# Interesting MS CFS article on Vitamins...



## NickT (Oct 3, 2000)

NUTRITION AND LIFESTYLE SUGGESTIONS IN RELATION TO OUR BACTERIUM Copyright Luther E. Lindner M.D., 1995-7. This document may be copied and shared with others. Version 4-6-97. Our bacterium is present in all "normal" persons and in increased levels in persons with nonspecific symptoms or a number of clinical disorders including the chronic fatigue and immune dysfunction syndrome (CFIDS), fibromyalgia, and several autoimmune disorders such as multiple sclerosis, lupus erythematosis, and rheumatoid arthritis. There is no direct evidence that the bacterium is the cause of these disorders, and the causation may be complex, but individual patients with these problems who have shown a reduction in their bacterial counts on an appropriate antibiotic regimen have also had a significant improvement in their symptoms. For some patients antibiotic therapy may not be appropriate or may not be possible, but it may be possible to partially control the level of the bacteria by nutritional measures. This will probably not be effective in all patients. Antibiotic therapy is also not guaranteed to be effective. Some patients have actually been made worse by antibiotic treatment. Persons who are ill should attempt to maintain good nutrition in general. Some of the following guidelines are suggestions that have been previously made in the CFIDS literature; for these, our studies merely provide a rational basis for the previous observations. Many of these recommendations are derived from direct experiments in culture. Many patients have observed that high dose vitamins make them feel better. At this time there is no evidence that the bacteria are dependent on externally provided vitamins, and thus there is no reason not to take them. I recommend a good multivitamin containing higher than normal levels of the B vitamins, especially vitamin B-6 and folic acid, vitamin C, and possibly vitamin E. Vitamins A and D can produce toxicity at significantly higher than normal levels so an excess should be avoided, but some supplementation may be good. Very large doses of certain of the B vitamins, vitamin C and vitamin E can be toxic, so there is definitely a limit to how much of any of the vitamins should be taken. I strongly recommend that you avoid vitamins with multiple minerals, as certain of the minerals discussed below may be a problem. Some patients have reported improvement in symptoms from vitamin B-12 injections. These are usually administered by a physician and we have no data that confirms the patient's observations. Supplementation with niacin (or nicotinic acid, not niacinamide or nicotinamide), B-6 (pyridoxine), B-12 and folic acid may be particularly important in persons using cysteine (cystine) supplements (see below). The CFIDS literature suggests that there may be improvement from injections of magnesium sulfate and oral zinc supplements. Our data shows that increased levels of magnesium have little effect on the growth of the bacteria. Presumably the reported effects of magnesium are due to a secondary effect on symptoms. I cannot recommend these injections at this time. You could consider supplementation with oral magnesium, but be careful with the dose, especially if it is not taken in combination with calcium. Magnesium compounds are well-known laxatives at doses over a few hundred milligrams at a time. Our studies indicate that the growth of these bacteria is stimulated by compounds of copper, manganese, tin, iron and possibly other metals including aluminum, silver and mercury. These studies need to be refined, and additional minerals need to be tested, but they suggest that you should avoid mineral supplements containing these minerals as well as foods that are high in them. It is likely that copper and iron are the most important of these. We have repeatedly noted that both stress in general and inflammatory processes in particular stimulate the growth of the bacteria. Inflammation results in the release of several copper and manganese-containing enzymes from white blood cells in substantial amounts and raises blood copper levels. Inflammation, stress, and certain hormones all elevate blood levels of copper, mostly bound to a specific protein. I suggest a reduced intake of foods high in copper, particularly shrimp, lobster, crab, crayfish, and liver. If you have copper pipes you might consider bottled water for drinking and cooking. Manganese and iron may be harder to avoid. Absolute avoidance of these foods is not indicated, first because at least some of these minerals is necessary for health and second because there may be an easier way to deal with the problem. Dental amalgam could be a source of some of these minerals, although it is unlikely that it plays a major role with most patients. I strongly recommend an increased intake of zinc. Zinc suppresses the growth of these bacteria in culture and increased zinc intake competes with the other minerals that we have noted as a problem, resulting in less absorption, increased excretion, and less availability within the body. Zinc also has a beneficial effect on the immune system in general, which is why it was originally recommended. The recommended amount is 25-50 mg. a day of zinc as zinc sulfate or an equivalent zinc compound for the average adult. Amounts over that can lead to overdosage. Overdosage will produce anemia and weakness because excessive reduction of available copper interferes with the body's ability to make enzymes that supply the bulk of the energy to all the cells in the body and interferes with the incorporation of iron into the hemoglobin in red blood cells that carries oxygen throughout the body. Because of the problems with possible overdosage, we recommend periodically monitoring the iron levels in the blood and/or the blood counts. We also recommend monitoring the iron level