Important extra treatment cautions and warnings relevant to M.E.
Note that folic acid supplementation without B12 supplementation can mask B12 deficiency and cause neurological damage in very rare cases. Folate should not be taken without additional B12.
Cysteine and N-Acetyl Cysteine supplementation should probably be strictly avoided by M.E. patients. (One doctor even speaks about two M.E. patients who both committed suicide due to the effects of taking just 1000 mg of NAC. This supplement can cause many of the physical problems seen in M.E. to WORSEN and for mercury to be released into the system.) Cysteine can also cause Candida to change into pleomorphic types that are more aggressive and difficult to eradicate. Note that those who have problems with NAC may also have problems with taking SAMe and whey protein. If you take Glutathione, take only the liposomal form.
Naproxen has been implicated in possible mitochondrial damage
Excitotoxins such as aspartate (NutraSweet/aspartame), glutamate (MSG), and homocysteine can cause cell death when their actions are prolonged. For more information about the need to avoid aspartame see links 1, 2, 3, 4, 5 and 6. M.E. patients also need to avoid: chlorine, fluoride, 5 HTP supplements, trans fats in food and tryptophan supplements. Unnecessary medicinal drugs should also be minimized. NSAIDS should be avoided in particular and can be replaced with Turmeric/Curcumin. Also very problematic are SSRIs which should be avoided if at all possible. For more information see this neurodegeneration PDF, which explains:
Although many factors can play a direct role in the initiation of neurodegeneration, the two forces which interact at the cellular level are free radicals formed by the reactive oxygen species and reactive nitrogen species, and secondly, excitotoxins, such as glutamate (monosodium glutamate or MSG), aspartate (i.e. NutraSweet) and homocysteine. Excitotoxins are neurotransmitters which can cause cell death when their actions are prolonged. Excitotoxins are neuro-toxins that are often added to foods, such as aspartame, and MSG (monosodium glutamate, also known by other names such as "natural flavors", texturized protein, "spices", etc.)
5 Hydroxytryptophan (5-HTP) is an alternative to the traditional antidepressants used to treat unipolar depression. 5-HTP is more likely to be well-tolerated than standard prescription antidepressants. 5-HTP is not a general M.E. treatment (and should be avoided by M.E. patients that are not suffering with significant depression) but may be used by some patients that have pre-existing depression or for whom depression has become an issue since becoming ill (particularly where this affects sleep). However, 5-HTP can cause problems in those with IBS-type symptoms and is generally not recommended for those with significant digestion or gut problems – or those with cardiovascular conditions or peripheral neuropathy. It can also cause decreased libido and extreme and vivid nightmares. One article explains about 5-HTP, ‘As you would expect, digestive disturbances and vivid dreams are both commonly reported side effects with all treatments that affect serotonin levels, such as the SSRI antidepressants, like Prozac or Paxil.’ 5-HTP can also cause hypomania, insomnia and euphoria which could cause serious relapse in M.E.
If depression is a significant problem, this is probably still a far better treatment option than standard antidepressants (along with St John’s Wort). However, it is advised that dosage start at a very low level and be raised slowly in case of side effects and that this medication be taken under medical supervision. 25 - 50 mg daily may be enough and higher doses may make side-effects more likely. If you notice mood swings, feeling ‘drunk,’ rashes or flushing, insomnia, worsening depression or gastrointestinal problems etc. it is important to stop taking 5-HTP completely (perhaps lessening your dose to zero over a few days to prevent withdrawal symptoms). Note too that 5-HTP and St John’s Wort should never be combined with each other or with MAOI or SSRI antidepressants drugs as this risks serotonin syndrome. Some experts also warn that 5-HTP is not suitable for long-term use and should be used for no more than 3 months (to prevent serotonin levels from becoming too high and because a tolerance may be built up to the medication).
Avoid Provigil as it stimulates nitric oxide, says Dr Paul Cheney. Dr Cheney also warns against the use of hyperbaric oxygen chambers in M.E. as well as Benicar. On Benicar he writes: “Angiotensin II has two receptors that we know of, and we only understand the first, AT1. When Angiotensin II binds to AT1, it increases the hormone Aldosterone, which in turn increases blood volume. Big issue! If you block AT1 with an ARB [like Benicar], down will go your Aldosterone, and down will go your blood volume, and you could be in a heap of trouble. ARBs that bind to AT1 will constrict blood volume.”
