MS – ADDRESS TO AN MS SUPPORT GROUP
by Lynn Hinderliter CN, LDN
I would like, first of all, to define what I will, and will not, be speaking about. I will not be addressing the diagnosis of MS, nor its development, nor even its manifestations in the body, because I am sure that whatever there is to know along those lines, you already know. Additionally, I am not a Doctor: my area of expertise is the effect of diet on the functioning of the human body. MS
I hope you will humor me while I develop a metaphor that will carry us through much of what I have to say this evening! I would like you to imagine that when we are born into this world, we are handed a redemption slip for a house: one person, one house. No favoritism, no choosing.
We get the house our ticket entitles us to: it may be a castle, it may be a shack: it may be sturdily constructed, it may have hidden defects within the walls: it may be built to last a lifetime, it may be shoddily constructed, and begin to fall apart in just a few years. Whatever the case, this is what we will have to live in all our lives.
Now let us suppose that things begin to go wrong in our own personal house: perhaps the wiring in the walls is shorting out, perhaps the roof is leaking, the paint is peeling .Perhaps we have been holding wild parties in our house and broken the windows, or been smoking heavily and stained the ceilings . Whatever the cause, suddenly all is not well in our private world. Probably, if we are not fix-it-up people, it takes us quite a while to find out precisely what IS wrong – and then we are told we need the proper expert to fix it. Some of us won’t be able to afford the proper expert: some of us don’t want to deal with the mess that the repairs will cause: – we may even decide we can live with the inconvenience for a while, which of course usually means that by the time we get round to taking care of it. it will be much harder to fix! Some of us may have a tree fall on our roof and have to take care of the devastation immediately, or a flood may undermine the foundations.
Let us now take this metaphor a step further, and say that the house-fixing experts out there have a very mixed success record. You have personally spoken to people who have had their roof fixed, only to have the walls fall in on them: or when the ceiling was replaced, the wiring in the walls caught fire. You don’t know what to do. Then you begin to hear from people who say they have had some success re-building their houses themselves. They say “it will never be a castle, but at least the roof no longer leaks, and the windows are fixed – it should last me for years, and I feel good about it”
You think “I could never do that”. But this is not true: my message this evening is that EVERYONE can make their house a better place to live in! It doesn’t make sense to let it fall down around you when on all sides others are saying “this is what I did, and it helped” – and they are also telling you that it DID NO HARM.
Do you remember when the American Heart Association said that diet could not have anything to do with heart disease? Do you know what they say now? Do you remember when the Cancer Foundation said there was no connection between diet and Cancer? Do you know how long the FDA spent refusing to accept the connection between Folic Acid and birth defects? Nearly 10 years!
It is my personal opinion that nearly every degenerative condition of our physical ‘house’ is diet-connected, and can be improved by diet. Those fortunate people who have been issued sturdy houses may only need to perform a little preventative maintenance every now and again, but those of us who have shakier structures have a more intensive programme to follow.
To digress from houses for a moment, let me take a few moments here to lay out for you my personal understanding of the state of nutritional research and MS at the moment.
This is a very complicated and difficult situation to address nutritionally, comparable almost to the total collapse of your house, where every system has to be assessed and repaired to make it safe to live in again.
From a nutritional point of view, it is hard to make order out of all these things: so many things have to be addressed: allergies, faulty absorption, stress, immune dysfunction, inflammation, toxic metals – this is one of the reasons why MS sufferers looking at a nutritional approach are so often daunted :”Do we have to take so MANY things?” To go back to the house, when the entire structure has collapsed, its not going to help just to fix the plumbing: what is needed is a complete programme that addresses all the identified problems in order – that way, you will end up with a home that fills your needs!
|During the course of my research on MS, I came across a remedy which, while it is not natural and therefore would not normally be something I would mention, has had such a high success rate that I would be remiss not to bring it to your attention.Here is an interview with the Doctor who has investigated LDN’s use (http://lowdosenaltrexone.org/ldn_and_ms.htm)Here are testimonials of actual people who use LDN
Here is how to find a Doctor who will recommend LDN – you will need to register to join the Forum. (http://ldn.proboards3.com/index.cgi?board=looking)
Like any treatment, it is enhanced by supplements, nutrition and exercise, but it holds out such promise! Please let me know if it helps you!
Here is my program, and those who follow it do not get “cured”, but they do feel significantly better.