because of the possibility that iron stimulates bacterial growth. The best test for total body iron stores is the serum ferritin, but it is possible that this is not the best test for whatever the active form of iron is, most likely the free iron. We recommend keeping the level at the lower end of the normal range. If it is in midrange or above, I recommend donating blood periodically or therapeutic phlebotomy to reduce body iron stores. Another trace metal that has been suggested as beneficial in the CFIDS literature is chromium. Our testing shows no inhibition of bacterial growth by this, and possibly stimulation with some strains, so any beneficial effect is indirect, but we have confirmed symptomatic benefit in some patients. Chromium is known to be needed for insulin activity, through mechanisms that aren't fully clear. Many CFIDS patients have sugar cravings and fatigue increasing several hours after eating. Chromium antagonizes this. Since increased zinc will probably antagonize absorbtion of chromium, some chromium supplementation along with it is probably needed. I recommend 100-200 micrograms per day. Chromium also reduces the risk of arteriosclerosis. There is a risk to excessive chromium supplementation so these levels are probably maximum. The role of these metals is currently unproven, but they are probably acting as cofactors in critical biochemical reactions needed by the bacterium. Certain of these metals are probably acting as oxidants, oxidizing as yet unidentified compounds. This raises the possibility that high levels of antioxidant compounds may be of help. The known major antioxidant materials in the diet are vitamin C, vitamin E, and selenium, as well as a variety of sulfur-containing compounds (see below). We do not yet have any data on the possible effect of these, but since they are good in the diet for other reasons, supplementation with this class of compounds is recommended. The CFIDS literature suggests that certain sulfur-containing compounds may be beneficial. Garlic in particular has been mentioned, and I have had one patient who consumed large amounts and was convinced that it helped his symptoms. The compound that gives garlic its aroma (stink?) is one of these sulfur-containing compounds. These sulfur-containing compounds react with several metals within the body, including copper, and therefore may be complementing zinc. This doesn't get rid of the copper, but only ties it up temporarily, plus the active compounds have a substantial odor. The garlic powders and oils that have been deodorized may lack the active sulfur compounds and may be useless. Onions and other relatives of garlic may have some of the same, but lesser benefits. Experiments on the effect of sulfhydryl reagents suggest other compounds may have at least as much value as garlic, but also suggest that some sulfhydryl compounds may sometimes be bad. The best data we have is on the effect of l- cysteine (cystine), an amino acid that is one of the basic building blocks of proteins. The amount of cysteine in the diet affects the availability of other amino acids through various metabolic interactions and conversions, so the total situation is not well understood at present. Increased cysteine clearly suppresses growth of some strains of the bacteria in cultures, but stimulates other strains. The mechanism of action is unknown, but may relate to the availability of trace metals that are needed for enzyme activity by the bacterium, since sulfhydryl reagents do tie up some metals. Alternatively it may be related to the cysteine removing or altering a critical oxidized molecule. Cysteine isa minor component of almost all proteins, but is present in quantity in only a few sources. The best sources appear to be chicken and eggs. Dietary supplementation with cysteine is easy and reasonable in cost. L-cysteine or l-cystine can be purchased in many health food stores in capsules. These two compounds are equivalent since the body interconverts them. The related compounds d- or dl-cysteine (cystine) might be found but should be avoided because certain bacteria use d-amino acids to make their cell walls. N-acetylcysteine can also be found in health food stores. It has no effect on the bacterium in culture, but it is metabolized to other compounds in the body so it might have some beneficial effect. At this time I suggest a daily cysteine (cystine) supplementation of 500mg./day, not higher, only in those patients whose isolate shows inhibition by cysteine in culture. This will produce a slight sulfurous odor. Cysteine (cystine) should not be taken at the same time as zinc, calcium, or magnesium supplements, as that might interfere with the absorbtion of one of the materials. Some individuals on cystine supplementation have also noted symptoms that appear to be related to the cystine. The mechanism behind these is unclear at this time, perhaps related to stimulating the growth of other organisms. Since our experience with it is quite limited, I do not recommend trying cystine supplements except with caution. A special caution must be stated with regard to cysteine (cystine) supplementation. In rare individuals the kidney has a problem with handling cystine, and in those persons it is excreted in high enough amount that it crystalizes out in the urine. Supplementation could lead to the formation of kidney stones. Persons with a diagnosis of cystinuria should not take supplemental amounts, and we recommend having a microscopic urinalysis done after being on the supplements for awhile to rule out cystine crystal formation. Maintenance of good hydration will also help with this potential problem. There is another potential problem with cysteine that has not yet been studied. An increase in arteriosclerosis has been associated with increased levels of homocysteine. In the body homocysteine is produced from methionine and is converted to cysteine: it is possible that elevated cysteine levels would lead to an increase in homocysteine by slowing this conversion. Homocysteine is metabolised by other routes that require folate and vitamin B-6 and B-12, so keeping those vitamins up may prevent this. Increased niacin intake may also be helpful in preventing this potential problem because it reduces the level of blood cholesterol and other fats (lipids). The CFIDS literature suggests that taurine may be beneficial. In the testing to date, taurine has no effect on cultures. In the body cysteine is converted to taurine. Taurine could just be inhibiting the breakdown of cysteine. Various herbs and other nutritional remedies have been recommended by various persons without a scientific basis. I general I can't recommend these without more information on them. Limited testing done to date has not shown any herbs that are clearly beneficial. The most exciting information relates to clinical observations that the growth of the bacterium is somehow tied directly to the inflammatory process. Isolates of the bacteria from patients who have been stressed, are more ill, or who have active inflammatory processes going on show not only greater numbers of organisms, but also their organisms have a much greater growth potential in culture which subsides over time. Something the bacteria have acquired in the patient is required for the growth process. I initially related this to release of metal-containing enzymes during inflammation, and that may be part of the process, but recent data suggests another cause. Apparently the growth of the bacteria is affected by the availability of derivatives of unsaturated fatty acids that are produced as part of inflammation. Unfortunately, at this time we aren't sure which of these derivatives is the critical one that produces most of the growth stimulation. There are many possibilities, and sorting it all out will be difficult. The critical material(s) are presumably derived from an unsaturated fatty acid known as arachidonic acid that is released as one of the primary reactions in the inflammatory process. Arachidonic acid is a normal and necessary component of the body that can be derived from the diet directly or synthesized in the body from other unsaturated omega-6 fatty acids. Many antiinflammatory drugs such as aspirin and its relatives block the conversion of arachidonic acid to certain compounds that are effective mediators of inflammation. Unfortunately, these drugs block some of the possible conversions but not all, and administration of most drugs in this class to patients has not produced much effect on the bacteria or the symptoms of the patients, so presumably they are not blocking the critical pathway of conversion or there are multiple pathways that produce the same effect on the bacteria, at least one of which is not blocked. Steroids partially block the release of free arachidonic acid. Steroids have been used for a long time in the treatment of various "autoimmune" disorders including lupus erythematosis, rheumatoid arthritis, and multiple sclerosis, all of which may be related to our bacterium. They are not a cure-all, since there are many complications associated with their use and they don't block the conversions completely. It is possible that the beneficial effect of the steroids in these processes is directly related to the suppression of growth of the bacteria, rather than just their effects in suppressing the inflammatory component of these diseases. Ibuprofen may partially block this process and its use at a moderate level should be considered, taking into consideration the risks of long-term use. Other things can be done to affect this. The first is to control any treatable inflammatory processes that exist in the body and to control infection and inflammation in general, no matter what the source. This includes a general control of stress. CFIDS and MS patients have known for a long time that any sort of physical or mental stress or illness makes their disease worse. They have also noted a relationship of their symptoms to dental infections and similar problems. If necessary, the lifestyle should be adjusted and other medical and dental problems should be cleaned up. Extreme exercise and injury should be avoided. Another dietary maneuver that can be tried is to adjust the amount of arachidonic acid that is available to be released in the body by adjusting the dietary intake of fatty acids. Fat intake in general should be reduced, and particularly the intake of most cooking oils and margarines. Completely avoiding unsaturated fatty acids will have bad consequences. The type of unsaturated fatty acids that are consumed, however, will affect the amount of arachidonic acid available in the body. There is reason to believe that the so-called omega-3 fatty acids that are available in sea fish and possibly other seafoods are desirable and they clearly can replace much of the arachidonic acid in the body. Reduction of meat in the diet and replacement of much of it with sea fish is recommended. This may have health benefits unrelated to our bacterium, such as reduced arteriosclerosis. So-called omega-9 and omega-8 fatty acids may also be OK. Oil of primrose, flaxseed oil, and borage oil are sources of these. Unfortunately, most of the available unsaturated vegetable oils contain mostly omega-6 fatty acids which are the precursors of arachidonic acid. Most processed foods contain these and they should be reduced in the diet. Canola oil and olive oil may have a more neutral effect. We have not studied the effects of this kind of competition in the laboratory, so I have no direct evidence that it will work, but in theory it sounds promising. The bad news is that it requires a major adjustment in the diet. Simple supplementation with commercial fish oil capsules, for instance, without removing the dietary omega-6 fatty