The question of whether a certain treatment can be said to have been tried or not is not as black and white as it first seems.
When one is talking about symptom-modifying substances/drugs particularly where there is a small difference between the lowest and highest dose usually taken, determining the effect of a trial is fairly simple. Trying treatments such as Hawthorn extract, Baclofen, Piracetam, Tramadol and other prescription pain-relieving drugs or Neurontin for 3 months at the recommended dose constitutes a very fair trial of the benefits of these treatments. What you see after 3 months or so is what you will get - although additional or new negative effects may appear over time and benefits may possibly also lessen over time.
When one is talking about nutrients that are absolutely essential to life and healing without which no other treatment can possibly restore anything like full-health and wellbeing, determining whether or not a true trial has been completed is more complex. Completing a truly fair trial of these essential substances is also far more important for patients with serious diseases.
What factors might make a trial I’ve done unreliable or incomplete?
Some of the factors which may make sure a trial of an important or essential nutrient is not incomplete or invalid include the following:
1. Adequate duration of the trial. Many nutrients take 3-6 months to show significant effects and in some cases several years or longer may be needed to see the full effects. Symptom suppression is fairly instant, but actual healing of disease takes time. Healing of long-term disease is an even slower process.
2. Adequate dosage for you as an individual, for this time in your life. The dosage is everything with many essential nutrients. People vary in their needs for basic nutrients by many hundred percent. This makes RDI tables ridiculous, particularly as Dr Hoffer also explains that in ill people the range is even greater. In addition to biochemical individuality, people that are seriously ill and/or that have long-standing deficiencies will need far more of a nutrient than will healthy people.
Age and gender and many other factors also influence how much of each nutrient you need at a particular time. While one person may be fine taking in only 5 mg of one of the B vitamins daily, another person may need several grams of that vitamin for a period of time for their serious health problem to start improving. It is important to find the optimal dose for you of each nutrient, your own ‘optidose.’ Sometimes this is determined using various tests and measurable physical changes and sometimes by the reaction of the body to different levels of the substance, or a combination of all three.
3. Adequate frequency of dose. Frequency of dose is particularly important with the water-soluble nutrients, in particular the B vitamins and vitamin C. Frequency of dose is everything with vitamin C. It can sometimes be the difference between life and death and can often be the difference between seeing a mild improvement and a large one.
4. Part of an entire program. It is inappropriate to test each nutrient individually, as if it were a drug. These substances all work together and are synergistic with each other. It is never a good idea to just take large amounts of any one or two nutrients while neglecting all the others. The B vitamins must be taken together in similar amounts, it is not a good idea to just take one or two of them in large amounts, for example. All the different nutrients work best when taken as part of a comprehensive nutritional regime, or at the very least when taken with their most important co-factors and synergistic nutrients.
5. Part of a program which stops further damage being done to the body. The positive effect of any treatment will be masked or completely hidden if overexertion, poor diet and serious chemical exposures are continuing. It is impossible to towel yourself dry if you are still standing under the shower, one might say.
6. Right type of the nutrient taken. Taking the wrong form of a nutrient can stop it from having the desired effect. For example, even though they are both forms of vitamin B3 niacin has a very different effect to niacinamide. An injectable, liposomal, sublingual or coenzymated form of a supplement can also have very different effects than a pill or capsule taken orally.
7. Not looking at gut health first. Very poor gut function may stop supplements being absorbed properly.
It is so important with essential nutrients not to dismiss them easily, based on insufficient data. Too quickly writing off substances that your body needs to live and to heal as ‘not worth taking’ or ‘ineffective’ is really unwise. These are not drugs which either work or don’t work, these are nutrients which every body needs to carry out all the hundreds of enzyme reactions and other bodily processes necessary for life. It’s non-negotiable, whether other treatments are tried at the same time or not.
No matter what else you do, if you don’t have adequate levels of vitamin D in the body, you will have an increased likelihood of contracting infections and poor bone health. If you don’t have adequate levels of magnesium in the body you will have stiff and possibly also painful muscles, poor bone health, poor sleep, may find it difficult to relax and will have problems with detoxification. If you don’t have adequate levels of vitamin C in the body almost all bodily processes will not be running as well as they should and your immune system will not be functioning at anything like its full capacity. The list goes on. No drug can make up for these deficiencies if they exist.
But what if taking nutrient ‘x’ made me sicker?
Having a bad reaction at one time to some of these substances does not necessarily mean that they should no longer be taken or that they do not suit you at this time. Other factors entirely may be at play.
