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jimmylegs
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Re: Hello

Post by jimmylegs »

well, see what the docs say. if chemical chelation is out (i get it), maybe you won't have to take as much as 500ml per week via phlebotomy. if you do, it's still probably less than 10% of your total blood volume. hopefully the process will have a useful effect on your ferritin status, but won't negatively affect the other nutritional efforts you've been making. i just read about somebody with serum ferritin in the 4000s. wow.
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Re: Hello

Post by jimmylegs »

time for some emphasis on antioxidants perhaps, yes? with attention to the sugar aspect though, of course!

Gamma-Glutamyltransferase: A Predictive Biomarker of Cellular Antioxidant Inadequacy and Disease Risk
https://www.hindawi.com/journals/dm/2015/818570/

"...elevated GGT levels, as noted by Whitfield and others, contribute to prooxidant activity, particularly in the presence of iron or copper [4, 5]. When GGT levels are elevated, damage to red blood cell membranes can occur causing the release of these potentially toxic transition metals, which can further result in chain, prooxidant reactions [6]. Increased levels of prooxidation can lead to downstream cell, tissue, and DNA damage caused by oxidative and nitrosative stress and the generation of deleterious reactive oxygen species or nitric oxide (ROS or NO) [7]. This combination of factors is observed with increasing frequency in many chronic diseases. Other investigators have added many newly identified GGT-related diseases and conditions to a rapidly growing list that very recently was modified by Sreeram et al. [8] to even include GGT as a marker for oxidative stress in periodontal disease."

i thought of tea as well. it doesn't seem to matter how vaguely i search for ways to deal with ferritin, the literature is always pointing me at hemochromatosis studies BUT this is interesting nonetheless:

Clinical trial on the effect of regular tea drinking on iron accumulation in genetic haemochromatosis
free full text: http://gut.bmj.com/content/43/5/699
"Results—A significant reduction in iron absorption was observed when the test meal was accompanied by drinks of tea instead of water. In the tea drinking group, the increase in storage iron was reduced by about one third compared with that of the control group.
Conclusions—Regular tea drinking with meals reduces the frequency of phlebotomies required in the management of patients with haemochromatosis."
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Zyklon
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Re: Hello

Post by Zyklon »

Jimmylegs, what do you think about boosting vitamin e? My doc recommended more antioxidants because of high ferritin. I don't want to use antioxidant supplements since lots of them contain vitamin C and it is not good for lowering ferritin.

http://multiple-sclerosis-research.blog ... ty-on.html

Ferritin/Tea article is very promising for me. Less coffee more tea.
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jimmylegs
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Re: Hello

Post by jimmylegs »

agree that vit C will not be the right choice with iron accumulation in the picture.

vit E should be fine and don't neglect vit A. i posted a study recently i think under Natural Approach, about the association found between low vit A status and brain volume loss in MS.

for vit E with low C you could look at sunflower seeds, almonds, and if you use oils then sunflower seed or corn oil.

info for quarter cup servings:
sunflower seeds http://www.whfoods.com/genpage.php?tnam ... nalprofile
almonds http://www.whfoods.com/genpage.php?tnam ... nalprofile

i remember at one time looking up whether any plant oil had all the different components of vitamin E, ie all four tocopherols and all four tocotrienols, and the only one i found at that time was corn oil. which led to a fruitless search for non gmo corn oil but that is another story/pipe dream.

i remember reading as well that coconut oil had some of the desirable vit E fractions, but i would have to dig around to find out anything about suitable intakes.

if you end up going for a vit E supplement, do select a natural source, natural ratio E8 complex. (the 8 stands for the 4 tocopherols and 4 tocotrienols). scare tactics about vit E supplements stem from a trial (SELECT) in which synthetic (one way to tell - synthetic label will say dl-alpha tocpherol vs just d-alpha tocopherol) isolated alpha tocopherol was used in an attempt to reduce cancer risk. the subjects' elevated alpha tocopherol levels altered the ratio with other vit e fractions such as gamma tocopherol. serum gamma vit E (anti-proliferative/anti-tumorigenic) levels dropped and bingo, had to halt the trial due to increased, not reduced, cancer risk. balance is the key. and that is also an example of the superiority of food (or at least the value of being highly informed when selecting a supplemental vit E product).