acids, requires very large intakes (20-40 g./day) to significantly alter the overall body composition of unsaturated fatty acids, and the high fat intake is probably not good. With a carefully controlled diet, however, there is reason to believe that practical intakes (5-6000 mg./day) may be effective. The CFIDS literature suggests that supplementation with carnitine helps some patients. It has no direct effect in our cultures. Carnitine plays a role in the metabolism of fatty acids, so it may afect the availability of arachidonic acid. I do not recommend carnitine supplements until we have studied this, although it is a normal and harmless dietary component in reasonable levels. The CFIDS literature also suggests that Q10 (ubiquinone) may have some value. This also doesn't appear to have a direct effect on the bacterium, but may again be helpful in lowering the production of active arachidonate derivatives. Some of our data suggests that a component of milk may promote the growth of the bacterium. We don't know what that component might be or whether the effect we see in culture has anything to do with what happens in a patient. It might be prudent to limit the intake of milk and milk products until more is known. At this time a portion of the patients tested are partially or completely resistant to the available antibiotics. In general, these patients have the highest levels of bacteria and their bacteria show the greatest growth potential in culture. Nutritional manipulation to slow the growth of bacteria based on dietary supplementation with vitamins (increased B vitamins, C, and E but not A and D), zinc 25-50 mg/day, chromium 100-200 mcg/day, sulfhydryl compounds such as cystine 500 mg/day and garlic, appropriate sources of non omega-6 unsaturated fatty acids (at least 5g (5000mg) per day), elimination of undesirable foods, particularly those containing high levels of copper and omega-6 unsaturated fatty acids, and reduction of iron levels may convert some of these untreatable patients into responders or at least will reduce the severity of their clinical problems. We do not yet have solid data on this, however. Soli deo gloria. CULTURE SHIPPING INFORMATION The following directions pertain to shipping human blood specimens to our laboratory at Pacific Biotech International, Inc./ Pathobiotek Diagnostics Inc. for cultures for our bacterium. Version 4-3-97. TIMING: Draw and ship the specimens so that they will arrive in Houston late in the week. From within the U.S. friday arrival is preferred, from outside the U. S. thursday arrival is preferred in case there is a customs hangup before the shipment is cleared. Cultures are usually set up on saturday only. We recommend calling the laboratory (713) 939-1833 to confirm that the timing will work, as there are occasional variations in our schedule. SPECIMEN: Two 7-10 ml. red or speckled red-top (no additives) vacutainer-type tubes with separator gel for blood samples. Tubes must be sterile - a few manufacturers make tubes that are not. Allow the clot to fully retract and then centrifuge the tubes so the gel separates the serum from the clot. DO NOT TRANSFER THE SERUM to another tube - that risks contamination and can disturb counts if the bacteria are not resuspended. Tubes must be labeled with patient identification and date drawn. Refrigerate the tubes between drawing and shipping, but DO NOT FREEZE. The bacteria are stable for several days at refrigerator temperatures. Excessive delays before shipment should be avoided. PACKAGING: U. S. and international regulations as well as good sense require that the tubes be within a double containment to guard against leakage. The nature of each layer is not specified beyond the requirement that it provide a complete leakproof seal. Possibilities include heat-sealed plastic bags, tightly sealed plastic tubes, and metal cans with secure closures. Inclusion of an absorbent material within the container in case of leakage of the enclosed tubes is recommended. This should be placed within an insulating foam container with a cold pack. DO NOT USE DRY ICE. THE SPECIMEN MUST NOT FREEZE. INCLUDE PATIENT'S NAME, ADDRESS, AND PHONE NUMBER AND SUBMITTING PHYSICIAN'S NAME, ADDRESS, AND PHONE. LABELING: The package must be clearly identified as a medical specimen or have an etiologic agent warning label. Most air shippers have special labels to identify shipments - contact your carrier to be sure that they are on hand IN ADVANCE. If you are shipping from outside the U. S. A., the container MUST have attached one CDC permit, which we will provide you. These permits are granted ONLY for shipment under a specific protocol, to and from specific addresses. Recommend labeling as a medical specimen with the CDC permit - we have had one incident where the package was returned because it was labeled in a manner that spooked the customs agent. We are only approved to accept non-U.S. specimens from Canada, England, the EEO countries, Mexico, and Australia. SHIPPING: Ship via an overnight air carrier to Pacific Biotech International, Inc./ Pathobiotek Diagnostics Inc, 7010 Northwest 100 Dr., Suite A101, Houston, TX 77092, phone (713) 939-1833. The air carrier MUST be approved to handle potentially infectious or medical specimens - not all are - check with your carrier in advance. Federal Express and Airborne Express are known to be approved. FINANCIAL: Specimens on new patients will be processed only if they are accompanied or preceded by a donation to the Lindner Research Foundation of at least $40.00 U.S., sent C/O Pacific Biotech International/ Pathobiotek Diagnostics, which will forward it to the foundation. The costs of specimen drawing and shipping are the responsibility of the subject being cultured. Specimens from patients previously cultured at no charge will continue to be done without a donation. WebSource: http://www.sky.net/~dporter/MSCFSABX.htm