1) Try to identify stress factors and either eliminate or neutralize them. This means following the wise old adage – if you can change things that worry you, do it! If you can’t change them, don’t worry about them! This is easier to say than to do, I know: but IT CAN BE DONE! External stresses of this nature affect your body by stimulating, among other things, adrenal response. This in turn compromises your immune system. Both of these situations increase nutritional requirements meaning that if your are already consuming an inadequate diet you are more likely to become sicker, and if you are eating well and supplementing, you are going to need more. A point of interest here is that a Doctor Reder M.D. of Chicago autopsied ten MS patients and compared their adrenal glands to those of three patients who died of ALS (Amyotrophic Lateral Sclerosis) He found that in all cases the adrenals of the MS patients were one third larger in size and weight. It seems that MS patients are highly reactive to stress.
2) Allergy identification. The two most serious allergies for MS patients appear to be milk & dairy generally, and gluten. Definitely you should test to see whether these are a factor for you , and if they are (if you had ear infections as a child, be pretty positive they are!) consider them poison, and eliminate them totally. Other substances may also be a problem for you -an effective way you yourself can check to see what intolerances you have is to try the Coca Pulse Test or the Rotation Diet.
3) Exercise. There can be not doubt that loss of muscle control and range of movement can at least be minimized by performing Yoga exercises. These are gentle movements designed with purpose, that can help you at any stage. There are good books and videos that you can purchase to guide you. Very often contractures and reduction in mobility come about from not taking steps immediately to counter-act them – use it or lose it, the saying goes, and it is very applicable here! It’s worth remembering, too ( and repeating to oneself over and over when the flow of energy is low) that exercise ENERGIZES you!
4) Proper diet. Absolutely essential for MS sufferers is a diet high in fresh fruits and vegetables, particularly green leafy vegetables. Avoid sugars. The other important factor is AVOIDING ALL SATURATED AND TRANS FATS, and concentrating instead on polyunsaturated oils . Fish oil is very beneficial, corn oil is pro-inflammatory and should be replaced in your kitchen with olive oil. Be sure that you are avoiding foods to which you are allergic or intolerant.
5) Supplementation. This is a long list – don’t be alarmed! But believe me when I say that this program works with many people to help MS. It seems to be most successful with people who have been recently diagnosed, but even those with long-standing problems frequently experience improvement.
A high potency multi- vitamin.
Rationale: MS means high nutritional requirements: this is insurance that you are getting all the nutrients, even if you are restricting your diet. Make sure that the brand you buy is hypo-allergenic, or you may do yourself more harm than good – and if it has colorings or preservatives, look for another brand!
Extra folic acid and B12, extra B6 – There is much evidence that the absorption of B 12 is impaired with MS patients: Dr. Reynolds of King’s College hospital in England was surprised to discover this deficiency among humans, but when two of the patients he treated with B12 had been followed for more than a year, and their conditions had not deteriorated. Dr. Reynolds measured B12 and folic acid levels in 29 cases of Ms, and discovered low B12 in all of them – 9 had also low levels of Folate. We suggest the sub-lingual B 12, as it is hard to absorb. In fact, I feel it would be of benefit to MS patients to have the acidity of their stomach secretions measured, as hypochlorhydria is associated with low B12, and a host of health problems.
Many of the enzymes needed for protein formation, and energy, are dependent on B6. It is also involved in the metabolic pathways of fatty acid conversion.
Vitamin D (I recommend Cod Liver Oil or Vitamin D3)
The Role of Vitamin D in Multiple Sclerosis, Brown SJ, Ann Pharmacother, 2006 May 9 [Epub ahead of print]. (Address: Drug Information Service, Skaggs School of Pharmacy, College of Health Professions and Biomedical Sciences, University of Montana, 32 Campus Dr. Skaggs, Bldg 217, Missoula, MT 59812-1522, USA. Fax 406-243-4353. E-mail: email@example.com ).
