Exactly right T, unless there's an obvious causal link the neuros aren't interested.
There's common 'themes' as discussed on this thread, but what if we miss ones ?
Drugs taken, head and neck injuries, anaesthetic effects (surgery) the list is endless !
The major PD organisations need to set up a minutely comprehensive data base, that PWP can log onto and fill out their comprehensive medical history.
Results to be published and updated online, daily ( not in 6 months time !)
There may just be some obvious patterns that we don't see now
Hi lfs
an example is aluminium (and derivatives) in deodorants - just read with a magnifying glass the list of ingedients - anything with a chemical compound name - google
without being alarmist, there's been a couple of cases in the UK recently of women dying after reacting to hair colourants/ products ! If that can happen what about the chemicals you happily smear on your head and leave for days on end ?
cleaning products and garden pesticides are also in the frame, not to mention foodstuffs.
an example is aluminium (and derivatives) in deodorants - just read with a magnifying glass the list of ingedients - anything with a chemical compound name - google
without being alarmist, there's been a couple of cases in the UK recently of women dying after reacting to hair colourants/ products ! If that can happen what about the chemicals you happily smear on your head and leave for days on end ?
cleaning products and garden pesticides are also in the frame, not to mention foodstuffs.
Hello all
This is a very interesting topic and we get lots of questions about the causes of Parkinson's.
At the moment we don't understand what causes Parkinson's and this is a major focus of our research. But for most people it's likely to be a combination of natural ageing, genetic susceptibility, lifestyle and environmental factors - rather than just one factor.
And to address Turnip's suggestion for 'a permanent scientific resource to bounce questions off no matter how silly' - this is actually a big part of the research team's job.
We answer every research enquiry we receive - either by phone, email or post - and last year we responded to over 650 research questions.
We're also trying to answer more research questions through the forum, twitter and facebook too.
And we've put the answers to some of our 'Frequently asked questions' on our website: http://www.parkinsons.org.uk/research/faqs.aspx
So if you have a question about any aspect of Parkinson's research just get in touch: research @parkinsons.org.uk
Hope this helps!
Claire
This is a very interesting topic and we get lots of questions about the causes of Parkinson's.
At the moment we don't understand what causes Parkinson's and this is a major focus of our research. But for most people it's likely to be a combination of natural ageing, genetic susceptibility, lifestyle and environmental factors - rather than just one factor.
And to address Turnip's suggestion for 'a permanent scientific resource to bounce questions off no matter how silly' - this is actually a big part of the research team's job.
We answer every research enquiry we receive - either by phone, email or post - and last year we responded to over 650 research questions.
We're also trying to answer more research questions through the forum, twitter and facebook too.
And we've put the answers to some of our 'Frequently asked questions' on our website: http://www.parkinsons.org.uk/research/faqs.aspx
So if you have a question about any aspect of Parkinson's research just get in touch: research @parkinsons.org.uk
Hope this helps!
Claire
Hi Claire. can honestly say i've never been to that page. I will read through it all.
a quick question (forgive the spelling please)
the dopaminergic cells in the SN - do different cells turn tyrosine to levadopa and levadopa to dopamine and if so is the levadopa passed along the axion directly to one cell. likewise is the dopamine then transported along the axion of that cell along the pathways to just one receiving cell or is the dopamine 'dumped'into the melting pot for all neurons in that area to pick up and store?
would research take kindly to that question or is it not in their remit?
thanks
a quick question (forgive the spelling please)
the dopaminergic cells in the SN - do different cells turn tyrosine to levadopa and levadopa to dopamine and if so is the levadopa passed along the axion directly to one cell. likewise is the dopamine then transported along the axion of that cell along the pathways to just one receiving cell or is the dopamine 'dumped'into the melting pot for all neurons in that area to pick up and store?
would research take kindly to that question or is it not in their remit?
thanks
Hello ifs, In the UK, a medical "consulant" , be it neurological, pediatric, oncologist etc. etc is highly qualified medical professonal within their particular sphere of expertise - just one step below Professor
Hi Claire,
Thanks for the fantastic news on your post! I'll start by reading your web-site and if I have remaining questions will be very happy to send a mail to the address you mentioned - a huge thanks in advance for that!!
