Erika`s procedure in Poland

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

One Bathroom and Vit D3

Postby MarkW » Wed Oct 05, 2011 6:03 am

Hello Erika,
Have you seen a Uribag ? (www.uribag.com). Its a Dutch company and they make male and female versions, it may help your problem at home.
As your zinc is fine but D3 still low you could ask your GP for a vit D3 injection as a boost. If this works for you, it may point to an absorption problem. I do not recommend taking things like zinc 'just in case' as it may upset another minerals.
Best wishes,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Erika`s procedure in Poland

Postby jimmylegs » Thu Oct 06, 2011 2:10 am

erika's zinc regimen appears to be working perfectly as is. the 'normal' range in the literature is 11.5-18.5. most ms patients sit in the low end of that range. healthy controls in multiple studies average 18.2 umol/L. erika's 17.9 is great and if her supplementation is keeping her there, that's fabulous. (i'm assuming the units are the same - umol/L - please advise if that is not the case, erika!

however, calcium and magnesium are also needed for d3 absorption. including 1000mg calcium and 500mg magnesium daily, and ensuring good food sources of both, should help. and as i said in our pm chat, make sure you take some of the magnesium with the d3, and some away. magnesium glycinate is a very absorbable form to use (bisglycinate was a bit over the top in my experience). hth!
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Thu Oct 06, 2011 5:24 am

jimmylegs wrote:erika's zinc regimen appears to be working perfectly as is. the 'normal' range in the literature is 11.5-18.5. most ms patients sit in the low end of that range. healthy controls in multiple studies average 18.2 umol/L. erika's 17.9 is great and if her supplementation is keeping her there, that's fabulous. (i'm assuming the units are the same - umol/L - please advise if that is not the case, erika!

however, calcium and magnesium are also needed for d3 absorption. including 1000mg calcium and 500mg magnesium daily, and ensuring good food sources of both, should help. and as i said in our pm chat, make sure you take some of the magnesium with the d3, and some away. magnesium glycinate is a very absorbable form to use (bisglycinate was a bit over the top in my experience). hth!

Yes, correct - my Zinc result is 17,9 umol/L.
OK, I took my first magnesium and calcium today still with 20,000 IU of D3.
From tomorrow I will be taking it like this: back to 5,000 IU of D3 daily, 1000 mg of calcium and 500 mg of magnesium. I plan to have my blood test again at the end of December or beginning of January. I strongly hope it works this time!
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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Erika`s dosage

Postby MarkW » Mon Oct 10, 2011 2:59 am

Hello Erika,
I mis-understood your use of 'just in case'. You are taking Zinc to acheive a blood level of 17.9, this is not 'just in case' for me.
I advise you to keep your Vit D3 at 20k IU/day as you add the Calcium and Magnesium. This means you are changing less viables at one time, which is good science. If staying at 20k IU of D3 is too expensive, try 10K instead rather than just 5k.
Best wishes,
Mark
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Erika`s dosage

Postby ErikaSlovakia » Mon Oct 10, 2011 7:16 am

MarkW wrote:Hello Erika,
I mis-understood your use of 'just in case'. You are taking Zinc to acheive a blood level of 17.9, this is not 'just in case' for me.
I advise you to keep your Vit D3 at 20k IU/day as you add the Calcium and Magnesium. This means you are changing less viables at one time, which is good science. If staying at 20k IU of D3 is too expensive, try 10K instead rather than just 5k.
Best wishes,
Mark

Actually the pill contains 600 mg of vitamin C and as I understood just for marketing uses the company added 5 mg of Zinc. As I knew Zinc is important for pwMS I was sometimes taking the pill. I finished it 2 days ago.
Different people have different advices. What I do is 5000 IU of D3, 1000 mg of Calcium and 500 mg of Magnesium.
As my doctor who checks my thyroid always checks also ma Calcium in my blood, I know it has been normal for the last 19 years. I will see what happens next month. In this case it is not a financial problem - I pay only a little fee for D3, Magnesium and Calcium - the other part pays my health insurance company. (At least something works in our Slovak collapsing health care :sad: )
If this combination is not good enough I will do some changes next month.
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 » Wed Oct 12, 2011 5:03 am

CORRECTION.
I will make the story short as I am too weak and my arms are sore...

My correct Zinc result is 13,59.
I think I should take some Zinc supplement as well.
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 » Thu Nov 03, 2011 1:45 am

2 years after my CCSVI procedure in Poland

Nothing new. I am still getting worse. I had more energy only the first 33 days. My fatigue, cog-fog, sleepiness, balance, vision, dizziness, nausea, headaches and weakness are very big problems. I am still able to walk with one cane. Evenings are better than mornings. My arms are still sore. Weather changes are still a problem as well as heat intolerance. To put my arms up or just looking up or turning my head up is a big NO! NO! - it usually ends up with fainting and vomiting. My nerve pain also got worse - I must take more Carbamazepin. I have to get up once per night to go to the toilet - I didn´t have these night walks before the procedure. I still have tinnitus and many other problems...
However I will never know how would be my health without the procedure. I was also aware the procedure had little impact on SPMS patients. I had my procedure in times where I only read preliminary results of Dr. Zamboni´s 65 patients and I also read results of some patient from Stanford. I also read Dr. Schelling´s book. All informatin from Joan Beal helped me a lot. I had the negative control venography in the same hospital in Katowice about 14 months after my original procedure. Btw. my stent is fine.

I WOULD DO IT AGAIN. I was aware of possible complications. Holly and Radeck had some. I had the luxury to risk it because I already had everything in my life that I wanted.
I only want one more thing before I go: I want to know the world found cure for this cruel sickness. And it means I and many of us will have to suffer much much more. :sad:
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 » Fri Nov 18, 2011 12:24 pm

Wow, Jimmylegs, it works! :-)
After about 6 weeks of 500 mg of Magnesium per day, 1000 mg of Calcium per day and 25 mg of Zinc with only 5000 IU of D3 my D3 levels are finally after 1,5 year going up.
I started in March 2010 and my first results of D3 in my blood were only 7,09 ng/ml.
Results from today: D3: 29,57 ng/ml; Calcium: 2,37 nmol/l; Magnesium: 0,86 nmol/l.
Shall I continue like this? My results 6 months ago were only around 20 ng/ml of D3 (without Zinc, Magnesium and Calcium).
I don´t feel any better but at least the numbers are moving! You know, I don´t expect any miracles with my brain atrophy.
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 » Fri Nov 18, 2011 6:20 pm

that's great erika!!

i would say continue with d3, calcium, magnesium and zinc for sure.

see if you can get the d3 up to 60 ng/ml.

also, i think the units for magnesium are mmol/L yes? ..you still need to get up above 0.90 mmol/L.

did you get a zinc test at all? or is that result still pending? i remember you were down around 13 before. if it's not up to 18 now, then you might need to try to take more than 25mg zinc per day, or increase intake of zinc rich foods. and minimize gluten and phytates. (those also affect magnesium absorption by the way)

going forward, i'd say stick with your regimen but see if you can get some more magnesium-rich food into your diet. as for the d3, take 10,000IU vit d3 per day for another couple of weeks and then, if you can, get a re-test.

once you're at the level you want, then it's time to switch over to a maintenance dose. i suspect the minerals will be fine long term, but you may need to drop to 4000IU vit d3 or even less, depending on future bloodwork results.

i hope as your levels come up that you will start to feel somewhat better! not that we'll be reversing damage but you can get things working that were not before. also once we get these basics optimized, you can go beyond and start looking in more detail at fatty acids etc.

so glad to see your levels moving at long last! keep it up!
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Tue Nov 22, 2011 6:58 am

jimmylegs wrote:that's great erika!!

i would say continue with d3, calcium, magnesium and zinc for sure.

see if you can get the d3 up to 60 ng/ml.

also, i think the units for magnesium are mmol/L yes? ..you still need to get up above 0.90 mmol/L.

Yes, it is nmol/L. When you talk about magnesium. I think I never told you I also have tetania. I was diagnosed when I was 10 and I still get the tetanic attacks sometimes. My question is: Shouldn´t I take even more Magnesium?

jimmylegs wrote:did you get a zinc test at all? or is that result still pending? i remember you were down around 13 before. if it's not up to 18 now, then you might need to try to take more than 25mg zinc per day, or increase intake of zinc rich foods. and minimize gluten and phytates. (those also affect magnesium absorption by the way)

No, I would have to go to the other laboratory. It was extremely complicated last time. I really, really do not have the energy to go through it again. I don´t have anybody who could help me. Even simple phone call is a problem for me. I don´t know when and if I make it. :sad:

jimmylegs wrote:going forward, i'd say stick with your regimen but see if you can get some more magnesium-rich food into your diet. as for the d3, take 10,000IU vit d3 per day for another couple of weeks and then, if you can, get a re-test. ...

Unfortunately I am not able to eat better quality of food because of low disability pension. I just would need little help with Austrian Social Insurance company. But I do not know anybody from Austria :sad:
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 CindyCB » Tue Nov 22, 2011 1:33 pm

Erika,

Just wondering what type of anticoagulation therapy you had after your procedure and you do you still take anything?
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Re: Erika`s procedure in Poland

Postby jimmylegs » Tue Nov 22, 2011 2:19 pm

okay erika

i would say continue as you have been doing then, except yes if you are still dealing with tetany and your serum levels are sub-optimal, and if you can tolerate additional supplemental magnesium (without spending all day on the toilet) that would probably be a great idea. anything that gets your serum mag level up over the 0.90 mmol/L.

what do you think about waiting 3 months now, and then getting another set of tests for d3, cal, and mag. after that, depending on results, you could likely push it up to 6 months before next testing.

what has your doc had to say about these improvements? i hope she is happy!

lastly, if you can't afford different food, can you pick up some epsom salts for your bath? one other thing you could try would be watching your combinations of foods when you eat, to try to maximize absorption of zinc and magnesium. for example don't mix gluten grains or high phytate foods with zinc-rich or magnesium-rich foods, and do eat complementary foods when you take the zinc and magnesium supplements. examples of high phytate foods to avoid when taking your daily zinc and mag pills: wheat, peanuts, soy, and corn. take zinc with a good protein source, perhaps an egg. take magnesium with protein too, and/or low phytate high b-vitamin foods. here is a chart showing vitamin content of different foods and it's broken down so you can separate out the legumes and grains which are the ones that give people trouble with mineral absorption. awesome!
http://www.healthalternatives2000.com/v ... chart.html
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Re: Erika`s procedure in Poland

Postby ErikaSlovakia » Wed Nov 23, 2011 4:28 am

CindyCB wrote:Erika,

Just wondering what type of anticoagulation therapy you had after your procedure and you do you still take anything?

I had my procedure in November 2009. I was injecting Clexane (low moleculare heparin) for 60 days.
I still take 100 mg of Aspirin (life long).
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 Nov 23, 2011 4:47 am

jimmylegs wrote:what do you think about waiting 3 months now, and then getting another set of tests for d3, cal, and mag. after that, depending on results, you could likely push it up to 6 months before next testing.

what has your doc had to say about these improvements? i hope she is happy!

OK.
Regarding my doctor, she thinks my results were OK even last time because our laboratory says, patients should have between 20 to 32 ng/ml of vitamin D3.
Of course, she was happy your recommendation works. She thinks my neurologist should check it. But my neurologist says the neurologist who takes care of MS patients should do it. That neurologist says she cannot do anything for me because she only prescribes DMDs for patients who take it because their CSF are positive for MS and mine was negative. So at the end I manage it with great help of other professionals like you, prof. Simka, Dr. Schelling, thisisms, internet, etc.
Thank you very much for the link!
So I will do the tests in 3 months.
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 » Wed Nov 23, 2011 6:05 am

ah, yes. actually i don't think 20 ng/ml (around 50 nmol/L) would be considered okay from the point of view of preventing osteoporosis. i know in my area they will tell you you're okay if you're in say the 70-80 nmol/L range. but we know from the research out there that a minimum of 100 reduces risk with 125 and 150 being used as target levels by certain folks.

wow they're really passing the buck around over there huh. CSF findings are not the same for all MS patients! that sucks that you can't get DMDs if you want them - a dx is a dx.

you're welcome for the link, and i look forward to seeing your next set of results :) good luck!
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