Having your tablets with low-fat meals or no fat meals will stop you fully absorbing some nutrients, as sometimes some fat is needed for absorption (eg. CoQ10 and vitamin D).
Antidepressants are very often poorly tolerated by people with M.E. Small doses of certain antidepressants may be prescribed to deal with symptoms of pain, sleep or depression (particularly pre-existing depression) but will not affect or improve the illness as a whole. The dosage used should always be very small (1/10th of a normal dose or less) but even at this dosage many people with M.E. cannot tolerate these drugs at all.
Some particular antidepressants may cause other serious problems: Doxepin is known to cause heart problems (which is particularly concerning considering the well known cardiac issues in M.E.) and Serzone (a drug which has been taken off the market in some countries but not others) is linked with liver failure.
Probably the most harmful ‘treatments’ for M.E. (along with the recommendation of antidepressant drugs) are cognitive behavioural therapy (CBT) and graded exercise therapy (GET). For more information on why these inappropriate interventions are so often forced on M.E. patients, and the extremely severe and long-term harm they can cause (including deaths) see: The CBT and GET database
The above comments apply equally to other psychologically based ‘treatments’ touted by some groups as being very beneficial or even curative for ‘chronic fatigue’ (a term used interchangeably with CFS and M.E. by these groups) such as ‘Reverse Therapy,’ ‘Mickel Therapy,’ ‘Emotional Freedom Techniques’ (EFT) and the ‘Lightning Process.’ These treatments may or may not be useful to those with fatigue caused by various emotional or behavioural problems, but they simply cannot improve authentic M.E. If a person has improved with these therapies they have not been correctly diagnosed with M.E. (or they have been lucky enough to have a natural remission of the illness at the same time these ‘treatments’ were undertaken).
Psychological therapies such as these can no more repair the serious organic damage to the brain, cells and organs in M.E. than it can do so for those with multiple sclerosis or Parkinson’s. Success with these treatments on fatigue sufferers has no relevance whatsoever to those with M.E. The only change likely to be seen with these ‘treatments’ in those with M.E. is a ‘lightening’ of their wallets! (as many have already commented.) As with similar therapies such as CBT however, the severely affected in particular (but also those with moderate M.E.) may also be made considerably more ill short- or long-term by these inappropriate and (physically and mentally) cruel interventions. They can often cause very severe relapse. If these treatments don’t work, the victim is blamed for ‘not trying hard enough.’ So there can also be a huge emotional cost from being subjected to what amounts to serious emotional abuse.
All these ‘treatments’ are, is well-publicised money-making scams designed to prey on society’s most vulnerable members. What they are doing is sicker than we are, truly. It’s lower than low. See: The CBT and GET database for more information and if family members are pressuring you to participate in scams such as the Lightning process, Reverse therapy, Mickel therapy, EFT and so on, see the new The Lightning Process (etc.) scam page.
Beta blockers (often prescribed for cardiac irregularities) can actually cause disease progression in M.E. and so are very much not recommended for M.E. sufferers. Forcing the body to operate at a higher level than it can cope with and suppressing or masking symptoms, only causes harm long-term. Beta blockers decrease heart rate and heart output and interfere with renin. Side effects of beta blockers include an increase in triglycerides, nervous syten disturbances (confusion, nightmares, depression, excitement), slow heart rate and left ventricular dysfunction. Congestive heart failure can occur due to the use of beta blockers! This is well known!
Some M.E. patients tell of significant improvements in cognitive abilities from taking nimodipine. Nimodipine (brand name Nimotop) is a calcium channel blocker specific to the central nervous system. Dr Sherry Rogers warns that, ‘calcium channel blockers have been shown by MRI to cause definitive shrinkage of the brain and loss of brain function, a side effect rarely mentioned by clinicians or news media. Bear in mind that since medications do not fix anything, they allow the underlying problem to continue uncorrected and actually accelerate. Meanwhile, new symptoms and new seemingly unrelated diseases are the inevitable consequence of this biochemical faux pas.’ Magnesium provides all the positive benefits of calcium regulation with none of the dangers and downsides of calcium channel blocker drugs.