Bad reactions to taking important and essential nutrients can be due to the following factors:
A. Fillers and binders. Different products will use different fillers and binders in their products. A patient may react very badly to a supplement only to have no reaction at all to the same supplement from a different manufacturer. It may be necessary to try a few different brands if a bad reaction occurs, or where possible to buy a pure powder form of the supplement which does not contain any extra ingredients at all. Rarely, reactions can also occur to the plastic containers that powders are stored in when the plastic off-gasses into the supplement and reactions to plastics can also occur when plastic IV bags are used to deliver nutrients by IV.
B. Allergies to the source of the nutrient. For example, ALA may be sourced from potatoes and vitamin C may be sourced from corn. Severe allergies to these foods may mean that one also cannot take supplements that use that food as a source. It may be necessary to search out nutrients with different sources.
C. A healing or detoxification reaction .This can easily be mistaken for an intolerance to a particular substance when in fact it indicates that the body had a real need for the substance and is using it to begin healing. Sometimes more marked reactions can occur when a person is very low in a nutrient, as the supplementation allows bodily reactions and processes to occur which had not been possible previously.
D. Not starting gradually. Starting to take some nutrients at a full-dose all at once can make a person very ill, while the exact same dose worked up to over weeks or even months may cause no problems at all. Patients with M.E. in particular will often have to raise doses of some nutrients very slowly.
E. Lacking supportive therapy. Starting to take some nutrients singly and at a full-dose all at once can make a person very ill, while the exact same dose combined with the appropriate supportive nutrients may cause no problems at all.
F. Taking the wrong form of the nutrient. This can cause problems with tolerance or a lack of positive results. Problems can arise with cheaper brands not using the most appropriate form of the nutrient and instead using a cheaper substitute with a similar sounding name. The products made by cheaper brands may also not contain the ingredients listed on the bottle at all. If possible, buy products from reputable brands that have been independently tested and certified.
G. Not taking the nutrient as recommended. Nutrients taken on an empty stomach instead of with food, as recommended, can cause problems.
What does constitute a fair trial of a nutrient?
Each nutritionally educated doctor may define a fair trial of each substance differently. So it is up to us as patients to find the best doctor we can to advise us on these issues and also to do as much reading of high-quality material produced by the experts in this field as we can so we can cope up with our own answers.
Working out an appropriate dosing range for each nutrient involves:
Talking to your nutritionally educated doctor about his or her experience and recommendations in this area.
Researching what is the safe dosing range for each nutrient and what is the usual dosing range for this nutrient for someone in your condition.
\Having the appropriate tests (if applicable) as often as necessary.
Monitoring the way your body reacts to the nutrient at different doses.
What if I can only tolerate a small dose? Are smaller doses are better than none?
Sometimes only a very small amount of a particular major vitamin or mineral can be tolerated. The body is just too ill to cope with the boosted bodily processes and extra healing it helps to occur.
Even when this is the case, it is still very important to keep taking the small dose you can, even if it is only a half tablet a fortnight or a month. Every bit helps and you may find that you can raise the dose very very slowly upwards over the months without problems. This may well not be an easy process but it may be very worthwhile.
Patients that are very ill and sensitive to treatment should always use and trust their own judgement about whether or not they are strong enough to trial any new nutrient at a particular time. Even then, an extra warning about going extra slow probably couldn’t hurt. Nobody is more motivated to get well and to start getting well than someone very severely ill and so it can sometimes be tempting to push forward with a program a little more than is wise but this should be resisted.
Stopping a trial because you need time to recover and rebuild your strength for a while makes sense. But none of the major nutrients should be written off, completely abandoned or judged a ‘failed trial’ unless they really have been thoroughly investigated and had an in-depth fair trial which has shown that it really is not possible for any of the substance to be taken by you at this time.
Genuine intolerances do occur in serious diseases such as M.E. and others of course, but it is just so important not to assume that this is what has happened when in fact it may be a filler or nutrient-type issue and you may be needlessly missing out on correcting a very easy to treat low nutrient level that may be causing or contributing to some of your worst symptoms and holding you back from improvement. The body needs all the tools to fight serious disease that it can get!
Are bigger doses always better? Do I need to take the biggest dose possible to get the biggest benefits?
No. There is no point taking far more of a nutrient than your body needs and can use. It wastes money, wastes bodily energy and other resources with its processing and assimilation, and can also possibly have undesirable side-effects or cause an imbalance in the body or with other nutrients in some way.
The goal of nutritional or orthomolecular medicine is to work out what the optimal dose is of each nutrient needed for the individual’s body to function optimally. As well as it possibly can. This means that one must avoid taking too little AND too much of each nutrient.
Sometimes the term ‘mega-dose’ is used, but orthomolecular experts Dr Levy and Dr Hoffer explain that a more accurate term is ‘opti-dose.’ Large doses are sometimes used when the patient has a very high need for a particular nutrient, but the goal of such a therapy is to give the patient their optimal dose or opti-dose of a particular nutrient at that point in time. It is not to have all patients arbitrarily takes the largest doses of each substance possible. It is also uncommon for these large doses to need to be maintained over time.
With vitamin D, for example, I don’t think one can be said to have really ‘tried it’ and explored what it has to offer if one hasn’t maintained a blood level of 50-70 ng/ml (either through sun exposure or taking vitamin D3/FCLO or both) for at least 6 months. Just taking an arbitrary 400 – 2000 IU daily just doesn’t cut it if you have a severe deficiency and haven’t had much sun exposure for years as is the case with many housebound and bedbound patients.
At blood levels below this, probably not much benefit will be felt, if any, and especially if other deficicncies are not also addressed. Getting the appropriate vitamin D testing and learning about what are considered optimum vitamin D levels is essential. It is so easy and inexpensive and vitamin D levels are often very low in severely ill patients.
Working out the correct dose of vitamin D is fairly simple, as it is with some of the other nutrients. Selenium for example is almost always taken at a dose of between 200 – 400 mcg and zinc is almost always taken at a dose of between 20 – 60 mg.
My opinion on what would constitute a ‘bare minimum’ solid trial of vitamin C is for the severely ill patient to slowly work up to a bowel tolerance oral dose very slowly, and to then maintain it for at least 6 months. This might be anywhere from 15 – 40 grams or more taken daily in perhaps 6 – 10 divided doses. Orthomolecular experts explain that there is no condition that vitamin C at the right dose can’t help, and if benefits are not seen this is an indication that a higher dose is needed. Benefits in M.E. may only begin to appear once a dose of 10 – 20 g daily is reached, for example. A full trial of vitamin C for severe disease might also involve 2 – 6 sachets of liposomal vitamin C also being taken daily in addition to the bowel tolerance dose taken orally. Generally the more ill a person is the higher their requirement for vitamin C becomes. Thus what is a fair trial with vitamin C depends entirely on how ill someone is. What is a fair trial for seasonal allergies is not a fair trial for M.E. or any other very serious disease.
Dr Emanuel Cheraskin, Dr Ringsdorf and Dr Sisley explain in ‘The Vitamin C Connection’ that,
"There are more than ten thousand published scientific papers that make it quite clear that there is not one body process (such as what goes on inside cells or tissues) and not one disease or syndrome (from the common cold to leprosy) that is not influenced -- directly or indirectly -- by vitamin C."
Some of my biggest mistakes include the following:
1. Taking inadequate doses. A good doctor said to me many years ago that ‘if something is working for you, it is often worth seeing if maybe taking more of it will give you even more of an improvement (where appropriate), your body may need even more of it than you are currently taking.’ I have been really taking this advice to heart lately and I feel it has been paying off. Many of the things I am taking now and that are helping me to noticeably improve each month I had taken for many years but at (unbeknownst to me) completely inadequate doses. This includes primarily vitamin C, vitamin D, the B vitamins, CoQ10 as ubiquinol, iodine and magnesium. The dose really is everything.
I am angry at all those poor quality books and websites that I put so much faith in that were all parroting the same unscientific and fanciful nonsense about how 1000 – 3000 mg of vitamin C, 400 – 800 IU of vitamin D, 15 - 50 mg daily of each of the main B vitamins, 90 – 180 mg of CoQ10 as ubiquinone, 200 mcg of iodine and 400 – 600 mg of magnesium daily is a perfectly adequate dose for everyone. It’s utter hogwash! A complete fantasy based on no good science at all.
I remember I actually felt slightly smug back then, thinking that not only was I was taking the right amounts of these nutrients but even a little bit extra as an insurance policy. I thought I was guaranteed to be getting the maximum benefits possible from each of them. I’ll also admit that I felt slightly smug that I was being very financially responsible, and spending only what was really ‘necessary’ on nutritional supplements. But all along my body was getting nowhere near the levels of these nutrients it actually needed and nowhere near the levels it needed to do any real healing. I’d far rather have had better health all these years than have saved the few measly dollars I did, it goes without saying. It was such a false economy and I bitterly regret it now.