for vit A with low C there's always good old cod liver oil! just have to make sure you include the contribution it makes to daily d3 intake into your overall calculations :)
http://whfoods.org/genpage.php?tname=dailytip&dbid=95
no specific recommendations re any other vit A supplements. except re cod liver oil i personally just get little gelcaps i can't deal with the liquids :S

zinc is another valuable antioxidant. high zinc *SHOULD* help suppress elevated ferritin but i think i said before that i can't be sure of that suggestion, not being clear on *why* your ferritin levels are so high.

selenium is yet another beneficial antioxidant nutrient and you can get plenty of that via brazil nuts. supplements are ok but not as good. if you must use them, i think selenomethionine is the form you'd be looking for.

so i think where we might be going here is 1/4c per day of mixed sunflower seeds, almonds and brazil nuts, maybe with a bit of coconut thrown in for good measure! bet that would be nice with some dark chocolate covered goji berries :D great little trail mix snack.

hope that helps :D enjoy your tea!
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jimmylegs
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Re: Hello

Post by jimmylegs »

check it out i don't know what exactly prompted me to search almonds and GGT together, but i did and found this interesting (rat) study:

Almonds Inhibit Dyslipidemia and Vascular Dysfunction in Rats through Multiple Pathways (2014)
http://jn.nutrition.org/content/144/11/1768.full.pdf
"Effects on [high fat diet] HFD-induced vascular dysfunction. In 4 wk the HFD substantially increased the concentrations of [uric acid] UA, phosphorus, and ALP by 0.9-, 1.1-, and 4.6-fold, respectively, compared with the [normal diet] ND. Almond treatment inhibited this increase as shown in Figure 3B, with resulting concentrations that were not different from those in ND-fed rats. GGT was 2-fold higher with the HFD, whereas this increase was completely inhibited in the almonds + HFD group, and concentrations were not different from those in ND-fed rats (Fig. 3B)."

lol i just happened to comment out loud 'that is nuts' without at first thinking *literally* nuts hahaha

wouldn't it be interesting if adding almonds to diet helped correct high UA, ALP and GGT in one fell swoop in humans as well. time for an informal trial perhaps? n=1?. would have to dig into methods though, figure out equivalent human intake. might be weirdly high or something.

in the meantime i think i shall go and enjoy a few almonds myself :D
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Zyklon
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Re: Hello

Post by Zyklon »

Small updates :)

Dietist said good progress on total and bad cholesterol, triglycerides still high, more weight training to increase muscles and decrease fat. She recommended less fruits with high sugar and less carbs. She checked my blood sugar levels and no diabetes so far. Diet is in control, it is good. I just need some weight training. Waiting for ferritin and better fever.

Hematologist said 2000 ng/mL ferritin was nothing to worry in short term but must be treated. He wanted mri scans for my liver and heart to check iron levels, iron related and other usual blood tests. He suspects non alcoholic fatty liver and hemochromatosis but not due to iron supplement, something inflammation and CIS related. He said high ferritin might be related with acute body response and phlebotomy would be the treatment. Frequency will be decided after tests. He thinks once a week 300-400 mL will be fine as long as I can handle it. He warned me about increasing my D3 level more because of calcium levels and possible kidney problems. I will stop at 65-70 ng/mL. He supported magnesium supplement. I asked him about my fever and he said most likely Rebif side effect. 37.8 max so far, easily manageable. Supplement regimen and almost everything (except cholesterol and ferritin) good. Blood-wise very good progress.

I shared my liver enzyme levels with neurologist and he said he wanted to see the increase trend and asked for another test 1 week later. Levels are not alarming but must be monitored. I want to use Rebif for as long as I can. I need more research on liver health.