It is possible that the drug midodrine also has the same problem as beta blockers – forcing the body to raise blood pressure and thus relieve some symptoms, but at the cost of long term health. The blood pressure is lowered in M.E. as a protective mechanism against death, forcing the body to override this mechanism seems ill-advised. Drug induced overexertion. If the orthostatic problem is only neurological, a problem of the wrong signals being sent from the brain to the body, then a drug such as this can absolutely be a very useful treatment. But where there is serious cardiac insufficiency and mitochondrial problems too, this treatment could be very dangerous. I would not try this medication myself and nor do I feel at all comfortable recommending it in any way to other M.E. patients. It seems a far safer bet to instead try products which actually improve cardiac function with no risks (not just mask symptoms) such as ubiquinol, magnesium, hawthorne and so on. (Note that this is just my personal opinion based on what I have read about the problems with beta blockers in M.E. etc.)
NSAIDS can make inflammation worse in the long term and can be replaced with Curcumin or other nutrinets. Aspirin and ibuprofen should also be strictly avoided. Aspirin taken daily can double your risk of having a stroke, increase damage to the eye and risk of deafness and all three of these drugs can lead to increased intestinal permeability. In ‘Detoxify or Die’ Dr Sherry Rogers writes,
Over 16,000 people die each year just from gastrointestinal hemorrhaging from NSAIDs, while another 100,000 get congestive heart failure from them. As well NSAIDs cause osteoporosis and hip and knee degeneration, necessitating joint replacement. NSAIDs as an example of only one group of medications, are fatally toxic to thousands of people each year by damaging joints, lungs, kidneys, eyes, hearts, and intestines.
Drugs do not cure anything, they merely turn off poisoned and malfunctioning pathways. That is why their classifications are anti-inflammatory, ant-acid, beta-blockers, alpha-blockers, calcium channel blockers, angiotensin inhibitors or ACE inhibitors, HMG COA a reductase inhibitors (cholesterol-lowering drugs), selective serotonin reuptake inhibitors or SSRI, etc. And by not fixing the underlying problem, they allow it to worsen as the innocent patient accumulates side effects from the drug as well.
Cortisone injections worsen the pain in the long-term.
Steroidal nasal sprays such as Rhinocort, used excessively, can cause Candida overgrowth in the throat.
The Marshall protocol is recommended for ‘CFS’ with an almost religious zeal by some patients and groups. There is no good evidence however, or any evidence that it is appropriate for M.E. or that it is safe for those with M.E. (or ahyone with a different disease which may qualify for a ‘CFS’ misdiagnosis for that matter!) This treatment can be very dangerous because (among other problems it causes) it actually exacerbates the immune system deficiencies of M.E. As you would expect, serious side-effects and relapses have been widely reported by M.E. sufferers. Some sufferers have relapsed severely with this treatment, and are still very severely affected years later. Some say they have come very close to death from it, or close to suicide because of how severely ill it made them even many years on. For more information please see: Paper 1, 2, 3 and Paper 4.
This treatment is just inappropriate for genuine M.E. patients. Many M.E. patients have heard just horrific first person accounts of this ‘treatment.’ It has ruined a lot of lives. Please don’t take this extreme risk if you have M.E. It may possibly help some patients (or it may not!) but those are not M.E. patients.
Zoltan Rona M.D. recently released a book called: Vitamin D: The Sunshine Vitamin. The best part of this book, for me, was his two page section talking about the unscientific nature of the ‘Marshall Protocol.’ Zoltan Rona M.D. writes, ‘I have witnessed a lot of crazy treatments over the past 30 years, but none are as abusive as the Marshall Protocol. This protocol is not only illogical but also downright dangerous. At best, it can be labelled as a pretence of scientific thought.’ Rona goes on to talk about the fact that ‘Dr’ Marshall is in fact NOT a medical doctor, but is an electrical engineer! He explains that the protocol, which promotes attaining very, very low vitamin D levels and taking antibiotic drugs long-term, is ‘damaging to one’s health and can lead to death.’ He advises anyone that is currently following this dangerous and illogical protocol to ‘get off it immediately.’
The Marshall Protocol scam has given so many very ill patients false hope and left them even sicker than when they began it, and also risked their lives. So three cheers to Rona for including some serious warnings about it in his book. I hope so much they will be heeded by those following the protocol and those aggressively promoting it to others.This pseudo-scientific ‘treatment’ has caused ENOUGH harm.
