Erika`s procedure in Poland

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Re: Erika`s procedure in Poland

Postby lyndacarol » Tue Sep 06, 2011 5:37 pm

Erika, as undoubtedly you know, vitamin D3 is made in the body from sunshine falling on the skin in addition to swallowing a tablet. I wonder if you have a problem absorbing the vitamin from the gastrointestinal tract; perhaps the "skin route" would be more effective in raising your levels. Unfortunately, it is now the fall season and the sun is not so strong; perhaps a special artificial light or tanning bed could do the sun's job.

Jimmylegs can probably offer alternatives to taking a vitamin D3 tablet orally. JL, is vitamin D given intravenously – avoiding the intestines altogether?
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Tue Sep 06, 2011 11:39 pm

lyndacarol wrote:Erika, as undoubtedly you know, vitamin D3 is made in the body from sunshine falling on the skin in addition to swallowing a tablet. I wonder if you have a problem absorbing the vitamin from the gastrointestinal tract; perhaps the "skin route" would be more effective in raising your levels. Unfortunately, it is now the fall season and the sun is not so strong; perhaps a special artificial light or tanning bed could do the sun's job.

Jimmylegs can probably offer alternatives to taking a vitamin D3 tablet orally. JL, is vitamin D given intravenously – avoiding the intestines altogether?

Hi lyndacarol!
Yes, maybe "skin route" would help me. As my heat intolerance is so strong it would kill me and I would not suffer anymore :lol: It is impossible in my case. Anyway, we had mostly rainy summer this year in my country. I take oil not tablets.
Actually I use sun bed twice or three times a year.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Tue Sep 06, 2011 11:52 pm

jimmylegs wrote:NHE you know me too well :)

Erika, if you can get a zinc test, please do so. your levels need to be close to the 18 umol/L level. that way you'll know if your regimen is effective.

given the trouble you're having with D3, i would be willing to wager you do not get enough.

to me, 5 mg per day does sound low - i tend to take 25-50 mg per day. my latest product has 15 mg per caplet and i take one with each meal for a daily total of 45 mg.

you should not need to be taking d3 doses in the order of 20,000 IU per day in the long term. IMHO you are throwing money down the toilet if your liver doesn't have zinc around to help process the supplemental d3 intake.

ps i'm female - not everyone gets seinfeld jokes, but i was forced to watch episodes ad nauseum for a decade or so

"KRAMER: Yeah, because she's throwing off my whole sleep. She's got the jimmy legs.
ELAINE: (confused) Jimmy legs?
Kramer raises one leg and judders it in the air, as illustration.
KRAMER: Jimmy leg.
ELAINE: (grasping the concept) Ohh."

Hi jimmylegs!
Seinfeld was my favorite show while my last stay in Canada in 1998.
I made a note about zinc levels. When I see some of my doctors next time I will try to ask to have this test.
Btw I do not pay anything for my D3 oil as my insurance company pays for it however I pay 100% for my Zinc. As I must save money for the nursing home I will have to stop some other supplement to be able to by more Zinc. Even if I worked full time minimum wage is 280 Euro netto per month and majority of people gets that.
Thank you!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Wed Sep 07, 2011 6:24 am

LR1234 wrote:Erika, When are you thinking of going into a nursing home??:( I am so sorry to hear this:( Can you not ask your dr's to let you go on to a trial for stem cells or something? They are testing at loads of sites in Europe.....I hope that things get better for you x

It won´t be this year for sure. The waiting list is longer. And after, it is hard to say - depends how many people die there and how fats - it is for old people and I am not the highest emergency case like old people without family after bad stroke.
They plan the stem cells treatment in Slovakia. Nobody knows when they start but they plan to start only with very bad SPMS cases which is certainly not me. I can still walk. I even started to drive again - only in my town but sometimes I am really able to drive. The only reason for the nursing home is really that we only have one bathroom in our house. This is no surprise for me. It is normal part of my usual life. I only have hoped for veeery long time that my mother will change her mind as my father is disabled as well and there are also other family members. I just never mentioned this problem because it has really nothing to do with CCSVI. All of us have many other problems. Just forget it and simply ignore that. We cannot change it anyway.

