Topic: B12 and the importance of knowing if you need supplements- b12 and lyme....
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
THis link is from a vegan site, but it has a ton of info on things that can deplete B12 from your system and well worth the look . B12 deficiency ,or pernicious anemia symptoms are very close to lyme or other tick disease sx!!!
AND... having an autoimmune illness is a big reason many people become B12 deficient in the first place!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< LisaK >>>>>,
That's an interesting link,seems my B-12 may be a little off. From what I can find out, the Borrelia deplete B-12, and magnesium, and compete with our bodies for fuel/foods.
Don't know if I said this quite right. I am trying to figure out, a lot of things, for treating the 'Lyme' Borrellia mess [can't spell today]. Been at it for about 10 years,and I still feel like I don't know much.
Thanks for sharing the link.
Jus'Sthilverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
posted
Silver watched it (and I kind of half listened) and it is very interesting. Well worth the watch.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Silverwolf-
lymetoo, I am listening to it now! wow! thanks.
I have so many B12 issues an d my dumb GP dr (when I told her I was concerned) gave me a "B12" test. that is it. ugh. now I know what she should have ordered! why are they so dumB?
my genetics say right there in blazing truth- I do not absorb it or utilize it!!!
wow- the more I watch the more I get sad and mad....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
omgosh, now I am really worried!!! what if I am damaging myself by waiting ??? i need a dr now!!! should I get my own bloodwork from a lab????
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
on the PA feacebook page thye tell you to wait 4 months off all suppliments so you get an accurate reading, but I am gettin gnervous about waiting. it's been only about 3 weeks off of the pills and I feel pretty bad.
what should I do???
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
Write down the tests needed and ask your doctor to do them.
Unless you are having very severe symptoms, I would wait. Your call.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
This is the problem with getting an 'active' B12 test: no supplementation beforehand for four months. As my balance was so bad that I needed to hold onto somebody, I decided that I couldn't wait and that is when I came across the B12 oils I use. I found several threads on Phoenix Rising about them and I liked the idea that the oils are absorbed gradually over a period of several hours, rather than all at once in an injection, where apparently not all of it can be bound to its protein transporter.
Only you can decide how bad your symptoms are, Lisa. You are right about doctors' ignorance as to how B12 gets absorbed and of course, most of them have not yet taken on board the genetic information and how that might work functionally. In UK they only get half a day on nutritional medicine, so probably about ten minutes on B12!
My doctor admitted to me that she was out of her comfort zone, but read the serum B12 result as gospel (my genetics made my result falsely high), not realising that only a small percentage of serum B12 may be active, able to be utilised.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
how do I know how severe my sx are???? like im msorried about destorying my myln or whatever that is called. I am a bit off balance and starting to see things that arent' there. and my typing is getting really bad as you can see. (fine motor skills decllining)and brain mixing everything up
other things too of course, but im a littel scared.
ugh, maybe I will go to a new dr that I found and get blood work asking him to do what's on my list, then if that doesn't show anything wait out the full 4 months and go from there..
im just tired of wasteing money and being shot down.. especially after the last dr I had - the endocrine- who told me I didn't look sick enough. and yelled at me.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ukcarry- that is how I am starting to feel. !! I will check out teh oils a bit more- if I can remember!!! my menmory hasn't been this bad since I was in full lyme and cos abx treatment herxing!
you are right- only I can decide. I am a worry wart for sure (have craxy genetics for anxiety) and sometimes I think I project onto myself and make it al l worese.
wow- half a day on nutricion! no wonder! terrible.
o my , I am just worrie dbecasue my genetics are really bad for B. andI have been on suppliments for about 30+ years.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
just be sure to ask about the specific testing discussed in the video .. otherwise it's a waste of time and money
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
if you were interested in trying the oils, you could let Greg there (the formulator) know which mutations you have that don't look good for B vitamins or B12, with some of your symptoms and ask him to comment or to advise you which type(s) of B12 would be best for you. His advice should also help you to know which form of cobalamin injection to go for if you decide to do that.
But the first decision to come to is whether you are prepared to wait 4 months without B12 supplementation in order to be tested for active b12. Good luck, Lisa.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
uggghhhhhim so scared to wait......