Maybe I'm being simplistic/naive about this, but while I agree that nobody really knows what causes Parkinson's we all seem to be very capable of listing a number of possible causes. And while there's nothing we can do about some of them (ageing and genetic deficiencies being the obvious examples) I'm less sure we're so powerless agaist some of the other possible causes. For example, if I were to find that the lead from the small bullet in my arm is really playing a role - that doesn't seem too difficult to fix; same thing for the mercury in my teath; samething thing for infections or vit x deficiencies (assuming I can figure out what's causing them and act on that - or maybe just the relevant supplements ). Etc, etc, etc. So, with this in mind, the approach I'm following is to:
a. Identify the possible causes (at least the most common ones).
I think we're doing well in this post on this, but I would welcome any
professional advice to make sure we're not forgetting anything important.
But, as krugen68 says the list can be very large and so, what can we do
when our list of possible causes has some 20 or 30 possible things and it's
impractical or too long to do them all?
b. My personal take is that each one of us needs to focus on the ones that (i)
are most likely to apply to his/her own special case, and (ii) are actionable
(i.e., one can do something about them). And again, on both points I would
really welcome professional advice.
On point (i) it would be invaluable for me to know for each item on our list
if it can be easily tested (and how it can be tested - through a blood test
or anything like that). On point (ii) it would be great to know that if we
suspect that some possible cause does apply to us, what can/should we do
about it. Armed with this information, I'd be just so happy to quickly run
the necessary tests and focus on fixing/managing the possible causes that the
test results show they may apply to me, and/or those that can't be tested but
that I suspect may apply anyway.
I don't know if this will work, but that's what I'm trying to do for myself... and I can guarantee you that I'm finding it really tough to get solid professional advice. So I would find it fantastic any help that you and your colleagues may provide on this. Again, I will read your site, send you any remaining questions on this, and will post my own findings here, in case others can also somehow benefit from this.
Hi Annebernadette: a big thanks for explaing what consultants really are. I obviously had a totally wrong impression. Thanks
Warm regards to all,
lfs
Thanks for the fantastic news on your post! I'll start by reading your web-site and if I have remaining questions will be very happy to send a mail to the address you mentioned - a huge thanks in advance for that!!
Maybe I'm being simplistic/naive about this, but while I agree that nobody really knows what causes Parkinson's we all seem to be very capable of listing a number of possible causes. And while there's nothing we can do about some of them (ageing and genetic deficiencies being the obvious examples) I'm less sure we're so powerless agaist some of the other possible causes. For example, if I were to find that the lead from the small bullet in my arm is really playing a role - that doesn't seem too difficult to fix; same thing for the mercury in my teath; samething thing for infections or vit x deficiencies (assuming I can figure out what's causing them and act on that - or maybe just the relevant supplements ). Etc, etc, etc. So, with this in mind, the approach I'm following is to:
a. Identify the possible causes (at least the most common ones).
I think we're doing well in this post on this, but I would welcome any
professional advice to make sure we're not forgetting anything important.
But, as krugen68 says the list can be very large and so, what can we do
when our list of possible causes has some 20 or 30 possible things and it's
impractical or too long to do them all?
b. My personal take is that each one of us needs to focus on the ones that (i)
are most likely to apply to his/her own special case, and (ii) are actionable
(i.e., one can do something about them). And again, on both points I would
really welcome professional advice.
On point (i) it would be invaluable for me to know for each item on our list
if it can be easily tested (and how it can be tested - through a blood test
or anything like that). On point (ii) it would be great to know that if we
suspect that some possible cause does apply to us, what can/should we do
about it. Armed with this information, I'd be just so happy to quickly run
the necessary tests and focus on fixing/managing the possible causes that the
test results show they may apply to me, and/or those that can't be tested but
that I suspect may apply anyway.
I don't know if this will work, but that's what I'm trying to do for myself... and I can guarantee you that I'm finding it really tough to get solid professional advice. So I would find it fantastic any help that you and your colleagues may provide on this. Again, I will read your site, send you any remaining questions on this, and will post my own findings here, in case others can also somehow benefit from this.
Hi Annebernadette: a big thanks for explaing what consultants really are. I obviously had a totally wrong impression. Thanks
Warm regards to all,
lfs
Hi,
In case it may be relevant to anyone, just wanted to share a couple of insights I was given by someone with PD who had his mercury fillings replaced by a specialist dentist. He told me that before replacing them, the dentist was able to tell how toxic they were by testing the teeth with a special machine, and that he had to take lots of different vitamins for two weeks to prevent his body from becoming toxic should any of the mercury be swallowed during the extraction.
BRs,
lfs
In case it may be relevant to anyone, just wanted to share a couple of insights I was given by someone with PD who had his mercury fillings replaced by a specialist dentist. He told me that before replacing them, the dentist was able to tell how toxic they were by testing the teeth with a special machine, and that he had to take lots of different vitamins for two weeks to prevent his body from becoming toxic should any of the mercury be swallowed during the extraction.