I am really too tired and too weak to ask doctors here such difficult questions. Anyway I am not able to travel that much. And then to be honest I do not find stem cells so "entertaining" = easy as my CCSVI journey even I was at the beginning.
Erika
Last edited by ErikaSlovakia on Wed Sep 07, 2011 7:36 am, edited 1 time in total.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Re: Erika`s procedure in Poland

Postby Cece » Wed Sep 07, 2011 6:43 am

Could a chamber pot of some sort help? Then it could be emptied when the bathroom is available again.

Your family must be very stressed.
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Re: Erika`s procedure in Poland

Postby jimmylegs » Wed Sep 07, 2011 8:11 am

Hi Erika, glad you enjoyed seinfeld :)

can you please list (in PM if you prefer) your current supplement regimen, which are covered vs which are not? it might help if you also include price per jar, number of doses per jar, and dosage per pill.

zinc is fundamentally important to a wide array of body functions, and it's cheap by comparison to many other supplements. also you can try to increase intake of foods dense in bioavailable zinc: http://whfoods.org/genpage.php?tname=nutrient&dbid=115 (note they did not include oysters but these are a noted source of zinc, hence the aphrodesiac action)

it's also an option to be careful with your food combinations to optimize zinc nutrition.

for example gluten is a zinc drain and if you can't afford high zinc foods and supplements, you would need to be very careful about consumption phytates and gluten in foods (which is why you see ms diets advocating against grains and legumes).

good luck and keep us posted re the zinc test!
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Re: Erika`s procedure in Poland

Postby lyndacarol » Wed Sep 07, 2011 5:37 pm

Erika – I think Cece has a good line of thinking – a chamber pot may not necessarily be the answer, but is there any other solution, other than a nursing home, that would solve your problem? You say that the home where you live has only one bathroom; could a large closet be remodeled into a half bath (sink and toilet) or WC? Could a second bathroom be built on to the house?

Perhaps there is a government agency or private charity or individual that would help with the cost of such a renovation? Maybe your doctor or the local MS society office could offer suggestions for solving your dilemma.

You are such a strong, intelligent person. I'm sure if you set your mind to it, you can find an answer to this problem.At the very least, your many friends here at this website want to brainstorm with you, offer ideas, and help you.
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Wed Sep 07, 2011 11:55 pm

lyndacarol wrote:... Could a second bathroom be built on to the house?...

Yes, but my mother has been against any kind of changes for 12 years. She only let me pay and organize total reconstruction of this bathroom. She has other priorities.
It is not question of money but if your mother has been against for so many years you can do nothing. Just forget it. If there was another solution I would of course do it.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Re: Erika`s procedure in Poland

Postby jimmylegs » Thu Sep 08, 2011 7:58 am

@LC i don't know about IV D3 i'm sure you can, but optimizing zinc first is more important. you can fire in D3 any way you want and if your liver doesn't have the goods to hydroxylate it, too bad.

for anyone who hasn't read this before, my dose-response to oral D3 tripled after i optimized my zinc level to the upper teens.

hth!
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Re: Erika`s procedure in Poland

Postby lyndacarol » Thu Sep 08, 2011 5:36 pm

Erika, I am so sorry to hear that your mother is against this change of adding the bathroom. Here in the US, a house with a second bathroom is more valuable and more desirable than a house with only one bathroom. I wish she could be persuaded that, not only, would it be more convenient, but it would add value to her house.

I do realize that the older generation resists change, but I hope she could accept the bathroom idea if the alternative is her daughter moving to a nursing home! I am so sorry, Erika.
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Fri Sep 09, 2011 1:19 am

lyndacarol wrote:Erika, I am so sorry to hear that your mother is against this change of adding the bathroom. Here in the US, a house with a second bathroom is more valuable and more desirable than a house with only one bathroom. I wish she could be persuaded that, not only, would it be more convenient, but it would add value to her house.

I do realize that the older generation resists change, but I hope she could accept the bathroom idea if the alternative is her daughter moving to a nursing home! I am so sorry, Erika.