I have facial numbness now to o- my nose gets numb to the point of no feeling for a bit. good for piercing, but .. ha.
yes, lymetoo, I hear and obey.
ukcarry, they let you do that???? to ask things/?? wow. the only problem with that is that I have a really hard time looking at the map of it all. that is why I went to a gene guy in the first place. i can't make sense of the websites. my brain feels like it takes the MCAT all the time!
just answering a few threads here makes me feel like I took a 5 hour exam and like my brain was on a tilt-a-whirl for way too long. it's so upsetting. I can' tfigure anythign a out and keep forgetting.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Yes, Greg is very good about responding to questions and is genuinely interested. Of course, it helps his own research. He asked to see and has looked at my ONE test (Genova) results, for example.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
posted
So how do you get your B12 that is circulating in your blood into your cells? My serum B12 is always sky high, off the charts (over 2000). I have been supplementing with hydroxo b12 but it still is sky high. I have severe neuropathy. Before supplementing, my B12 was in the 200's.
Posts: 142 | From Midwest | Registered: Sep 2015
| IP: Logged |
posted
But do the shots get it into your cells? It is getting into my blood ok. It is just not getting to where it needs to go.
Posts: 142 | From Midwest | Registered: Sep 2015
| IP: Logged |
quote:Originally posted by onebeed: But do the shots get it into your cells? It is getting into my blood ok. It is just not getting to where it needs to go.
- I would think so. Those with pernicious anemia can ONLY be helped by doing the shots, so it must be the best way.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my gene person gave me a spray that was supposed to help with the B12 going to wheree it's supposed to go. it was clled Methylation Assist. not sure if you could find somehting similar. this was something he made up and available only through drs I think
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I called the hometologist today and they said I don't need to come in becaue my serum level is fine. that is all they went by. I am so very upset. I guess I'm beating a dead horse. time to move on away into another city, or just sit back and wiait and see if I die or something.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
@ Lymetoo ... just watched the video link you posted on B12 deficiency ... scary as ____ but great to know , thx for posting ! The problem in the US seems to be poorly trained doctors ... so many diseases & problems seem to be overlooked by mainstream medical docs ... could it be because medical schools are primarily funded by pharmaceutical companies & medical insurance dictates what diseases are covered & what will not be according to profit margins ?! It is a travesty that we live in such a technologically advanced country & yet are so underserved by our medical system . I think everyone should insist on a complete vitamin assay when faced with fatigue issues etc that may be B12 related . It is good we have each other here to compare notes & offer support when our healthcare system fails us . The shots seem to be the most effective approach ... hope all will benefit form watching that video ... a real eye opener , thx for posting !
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
That is exactly what happened to me with both my GP and gastro, but too much, including my genetics, symptoms, history, family history etc pointed to it. I have seen the serum test described online as about as useful as a chocolate teapot....and that sums it up for me. All I can say is that the severity of my relevant symptoms eased somewhat after two weeks of B12 treatment and continued to improve over months of treatment.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
quote:Originally posted by Karensky: @ Lymetoo ... just watched the video link you posted on B12 deficiency ... scary as ____ but great to know , thx for posting ! The problem in the US seems to be poorly trained doctors ...
so many diseases & problems seem to be overlooked by mainstream medical docs ...
could it be because medical schools are primarily funded by pharmaceutical companies & medical insurance dictates what diseases are covered & what will not be according to profit margins ?!
It is a travesty that we live in such a technologically advanced country & yet are so underserved by our medical system .
I think everyone should insist on a complete vitamin assay when faced with fatigue issues etc that may be B12 related . It is good we have each other here to compare notes & offer support when our healthcare system fails us .
The shots seem to be the most effective approach ... hope all will benefit form watching that video ... a real eye opener , thx for posting !
- Absolutely! I agree!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
That is exactly what happened to me with both my GP and gastro, but too much, including my genetics, symptoms, history, family history etc pointed to it. I have seen the serum test described online as about as useful as a chocolate teapot....and that sums it up for me. All I can say is that the severity of my relevant symptoms eased somewhat after two weeks of B12 treatment and continued to improve over months of treatment.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic