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Re: Optic Neuritis and possible cause for MS

Posted: Thu Nov 14, 2013 2:56 am
by NHE
Celeste485 wrote:2 months after her diagnosis her MRI is the proof the fat works because her lesions from spine disappeared and the others were healing, and there was no new lesions.
MS lesions come and go on their own. That's why clinical trials have to include a large number of people in order to determine if a treatment under consideration has any benefit. Otherwise, any improvement in just one patient, or even a small group, could be due to random chance.

Re: Optic Neuritis and possible cause for MS

Posted: Thu Nov 14, 2013 7:43 am
by jimmylegs
Jimmy was always saying, take zinc supplement and I was overexcited about finding the cause of ms that I ignored him. He was right!!!
Ms is iron overload disease. In iron overload the iron either deposits itself in organs or is excreted through sweat, hair, and intestines. In Celiac, RA and MS all damage happens where the exits of excess iron are. You don't have iron deficiencies, you have iron overload. That Ferrous Fumarate was made to be more absorbent, it is super absorbent but it's not showing on tests as such. And I guess zinc can help a lot. I started giving my daughter high iron foods instead of the opposite. Now, how I can treat her if the test is so screwed up? What doctor is going to believe me? Jimmy, how much zinc should I give her safely without any additional stress on her? I've given her calcium, Omeprazole and almond milk and she is doing fine but after 2 days for high iron foods who knows, I will have to add zinc slowly but steadily. This is why we are feeling like crap after eating too much vitamin C and sugar. They both help to absorb that poison. God help us.
hey there, please go back and read these posts again

balancing zinc and iron
http://www.thisisms.com/forum/introduct ... ml#p217468

iron dysregulation in zinc deficiency
http://www.thisisms.com/forum/introduct ... ml#p217482

gummy supplements, thoughts on a dietary approach
http://www.thisisms.com/forum/introduct ... ml#p217483

your daughter is iron deficient (ferritin = 5.. FIVE!!!) you still need a zinc result, without delay. you can consider having them run a full iron panel, if you are not satisfied with the ferritin info alone. serum targets for ferritin and zinc (and magnesium) are provided in the 'balancing zinc and iron' post above.

for review.. OLD chats on iron. terry was iron deficient and scared of it for the same reasons you are: http://www.thisisms.com/forum/natural-a ... 18578.html i suspect you will really enjoy the meanderings of this old thread :D

i originally took iron to correct deficiency. i was aware of no consequences at all, until years later i finally realized that i must have been messing with my zinc-iron balance, EVEN THOUGH I KNEW BETTER. when i took iron without zinc, and my zinc status was already on the low side, i would notice the effects (specifically, on my 'jimmy'legs!). doesn't mean i didn't need iron. just meant i needed more zinc in the mix.

also of interest, since i started working on zinc deficiency, my iron levels are much better in general. i think I must have been a poster child for zinc deficiency iron dysregulation: http://www.thisisms.com/forum/introduct ... ml#p217482
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/cgi/content/full/283/8/5168

Re: Optic Neuritis and possible cause for MS

Posted: Thu Nov 14, 2013 10:39 am
by jimmylegs
ps FYI adding supplemental calcium to a system with magnesium and iron deficit will throw an imbalanced system even further out of whack ... too much calcium and not enough mag or iron.. not a good scene..

