Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Great report notan. I take 2000 mg D3 for many years and Magnesium so I can have a BM. I used to take B12 liguid but stopped as I have had it checked. And Crestor, since I had a bypass 15 years ago, it I believe has kept me alive. Most bypasses dont last 15 years. Also inflamation in the heart arteries seens to be the cause of heart attachs and maybe inflamation in the e might be the cause Achalasia combined with GERD. I still believe we will find a cure to regenerate the e mussels, maybe not in my life time but for people like you. That is why I have found out how to manage my A,with out any cutting. But it would be difficult for some one young, going to school, getting married, starting to work, having kids. Once you retire it would be best to try to manage it, my opinion! Ray CA OC 81 > > There has been some talk in the past weeks about vitamins and > supplements that were suggested could be needed by us. The topic is a > complicated one. First I want to point out some general things on the > topic and then some about specific supplements. > > Among the sciences nutrition is in one of the worst states. I don't say > to insult anyone in the field. It isn't the fault of those doing > research in nutrition or those that have the job of educating and > treating others about it. The problem is that what happens in the body > for and due to nutrition is so complicated that science has not had the > tools needed to understand it at the level that is really needed to make > some of the conclusions that are often speculated. Much of what we hear > as nutrition gospel is actually just speculation. It is often > speculation based on some science and it is often the best guess there > is as to what is happening but it is also often wrong. What looks simple > like 2+2 leads to the speculation that 4 is the answer but often the > situation only looks like 2+2 and is in fact much more complicated and 4 > is not the answer or at least not the complete answer. In other cases > the data was bad or even faked to start with. That isn't just a problem > in this science it is a problem for a lot of sciences. Some claims in > nutrition actually have political reasons for their existence. Still we > need to make choices and nutritionists have to do the best job they can > with the data such as it is. That means that some of what they claim is > actually wrong and changes over time. Remember when coffee, tea, wine, > and eggs were bad and sucrose was worse than fructose? > > Here is an example that goes to the recent discussions. Research has > shown that DNA can be damage by oxidation. That is a chemical reaction. > There are also chemicals that can reduce or slow down the oxidation > reactions. These are called antioxidants. Problem: it is likely that > some aging and cancers are cause by this type of damage. This looks like > 2+2 and the simple answer is 4, antioxidants, take more antioxidants and > have less cancer risk and slow down aging. About ten years ago we were > regularly hearing in the news that we should be getting more > antioxidants for these reasons. I will admit I bought into it. I should > have had some doubts as should have anyone that has knowledge of how the > immune system works. For those that don't see where this is going, the > immune system uses oxidation to attack cells it wants to destroy. These > could be germs or even some types of cancer cells. Now our 2+2 looks > like 2+2+F(i), where F(i) is an immune function. Is the answer still 4? > For some cancers it may still be 4 but the complete answer is much more > complex. In recent years evidence from studies has come out that some > cancer risks are increased if you take large doses of some common > antioxidants supplements, including some antioxidant vitamins. We could > have seen that coming. > > If you have achalasia do you need more antioxidants? In one form of this > question the assumption is that achalasia causes us to have poor > nutritional intake. That may be true for some but many of us get as good > of nutrition as we would have without achalasia. For many it just means > that eating can be frustrating and take more time than it should but in > the end they eat what they would have anyway. For others there may be > choices made for easier food to get down but that alone does not mean > they are substituting bad choice that would leave them needing more > antioxidants. Then there are those that are almost starving or are > starving. How much do they need? No one knows how much anyone needs, nor > do they know what combination of the thousands of antioxidants that are > in the world would work best. What has been shown is that some amount > may help protect against some cancers but too much of some may increase > your risk of cancer. If a person that is near starving takes a lot of > one antioxidant or even a lot of a combination by supplements it may be > possible that cancer risk will be increased not decreased. More data is > needed to know. Until there is better data we have mostly speculation > which could be very wrong. > > Again, If you have achalasia do you need more