Summary: In a review of studies related to the role of vitamin D in the prevention and treatment of patients with multiple sclerosis (MS), it was concluded that supplementation with vitamin D may help to prevent the development of MS and may help to decrease the exacerbation of MS symptoms in persons already diagnosed with MS. After searching Medline (1966 through April 2006), International Pharmaceutical Abstracts (1970 through April 2006), and additional references found from identified articles, several studies involving vitamin D and MS were identified. Supplementation with vitamin D was associated with a 40% reduced risk of developing MS according to the results of a large, prospective, cohort study. Supplementation with vitamin D was found to decrease the exacerbation of MS symptoms, according to four smaller, uncontrolled studies. Finally, in a study involving mice, supplementation with vitamin D was found to prevent the development and progression of an animal model of MS. The author points out that in general, the studies to date have been carried out in small populations, and the results may be confounded by variables such as additional vitamin and mineral supplementation. Despite these limitations, the results of this review suggest that vitamin D may indeed have an important role to play in the prevention of MS and as a therapeutic agent in the treatment of patients with MS.
Vitamin E – This is very important for MS patients, because of the danger of oxidation of the fatty acids. Make sure that the E you are buying is d alpha tocopherol, and labeled so there can be no doubt. Synthetic Vit. E has only one third of the biological activity of the natural. Aim for between 1200and 2000 i.u a day, working up gradually – particularly if you have high blood pressure. Vitamin E is essential for oxygen transport in the body, and protects cell membranes from oxidation.
Vitamin C, with bioflavonoids and rutin. I also suggest taking Pycnogenol, because of the research connecting it to micro-circulation, of extreme importance to the CNS. It is a bioflavonoid. Vitamin C is an immune system supporter, and an antioxidant. It also mediates in the conversion of fatty acids to prostaglandins, which are (among other things) inhibitors of inflammation. At least 1000 mg p.d.
Multiple mineral. Mostly for rounding out your protection. It is unfortunate that the Calcium orotate researched by Dr. Nieper in Germany, and used so successfully in MS cases, is still not available in this country due to the actions of the FDA. I hear, though, that it may be again soon. In a multiple mineral you will find zinc and manganese, which are very important to the immune system, and to several enzyme systems.
Silica – I recommend orthosilicic acid, which has research to support the link to lowering aluminum in the body.
Phosphatidyl Choline – One of the constituents of myelin – essential for proper nerve function. This can be taken in concentrated capsule form, or as lecithin granules, or in both forms. 2 tblsps of the granules, or 3 capsules of the concentrated form is usually recommended.
Evening Primrose oil – source of EFAs Of all the supplements, this is the one that has perhaps generated the most excitement because of the incontrovertible benefits. One group reported by 65% that they saw an improvement in general health, and of these 43% said their condition had stabilized. Depending on the strength of the capsules, from 3 to 9 a day are recommended.
Fish liver oils .There is an interesting body of thought that suggests one of the factors in MS which accounts for its prevalence in more northerly climates, is that in previous times when diets were more specific to the region in which you lived, there were sources of Omega 3 fatty acids available to those living further North which are ignored nowadays: this is why fish from cold waters, and plants that grow in colder climates such as canola and flax, are richer in Omega 3s. These oils are essential for the brain and nervous system – MaxEpa supplements are a good source – aim for approximately 1000mg p.d.
Adrenal, and pantothenic acid . The reason for this is the observed problems MS people have with their adrenals, plus the stress involved in the entire MS situation. Adrenal extracts support the system, and pantothenic acid helps adrenal function.
Octacosanol This oil comes from wheat germ, and helps with the fatigue and exhaustion – it increases energy and endurance, and also is a source of a waxy alcohol thought to be a component of myelin. Aim for app. 30 minims p.d, or 2000 mg.
Proteolytic enzymes This is some very exciting new research carried out by Dr. Christine Neuhofer, M.D., herself an MS sufferer. She and her colleagues have treated more than 350 patients with enzyme therapy. In one study, out of 107 patients they found that 45 improved markedly, and 26 remained stable. 24 dropped out for financial reasons, and only in 12 cases did deterioration continue. ( Those patients had all been treated with azathioprine, which destroys the immune system). The protocol for taking these enzymes is complicated, and set on a case by case basis, but using the enzymes at one’s own pace is not harmful, and could be very helpful.. I recommend either Renewlife’s Repair, or Inflazyme by American Biologics or Wobenzyme.
Sphingolin – a myelin basic protein.
This is based on some interesting research that theorized ( and results seem to bear it out) that introducing into the digestive system a substance similar to the body’s own myelin sheath would cause the foreign substance to be attacked instead.
Alpha Lipoic Acid – Reactive oxygen species are required for the phagocytosis of myelin by macrophages.
van der Goes A, Brouwer J, Hoekstra K, Roos D, van den Berg TK, Dijkstra CD.