BRs,
lfs
Hi Turnip, thanks for your question - it really tested our memories!
The dopaminergic nerve cells in the substantia nigra (SN) can do both. They convert tyrosine to levodopa, and then levodopa to dopamine.
The dopamine is then released by the nerve cell into the gap between nerve cells (called the 'synaptic cleft') where the dopamine can then bind to and activate neighbouring nerve cells - and trigger them to transmit the message on.
Here's a good diagram that probably explains it better than I have:
http://bit.ly/9czJQl
Hope this helps!
Claire
The dopaminergic nerve cells in the substantia nigra (SN) can do both. They convert tyrosine to levodopa, and then levodopa to dopamine.
The dopamine is then released by the nerve cell into the gap between nerve cells (called the 'synaptic cleft') where the dopamine can then bind to and activate neighbouring nerve cells - and trigger them to transmit the message on.
Here's a good diagram that probably explains it better than I have:
http://bit.ly/9czJQl
Hope this helps!
Claire
Hi Claire,
Thanks for the pretty clear description - very helpfull!
May I also ask your view on the follow-up question we've debated earlier among ourselves in this post: When DaTscans show low dopamine activity (which I understand means the release of the dopamine from the cell into the synaptic cleft), does it necessarily mean that the cells involved are uncapble of producing dopamine? In other words, could one have cells still capable of producing dopamine but "just" with something wrong in terms of transport ability?
Warm regards,
lfs
Thanks for the pretty clear description - very helpfull!
May I also ask your view on the follow-up question we've debated earlier among ourselves in this post: When DaTscans show low dopamine activity (which I understand means the release of the dopamine from the cell into the synaptic cleft), does it necessarily mean that the cells involved are uncapble of producing dopamine? In other words, could one have cells still capable of producing dopamine but "just" with something wrong in terms of transport ability?
Warm regards,
lfs
Hi lfs
DaTSCANs don't actually measure dopamine levels, they highlight the nerve cells that handle dopamine.
So they tell us how many nerve cells are left in the brain that can handle and respond to dopamine, which can be helpful for diagnosing Parkinson's but they are not sensitive enough to show us what's going on inside the affected nerve cells.
We can't see into the Parkinson's brain, which is why it's so important to study the post-mortem brain tissue that we collect at the Parkinson's UK Brain Bank, and also study nerve cells grown in dishes in the lab.
I hope this helps to answer your questions.
Best wishes,
Claire
DaTSCANs don't actually measure dopamine levels, they highlight the nerve cells that handle dopamine.
So they tell us how many nerve cells are left in the brain that can handle and respond to dopamine, which can be helpful for diagnosing Parkinson's but they are not sensitive enough to show us what's going on inside the affected nerve cells.
We can't see into the Parkinson's brain, which is why it's so important to study the post-mortem brain tissue that we collect at the Parkinson's UK Brain Bank, and also study nerve cells grown in dishes in the lab.
I hope this helps to answer your questions.
Best wishes,
Claire
Hi,
I am new to the forum but have been reading this latest thread with some interest.
I am 47 and was dx in October having fallen ill suddenly with various symptoms in May.
My GP sent me for over 30 blood tests in order to try and get to the bottom of what was going on. The only things that showed up were low B12,Low Vit D and low folic acid.
I am a very outdoors type person whose main hobby is hill walking and was therefore sent for an endoscope to see if there was an absorption problem to explain the low vit D(which there was not)
I was then sent to a Neurologist who dx me immediately with Pk.
If vit D deficiency is common with people dx with pk. Is this one of the causes or is it as a result of PK?
I too feel that surely it would be helpful in trying to find out what the cause of PK is, would be for someone to take a case history of people with it and see if there were links.
Has this research been done previously and if so is this research publicly available?
I also feel that we should be moving forward ourselves to do everything we can to compliment the medication we are on and try to maximise the effects of the medications whether this is by exercise, diet and vitamins.
I am new to the forum but have been reading this latest thread with some interest.
I am 47 and was dx in October having fallen ill suddenly with various symptoms in May.
My GP sent me for over 30 blood tests in order to try and get to the bottom of what was going on. The only things that showed up were low B12,Low Vit D and low folic acid.
I am a very outdoors type person whose main hobby is hill walking and was therefore sent for an endoscope to see if there was an absorption problem to explain the low vit D(which there was not)
I was then sent to a Neurologist who dx me immediately with Pk.