Taking the contraceptive pill or hormone replacement therapy increases the need for vitamin B6, vitamin B12, vitamin C, folate and zinc.
Many M.E. patients become severely ill, and relapse severely and/or long-term, with antibiotics. (The same is true of antifungals as well as different types of antivirals, although their use in M.E. is far more established. We know that M.E. is not a bacterial infection as is Lyme disease). If you do decide to try antibiotics for whatever reason, sure to always also take high-strength probiotics and extra B vitamins.
The Fluoroquinolone antibiotic drugs (Cipro, Levaquin, Floxin, Tequin and others) ‘are the most toxic and dangerous antibiotic in clinical practice today’ according to the Fluoroquinolone Toxicity Research Foundation. They go on to say, ‘We cannot even begin to count the number of lives these drugs have destroyed rather then saved in the past forty years.’ This antibiotic can destroy lives, according to many patients. The adverse drug reactions (ADRS) associated with the Fluoroquinolones include: tendon and muscle pain, insomnia, burning pain, digestion disorders, anxiety, heart problems (including heart failure), vision disorders, ringing in the ears, rashes, blood sugar problems, depersonalization, toxic psychosis, mental disorders, seizures, pain, liver failure, kidney failure, irreversible peripheral neuropathy and other adverse reactions. The Fluoroquinolone drugs are anything BUT a safe and effective antibiotic and are clearly not worth the risk. The problems caused by the drug do NOT always resolve once the drug is stopped; the drug can cause permanent and irreversible additional health problems (both physical and mental).
For more information please see the Fluoroquinolone Toxicity Research Foundation website or The Flox Report by Teo Boomer. The Fluoroquinolone Toxicity Research Foundation says ‘This article consists of the descriptions of the adverse toxic effects caused by the quinolone and fluoroquinolone class of antibiotics, suffered by previously healthy patients. Many of these injuries are irreversible and permanent in nature. In addition, this article contains data obtained from many individual "first person" reports, as well as information that comes from reputable mainstream medical sources which are readily available to the public.’ See also The White Paper by David T. Fuller. The Fluoroquinolone Toxicity Research Foundation says, ‘More than fifty percent of the fluoroquinolones have been removed from clinical practice, or their use severely restricted, due to such inherent toxicity. This White Paper details the case against the manufacturers of the drugs found within this class who have put profit and greed ahead of patient safety. The serious nature of these adverse reactions are well known by the various manufacturers who have gone to great lengths to both minimize and trivialize these reactions.’
I am including this information after being contacted by a (lovely) M.E. patient named Kate who has tragically had her life utterly destroyed by this drug. Despite finding typing very difficult, Kate was determined to try and get the word out to fellow patients so that nobody else would have to suffer the same terrible fate. For more information on these drugs, and Kate’s story see HFMEs Fluoroquinolone page.
Stimulants of any kind are not a useful or safe treatment for M.E. They may give an immediate benefit of increased activity in the very short term, but longer term this is counter productive as the disability of M.E. is in part protective and transgressing your activity boundaries in this way can only lead to unnecessary extended relapses and disease progression. There have also been deaths in M.E. related to overexertion.
Even where DHEA deficiency can be documented, administration of DHEA can cause severe relapse in M.E. DHEA can cause panic attacks, insulin resistance and other serious problems and should not be taken without levels being monitored regularly with a conjugated DHEA test, says Dr Sherry Rogers.
Echinacea is often recommended to boost the immune system in healthy people but in M.E. parts of the immune system are already dysfunctional and upregulated and so this will only worsen this problem and so should be avoided by people with M.E. (some of the symptoms of M.E. are caused by this upregulation). Echinacea is not appropriate for long term use and may also reverse the effects of certain steroids.
Cats claw or Samento should be avoided by those with autoimmune diseases (including M.S.)
Ginseng can stimulate adrenal glands and increase production of interferon (which can increase symptoms in M.E. sufferers) and is also a stimulant. DMAE can also make seizure problems worse in M.E.
Be wary of ‘homoeopathic’ products (such as Bioglan brand homoeopathic melatonin sold in Australia) as they do not actually contain any active ingredients! Bioglan melatonin doesn’t contain ANY melatonin. So if you think you have tried melatonin and Bioglan ‘melatonin’ didn’t work for you, then actually you haven’t tried it at all.
