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Old 04-07-2015, 01:08 PM #1
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For you and your doctors:

http://www.aafp.org/afp/2003/0301/p979.html

This is a link to a medical site written for doctors...it is dated
2003.

Dr. Snow's article in JAMA from 1999....
http://archinte.jamanetwork.com/arti...ticleid=485067
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bluesfan (04-07-2015), Lara (04-07-2015)
Old 04-07-2015, 01:47 PM #2
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Thanks madisongrrl & MrsD
I've calmed down a little now and am trying to think laterally to come up with alternative tactics.
I would love to see a functional medicine doctor - however I don't think they even exist under our medical system. Same goes for independent/private lab tests. They probably are in the larger cities but I'm in a small rural town. Thanks for reminding me about co-factors - it had crossed my mind about getting tested for other possible deficiencies but B12 seemed the most likely and I had the earlier tests as a base to go by. Will keep it in mind.

For me it was interesting to see that my B12 had risen slightly between Jan and April - what I hadn't told my GP was that I had started eating liver pate about 3 weeks earlier as I knew that was a concentrated source of B12 - so maybe I am still absorbing some - just not enough.

MrsD the aafp article is excellent and I had taken just the diagnostic diagram to my GP but when I tried to show it to her she got that glazed look and dismissed it. You can lead a horse to water but ...
Thanks also for the link to Dr Snow's article - I had seen it earlier but forgot to bookmark it.
As an interesting connection - researching further this morning - I think the Schilling test may still be available here in NZ - so maybe - just maybe - there is one advantage to living in a country with a somewhat redundant medical system.
Thanks for the encouragement - it's helped me continue after a rough weekend.
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Old 04-07-2015, 03:44 PM #3
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I totally empathise with your difficulties. We found one great doctor who was more up to date with the B12 issues but she advised my daughter that she was going away on maternity leave and that the other doctors in the practice would not agree with her recommendations regarding supplementing B12. Needless to say she left, we then moved and now we're in a similar situation as you are.

As I see it there are a couple of different ways to go ahead and I'll post what I think is the logical way for us (daughter and self) in a similar situation ...

We will go ahead with the genetic testing out of the USA. Considering the relatively low price of under $100 USD, it is much less expensive than seeing a Psychiatrist for $350 for 45minutes which is where we may all end up if no one starts to take us seriously.

Once you have that information then you are ahead already. Then you need to interpret the data and you can find that information with help here I'm sure.

My seriously real problem with getting the genetic testing done overseas is that I'm very wary of the gathering of health and genetic data by other countries.

In the meantime we will keep supplementing with the B12. I'm not sure how many free blood tests you can get over there per year, but we can only get 3 for vitamin type levels per year so my daughter tells me.

We're looking for the same information as you are as you know, so I just wanted to tell you that you're not alone and it will all work out in the end, but in reality it needs to be sooner than later.

btw I think your medical practice needs to upgrade their security online.

take care.
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Old 05-13-2015, 03:25 PM #4
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All the best to you for your appointment. I hope you get some answers.

I just was thinking about you and all the problems you've had trying to get doctors to listen to you and I remembered this thread and our previous discussions. Something I just read in the Health News Headlines here made me want to post it to you. (still half asleep so excuse grammar)

http://news.yahoo.com/factbox-compan...--finance.html
Factbox: How companies are mining patient DNA, data for drugs

Quote:
Originally Posted by Lara View Post
My seriously real problem with getting the genetic testing done overseas is that I'm very wary of the gathering of health and genetic data by other countries.
edited to add: I should have said "in" other countries, not "by" other countries, but the drift is the same.
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Old 05-13-2015, 03:48 PM #5
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I think you should get your copper run. When people take high dose zinc, copper may fall. They tend to compliment each other.

Some zinc supplements have copper in them, so look at your label of the product you used or look it up.

Males tend to lose zinc daily...as it is secreted in semen. Women lose Iron, and men tend to lose zinc. So your taking it so long is very odd and unnecessary unless you use GERD medications daily or an ACE inhibitor for blood pressure. These two drug families deplete zinc. This is why oysters are suggested for men as an aphrodesiac .... they are very high in zinc.

Most zinc supplements are harsh and cause digestive upsets. Zinc sulfate especially. Zinc is used in nursing homes to help heal skin bedsores, at very high doses.... 220mg...a day.

I think you should get your testing done, copper level and a zinc/copper ratio.
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Old 05-13-2015, 09:59 PM #6
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Thanks Lara & MrsD for your concern.

I did get copper done, along with zinc, (but not zinc/copper ratio) - I asked my GP for the Zinc test but she refused to order it giving me the excuse that she thought it was a test she wasn't authorized to order. I think we both knew that wasn't the case but I didn't push it. She was probably somewhat embarrassed because she was the one who had prescribed the zinc, was supposed to be monitoring me and didn't know it could be toxic until I told her! We had actually twice reviewed my continuing the zinc during the 2.5 yrs and not once did she suggest stopping it. Her knowledge of Addison's is minimal and I'm guessing she thought my depleted immune system needed it.

I had the tests done privately (yet again!), but unfortunately not until 5 days after stopping the zinc as I was pretty unwell and not thinking too clearly. Both tests came back within the normal range. I don't know if the 5 day wait was too long and the levels had stabilized and therefore any excess or deficiency was corrected. So I really only have the symptoms (and subsequent improvements) to go by.

I spoke to the pharmacist about it and she only had even a vague knowledge of possible toxicity but did agree that the warnings on both the labeling and the data safety sheet on medsafe (NZ Govt. drug info website) were inadequate. That's the complaint route I'm going down to follow up. Unfortunately without supporting clinical evidence (ie: lab results) filing an Adverse Events report would be a wasted effort.

MrsD - I still intend to supplement with B12 to get my numbers back up to your recommended levels but I'm doing the "change 1 thing at a time and observe" routine. I also have another big change I need to make within the next few months - stopping HRT (tapering). What would you recommend the minimum time I would need between starting B12 and then reducing HRT? - I really need to do this over our winter - summer is too hot (ie next few months) Many thanks for any suggestions.
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Old 05-14-2015, 05:04 PM #7
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I'd do the B12 first... It is so critical if low. You can always go off HRT anytime.
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Old 04-07-2015, 09:01 PM #8
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Quote:
Originally Posted by bluesfan View Post
I would love to see a functional medicine doctor - however I don't think they even exist under our medical system. Same goes for independent/private lab tests. They probably are in the larger cities but I'm in a small rural town. Thanks for reminding me about co-factors - it had crossed my mind about getting tested for other possible deficiencies but B12 seemed the most likely and I had the earlier tests as a base to go by. Will keep it in mind.
A book that might interest you is The Wahls Protocol. Dr. Terry Wahls is a conventionally trained MD, who got MS and figured out how to improve her situation through diet and functional medicine. Chapter 10 is all about supplementation and target reference ranges. Even though I don't have MS, I enjoyed he book and learned a lot from it.
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Old 04-07-2015, 11:01 PM #9
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Thanks madisongrrl
Thanks for the info. I saw her video - 'Minding your Mitochondria' - how she treated her own MS. Lots of useful ideas.

http://www.wimp.com/mindingmitochondria/
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