If vit D deficiency is common with people dx with pk. Is this one of the causes or is it as a result of PK?
I too feel that surely it would be helpful in trying to find out what the cause of PK is, would be for someone to take a case history of people with it and see if there were links.
Has this research been done previously and if so is this research publicly available?
I also feel that we should be moving forward ourselves to do everything we can to compliment the medication we are on and try to maximise the effects of the medications whether this is by exercise, diet and vitamins.
Hi
there have been lots of studies showing a correlation between low vit d and PD but all end with 'further investigation is needed'.
claire - very helpful. i have more questions! but i'll keep them for later.
there have been lots of studies showing a correlation between low vit d and PD but all end with 'further investigation is needed'.
claire - very helpful. i have more questions! but i'll keep them for later.
Hi Claire,
Thanks a lot for your answer... It's an important point to me because lots of folks say that the reduced cell activity that is shown in a DaTscan really means the brain cells are dead... while I hadn't seen any scientific evidence of that. DaTscans "just" measure dopamine transport activity... and in my mind that makes a difference.
Warm regards,
lfs
Thanks a lot for your answer... It's an important point to me because lots of folks say that the reduced cell activity that is shown in a DaTscan really means the brain cells are dead... while I hadn't seen any scientific evidence of that. DaTscans "just" measure dopamine transport activity... and in my mind that makes a difference.
Warm regards,
lfs
Hi Heron,
Welcome to the discussion and I'm happy that you found it interesting.
It's interesting you're low on vit D. I'm myself low on vit D and haven't been able to find a response to your question so far. I have read that PD folks often have low vit D, so presume there's an established correlation somewhere, but haven't seen it nor any indication of which one causes the other. My approach so far has just been to take vit D supplements and monitor my blood tests to see if the level goes up (and it's almost back to normal now). But this may not be very optimal, as I'm told that the best way to treat vit deficiencies is not to take supplements but really to find and fix the underlying cause.
The point that feels to me most striking to me in what you mention is low folic acid. Again, I'm not a medical doctor so could be totally wrong, but do note that folic acid seems to be the main ingredient in THFA (Tetrahdydrofolic acid) and THFA deficiency seems to play a double negative role in PD: on one side THFA is a key ingredient that our bodies uses to create L-dopa (and thus dopamine)... so THFA deficiency is likely to result dopamine deficiency. On the other hand, when the cels attempt to create L-dopa and THFA is not available they seem to end up creating something else that just happens to be toxic and thus may be contributing to destroying the dopaminic cells. Take a look at the following paper which explains this better than I can: home.uchicago.edu/~syin/Kang.doc
So, if the stuff in this paper is really true, you may want to consider trying to find out and fix the causes of your folic acid deficiency (which would likely be the ideal thing - though possibly difficult) and/or take folic acid/vit B9 supplements (but again, supplements may work less well than the real natural sources). Also, don't take your eyes of other stuff too. It seems likely that PD may be due to a combination of things, so fixing one might not be enough.
I haven't seen anything talking about the relationship of vit B12 and PD. I have only heard of another person with PD saying he was low on B12 too and I think I recall reading somewhere that B12 deficiency and folic acid deficiency tend to happen together. But no firm idea if this is true or not, nor why. But if this is true, you may want to consider investigating the causes of B12 deficiency too, as it may be those that cause your folic acid deficiency.
I was happy to read your comment that someone should take a case history of people with PD and see if there were links... as that's exactly how I see it too. Unfortunatelly, I've been looking for that person for a bit now, and haven't found him/her. I'm starting to believe that it'll just have to be each one of us (which is why I started this forum threat). Hope you'll have more luck than me on finding someone
Also, fully agree that stuff other than medication are great for PD. In my case, I wasn't doing much exercise and I'm now swimming a fair bit every week (and I feel it makes a difference). The other thing that worked well for me was reading a few books on living for the moment. Helped me focus more on what's important and better manage stress.
Please keep us updated on what you find that works for you (and doesn't) - trying to figure out PD is obviously extremelly difficult, so working together is likely to get us somewhere faster.
Best of luck,
lfs
Welcome to the discussion and I'm happy that you found it interesting.
It's interesting you're low on vit D. I'm myself low on vit D and haven't been able to find a response to your question so far. I have read that PD folks often have low vit D, so presume there's an established correlation somewhere, but haven't seen it nor any indication of which one causes the other. My approach so far has just been to take vit D supplements and monitor my blood tests to see if the level goes up (and it's almost back to normal now). But this may not be very optimal, as I'm told that the best way to treat vit deficiencies is not to take supplements but really to find and fix the underlying cause.