antioxidants? There is > some evidence that achalasia is an inflammation disorder. That is, there > seem to be inflammation in the tissue where the nerves are being damaged > and destroyed in achalasia. Inflammation is caused by oxidative > processes. Here again we seem to have something as simple as 2+2 and the > simple answer would be reduce the inflammation and one way to do that > would be antioxidants. One of the reason aspirin may be good for so many > things is that it is anti-inflammatory. So it seemed that perhaps other > things that are anti-inflammatory may be good for achalasia. That is > just speculation and I admit that I have shared that speculation in this > support group, but I present it only as speculation. Along that line of > though things such as turmeric have been discussed. Turmeric is food > (spice) and if people want to try adding some of it to their meals that > seems harmless to me. One person though took the idea further and > started taking large amounts of curcumin which is extracted from > turmeric. I questioned the wisdom of taking large doses of the > supplement. That person is no longer posting in this group but I believe > from things that have been past to me that the large doses did not work > out well. But what about other antioxidants? We need to ask the > question, is the inflammation in the esophagus the source of the > destruction? Perhaps the immune system is going bonkers in this case but > it could also be that the inflammation is from the immune system doing > what it suppose to. Either way we are back to 2+2+F(i). Better data is > needed to go beyond the speculation. > > I find it ironic that many people who would tend to take antioxidant > supplements are the same people who take other supplements to boost > their immune systems. If you think of the immune system as being the > body's attack dog they want to make theirs a large pit bull with a good > bark and strong bite, but when they take lots of antioxidants they may > be muzzling it so it only has the bark and bite of a chihuahua. Better > data is needed to be sure. > > Changing the subject now to B vitamins, especially B12. First, let me > say that B12 seems to be harmless so you probably safely load up on it > if you want to. But do you need it? Again, just because a person has > achalasia does not mean they also are low in B12. Vegetables do not > provide any B12. You get most of your B12 from meat dairy and eggs. If > you aren't eating enough of those kinds of foods you could have a B12 > problem. It takes stomach acid to brake down the food to release the > B12. If you are on a PPI or H2 blocker to prevent acid reflux you could > have a problem with B12 but many people will do fine even on those > medications if they eat enough of the right foods. The stomach also > makes a substance called intrinsic factor which is also used for the > absorption of B12. Damage to the stomach, even surgery can cause the > stomach to produce less intrinsic factor. The heller myotomy should not > cause that problem but a gastric pull-up esophagectomy could. Some > Autoimmune problems can cause problems with intrinsic factor. As we age > it becomes harder to absorb B12 and people over 50 may have problems but > not everyone develops a problem. Diabetics taking metformin may also > have problems with B12 but most do not. The main things achalasia would > contribute to that list is the need for medications to prevent acid > reflux after a myotomy (if needed) and esophagectomy (which most don't > have done). Otherwise we probably have the same risks as others our age > who eat the same diets we do. For some diet may be a problem but for > many of us diet is not a B12 issue. > > If you want more B12 what should you do? First we need to clear up a > couple of confusing topic. First, B12 is absorbed in more than one way. > The main way is with intrinsic factor and special cells that are used to > work with it. The second is through what is call passive absorption. In > passive absorption the B12 is absorbed by the gut, including the mouth > and esophagus, without the use of any special cells or substances like > intrinsic factor. Most of the B12 people absorb is through cells that > work with intrinsic factor. When the intrinsic factor system does not > work passive absorption is what is left. Second, sublingual (under the > tongue) pills use passive absorption, but there is nothing special about > the passive absorption ability of the mouth. Many people are confused > about that, even people who should know better. The main, justifiable, > reasons to use sublingual pills is because a person has trouble > swallowing pills or the medication will be destroyed in the stomach. B12 > pills can be chewed and are not destroyed by the stomach so these are > not justifiable reasons in this case. If you have problems with low > stomach acid or intrinsic factor if you take large enough doses of the > regular pills, not the sublingual, you will absorb enough B12, without > sublinguals or shots saving a lot of money. In achalasia stomach acid is > usually just reduced not stopped when being treated for acid reflux. > Therefore, one