I have no idea about my past. So many years with bad health and habits. I don't know if something is before or after CIS. Maybe I have been fixing my 15-20 years old problems. Maybe MS is my luck and because of it I will dodge a cancer. MS is not a small price but it is a small price when you compare it to some worse diseases. Take care of yourself and good luck. Stay strong be positive ;)

Current supplement regime:

D3 3000 IU daily after breakfast with 100 mg magnesium (trying initial magnesium dosage)
Solgar Advanced Antioxidant Formula 1 tablet daily after midday snack (green light from docs as long as I watch my iron intake)
B12 1000 mcg and B Complex 50 on every tuesday after lunch (trying maintenance dosage)
Zinc 22 mg every thursday before lunch (trying maintenance dosage)

Vitamin A, E and K tests soon. I guess everything will be messed up with phlebotomy treatment but I am not scared. It is about learning to use supplements effectively with monitoring. Once I know it, I can make my levels optimal anytime I need.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
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jimmylegs
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Re: Hello

Post by jimmylegs »

progress sounds good!

good that you'll be maintaining and monitoring that previously-low zinc. recall that zinc has been demonstrated to help lower high triglycerides, and *should* help keep ferritin down when taken in supplement form (i am again unsure if that holds if hemochromatosis is in the picture).

note also potential consequences of low zinc wrt iron in particular:

Zinc deficiency-induced iron accumulation, a consequence of alterations in iron regulatory protein-binding activity, iron transporters, and iron storage proteins
http://www.jbc.org/content/283/8/5168.full.pdf

i like your attitude about the small price. i've said it many times; i view what i've learned about how to pursue health, since getting this dx, as an excellent silver lining!!!

re regimen: can you remind me as to the form of your 100mg magnesium supplement? if it's a high quality soluble absorbable form, good. my strong recommendation echoes the one given me years ago by a helpful pharmacist - take half your daily dose *with* the d3 and the rest at a completely different time of day.

other than that things are looking great :) will be interesting to see how the exercise and nutrient maintenance programme performs in conjunction with phlebotomy.

re liver health:
The Use of Selected Nutrition Supplements and Complementary and Alternative Medicine in Liver Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4239999/

although it doesn't have a subsection on zinc and nafld, the content talks about correcting the de facto low zinc in ald, and associated benefits. and we know from your tests that your zinc started out low no matter the cause (and it's the excess iron that makes the most sense to my mind even though i haven't found any evidence to support that idea so far)

Hypovitaminemia A in idiopathic hemochromatosis and hepatic cirrhosis
http://www.karger.com/Article/Abstract/198153
"In both alcoholic and non-alcoholic cirrhosis, vitamin A and RBP levels were very significantly reduced, whereas a significantly low zinc was observed only in the alcoholic cirrhosis group. In idiopathic hemochromatosis, vitamin A values were significantly lower compared to normals, whereas serum RBP levels were normal and serum zinc was very close to that of the controls."

unfortunately i can't check full text for that one to see levels in the groups being compared. maybe they wouldn't have considered the levels you started with to be low either.

this came up too:

Association of serum zinc levels with liver function and survival in patients awaiting liver transplantation
https://link.springer.com/article/10.10 ... 015-1334-7
"Actuarial survival free of liver transplantation was reduced for low-zinc patients ... compared to patients with normal zinc levels ... Reduction of zinc levels for patients on the transplantation list resulted in a 28.3-fold increased risk of death/liver transplantation ..."

will be interesting to see when the next results are in!
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Zyklon
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Re: Hello

Post by Zyklon »

Solgar Magnesium Oxide (133 mg) with B6 (only 8.3 mg)

Yesterday I did not sleep well because of fever. Today leg weakness and balance issues. Most likely low blood sugar related aswell. It looks like my body is much more sleep sensitive now. I need to get rid of my fever for comfortable sleep because it messes up wake up time, meal times, energy, mood. During day it is absolutely no problem. I guess it will take some time for my body to adapt.