2. Trying each supplement individually. I had no idea that supplements worked synergistically, and so I used to try each treatment one by one to determine of it was worth continuing. I didn’t understand that they worked very differently to drugs and did far more than just suppress symptoms and so should not be trialled like drugs. I’ll also admit that I again felt slightly smug that I was being very financially responsible, and spending only what was really ‘necessary’ on nutritional supplements by only continuing with those things that gave me a noticeable benefit within a few months.
I thought this was the smart way to go about things, but now the word ‘smart’ isn’t the one that first comes to mind when I consider this past behaviour of mine. It was a misuse of logic based on incomplete data. I am getting a far more positive effect now from trying more optimal doses of many essential substances at the same time. Everything works together but only as well as your weakest link.
3. Not starting supplements gradually enough (vitamin C, lipoic acid).
4. Mistaking healing reactions for an intolerance to a nutrient (vitamin C, lipoic acid).
5. Not fully understanding the enormous importance of gut health and of diet. As I have recently learned, good gut health is vital to recovering from any disease as the gut houses half the body’s detoxification system and half of the immune system. Food should be treated with the same respect as a prescription drug.
6. Disparaging treatments which were suited to a variety of different diseases and instead almost totally preferring to look at the pathology specific to M.E. to see how this might suggest appropriate treatments. That one can get very good and relevant advice from orthomolecular experts that know nothing about M.E. really is great news. Dealing with people that are experts in both Orthomolecular medicine and M.E. would be ideal. But issues surrounding detoxification, good gut health, determining the opti-dose of the major nutrients and boosting the immune system are common to many neurological diseases and other diseases, including M.E.
These issues really are very important in M.E. and addressing them can promote real healing in M.E. There is so much good information available, just waiting for us to take notice of it. Much of it is even free.
7. Disparaging treatments modalities such as detoxification, sauna therapy, juicing and enemas too easily and putting them in the ‘lightweight’ category and without properly researching them adequately. Detoxification is key, as the theory is that toxin and heavy metal accumulation and other factors lead to a lack of nutrients, which then makes you far more susceptible to infections. This is then where the M.E. virus comes in. So detoxification really is getting to the root cause of the illness, although of course we do know that M.E. is caused by a virus. M.E. is caused by a virus but the fact we are ill may be due to this virus combined with a lack of nutrients and a high toxic load and so treating all 3 of these problems just makes sense.
8. Not understanding the ‘total load’ concept. My worst symptoms were cardiac, cardiovascular and neurological and so I wanted only cardiac, cardiovascular and neurological treatments. I didn’t understand that improving my liver health and lessening my toxic load generally and so on, would be the best way to improve those symptoms. You don’t just detoxify to improve liver health, but because it helps improve everything, all your worst symptoms.
I used to look at nutrients as drugs and wondered what they would each do for me and if they would be worth trying to improve a particular symptom. I only wanted to take a small number of the most vital ones. Now I look at things very differently. My attitude now is of knowing from the start that all the major nutrients are worth evaluating and perhaps supplementing, and will improve my health generally in some way by facilitating healing. This is because my body actually needs them to function and to heal and this system of nutritional healing tools is only as strong as its weakest link.
It might not be easily noticeable at first or it might even make me sicker and it might not happen overnight but I’m confident that no matter what my body will function better and heal more with reasonable amounts of the most important nutrients rather than without. It has to.
I’m not sure if long-term severe M.E. can be completely or even almost completely cured as such, but I think working to heal as much of it as it is possible to heal is a worthy and exciting goal.
Opinions vary widely about all aspects of treating serious diseases. Even if you have very different ideas from my own about treatments, I hope that you have found some of the information here useful or helpful to you in some way.
All the best to everyone reading.
Note that the aim of this site is to provide a starting point for health and healing research for ill people; especially very overwhelmed and disabled ill people. This site provides recommendations, summaries and reviews of books but is not meant to be a replacement for actually reading some of these wonderful health books if the reader is at all well enough to do so. (Plus getting individualised advice from a doctor that is also an orthomolecular medicine expert if possible). There is no substitute for reading as many of these books as you can. The HHH site can only really hint at their full brilliance. The amount of insight, scientific references, logic, intelligence, compassion and experience in the recommended books will most likely amaze you. HHH aims to encourage people to do their own reading and learning, and to always make up their own minds. All content copyright Jodi Bassett 2006 - 2014.