Re: Optic Neuritis and possible cause for MS

Posted: Thu Nov 14, 2013 1:39 pm
by Celeste485
I just got back from hospital, I had to take my daughter to ER because last night she wasn’t well. After the high iron diet in the evening she couldn’t even lift her leg, she was so tired and she had brownish color on her face. She slept but I couldn't, I was checking up on her all night. In the morning she was fine. Then I got scared even more, because she has anemia and after she eats iron rich foods she gets sick like she is unable to absorb it? I thought maybe she had a liver failure so I had to take her to ER. Her liver is fine and she does have anemia. How the hell I am supposed to treat her when she gets sick after eating iron rich foods?
I can only give her heme iron supplement but I don’t understand why the body rejects the iron. I don’t know what is really happening to her. And what if the anemia won’t cure? Or what if she gets worse? They’ll blame it on MS. I am at loss right now and I have no idea what to do.
Her results are WBC 3.9L, RBC 4.07L, HGB 10.7L, HCT32.5L, Globulin 3.7H, ALP 60L, Iron binding 459H, % Iron Saturation 4L, Transferrin 327.8, Lipase 19L. Zinc or Magnesium weren’t measured. What all of this means?

Re: Optic Neuritis and possible cause for MS

Posted: Thu Nov 14, 2013 1:59 pm
by jimmylegs
ugh sorry to hear you are having a rough time :S

GET. THE. ZINC. TEST! asap. need more data to decide on best next steps.

I can't find a study that measures specific zinc deficiency effects on the iron panel in patients, so I can't tell if your girl's results say anything about zinc one way or the other. just need the zinc result. if her iron is off in part due to zinc deficiency, it's just not safe to add only iron. will just make any potential zinc issue worse. need more info no two ways about it.

Re: Optic Neuritis and possible cause for MS

Posted: Thu Nov 14, 2013 7:27 pm
by Celeste485
I am going to have the test done, but it will take a while. We are going to see podiatrist and then new doctor and I have to check myself as well. My tests were always normal too and the way I was feeling the last few years, it felt like they weren’t mine. And I eat the same foods with my daughter and I feel similar to her. My blood pressure is high again, I am getting bumps on my tongue, my hair look rusty, I feel like an old pipe.
As far as my enemy goes, Ferrous Fumarate, guess what I found today. It is used in birth control pills - a natural born killer. If a baby is born after, the baby will be deformed. If ingested too much it can cause hemosiderosis associated with iron overload, in kidneys it’s called paroxysmal nocturnal hemoglobinuria, and hemosiderosis in fatty liver independent of any transfusions. Someone wants to feed their babies with this evil? Here is your opportunity; one 325-mg tablet contains 33% of elemental iron so if your cereal has 90% of iron then that would mean if you eat cereal just once a day you should never become anemic. And yet so many people have anemia. And the more people eat cereal the more anemia they have. It looks like it’s designed to bring the worse in you. And it will deform you too! I would like to see a flour that I can use in baking and cereal without added iron, can someone please tell me where can I buy it? And if I need extra iron, I would take the pill.

Re: Optic Neuritis and possible cause for MS

Posted: Thu Nov 14, 2013 7:46 pm
by Celeste485
NHE, lesions don't just disappear, they heal. To heal they have to have some iron to do so. So what kind of iron is there that pops instead of doing it's job? Looks like secondhand. And diet can change that but can also make it worse. If more of that iron gets there, it will continue to pop and it will deform you. Trust me, there is no coincidence we have more and more diseases nobody knows about. I've seen on line test of a guy who is anemic but his Ferritin level is 2200 and I think they're only measuring up to 230. With levels like this, they would need to update the testing, wouldn't you think? A woman has a Celiac disease, stopped eating added iron (breads, pastas) and feels like new. Another one has RA, stopped eating added iron and feels much better too. Terry Wahls did the same with MS. How can giving up carbs or added iron help these 3 women that's the real mystery.

Re: Optic Neuritis and possible cause for MS

Posted: Fri Nov 15, 2013 6:20 am
by jimmylegs
celeste, gluten in typical breads and pastas depletes nutrient levels, including iron and zinc in particular.

could be that the iron fortification is not properly utilized when zinc is also affected, given the problems found with iron handling when zinc status is poor.