Department of Cell Biology and Immunology, Faculty of Medicine, Vrije Universiteit, BT Amsterdam, The Netherlands. firstname.lastname@example.org
Reactive oxygen species (ROS) are thought to be involved in the pathogenesis of multiple sclerosis (MS) and experimental allergic encephalomyelitis (EAE). In this study we showed that the phagocytosis of myelin by macrophages triggers the production of ROS. We also demonstrated that ROS play a crucial role in the myelin phagocytosis. Blocking the ROS production with NADPH oxidase inhibitors (100 microM DPI or 10 mM Apocynin) essentially prevented the phagocytosis of myelin. Furthermore, scavenging of ROS with catalase (H2O2) or mannitol (OH-) decreased the phagocytosis of myelin by macrophages, whereas superoxide dismutase (O2-) did not show this effect. In addition, Lipoic acid (LA), a non-specific scavenger of ROS, also decreased the phagocytosis of myelin by macrophages. In our results, we demonstrate for the first time that ROS appear to play a regulatory role in the phagocytosis of myelin.
PMID: 9916881 [PubMed – indexed for MEDLINE]
CoQ 10 – Some studies have suggested a deficiency of this nutrient in MS patients; it plays an important role in oxygen transport and use in the body, and therefore is implicated in energy loss, and a faulty immune system. I suggest between 30 and 100 mg p.d. for general benefits.
I would like to add a few thoughts here. There are those who feel that MS is often accompanied by Candida overgrowth: this is a whole other subject, one with which I deal on a daily basis, believe me. If any of you feel that this is a factor with you, please feel free to contact me and we will go in to what needs to be done for that problem.
Another condition that is sometimes believed to be a factor is hypoglycemia. Again, this is a subject that would require another entire monograph! If you feel that blood sugar is a factor in your case, just get in touch with me and we will address it.
Tryptophan – Research in November 2005 at Stanford University suggests that L-Tryptophan can beneficially influence immune response in MS sufferers. The research at this point is only on mice, but the resulting effect of fewer relapses, and less severe disease modalities, was very encouraging. See RESOURCES at right for link to study. (Science (2005;310:850-855) Nov 2005) It has even been suggested that immune-system-induced inflammation was reduced in the mice to the point where some neurological function was regained.
Inosine – Some interesting research is currently being done on the relationship between Uric Acid levels in the body, and MS. See RESOURCES.
The supplement they are using is a rather abstruse substance called Inosine, which was previously only known by body builders when for a brief period it was recommended for muscle growth. Perhaps they were on to something after all! The theory is that low levels of Uric Acid contribute to the progression of the disease, Inosine raises uric Acid levels, and therefore may be beneficial in stopping the progression of MS.
6) Attitude. This is my final entry – and we’re back to the houses again! You remember the experts? The ones that say you can’t repair your own house? There are hundreds of people out there who have done just that: they have set about it with their own tools, and they have in most cases repaired some of the damage to their dwelling, and in some cases nearly all of it. It hasn’t been easy – perhaps some of them can’t use all their rooms any more. Perhaps their favorite pictures have been destroyed. But they are living lives of hope and determination, making the best of what life has to offer. They are heroes under incredible odds.
I find them all the time on the Internet exchanging tips and ideas, victories and defeats: and I have a tremendous admiration for them! They have not only repaired the damaged and failing structures we call our bodies through their own efforts, they have surrounded them with beautiful and delightful gardens of the soul, and I salute them. Staying positive, and being prepared to take part in your own destiny, researching the possibilities, staying open to their potential – never losing hope. Never give up – look around your house and feel you can say – I propped up the foundations – I shored up the walls. When the lights went out, I found a way – and this pleasant paint, these fresh curtains – I did it myself. I did my best, and I NEVER GAVE UP!
2006 research into MS and Vitamin B3 – NIcotinamide – http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=14531
More information about the role of gluten in inflammatory disorders – http://www.eurekalert.org/pub_releases/2002-09/sumc-srf092402.php
The role of Histamine in MS – possible Allergy connection – http://www.tldp.com/issue/11_00/ms.htm
Details of a study on the use of INOSINE in MS – http://www.msaa.com/updatable/hupp.html
Research connecting Viral effects rather than Immune effects to MS – http://www.thisisms.com/article63.html
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