The point that feels to me most striking to me in what you mention is low folic acid. Again, I'm not a medical doctor so could be totally wrong, but do note that folic acid seems to be the main ingredient in THFA (Tetrahdydrofolic acid) and THFA deficiency seems to play a double negative role in PD: on one side THFA is a key ingredient that our bodies uses to create L-dopa (and thus dopamine)... so THFA deficiency is likely to result dopamine deficiency. On the other hand, when the cels attempt to create L-dopa and THFA is not available they seem to end up creating something else that just happens to be toxic and thus may be contributing to destroying the dopaminic cells. Take a look at the following paper which explains this better than I can: home.uchicago.edu/~syin/Kang.doc
So, if the stuff in this paper is really true, you may want to consider trying to find out and fix the causes of your folic acid deficiency (which would likely be the ideal thing - though possibly difficult) and/or take folic acid/vit B9 supplements (but again, supplements may work less well than the real natural sources). Also, don't take your eyes of other stuff too. It seems likely that PD may be due to a combination of things, so fixing one might not be enough.
I haven't seen anything talking about the relationship of vit B12 and PD. I have only heard of another person with PD saying he was low on B12 too and I think I recall reading somewhere that B12 deficiency and folic acid deficiency tend to happen together. But no firm idea if this is true or not, nor why. But if this is true, you may want to consider investigating the causes of B12 deficiency too, as it may be those that cause your folic acid deficiency.
I was happy to read your comment that someone should take a case history of people with PD and see if there were links... as that's exactly how I see it too. Unfortunatelly, I've been looking for that person for a bit now, and haven't found him/her. I'm starting to believe that it'll just have to be each one of us (which is why I started this forum threat). Hope you'll have more luck than me on finding someone
Also, fully agree that stuff other than medication are great for PD. In my case, I wasn't doing much exercise and I'm now swimming a fair bit every week (and I feel it makes a difference). The other thing that worked well for me was reading a few books on living for the moment. Helped me focus more on what's important and better manage stress.
Please keep us updated on what you find that works for you (and doesn't) - trying to figure out PD is obviously extremelly difficult, so working together is likely to get us somewhere faster.
Best of luck,
lfs
http://journals.cambridge.org/download.php?file=%2FBJN%2FBJN104_05%2FS0007114510001005a.pdf&code=a825d608de95b80ecc1b3917051f9ad5#xml=http://journals.cambridge.org/data/userPdf/
A recent article on pd and B vitamins. A bit much for me to digest at this hour!
As regards patient data What do you think of the 23andme initiative and also patients like me site and just recently Health Unlocked all of which i think are endeavouring to capture patient experience/symptoms.
Best wishes
I hope the link works!
A recent article on pd and B vitamins. A bit much for me to digest at this hour!
As regards patient data What do you think of the 23andme initiative and also patients like me site and just recently Health Unlocked all of which i think are endeavouring to capture patient experience/symptoms.
Best wishes
I hope the link works!
Hi Margaret,
The link doesn't seem to work. Would you be able to post the title of the study and a couple of the authors, so we can google it?
Thanks for mentioning the other sites/initiatives. I had personally never heard of them. I took a quick look and here's my initial opinion:
- www.23andme.com - Looks very interesting to me. What I understood is that they send you a kit to collect a sample of your saliva (whose main contents I presume are a glass tube); you "spit" on the tube; you mail it back; they do the tests and show you the results of your genetic testing. The kit is free for folks with PD (you need to click on the PD part to order it for free; otherwise it's payable). I like their approach for 2 reasons (a) helps researchers collect genetic data on PD - which I see as key for them to discover stuff that helps us; (b) we also get to see our own results, which might give us some insight on what's causing PD for each one of us (though I saw people in other sites who had done it saying that the results are not easy to read). Anyway, just helping research seems a worthwhile reason to do it and it seems totally non-intrusive and pretty easy. I've ordered my kit.
- www.patientslikeme.com - Looks really interesting to find what other folks with PD go through in terms of symptoms, meds, and the timeline of it all. For example, one thing I found really nice is that you can click someone's profile and seen when the person was diagnosed, see when he/she starting taking different meds (L-dopa, etc), and see his/her report of the symptoms over time. So, seems great to take a look at meds. But it looks less applicable in terms of helping one find the causes of PD. I personally haven't registered, but will keep it in mind as a good option.
- www.HealthUnlocked.com - Had more difficult understanding what this one really does. It seems to have a forum (with PD as one of the communities/topics). It also seems to have some sort of feedback to medical doctors and patient profiles (which I presume are similar to those of patientslikeme). I personally haven't registered, but will keep it in mind as a possibility.