NUTRITIONAL STATUS AND MICRONUTRIENT LEVELS OF CHILDREN WITH CELIAC DISEASE BEFORE AND AFTER GLUTEN FREE DIET
http://www.theprofesional.com/article/2 ... f-1056.pdf
"Low serum iron was almost universal in celiacs. It was observed in 95% of Celiac children. In our study, mean serum iron in untreated celiac disease was 22.7ug/dl as compared to 86.8ug/dl in healthy controls... In our study, mean serum iron rose to 11 66.8ug/dl in Celiac children after 6 months of strict gluten free diet without iron therapy. This could be due to better absorption of dietary iron or stoppage of blood loss if any"
(could also be due to improved zinc status allowing iron to be properly regulated - refer back to zinc deficiency impacts on iron transporters etc in the study posted previously)
"Zinc was the mineral found deficient in majority (68%) of newly diagnosed celiac children. Mean serum zinc level was 58.85 ug/dl in celiacs as compared to 81.47 ug/dl in healthy controls. There was a statistically significant increase in serum zinc after six months of gluten free diet without any mineral supplement (p value <.05)."
(I would suggest levels closer to 120 to minimize disease risk BUT, I am not even sure if the relevant studies have been done yet. i'm thinking of the one they did for vit d3 and found that risk for certain diseases was lowest in the highest quintile (100nmol/L and up) for serum d3)

a couple more studies..

Iron Deficiency in Coeliac Disease Is Mild and It Is Detected and Corrected by Gluten-free Diet
http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract

Efficacy of gluten-free diet alone on recovery from iron deficiency anemia in adult celiac patients
http://www.nature.com/ajg/journal/v96/n ... 0123a.html

I would like to see a study that evaluated whether boosting dietary intakes of zinc- and iron-rich whole foods, in combination with reducing gluten intake (along with the other known nutrient-depleters) would serve better than going gluten free alone.

Re: Optic Neuritis and possible cause for MS

Posted: Fri Nov 15, 2013 8:30 am
by Celeste485
It’s not gluten, it’s iron. Once Celiac has the intestinal damage it's hard to get and keep the nutrition level. Maybe gluten is not good either, I can't say, but the damage itself it's not done by gluten, it's the job of the iron.

In Denmark they don’t want our cereals: “When the law on additives took effect in 2004, Kellogg, the American cereal maker, applied for 18 products, including breakfast cereals and cereal bars, some popular for generations in the United States. All 18 were refused because they were enriched with excessive levels (by Danish standards) of iron, calcium, vitamin B or other supplements”.
In Sweden they have 42% less fortification than here, they know all about iron overload and want to lower the fortification even more but some of their products are made from US wheat flour which is heavily fortified so that may not be possible. Believe it or not the Swedes know that iron causes problem because all the people with iron overload admitted taking iron supplements either with vitamins or alone before they got sick.
Some guy took Ferritin Furminate supplements for anemia and developed...iron overload.
My daughter has iron overload and the only reason why her ferritin is low is because of her monthly cycle. The hemoglobin is leaving every month, so the Ferritin fills the need and that’s why the level is low. But people who don’t bleed have the Ferritin level high or normal. I have the same thing.
Last night I developed cough, I though I will have to go to the hospital myself but then I coughed up some disgusting phlegm and fell asleep after that. When I woke up at 5 am I was burning all over. My legs, my back, my hands, but only skin, I didn’t feel anything on the inside. I am eating the same diet my daughter is very high in iron, I was so preoccupied with her that I didn’t pay attention to myself. I have hemochromatosis and both me and my daughter have the gene. And I am going to the doctor today.
And if you have MS then we are family, you have the same gene in you too. Test yourself, you are young, do you want to feel better or not? My brother lost his hair, he has eczema on his head and he has high iron and that's how it's getting out. But it leaves ugly marks behind. My daughter after shower gets hives, this is how she removes the excess iron. When you go outside in hot weather, why do you feel so bad? Because its the iron on your skin that causing you to burn. Please, if there ever was a time to trust someone other than you, this is the time.