Weird day today, docs tomorrow.
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Pain! Oh let the bullets fly, oh let them rain
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jimmylegs
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Re: Hello

Post by jimmylegs »

hi again okay so that you're aware, magnesium oxide is the bottom of my list.

i've met people who report good stress relief when using that form but to my mind it's a laxative and barely meant to be absorbed enough to say so. the more you take, the faster it's out of your system. one step up, magnesium citrate. i use this sometimes but right now don't have any in the house or anywhere else.

there are a few different higher quality forms and my personal favourite is magnesium glycinate. as distinct from magnesium BISglycinate, which was too much for me.
the main reason i like magnesium glycinate is that it is highly soluble and absorbable. it stays with you. your body has time to absorb it in the lower intestine, where it's supposed to be absorbed.

i feel like with this newer form, you don't actually need to take as much as some older nutritional protocols recommended. for example i've made an effort to maximize magnesium in diet and have since noticed that i can't take more than one magnesium glycinate pill per day (delivering 180mg elemental magnesium) without feeling some sluggishness in large muscles.

meanwhile when i first started out taking magnesium i had no idea, used magnesium oxide and was following recommendations which i can't remember at this stage but which were on the order of 800 - 1200 mg per day. if my xp is any guide, anyone who tries that much intake using a magnesium oxide supplement had better set up camp in the toilet, or suffer the consequences of not taking suitable precautions!
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Re: Hello

Post by jimmylegs »

updates?

an fyi as you work around to next zinc test. levels can fluctuate over the course of the day

https://www.cabdirect.org/cabdirect/abs ... 9721403585
"Serum Zn was greater than the mean from 10 am to 10 pm and significantly below the mean between 2 am and 6 am during 56 h."

http://ajcn.nutrition.org/content/41/4/689.short
"A "U" shaped curve was derived; we found peak Zn levels at 9:30 AM, a midtrough at 8 PM and a peak-trough difference of 19 micrograms/dl. "
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Zyklon
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Re: Hello

Post by Zyklon »

Hi jimmylegs, I have lots of updates.

Thyroid is all OK. Urine is all OK. Complete blood count is all OK.

Ferritin is surprisingly down to 1400 from 2000+ without philobotomy. Such a decrease in 28 days is unreal. I suspect antioxidant supplement works against ferritin. I will start philobotomy and continue antioxidant supplement.

Lower abdomen ultrasound is all OK. Very minimal fatty liver and I am sure I do great progress with it. I am still on 3 x 44mcg Rebif with 500 mg paracetamol 1 hour before and 600 mg ibuprofen 2 hours later. I am going to decrease ibuprofen by 200 mg every 15 days to help my liver and try to get rid of it completely. Wish me luck with side effects. Liver enzyme changes in 28 days:

AST 44 -> 79 U/L (Increased)
ALT 167 -> 162 U/L (Decreased)
GGT 127 -> 96 U/L (Decreased)
ALP 62 U/L (In limits)
Bilirubin 1.23 mg/dL (1.2 is limit here)

My body temperature is much more stable now. I no longer spray myself with water or carry thermometer. I am much more physical, running and cycling at 30+ Celcius degrees for 20-30 minutes.

Once or twice a week, I have very minimal numbness in my feet fingers that I don't care. Some days I have fatigue but I can easily manage it with Arcalion (Sulbutiamine) and more coffee. I have discovered cooling my neck makes me feel good. Vagus nerve is an incredible thing.

I will get minerals/vitamins/cholesterol/liver check at the end of this month. Next week heart and liver MRI.

Some minor problems that I really don't care:

Some days I wake up midnight. Mostly the days that I take Rebif because it temporally increases my legs stiffness for night
If I miss a meal, my energy level suddenly drops, much worse than pre-CIS
Total sleeping time increased, 30-60 minutes more, 7.5-8 hours
Fear of getting an infection in public

Current regime:

3000 IU D3 + 133mg magnesium oxide daily after breakfast
Solgar Advanced Antioxidant daily after snack 10:30 AM
1000 mcg B12 + B Complex 50 every tuesday after lunch
22 mg zinc prolinate every thursday after lunch
Solgar Advanced Antioxidant daily after snack 16:30 PM
133mg magnesium oxide daily after dinner

Take care, stay healthy ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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jimmylegs
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Re: Hello