may just need a little more B12. In that case changes in > food choices may be enough or an occasional supplement may be enough. > The liver can store enough B12 to last years if there is not a problem > with the intrinsic factor system. Eating liver is a very good to way to > get large amounts of B12. Some B12 supplements are just dessicated beef > liver powder. To get large doses of B12 pills with beef liver are often > fortified with cyanocobalamin (a form of B12). Some people are > needlessly afraid of cyanocobalamin because of the cyanide it contains. > The amount of cyanide is very small an does not at that level cause > toxicity. The cobalamin (B12) part of cyanocobalamin is used to treat > cyanide poisoning so not only is the amount of cyanide very small it > also comes with its own antidote. Some foods like cereals are fortified > with B12. Energy drinks sometimes contain a lot of it and other B > vitamins. Because the liver can store a lot of B12 you don't need to get > a lot every day. That is why B12 shots are generally done once a month. > So, you could take a little extra B12 everyday, or a lot in one large > dose pill once a week or month as needed and save some money. > > B12 also comes in B complex supplements. These are supplements that > contain more than one kind of B vitamin. There are 8 real B vitamins and > some other substances that are sometimes called B vitamins, such as > substances from cyanobacteria (spirulina) and algae even though these > other substance may not be of value to us. Of the 8 most are very safe, > but two, B6 and B3, can be toxic. According to the Office of Dietary > Supplements (ODS) at the National Institutes of Health the upper safe > level of B6 is 100mg daily and the recommended daily dose is 2mg or > less. MedlinePlus also at the NIH says the safe B3 amount is 35 mg or > less and the recommended amount is half that. According to a GNC web > site GNC Big 100® (Vitamin contains 100 mg of both B6 and B3. (Some > B complexes contain even more of each.) Some people have problems with > B6 if they take even less than 100mg a day. Not at first but over time. > The safe level of B6 probably needs to be lowered, but even many doctors > are unaware of the problem and will miss it as the cause of them. 100mg > of B3 probably is not a problem for most people even though it is above > the safe amount. As a treatment for high LDL cholesterol and low HDL > 1000 - 3000 mg of B3 is often used, but liver tests must be done to > watch for liver damage. Many patients can not take those levels without > liver damage. One of the problems with complexes like this is that > people often don't know that their B vitamin complex is adding to the > does of these medications. Add to the B complex an energy drink such as > 5-Hour Energy®, which according to GNC has 33mg of B3 and 40mg of B6, > and a daily multivitamin and fortified foods and you could be getting > 150 mg of each of these two B vitamins before you even take medication. > > The study cited in the link below reported neurological symptoms of > toxicity in 103 women who took an average of 117 mg/day of B6 for an > average of 2.9 years. The study has some weaknesses but it is hard to > completely dismiss. > Characteristics of pyridoxine overdose neuropathy syndrome. > http://www.ncbi.nlm.nih.gov/pubmed/3630649 > > B6-Toxicity discussion at MedHelp (interesting stories). > http://www.medhelp.org/posts/Nutrition/B6-Toxicity/show/2642?page=1 > > Vitamin D and calcium are also suggested by some that we should > supplement. Your body should make D when exposed to sun light. Some > foods naturally contain small amounts of D but most people, at least in > the US, get most it by eating fortified foods, such as milk and orange > juice. There are two forms of D, D2 and D3. D2 is synthetic while D3 is > our natural form. Some metabolites of D2 are not natural either. For > large doses D3 may be a better choice. With achalasia some people who > are not eating enough in general may not be eating enough foods high > enough in D. A lot of people without achalasia don't get enough D in > their food, so it isn't surprising that we could have a problem too. > Some of us also take PPIs. There are studies that report an association > between taking PPI long-term and having bone fractures (not necessarily > a cause and effect relation, even though it is often reported that way, > even by people in this group who have been told better). D is important > for calcium absorption and keeping bones healthy. 