Thanks for the good suggestions and cheers,
lfs
The link doesn't seem to work. Would you be able to post the title of the study and a couple of the authors, so we can google it?
Thanks for mentioning the other sites/initiatives. I had personally never heard of them. I took a quick look and here's my initial opinion:
- www.23andme.com - Looks very interesting to me. What I understood is that they send you a kit to collect a sample of your saliva (whose main contents I presume are a glass tube); you "spit" on the tube; you mail it back; they do the tests and show you the results of your genetic testing. The kit is free for folks with PD (you need to click on the PD part to order it for free; otherwise it's payable). I like their approach for 2 reasons (a) helps researchers collect genetic data on PD - which I see as key for them to discover stuff that helps us; (b) we also get to see our own results, which might give us some insight on what's causing PD for each one of us (though I saw people in other sites who had done it saying that the results are not easy to read). Anyway, just helping research seems a worthwhile reason to do it and it seems totally non-intrusive and pretty easy. I've ordered my kit.
- www.patientslikeme.com - Looks really interesting to find what other folks with PD go through in terms of symptoms, meds, and the timeline of it all. For example, one thing I found really nice is that you can click someone's profile and seen when the person was diagnosed, see when he/she starting taking different meds (L-dopa, etc), and see his/her report of the symptoms over time. So, seems great to take a look at meds. But it looks less applicable in terms of helping one find the causes of PD. I personally haven't registered, but will keep it in mind as a good option.
- www.HealthUnlocked.com - Had more difficult understanding what this one really does. It seems to have a forum (with PD as one of the communities/topics). It also seems to have some sort of feedback to medical doctors and patient profiles (which I presume are similar to those of patientslikeme). I personally haven't registered, but will keep it in mind as a possibility.
Thanks for the good suggestions and cheers,
lfs
Testing testing testing.
Sorry about that, nothing was working.
I am now 50 and have been ill for about 25 years, 17 years ago I gave birth to my daughter. I had need to consult a doctor during pregnancy and found myself with a German trained woman. GP training in Germany puts great emphasis on the holistic view of the body. She did some testing: vitamins and trace elements, and discovered that I was deficient in magnesium and vitamin B-12. Her solution was to inject me in my muscle with B-12. This caused my obstetrician to go completely berserk claiming I had probably blinded my fetus. This caused me to go completely berserk only to discover German lady right, obstetrician male wrong. I had actually forgotten this incident until I read this post. It now seems to be possibly important.
I am now 50 and have been ill for about 25 years, 17 years ago I gave birth to my daughter. I had need to consult a doctor during pregnancy and found myself with a German trained woman. GP training in Germany puts great emphasis on the holistic view of the body. She did some testing: vitamins and trace elements, and discovered that I was deficient in magnesium and vitamin B-12. Her solution was to inject me in my muscle with B-12. This caused my obstetrician to go completely berserk claiming I had probably blinded my fetus. This caused me to go completely berserk only to discover German lady right, obstetrician male wrong. I had actually forgotten this incident until I read this post. It now seems to be possibly important.
Hi all
Thank you for all your comments,
I am very fortunate to have an excellent GP who continually monitors these levels.
After B12 injections (5 in two weeks) and folic acid tablets, these levels are back to normal although they are constantly being monitored with 3-6 monthly blood tests. Vit D supplements take months to make a difference so hopefully these levels will be checked in due course.
Low B12 symptoms were extreme fatigue and brain fogging(inability to concentrate)
I have come across an excellent book which explains the importance of diet and vitamins. The book is entitled ’Parkinson’s Disease Reducing Symptoms with nutrition and drugs’ by Dr Geoffrey Leader and Lucille Leader.
I have always lived a healthy life but I am now paying even more attention to my diet and lifestyle. I find the easiest activities for me are cycling and swimming (in a warm pool).
I hope this helps
Heron,
Thank you for all your comments,
I am very fortunate to have an excellent GP who continually monitors these levels.
After B12 injections (5 in two weeks) and folic acid tablets, these levels are back to normal although they are constantly being monitored with 3-6 monthly blood tests. Vit D supplements take months to make a difference so hopefully these levels will be checked in due course.
Low B12 symptoms were extreme fatigue and brain fogging(inability to concentrate)
I have come across an excellent book which explains the importance of diet and vitamins. The book is entitled ’Parkinson’s Disease Reducing Symptoms with nutrition and drugs’ by Dr Geoffrey Leader and Lucille Leader.
