote the following from it:
“As far back as my residency, we were seeing about a 10% incidence of peripheral neuropathy along with Parkinson’s disease” says neurologist and HBI researcher Dr. Cory Toth, “but when I asked the specialists about it, they didn’t think it was attributable to the treatments we were using.”

"Toth wanted more definitive answers, so in collaboration with fellow HBI members Drs. Suchowersky and Zochodne, he conducted a longitudinal study of 58 Parkinson’s disease patients to test for links between Parkinson’s disease and peripheral neuropathy. The results were surprising. In their study, Dr. Toth and his team found over half of the Parkinson’s disease patients tested had peripheral neuropathy. And the severity of the peripheral neuropathy suffered went up with increased exposure to L-dopa as a treatment.

"

I was recently diagnosed with B12 deficiency and folate deficiency, which together my doctor called pernicious anaemia. I have been treated for this with 3 one-a-week injections to 'load' the B12 and am now about to be tested to check levels before going onto 3-monthly injections. Posting here about it led to people telling me that it can also be treated with daily oral medication. And they filled me in on some details of this. I believe the tablets are somewhat more expensive than injections which are as cheap as chips.

My doctor (GP) asked me if there were any connections to PD meds or PD itself.

Imagine my surprise when I found a world of people out there having very much the same problems as PwP have. A 'one size fits all' theory of deficiency, and doctors who do not listen. A struggle to get treatment. Lives that are messed around by a lot of fatiguing symptoms, and a whole load of neurological damage too. There is a forum and society trying to put this on the map, called the Pernicious Anaemia Society. And hundreds of people are posting there..........

To try and answer my doctors question, I looked at two questions.
1. Was there a connection between l-dopa usage and B12/folate deficiency?
2. Was there a connection to PD itself?

I did a small very subjective exercise to see if there were possibly others like me on our forum, here at Neurotalk. Out of around 15 people 4 had some experience of either B12 def. or folate deficiency or PA. That was high enough for me to want to look further.

I found a study done by neurologists at Athens Uni., Greece, that indicated that B12 and folate levels were lowered in long term PwP. I took it to my Doctor who pretty much waved it away when he saw where it was done This study made interesting correlations between these deficiencies in PwP and late stage symptoms such as dementia and cognitive loss.

I also found on the NWPF site, an article by Katherine Holden (dietician who specifically writes on diet and PD) about low levels in PD patients, citing other articles that indicated that people using l-dopa were more likely to have B12/folate deficiencies, so I followed this up, and found more than a few articles and studies.........

As I was doing this I was also rooting around on the PA forum, and it became very clear that a lot of symptoms of PA also correlate with PD. I learned that that PA results from damage to the gut. It runs in families and can happen at any age. I had never heard of it at all until this year, and was surprised about this, surely anaemia was something to do with blood. But no, here it was, starting in the gut. And the cause. Autoimmune response. It destroys specific cells in the digestive system that absorb B12. This in its turn leads to deficiency and red blood cells that are mis-shapen and ineffectual.

I know this is not scientific language, and I am no scientist at all! Apologies.

The neurological component of PA comes along with a de-myelinating process, similar in fact to MS. And the symptoms? Well there is some crossover with PD, and other neurological conditions. Certainly with things like peripheral neuropathy.

An informal conversation leg to a discussion of where our blood cells are manufactured. Same place as mitochondria....... or I think so, but again, I am no scientist. And please feel free to correct anything inaccurate, I am just learning......... i know I am throwing ideas around, but what if Braak is right? What if loads of things start in the gut. I know someone who has turned around his young autistic child through diet. And more I wonder about l-dopa itself. And think the body, which includes our brains, is more interconnected and complex than current mechanistic medicine realizes. I know there are some fantastic medical thinkers out there who do join the dots. But on the ground there are many who don't.

So could there be a connection to PD itself? Not sure? Maybe?

Could there be a connection to the causes of PD? Perhaps, along with other pre-disposing factors.....

Is there a connection to L-dopa use? Almost certainly.

But it does raise some questions......

My own situation: I have had three loading doses, each made me feel marginally better for a couple of days then tapered off. I got a bad rash, and looked very spotty, still do. This from the folate tablets, I think. I'm waiting to have a test to see how well I've responded then go onto 3 monthly jabs.

I have very painful legs. Sort of purple, and a bit swollen, others may remember 'purple legs' on the forum.

Are they related to meds or PD?

I have now worn off B12, and feel WORSE than before! Sound familiar? A lot of numbness too. Is this peripheral neuropathy? I don't know. I've no-one to ask, or no-one medical. My doctor clearly does not know, and I do not see my neuro for nearly a year. I guess a blood doctor, whatever they are called, would know. But I am unlikely to see one.

There is more to do with l-dopa and B12. Little studies that no-one has connected. And then there is Katherine Holden, who did made a connection.......

Patients with PA have some of the same questions we do. Why don't I feel better? Why does my medication wear off before my doctors tell me it should? Why do I have to find out all this stuff for myself...........

And a lot more besides................

Apologies, this is I know a thread about Riboflavin, something I know very little about too. If there are problems that relate to PD/l-dopa and Riboflavin I am interested. And with any other deficiencies.........

I am frustrated with feeling like a turkey being carved up by medical specialisms. I would like doctors who join the dots and see me as a whole person. I am guessing that this frustration is shared by most of us, and our fellow travellers with different conditions.......