Some patients report huge benefit from Neurontin, while others have a very negative effect from the drug. (So this is one that should be taken with caution to begin with.)
Ablation surgery is not a good idea, explains Dr Sherry Rogers. She says that in one in ten patients it causes shortness of breath or heart failure by destroying the nerve that controls the diaphragm. It also doubles the rate of stroke and increases the risk of a heart attack. Stents are also not a good idea as they are blood clot magnets. For more information on why ablation and stents are so dangerous and unhelpful see her book ‘Is your cardiologist killing you?’ and her ‘Total Wellness’ newsletters.
Lyrica should be avoided as it causes seizures and promotes a high incidence of cancers as a side-effect, explains Dr Sherry Rogers.
Tyrosine is the precursor to adrenaline and taking it can make you feel manic. This supplement should only be taken under medical supervision and where a deficiency has been shown on testing.
Coumadin or warfarin is a very dangerous drug that should be avoided. Dr Sherry Rogers explained in her January 2011 newsletter that, ‘The evidence is screamingly clear that [Coumadin] rips calcium out of bone and dumps it in herat vessels and valves. Coumadin accelerates coronary artery disease, osteoporosis, cancer, arthritis, high blood pressure, aging and other maladies.’
For information on how to safely get off this drug with nutrients, see the book ‘Is your cardiologist killing you?’ or this article. The right nutrients don’t poison over 16 pathways in the body, can keep you clot-free even better and safer plus with exponential benefits and no side effects. If you do take Coumadin make sure to take some K2 daily, as Coumadin poisons this nutrient and it is needed to prevent cancer.
The first time you have an injection of magnesium – or vitamin B12 – this should always be done in your doctor’s surgery in case you have an adverse reaction (magnesium can adversely affect cardiac function and some people react badly to the preservatives in B12 injections). Also note that vitamin B12 supplementation (oral or injectable) should also always be combined with a B vitamin complex supplement so that you don’t have an imbalance of the B vitamins.
Some doctors are prescribing Mestinon, (a myasthenia gravis drug) for M.E. Mestinon is pyridostigmine bromide, a drug which can further disrupt or damage the acetylcholine system in the brain (a system known to be severely dysfunctional in M.E.). This drug is not appropriate or safe for M.E. sufferers (and is even thought to be one of the possible causes of Gulf War Illness; an illness with some similarities to M.E.)
Vitamin C does not cause kidney stones, this is a myth that is still unfortunately being unhelpfully passed around as fact. Evidence actually suggests that vitamin C at a high dose can reduce your chances of kidney stones and that what does cause kidney stones is; inadequate water intake, low vitamin D and B6 status, low potassium and magnesium intake and the use of antacids. Vitamin A may also help to inhibit kidney stone formation.
Treatment for panic attacks will never be useful if in fact the ‘panic attacks’ are misdiagnosed neurally mediated hypotension (NMH) and/or postural orthostatic tachycardia (POTS) – a fast heart-rate or problems with blood pressure on standing. Both of these are always a big part of M.E. but some doctors are not aware of this and so may misdiagnose these problems as being due to ‘panic attacks.’ Of course you may actually feel panic or even terror when you experience severe NMH or POTS, but this is as a reaction to the terrifying and excruciating symptoms and pathology, not as a cause of them.
Suspect you have NMH or POTS and not panic attacks when you: have never had an attack when lying down and when you have most of your attacks and all your most severe attacks when sitting or standing still. Also be suspicious if these attacks improve if you fidget or move about, learn significantly forward or backward constantly when sitting, or crouch down or lie down and when you feel perfectly calm, relaxed and happy and not at all anxious before they happen.
“Modern medicine is not scientific, it is full of prejudice, illogic and susceptible to advertising. Doctors are not taught to reason, they are programmed to believe in whatever their medical schools teach them and the leading doctors tell them. Over the past 20 years the drug companies, with their enormous wealth, have taken medicine over and now control its research, what is taught and the information released to the public.” Abram Hoffer MD
“Modern drug based medicine is as incomplete as a novel written with three vowels. As discordant as a symphony constructed using only some of the notes. High dose nutritional therapy is the much needed missing part of our vocabulary of healthcare. The fight against disease needs all the help it can get.” Andrew Saul PhD in ‘Fire your doctor: How to be independently healthy’ 2005
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.