I have always lived a healthy life but I am now paying even more attention to my diet and lifestyle. I find the easiest activities for me are cycling and swimming (in a warm pool).
I hope this helps
Heron,
Thanks, Mrs.T, for sharing your experience, and glad Heron, that your GP is taking good care of it.
Wanted also to ask if anyone has any insight on iron and infection, as I'm puzzled about it. As I mentioned before, I suspect I have low Iron and/or infection but puzzled about it.
Let me start by explaining why I came to suspect low iron and infection (in case it may apply to some of you) It’s because:
a. By chance I did a bunch of yearly check-ups in the past 15 years and kept the results. When I look at the blood test results, I noticed that I consistently have MCT and MCH counts (they are not very low, but they are below-norm in 10 out of 11 tests). My understanding is that low MCT and low MCH results are not very serious on their own (my doctors seem to find that it’s not a big deal as my basic anemia indicators are ok), but by googling it I learned that low MCT and MCH apparently can be caused by low iron (among other causes, of course, so I’m not totally sure).
b. In the past 12 months I did more comprehensive blood tests that checked for iron more directly, by measuring level of iron and ferritine in the blood (ferritine normally measures the amount of iron in the body). The results of these tests are also a bit strange in that the iron levels vary between low and normal but ferritine levels vary between normal and high. From a pure iron perspective this is a bit strange (apparently ferritine and iron levels tend to go up or down together), but I also learned that ferritine can be higher than iron if there is an infection somewhere. So, my hypothesis is that I have both an infection and low iron levels.
Secondly, here's what I understand on the link between iron and/or infection and PD:
a. Low iron. One very interesting study I found tested low-iron in mice and showed that mice with low iron diets produced 35% less dopamine… which in my (simplistic) view is very consistent with the fact that Iron is one of the ingredients in the “formula” to produce L-dopa, and thus dopamine. This study is “Role of dietary iron restriction in a mouse model of Parkinson's disease”; Levenson CW, Cutler RG, Ladenheim B, Cadet JL, Hare J, Mattson MP.; Dec 2004 and you can find it here: http://www.ncbi.nlm.nih.gov/pubmed/15530889).
b. Excess iron. I haven’t personally seen any studies linking excess iron with PD, but researchers seem to be convinced there’s a good chance there might be a link. Actually, Parkinson’s UK has funded one project that seem to be investigating exactly this (“And What roles do inflammation and iron play inside the Parkinson’s brain?” by Dr. David Dexter). Also, I noticed separately that Dr. Dexter is running a test with PD patients to see if iron chellators (medications that reduce iron levels) might help with PD. Also, more puzzling to me, I’ve been reading that there are really two types of iron: ferrous iron (Fe2+), which seems to be ok and ferric iron (Fe 3+) which seems to be the highly toxic version and can destroy brain cells. I don’t really understand the differences nor how the toxic ferric iron gets created: other than the one example I’ve seen (and mentioned to Heron) which is that if we don’t have enough THFA(which is derived from vit B9) then our brains cells that normally would create L-dopa end up producing this toxic iron variety instead – a doubly-negative bad scenario, as not only we don’t get L-dopa but instead we get something toxic.
c. Infection. This one I understand even less well. The only study I’ve seen on the link between infection and PD is the one below (but it seems to focus on a very special case of infection). The "good" news is that there seems to be generally accepted that some link is likely. Actually, in addition to the research above from Dr. Dexter (which already focuses on infection) there is another research project funded by Parkinson’s UK on this subject (“Can reducing inflammation protect dopamine nerve cells?” by Dr Peter Teismann).
Finally, what I’m confused about – and on which would very much welcome any insight anyone might have:
a. On iron. What does it mean to think that PD is associated with excess iron? And what type of iron? Is that the toxic ferric iron? Or the “normal” ferrous iron? How is that measured? (too much ferritine?; can one measure the toxic ferric iron?). If anyone has seen any studies talking about any of this, I’d much appreciate to see them. Also, if anyone else believes he/she has low or high iron, would of course welcome any insights you may have from your experince on impact and/or causes.
b. On infection. I know the list of possible infection causes is pretty long (all sort of bacteria and viruses). But I suspect that for an infection to cause PD one must have it for several years. So, would welcome any suggestions on what are the frequent ones with folks with PD. My personal candidates so far are: (i) H. Pylori (but I tested negative for that one 6 months ago); (ii) other gastric-system infections (but did a biopsie on the upper part, and nothing special came up; I'm now scheduled to test the lower part soon); (iii) mouth and teeth (apparently some dentist work has some probably of leaving bacteria that can stay there for a while). But anyone has other suggestions?
