My family Doctor gave me a test and found out I was positive for the C677T mutation and normal for the A1298C mutation in the MTHFR gene. This genotype occurs in 1.5-15% of the population and is associated with increased plasma homocysteine levels, a risk factor for arteriosclerotic coronary artery disease and venous thrombosis. In Parkinson's, oxidative stress plays a prominent role in the degeneration of the nerves that secrete dopamine. High
homocysteine levels cause oxidative stress......to summarize, my gene mutation has caused me to have high homocysteine levels which has caused oxidative stress which has caused my dopamine producing cells to die......I also have to watch out for heart disease....the good news is because I know this I can do what is necessary to lower my homocysteine levels.....it seems the # one treatment is vitamin b6, b12, and b3 .......
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bmakla54
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We are regularly told that a normal diet should result in ample quantities of all necessary vitamins. I may be wrong about this but I think a shortage of B12, if not caused by deficient diet is caused by a deficency of some chemical that facilitates the absorption of the B12 from the intestine. If this is the case then a B12 shortage must be corrected by injection rather than oral means. The injection has to be repeated once every 3 months.. If this is not applicable to B12 then it is for one of the others.
I meant to add that sometimes or under some circumstances some vitamins must not be taken as supplements to that derived from a normal diet because too much of some vitamins may be toxic. If you are pregnant you need to take special care in this regard.Unless it has been found that you have a particular shortage then its probably best not to take supplements. More can be less.
That's very interesting. I joined the free PD 23andme but can't decipher the results. My neuro had me in a clinical trial that included genetic testing, but when I dropped out, the results were lost. I took B vitamins (a "stress" formula) together with E, glucosamine and chondroitin, calcium and magnesium for years. Only stopped in past year or so because I'm having problems with constipation.
That's very interesting. I joined the free PD 23andme but can't decipher the results. My neuro had me in a clinical trial that included genetic testing, but when I dropped out, the results were lost. I took B vitamins (a "stress" formula) together with E, glucosamine and chondroitin, calcium and magnesium for years. Only stopped in past year or so because I'm having problems with constipation.
No I think they stopped working for me for a while due to absorption problems in my poor gut. When I started taking them, I was so stressed that I noticed a boost in energy soon after starting. Had frequent sinus infections, etc. Absolute necessity during menopause especially the E and calcium. Now if I even look at calcium I cannot have a BM. And Calcium carbonate lands me in bed for a day in pain !!!! I have to read labels carefully because it's added to EVERYTHING!
Interesting. I had read something about B vitamins and Parkinson's and since that timehave been taking B100's. I might check with my GP to see if I can have a B12 shot once a month.
Iam unaware of GP' in the UK bring able to offer such tests but wuuld like to know if this is innaccurate = my oen GP when I asked for assistance with results of my 23andme report said doubted they would be able to interpret added to which any results coming to the surgery become"official" and could be used by Insurance companies
I must research some of very interesting comments on B vitamins - I hsve been told in the past that a normal diet (which is?)will provide all the vitains needed. i must say that codtipation is the bane of ny ife and almost reached the stage gf controlling it, would hate to go backwards!!
Anything you have learned about constipation ! please pass along. Right now I am trying triphala. Movicol (from UK) gives me bad knee pain--I think too much sodium--and Miralax causes severe ab pain. Physical therapy helped but too expensive.
Pat v I have read that prunes and figs are the best natural laxative. Also for quick relief drink a glass of water every 10 minutes for one half an hour. A 20 minute walk should relieve constipation and also Psyllium seed is helpful....this information per the book 'Prescription for Nutritional Healing' by Phyllis A. Balch
I eat an organic apple every night and blackberries and blueberries all thru the day......I also eat alot of vegetables...I don't like prunes but if my apple stops working, I will go there
Yes Froggatt55, I am from the US....I think the issue with B vitamins is the absorption problem....some people don't absorb enough, thus the extra dosage. I am not familiar with the 23andme report.....