2+2 right? Take extra > D and calcium for the bones. Maybe not. First, as I said the evidence on > PPIs is association not causation so PPIs may not be a problem anyway. > Second, while D is generally not toxic per se, the effect on calcium can > be. I had my D checked and found that I was low. Which was a surprise > because I get a lot of sun and figured it would have been enough for me, > but I guess I must be old enough that my production of D from sun shine > has been reduced too much. Which happens as we age. In my case even > though I was low in D I was not low in calcium and if I had taken D with > calcium I would probably have cause my calcium level to become too high, > hypercalcemia, not a good thing. You don't have to take D to cause > hypercalcemia but it is much easier to cause it while taking D and > calcium together. Just taking too much calcium can cause it. Did you > know too much calcium is toxic? Sometimes called Milk Alkali Syndrome it > can destroy your kidneys. If you are taking supplements of either D or > calcium it is good to tell your doctor in case he wants to check your > levels. One of the things hypercalcemia can do is cause uncontrollable > erratic blood pressure. There are other problems listed in the following > article: > > Mayo Clinic - Vitamin D Toxicity > http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008 > > Article by a diabetes bloger about her case of D toxicity > http://diabetesupdate.blogspot.com/2010/06/too-much-vitamin-d-and-calcium-troubl\ e.html > Very interesting and has some good links. > > MedScape - Milk Alkali Syndrome > http://emedicine.medscape.com/article/123324-overview > > > Celseton, Achnical, Achlotab and Achlitin are herbal supplements that > the maker(s) claims are for treating achalasia. > > First, it is illegal in the US to make such claims without FDA approval. > These are not from the US though, in spite of the FDA disclosures on the > sites. Three years ago when I first checked out Achlotab and Achlitin > and achalasia-options.com the site was connected to a London address > that was the address of a company that provided virtual offices for > companies from around the world. That address is still used by some of > the web sites for " Society for the Promotion of Alternative Health. " See > message 51583. Another thing I found then was that if you look at the > FAQ at: http://achalasia-options.com/faqs.html you will notice it talks > about " Skin Abscess sufferers " in the " What is the purpose of this > website " section of the page. Three years later and that has not been > fixed. So what, you ask. Check these out: > http://www.myelodysplastic-options.com/faqs.html > http://uterinefibroids-options.com/faqs.html > http://jockitch-options.com/faqs.html > for more see: > http://www.google.com/#q= " Skin+Abscess+sufferers " > I estimate that about a hundred of these hits are these kind of pages. > You have to let Google show the redundant pages. > > Today Celseton is connected to an address in Norway that is a Mail Boxes > Etc. location, with the name " Oslo Health Solutions. " There is an > interesting article about OHS at: > http://www.tv2.no/underholdning/hjelperdeg/internasjonal-helsesvindel-med-kontor\ -i-norge-2912298.html > You will probably have to put that URL into a translator, such as: > http://translate.google.com/ > Check out: > > Now for some real fun! Goto: http://www.celseton.com/ Notice the > statement saying " After eight years of extensive research and > development work, we take pride in presenting to you an all natural > product for Achalasia! " Wow, eight years of research on an herbal cure! > And, its for a rare disease like achalasia. Who would believe it? Now > copy " After eight years of extensive research and development work " and > use it in a search like: > http://www.google.com/#q= " After eight years of extensive research and > development work " > Looks like eight years is the exact amount of time needed to develop a > " natural product for " any of hundreds of diseases. That's a lot man > years! Thank-you " Gordon's Herbal Research Center " in New Zealand. You > can also search on that name. Not as much fun though. > > Next, goto: http://www.achnical.com Look at that, Achnical " has been > shown in clinical trials to provide a complete Achalasia cure rate in > 90% of subjects. " Let's try to find them on PubMed. Try this: > http://www.ncbi.nlm.nih.gov/pubmed?term=achnical > No luck there. Maybe it was under the ingredients. After checking the > http://www.achnical.com/formula.html page we can try: > http://www.ncbi.nlm.nih.gov/pubmed?term=Arillus Myristicae Elephant > Creeper Nutmeg Saffron Serpentine > No luck there either. Arillus Myristicae is the spice mace. That give us > two possible searches: > http://www.ncbi.nlm.nih.gov/pubmed?term=mace AND achalasia > and > http://www.ncbi.nlm.nih.gov/pubmed?term=Myristicae AND achalasia > No luck. If the studies were published it wasn't indexed with PubMed. > Time for more fun! Notice the Testimonials section on the right side of > the achnical.com pages. I like the second one, " Results in 7 Days - JML > June, 2007 " Let's put that into a search: > http://www.google.com/#q= " Results in 7 Days - JML June, 2007 " > Wow, WOW, that JML was one sick puppy. I am surprised JML lived out the > seven days to see results having those hundreds of diseases. I see one > of JML's conditions was Polymyalgia Rheumatica. Let's see what the cure > for that is at: http://www.melgical.com/formula.html " Ingredients of > Melgical " : > Arillus Myristicae, Elephant Creeper, Nutmeg, Saffron and Serpentine . " > And on the main page it says, " Melgical has been shown in clinical > trials to provide a complete Polymyalgia Rheumatica cure rate in 90% of > subjects. " Look familiar? I wonder if JML knew that or bought a separate > bottle for each disease at $80 a bottle, and took the pills for all of > them each day of the seven days? > These guys at: > PO Box 2175 > Paleagade 7 > DK-1231 > KBH K > Denmark > don't give a company name. The copyright is " -2009 > company name. " Maybe " company name " is it. > > Achlotab is also on the web at Achlotab.com which is a Oslo Health > Solutions site that lists their address as: > Suite 329 > Youngstorget > NO-0028 Olso > Norway > > Achlitin, (BTW: it is " Homeopathic. " How wonderful. Not!), is at > http://achlitin.com they are one of the Berlin Homeo Products web pages > and list their address as: > Markgrafenstr. 