Thanks and warm regards to all,
lfs
Wanted also to ask if anyone has any insight on iron and infection, as I'm puzzled about it. As I mentioned before, I suspect I have low Iron and/or infection but puzzled about it.
Let me start by explaining why I came to suspect low iron and infection (in case it may apply to some of you) It’s because:
a. By chance I did a bunch of yearly check-ups in the past 15 years and kept the results. When I look at the blood test results, I noticed that I consistently have MCT and MCH counts (they are not very low, but they are below-norm in 10 out of 11 tests). My understanding is that low MCT and low MCH results are not very serious on their own (my doctors seem to find that it’s not a big deal as my basic anemia indicators are ok), but by googling it I learned that low MCT and MCH apparently can be caused by low iron (among other causes, of course, so I’m not totally sure).
b. In the past 12 months I did more comprehensive blood tests that checked for iron more directly, by measuring level of iron and ferritine in the blood (ferritine normally measures the amount of iron in the body). The results of these tests are also a bit strange in that the iron levels vary between low and normal but ferritine levels vary between normal and high. From a pure iron perspective this is a bit strange (apparently ferritine and iron levels tend to go up or down together), but I also learned that ferritine can be higher than iron if there is an infection somewhere. So, my hypothesis is that I have both an infection and low iron levels.
Secondly, here's what I understand on the link between iron and/or infection and PD:
a. Low iron. One very interesting study I found tested low-iron in mice and showed that mice with low iron diets produced 35% less dopamine… which in my (simplistic) view is very consistent with the fact that Iron is one of the ingredients in the “formula” to produce L-dopa, and thus dopamine. This study is “Role of dietary iron restriction in a mouse model of Parkinson's disease”; Levenson CW, Cutler RG, Ladenheim B, Cadet JL, Hare J, Mattson MP.; Dec 2004 and you can find it here: http://www.ncbi.nlm.nih.gov/pubmed/15530889).
b. Excess iron. I haven’t personally seen any studies linking excess iron with PD, but researchers seem to be convinced there’s a good chance there might be a link. Actually, Parkinson’s UK has funded one project that seem to be investigating exactly this (“And What roles do inflammation and iron play inside the Parkinson’s brain?” by Dr. David Dexter). Also, I noticed separately that Dr. Dexter is running a test with PD patients to see if iron chellators (medications that reduce iron levels) might help with PD. Also, more puzzling to me, I’ve been reading that there are really two types of iron: ferrous iron (Fe2+), which seems to be ok and ferric iron (Fe 3+) which seems to be the highly toxic version and can destroy brain cells. I don’t really understand the differences nor how the toxic ferric iron gets created: other than the one example I’ve seen (and mentioned to Heron) which is that if we don’t have enough THFA(which is derived from vit B9) then our brains cells that normally would create L-dopa end up producing this toxic iron variety instead – a doubly-negative bad scenario, as not only we don’t get L-dopa but instead we get something toxic.
c. Infection. This one I understand even less well. The only study I’ve seen on the link between infection and PD is the one below (but it seems to focus on a very special case of infection). The "good" news is that there seems to be generally accepted that some link is likely. Actually, in addition to the research above from Dr. Dexter (which already focuses on infection) there is another research project funded by Parkinson’s UK on this subject (“Can reducing inflammation protect dopamine nerve cells?” by Dr Peter Teismann).
Finally, what I’m confused about – and on which would very much welcome any insight anyone might have:
a. On iron. What does it mean to think that PD is associated with excess iron? And what type of iron? Is that the toxic ferric iron? Or the “normal” ferrous iron? How is that measured? (too much ferritine?; can one measure the toxic ferric iron?). If anyone has seen any studies talking about any of this, I’d much appreciate to see them. Also, if anyone else believes he/she has low or high iron, would of course welcome any insights you may have from your experince on impact and/or causes.
b. On infection. I know the list of possible infection causes is pretty long (all sort of bacteria and viruses). But I suspect that for an infection to cause PD one must have it for several years. So, would welcome any suggestions on what are the frequent ones with folks with PD. My personal candidates so far are: (i) H. Pylori (but I tested negative for that one 6 months ago); (ii) other gastric-system infections (but did a biopsie on the upper part, and nothing special came up; I'm now scheduled to test the lower part soon); (iii) mouth and teeth (apparently some dentist work has some probably of leaving bacteria that can stay there for a while). But anyone has other suggestions?
Thanks and warm regards to all,
lfs