She is also very angry when the bathroom is occupied. My father after his bladder cancer needs toilet very often and needs to spend there really long time. We are often 9 people in the house! She is OK with the idea that I will go to the nursing home. She does not care how valuable is the house. It is typical for older generation here. They know they die first and children should do the rest. She needs all her time and nerves for my sick father, other 3 children, other 2 grandchildren and her very, very disabled brother in other nursing home and then she has her hobbies and some friends. It is normal in my family. I do not want to discuss about this anymore. It is my life, my problems, I must deal with that as much as I can. Non of you can change my life, my country, my family... I used to work and live abroad. I am simply not able since 2004. My MS started in 1996.
We all know MS is our prison. In my case for sure.
Anyway, take it easy, I am not going there next week. My MS is progressing. I must live in my reality and simply accept it. I am not going to finish my life by myself - I believe it is not correct. I know I will be getting even worse there but I will share one bathroom with toilet only with one lady.
Lyndacarol, you cannot save whole world. Much more people do no deserve it and live in much worse conditions.
Do not worry, world will be here...
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Fri Sep 09, 2011 4:52 am

jimmylegs wrote:Hi Erika, glad you enjoyed seinfeld :)

can you please list (in PM if you prefer) your current supplement regimen, which are covered vs which are not? it might help if you also include price per jar, number of doses per jar, and dosage per pill.

zinc is fundamentally important to a wide array of body functions, and it's cheap by comparison to many other supplements. also you can try to increase intake of foods dense in bioavailable zinc: http://whfoods.org/genpage.php?tname=nutrient&dbid=115 (note they did not include oysters but these are a noted source of zinc, hence the aphrodesiac action)

it's also an option to be careful with your food combinations to optimize zinc nutrition.

for example gluten is a zinc drain and if you can't afford high zinc foods and supplements, you would need to be very careful about consumption phytates and gluten in foods (which is why you see ms diets advocating against grains and legumes).

good luck and keep us posted re the zinc test!

Hi Jimmylegs!
Thank you very much! I have been working really hard on the Zinc test. It is a real adventure. To make the story short - my GP will drain my blood next week and one private laboratory will do it for me. The test costs only 1 Euro. I will also PM you. As I checked the list of food that contains Zinc, I am afraid my zinc level will be low. Well, I will see soon and will inform you all.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Re: Erika`s procedure in Poland

Postby jimmylegs » Fri Sep 09, 2011 1:24 pm

this is great to hear, that you have persevered erika!

As I checked the list of food that contains Zinc, I am afraid my zinc level will be low.
tell me about it :S i know that feeling well from my early days... all the things i used to avoid 100%, all in the name of health. i have learned that moderation is the key. ...hyuk hyuk no pun intended... sorry, i seem to be in a mood today :)
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Sat Sep 10, 2011 3:24 am

jimmylegs wrote:this is great to hear, that you have persevered erika!

As I checked the list of food that contains Zinc, I am afraid my zinc level will be low.
tell me about it :S i know that feeling well from my early days... all the things i used to avoid 100%, all in the name of health. i have learned that moderation is the key. ...hyuk hyuk no pun intended... sorry, i seem to be in a mood today :)

Regarding food containing zinc, in my case:
- calf´s liver, braised - never and I refuse to eat it, I was forced once as a child and vomited strongly after, I am sorry but no way
- beef - I never eat beef, I apologize but pork and beef stinks to me, again vomiting experience in childhood, I had in only once in Buenos Aires - they have some special beef - it was very, very tasty
- lamb - no way - the same childhood experience
- venison - too expensive for me and then - I always imagine those beautiful cute animals
- sesame seeds - I love it, I eat it only sometimes - as I know about this information, I can eat it a lot and every day - great
- pumpkin seeds, raw - I did not know about the "raw" - anyway, I think will love it and we have it every September in our garden
- Yogurt, low-fat - I avoid dairy as much as I can - What shall I do in this case? - Do not forget Swank diet.
- Turkey - I love it, I eat it couple of times a week, I have 2 thin slices of turkey ham for breakfast
- Green pees, boiled - no way - again my childhood
- Shrimp, steamed/boiled - I love it so much, but since I stopped to work I cannot afford it
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
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Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Wed Oct 05, 2011 2:55 am

I just got my Zinc result: 17,9 ( it should be between 9,1 and 18)
Well, it means my Zinc is perfect.

Well, this is pretty frustrating. My vit D was only 7,09 ng/ml in March 2010. Since that time I have been taking 5000 IU of vit D daily. It is still only 22 ng/ml. As I posted last time I take 20000 IU daily.
Regarding Zinc I have been taking only 5 mg daily - just in case.
I am going to send a PM to Jimmylegs of course.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
ErikaSlovakia
Family Elder
 
Posts: 1123
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

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