Hi, all who are interested in the B12 thing. A deficiency in B12 can came as just that, a dietary deficiency, caused by not getting the right nutrition, or as Pernicious Anaemia, which is where you lose specialist cells in the gut that produce something called intrinsic factor which is essential for helping absorb vitamin B 12. The first condition can be treated with supplements and improving the diet. The second should be treated with B12 injections. You can find out more about it from the Pernicious Anaemia Society. Your Doctor can test for this, but make sure that you have not taken any iron or folic acid supplements before testing otherwise the deficiency will not show up. If you come low in the reference range for B12 then your doctor should test you again to see whether or not you are producing intrinsic factor. This will determine how you are treated. Usually the treatment for PA will be a set of 'loading doses' that come fairly close to each other, followed by either a monthly or a 3 monthly injection depending on which B12 preparation the doctor prescribes. You will also need to take folic acid which helps absorbtion of B12. There is a sub set of people with PA who need their injections more often because the PA has caused neurological damage. In this case the doctor may need some encouragement as awareness of PA isn't that great even in the medical community. As with Parkinsons you will need to educate yourself. The PAS site is very good for this. There are some very supportive and helpful people. They are also campaigning for better awareness, along with an expert in the subject Dr Chandy.
There are studies which show that people who have been on long term levodopa therapy may develop PA, and PD nutritionist Katherine Holden advises on PD and PA and what to do.
There are a wide range of symptoms some of which have a cross over with PD. If you are very tired all the time, get breathless a lot, and sigh all the time it is worth getting tested.
Sorry this is rather long, and hope this will be helpful to some.
to markla54 - are you located un the eastern US? are your doctors at a teaching hospital or are you simply working with a neuro who treats PD patients? I ask, because my husband had PD, works with a doctor at a very "prestigious" teaching hospital, and all this doctor does is ask how he feels and fidgets with his meds. My husband had DBS surgery in 2007, which helps with his tremors, but did nothing for his ability to take less meds/day. This is a great disappointment to me, having had my husband go through this surgery, and still having to take the amts of meds he takes every day. I never heard of 23andme - what is it? would you be willing to correspond with me off this sight? You seem to have lots of info about things about which we never received information. I look forward to your response. Thanks.
Caregiver1....I will be happy to help you anyway I can. I live in Florida and my neurologist is about the same as yours. I found an internist who specializes in vitamin therapy and wellness naturally......she agreed to prescribe my Low Dose naltrexone, my neurologist said he didn't want to rock the boat.......and she has been testing my body chemistry. The next thing we are going to do is test for heavy metals. She told me my neurologist was giving me a form of vit
b12 that was poison and she gave me a different one. So I think mainstream neurologists are not very experimental and in my opinion rather on the negative side as far as hope or recovery.
I decided to research treatments myself.....finding road to Recovery Talk Radio for Parkinson's and that lead me to LDN, which is why I have been able to reduce my meds. Let me know how I can help you.
I was taking Effexor for 4 years. I started taking it when my husband was diagnosed with ALS (Lou Gehrigs Disease) for anxiety. I asked my doctor to help me stop taking it and he weaned me off of it. When I completely stopped taking it I noticed my left leg has tremors and then my left arm.
I am negative for C677T mutation and double-positive for A1298C. I am also positive on COMT. As a result I have poor absorption of B6, B9 (Folate), and B12. This makes my methylation a mess with all the consequences including PD. As PwP we must be very careful with vitamins, especially with vitamin B. B12 as cyanocobalamin, B9 as Folic Acid, and B6 as pyridoxine must be avoided. Instead the active coenzyme forms should be taken.
I am taking 1 of these lozenges first thing in the A.M. It helps me a lot. One very important
warning: if you are taking carbidopa then you should wait for 2 hours because B6 and carbidopa are incompatible. Mucuna is no problem. But I am not sure if you can take B6 if you are on Rytary, since it's a slow release medication and carbidopa's presence in your system is unpredictable.
I also took 23andme and I think it's available in most countries - just go to their website: 23andme.com. The offer 2 types of tests - basic and basic + health. The latter is twice as much as the former and I found it useless. I recommend getting the basic one and then run one of many free or inexpensive online analyses, which would give you much more useful information.
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And Calcium carbonate lands me in bed for a day in pain !!!! I have to read labels carefully because it's added to EVERYTHING!
Very good post!
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