Post by jimmylegs »

hi good to hear your serum ferritin is coming back in line. makes sense for antioxidant plus zinc to be helping. although i still wonder if there's a genetic component in the mix. here's hoping you can push it down below say, 200!!
i'll have to read back over the reference ranges for liver enzymes to get a sense of progress; glad alp is within limits. will be nice if you are able to decrease ibuprofen without facing issues associated with rebif.
on the supplement front, magnesium timing wrt d3 looks good; keep in mind that mag oxide is not best quality.
if you think there might be some merit to a comprehensive multivitamin/multimineral for active people specifically, could be something to consider - keeping in mind of course that then you'd need to guard against excess of any single thing like b6 for example.
overall a very nice update, will check in again in a few weeks. looking forward to next tests - especially serum zinc in contrast to serum ferritin, and serum mag in comparison with d3.
great to hear you are able to be active, enjoy!
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Zyklon
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Re: Hello

Post by Zyklon »

Jimmylegs what do you think about milk thistle supplements? Good for liver? Any cross interactions? Thank you.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
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jimmylegs
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Re: Hello

Post by jimmylegs »

heya, jury appears to be out on that for now. i haven't read up on whether chronic use has any undesirable consequences.

Milk Thistle for Alcoholic and/or Hepatitis B or C Liver Diseases-A Systematic Cochrane Hepato-Biliary Group Review with Meta-Analyses of Randomized Clinical Trials (2005)
http://bit.ly/2r2cfhZ
MT does not seem to significantly influence the course of patients with alcoholic and/or hepatitis B or C liver diseases. MT could potentially affect liver injury. Adequately conducted randomized clinical trials on MT versus placebo may be needed.

Milk thistle for the treatment of liver disease: A systematic review and meta-analysis (2002)
http://www.sciencedirect.com/science/ar ... 4302012445
"There were no differences in serum alanine aminotransferase (ALT), aspartate aminotransferase (AST), or albumin levels, or prothrombin times, among participants assigned to milk thistle compared with those assigned to placebo. The only statistically significant difference was a greater reduction in alanine aminotransferase levels among patients with chronic liver disease assigned to milk thistle (−9 IU/L, 95% CI: −18 to −1 IU/L; P = 0.05), but this reduction was of negligible clinical importance and no longer statistically significant after limiting analyses to studies of longer duration or of higher quality."
"Data are too limited to exclude a substantial benefit or harm of milk thistle on mortality, and also to support recommending this herbal compound for the treatment of liver disease."

other than when eaten as part of healthy nutrient dense diet, i tend to consider herbals a 'first aid' kind of thing for short term therapeutic not long term preventative or maintenance use. i actually saw a web site one time suggesting that depression could be the result of 'st john's wort deficiency'. sorry, st john's wort is not and has never been 'essential'!

have i spent a ton of time on the medicinal merits of plants? absolutely.

but for liver health i would personally make sure zinc was staying up where you had it - that 115 number looked good to me! will be very interesting to see how your zinc levels are after taking weekly top ups for a while.

i'd also keep an eye on my intakes of niacin (b3) to guard against excess and potential for liver damage there, but i don't have a safe daily amount at my fingertips - or off the top of my head - at the moment! that said, i've taken daily b50 complex for ages in the past and have never encountered any liver issues (but i wasn't checking for them either).
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Re: Hello

Post by Zyklon »

My own milk thistle trial for one month then. If liver levels get better, I continue milk thistle. No alcohol, no junk food, low fat intake, come on my liver, you can do it :)

I can't wait for new tests. I think about using Solgar VM 75, 3 tablets every week. It will replace B vitamins, zinc and give lots of new things that I may be deficient.

Possible new regimen:

3000 IU D3 + 100mg magnesium citrate daily after breakfast (Old: 133mg magnesium oxide)
Solgar Milk Thistle daily after snack 10:30 AM (Possibly for only 1 month)
Solgar VM 75 on tuesday/thursday/saturday after lunch (Kinda like using B30 everyday, plenty of everything except D3 and mag)
Solgar Advanced Antioxidant daily after snack 16:30 PM (I think it helps me with liver enzymes and lowers ferritin)
100mg magnesium citrate daily after dinner (Old: 133mg magnesium oxide)

I will have a phlebotomy soon. What do you think about mineral/vitamin tests before it? Meaningless? Good to see if my current regimen works? Tests 1 week after phlebotomy to have a new starting point and tests again 45 days later?

Still learning and it looks like there will be always something to learn. I did great progress with minerals/vitamins. Next areas to focus will be meditation, stress management, improving sleep quality.

Thanks for the information.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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