Re: Optic Neuritis and possible cause for MS

Posted: Fri Nov 15, 2013 8:45 am
by jimmylegs
read very carefully... lots of interesting dynamics going on

Re: Optic Neuritis and possible cause for MS

Posted: Sat Nov 16, 2013 7:34 am
by Celeste485
“Celiac disease is linked to a very rare genetic disease of iron overload, called hemochromatosis. (Symptoms include chronic fatigue and abdominal pain, among others.) People with celiac disease who also have hemochromatosis may not know it because the malabsorption of celiac protects them from accumulating too much iron—until they go gluten free. As they change their diet, their intestines heal and their iron levels can rise dangerously.”
This disease is not rare. It’s underdiagnosed because many people who have it, have anemia. Why anemia? If you eat normally, why would you have anemia? Because most of the iron is not being stored. And if not, then where does it go? Only real doctors can diagnose a disease in the first place. The rest of doctors are mutants. Real doctor cares about the patient and if it cannot diagnose you on the first try then it will ask you to do something like going on high iron diet and describe how you feel. If you feel lousy you have iron overload. If you feel good, you don’t. He/She may also look at your diet and monitor your hemoglobin. If you eat normally and your hemoglobin is not going up, you have iron overload. If the hemoglobin goes up slowly but you feel lousy, you may still have iron overload. If the hemoglobin goes up, you don’t have it.
I took my daughter to the hospital because I know her liver is in trouble. Remember, she got wobbly after taking antibiotics. Antibiotics are metabolized by liver, if your liver is sluggish, you are going to feel it! Then after being diagnosed with anemia, I fed her high iron diet, and she wasn’t feeling good and me neither. I am going to test myself on Monday but to feel better for now I do the same she does. And this is what we are doing now. We started yesterday. I eat different things from her but the same principal applies.
In the morning my daughter had chicken and green beans with a small piece of toast. I gave her vitamins with exception of calcium because calcium will block the heme iron from chicken so I gave a small coffee to block the beans and bread and sugar from the creamer. Coffee and tea block non heme iron but don’t impact the heme absorbtion.
For lunch she had sandwich with sliced turkey, lettuce, cucumber, apple, rice puffed chips for snack, 2 slices of cheese. When she eats the chips during her break, she doesn’t have to do anything because there is no iron in them. When she eats lunch, she has to eat everything all at once and then eat the cheese to block the non heme iron.
After school she comes home and eats small snack and then takes calcium supplement with it to block any iron from sipping through.
1-2 hours before dinner she takes iron supplement different from Ferrous Fumarate. I have already increased it to 1pill/day. She was sick from it before and now she is doing fine.
She eats dinner, and has a tea with it to block non heme iron.
Later she can have snack and have some milk with it to block non heme iron.
Before bedtime she gets a slice of cheese and omeprazole. Cheese and omeprazole stops all iron from absorbtion so I have to give it to her when she is not eating any meat because we want that meat to be absorbed.
And yesterday as soon as I gave her the supplement she was flying, the energy came back. She still looked weak, her colors were off, but her energy? After just one day of blocking of non heme iron.
And me too. I slept all night without any burning. I am on the same diet.
So, if you don’t want to get tested, do this diet test for 2-3 days. Eat everything you like but selectively block your non heme iron and don’t block your heme iron. To do that you should remember that calcium, milk and antacid will block heme iron, tea or coffee will not. And when you have pancakes with syrup take antacid or drink milk. I drink unsweetened almond milk because cow’s milk has sugar and that helps the non heme iron too. But have a cake and have a Prilosec after that and see what happens. If after 3 days you feel better, you have iron overload. If you don’t feel better, you don’t. And don’t skimp on food. Eat forbidden foods. This is only test.
Remember to let the body absorb the heme iron from meats because your body needs it. Heme iron is good for you. And don’t eat too much beef because for some reason the beef can go either way and you don’t want that. You only want the meat that goes into your blood not into your body. I can guarantee you, you will feel different just after one day and that’s after eating all bad-for-you foods as well. And then you report it. Alcohol helps absorption of iron so don’t drink anything. Do you remember my wine? Pure evil.
After you finish the test we are going to talk more about this. I have a lot more to tell.