56, Suite 110 > Berlin 10117 > Germany > > Who are these people? Check out " One Sick Mother " : > http://onesickmother.typepad.com/my_weblog/ > and on the left under Scams click " SPAH: The Medical Scam Clearinghouse. " > > Time for a review site: > http://www.achalasiaproducts.com/ > Look at those products. Guess who is behind this? It claims to be by > made by an achalasia suffer. Maybe it was JML our achalasia suffer with > all those other diseases. If you take the statement from the page that > says, " it's nearly impossible to determine which treatments work and > which ones don't. If all of them claim to use natural ingredients " and > dump that into a search engine guess what you get? Yep, this person not > only has hundreds of disease but has tried the products for all of them > from all the sources. Good thing these products are " safe! " > > One Sick Mother did a good article on the above reviews and who is > behind them: > http://onesickmother.typepad.com/my_weblog/2009/08/herbal-product-reviews-scam.h\ tml > > Entertainers often provide medical advice. Some of these entertainer are > MDs. My problem here is that almost all of the entertainer MDs I know of > seem to be in the business of entertainment first and health second. So, > they choose to give advice that is more likely to cause people to come > back and be entertained than to give accurate information. This is just > human nature. My primary doctor once said to me that GIs are in the > dilatation business and surgeons are in the surgery business so guess > with treatment for achalasia each is likely to suggest? It isn't that > they are being evil they believe in their products. The entertainer > believes in his show and his producers and staff who may be making more > of the " health information " decisions than you would expect. Buyer > beware, whether it is doctors, entertainers or herbalist. There are good > ones and bad ones and all are likely a little biased, and as we have > seen above some are evil. > > Last, if you try any of the things discussed here please tell your > doctor, or better yet, check with him first. > > notan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 Thank you Notan, That was amazing! I had my esophagectomy over 4 years ago and it took a long time to determine what made me feel great with less dumping syndrome issues. I do take 2 Caltrate chewable vitamin D, 2 Webber Probiotic, 1 chewable vitamin C, and my chewable Centrum every morning along with my sublingual vitamin B12. I also exercise and eat healthy. I continue to have dumping syndrome with dairy, so I avoid it. I do eat eggs (but only if I'm staying home!) Do you think I'm taking too many vitamins? I truly value your knowledge and would like your opinion. I am 46 and eating well now. 135-140 lbs and 5' 7 " . Thunder Bay, Ontario Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 Hi, . wrote: > ...I had my esophagectomy over 4 years ago and it took a long time to determine what made me feel great with less dumping syndrome issues. For those that may not know that means they removed your esophagus and probably changed your stomach from being like a bag into a tube, removing some of it to do so, and then moved it up into the chest to replace the esophagus. You still have a stomach but it doesn't work 100% like it used to and with the dumping syndrome you could have some nutrition issues. > ... Do you think I'm taking too many vitamins? ... Do they test you? I think the only way to know would be to be tested. Without that you don't know if you are taking too little or too much of each. There could be one or more that you could need large amounts of and yet not need any extra of some others. Also, being tested in the past may not tell you about today because the body stores a large supply of some vitamins, such as B12. If you were tested soon after the surgery you could still test good on B12 as it could take a few years to become low even if you had stopped absorbing it depending on how much was in your liver. Also as we age it can become harder to absorb some things. In about 5 years you will be at that age were they start telling you to take extra. In your case I would check sooner. Good to hear you are still doing so well. You must not be hurting yourself much with the supplement, if at all. I wish there was an answer for the dumping. notan Quote Link to comment Share on other sites More sharing options...
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