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## Guest (Jan 18, 2001)

Well, I feel like I need to respond to this one considering I am doing the Antibiotic Protocol for my mycoplasma pneumoniae and chlamydia antibody (not std). We all do have bacteria (mycoplasma) but some of us have way toooo much and it can cause more problems with us. We just start feeling sicker and sicker. I have fibro and lupus and have been on the AP (antibiotic protocol) now for 6 months and seeing a little bit of improvement but nothing major. It is a slow pulse therapy and it takes a long time to start seeing results for some people. I am having a few yeast issues but getting that under control with diet change (low carbohydrate diet), no sugar, sweets, bread and currently on diflucan and store cream. I still fully believe in this protocol. There are too many success stories with it and my blood numbers are coming down very slowly. It's the patience thing that I am having a hard time dealing with, ya know? I want to feel better YESTERDAY!!!!!! lYNNE


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## NickT (Oct 3, 2000)

So, that article seems a little old, what is Pathobiotek doing today?Let's look at the current Annual Report. http://biz.yahoo.com/e/000816/pbtk.ob.html Geez, that doesn't look very promising does it. Still, anymore recent information? http://biz.yahoo.com/bw/001211/tx_pathobi.html LSynatschk, none of my comments are meant to reflect on your progress. I'm very glad that you are starting to show better numbers. Please keep us updated on your progress.The vitamin/oil theory they propose in the original article, still makes good sense to me. The IBS forum is tooting the antibiotic cure, as the possible solution to their woes.Keep on keeping on![This message has been edited by NickT (edited 01-18-2001).][This message has been edited by NickT (edited 01-22-2001).]


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## trbell (Nov 1, 2000)

NickT, and others. I'm looking for good recent sources of information on vitamins and bacteria in what seems to be a combination of ibs and cfs.tom (former ibs a,d now ibs + cfs)


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## moldie (Sep 25, 1999)

Hi NickT, Sorry I didn't reply sooner. I read through it quickly one night. Didn't know what to think. This time, I clicked on the URL at the bottom of your first post. Very interesting reading. I am currently taking B-Complex, Vit A, D, and a Calcium-Magnesium supplement. I also take the Bifodus type of Probiotic and some flax meal and oil from the seed, which seems to help when I am C. Did a little too much carbs the last two days (bread, cheesecake, pasta alfredo), so am feeling bloated, and having cramping and soft-stooling, so better switch to the Caltrate Plus. I'm of course afraid to work with antibiotic therapy since my Candida diagnosis and treatment. As you know, I have been discussing this on the IBS board, which is why I haven't been over here of late. If I had to choose one condition over another, I would choose fibro over a candida infection any day. (Sorry that you had to go on the Diflucan Lynne. I hope it helps with your symptoms.) Of course I would choose fibro over MS, Lupus, and some of that really bad lyme stuff that can happen that I saw at the site too. I was interested in the HHV-6 info, as they say a lot of fibro patient in a study that was done, were found to have this. Here is an ABC link I saw on it: http://lymedisease.about.com/health/lymedi...nion%5F108.html All of it is scarey, alright. The fact that some of these conditions seem to over-lap is disturbing. There is so much information that is "experimental" out there. Guess that is where it all begins when little is known about the cause of a condition.Take Care Everyone,M.


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## NickT (Oct 3, 2000)

trbell, Moldie, could I ask you join us on the other thread, "Nick lands at PubMed"Be easier to maintain one thread, rather than get a dozen started.Thanx - NickT


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