Re: Optic Neuritis and possible cause for MS

Posted: Sat Nov 16, 2013 8:47 am
by jimmylegs
http://www.uptodate.com/contents/hemoch ... the-basics
Ferritin levels greater than 300 ng/mL in men and 200 ng/mL in women support a diagnosis of hemochromatosis.
your daughter's level was 5, right?

IF her iron deficiency is related to zinc deficiency, then of course high iron diet will make things worse UNLESS it is simultaneously a high zinc diet.

on the flip side, blocking part of the iron intake (as long as zinc was not also blocked) could also help to correct the iron-zinc imbalance.

would be interesting to do some math and look at the dietary iron zinc balance in a mixed heme- and non-heme iron diet, compared to a preferentially heme-iron diet. I strongly suspect that zinc is far better represented in the heme-iron category..

Re: Optic Neuritis and possible cause for MS

Posted: Sat Nov 16, 2013 11:50 am
by Celeste485
And this brings us to another possible problem:
From Pubmed:
"Although hemochromatosis and pathological situations due to chronic iron overload have been extensively described, there is little information about the influence of iron on other trace elements in the cell. The aim of this study was to investigate changes in the concentration of zinc, manganese, and copper in the liver, spleen, and brain of rats after iron overload. Iron overload in Wistar rats was achieved by iron-supplemented diet or by intraperitoneal or intravenous injection of polymaltose iron. Iron, zinc, manganese, and copper were determined by atomic absorption spectrophotometry. Iron overload in rats, regardless of the route of its application, resulted in an increase not only of iron but also of zinc and manganese in the liver and the spleen, whereas the content of these metals in the brain did not change. The copper content of the liver, spleen, and brain remained the same after iron overload. The increase of zinc and manganese in the liver and spleen following iron overload was probably a result not only of increased intestinal absorption but also of increased uptake from the cell. This is also supported by the fact that no increase in the zinc and manganese concentrations occurred in the brain since, despite iron overload, the iron content remained constant.
Jimmy, if you have iron overdose and your zinc is low, you may look for it in your liver and start mining. Stop taking the zinc supplements until you know more. Now I have another problem to worry about. But anyway, good job bringing the subject up.

Re: Optic Neuritis and possible cause for MS

Posted: Sat Nov 16, 2013 6:00 pm
by jimmylegs
hmm, possible indeed. but if I were to be participating in that rat iron overload study, they'd need to lace my food with 3500mg of elemental iron per day (200x the recommended daily amount!) for 3 months to match the amount they dosed the rats.

luckily no mega-supplement-induced iron overload, or hemochromatosis, or zinc-deficiency induced iron deposition here.. bloodwork all looks good, fortunately.

you might find bethr interesting to chat with, she's got a lot of family history with iron issues - plenty of elevated serum ferritin to go with it, mind you..

Re: Optic Neuritis and possible cause for MS

Posted: Sat Nov 16, 2013 8:31 pm
by jimmylegs
whoa, I said before I could not find info on or make assumptions about zinc levels based on iron info alone, but I must have used the wrong search terms.

I just went hunting down this old zinc level for something else altogether - once I found the right study, the context turned out to be so relevant.

Increased serum copper and decreased serum zinc levels in children with iron deficiency anemia
http://link.springer.com/article/10.1007%2FBF02783227
Serum copper levels were higher in children with IDA (189 ± 49 (Μg/dL) than those of controls (163 ± 37 Μg/dL) (p = 0.001). Serum zinc levels were lower in the patient group (109 ± 59 Μg/dL) than those of control subjects (135 ± 56 Μg/dL) (p = 0.017).
the good news is, working on zinc would help bring the copper down. still would be best to get her tests of her own, of course.