Medications I've tried for CFS/ME
Since you're here, you might be interested in my CFS/ME/fibromyalgia treatment book.
Note: because this list was growing extremely large, I have decided to separate it into two pages. This list only has medications I have tried while the other page has other treatments I have tried - herbs, vitamins, minerals, amino acids and other supplements as well as diets. Note that I have mostly followed Finnish classification, hence things like melatonin and DHEA are listed as medications, even though they are considered nutritional supplements in many countries. I have had to leave out a few experimental medications because they're in pre clinical trial stages.
After I got sick with CFS/ME in 2000 I have tried many different herbs, nutritional supplements and medications in search of relief. This search has not been arbitrary or based on advertisements and anecdotes. I have tried things that have been shown to be helpful for CFS/ME, similar conditions or similar symptoms. Some of these things haven't had that much evidence to back them up, but they are safe and have been very cheap to acquire so I have tried them anyway. On the other hand, there are many things I would have tried, if I only could afford them or acquire them.
My situation has changed over the years in that, thanks mainly to LDN and some other medications, CFS/ME doesn't bother me much any more, but the panhypopituitarism I got as a complication causes me severe lethargy and poor functionality, even though I'm in an almost normal physical shape. Some or most of it boils down to recalcitrant hypoglycemia, that no supplement, hormone or dietary modification seems to eradicate. So often it's not clear which illness I'm trying to treat, CFS/ME or hypopituitarism.
Peculiarly every single supplement (and most meds) that has ever improved my fatigue or functionality - and there have been quite a few - has always stopped working, sometimes after years, nowadays usually after one month or so. They never start working again even if I wait years before next trying them. Rotating doesn't help, as even things I've taken very irregularly have stopped working. (Things that improve other symptoms, like sleep or stomach problems, luckily don't normally have this issue.) I haven't been able to figure out why. The placebo effect doesn't seem like a likely explanation, since the likelihood of something helping me has never had any correlation to my expectations about it. Prednisone is one thing that helped me the most to the point of allowing me to live in remission for a while, which is why its effects on me have been described in greater detail at the bottom of the page. However, that wasn't a long-lasting respite, but luckily low dose naltrexone has also helped me a great deal. My experience with LDN is detailed in the now mostly inactive blog I dedicated to the subject.
As a disclaimer, I'd like to remind you that this page exists only for informational purposes. It cannot be used to treat or diagnose any medical condition and it is not intended to substitute or replace professional medical care or advice. I assume no responsibility for any of the information presented here. Always discuss treatment options with your doctor and tell your doctor about every medication, supplement and herbal product you're taking.
If you have any questions, I'd be happy to answer your email. Also, please read my main CFS/ME page before asking questions.
- Remember that people are different and the effects of herbs, supplements and medications vary from person to person.
- Always start out with a small dose, in case of allergy, intolerance or sensitivity.
- Don't take anything until you have researched its safety, contraindications, side effects and interreactions with other drugs. There is no excuse not to look it up. Be particularly careful if you suffer from other serious illnesses (e.g. with your heart, liver or kidneys) if you're taking medications with plenty of possible drug interactions, such as beta blockers, epilepsy medications or MAOI drugs. Most products are not recommended for use during pregnancy or breastfeeding.
- Check whether the supplement or medication has to be taken on an empty stomach or with food. Also check if you should take it in the morning, at night, or several times a day.
This list is arranged in an alphabetical order.In the Usage field I have listed the dose I have used, which is often the recommended dose. However, doses vary on individual basis so the dose that works for me may be too large or too small for your needs. The Supposed to help field lists conditions and symptoms the supplement is believed to help with, but it does not mean it actually works for them. The field Science lists some the factual information and research, which is not conclusive and mostly pertains to symptoms that have to do with CFS/ME.
My results are listed in the Results field. If there's something you need to be careful about (such as side effects or contraindications), they're listed in Watch out for. Remember that there can always be idiosyncratic side effects, allergic reactions or drug compatibility issues that are not listed here. Finally, the field Recommendation lists my personal opinion about the treatment and whether it's worthwhile to try for CFS/ME. Even if it says I recommend the treatment it doesn't mean it will work for you, but it's something I believe one should try if it's not contraindicated for you (and conversely, even if I don't recommend it it doesn't mean it's bad or that it won't work for you).
Baclofen (Lioresal) (2008-present)
Usage: 3.3-20 mg at bedtime
Supposed to help: aches, cramps, muscle weakness, temperature instability, neuropathic pain, vision disturbances, sleep, fatigue, stomach problems, bladder problems, muscle endurance, GERD, anxiety
Science: Baclofen is a muscle relaxant that acts through the GABAB receptor. It is the only drug that acts via this receptor (the benzodiazepines and many other sedatives affect the GABAA receptor). It is used to treat spasticity in multiple sclerosis and it can also help symptoms of CFS/ME. It increases production of growth hormone.
Results: I only took 1/3 tablet the first night, but I still experienced some stomach pain and constant urination that night, and fatigue, tiredness, lethargy and some blurred vision, possibly even depression the next day. I was somewhat concerned, as usually medications don't cause me any side effects. But the urinary frequency was already gone the next night, and the other symptoms soon abated too. In a week I was able to bring up the dose to 1 tablet and later 2 tablets, with hardly any problems. I sleep deeper and it's easier to sleep even if there's pain or other distractions, the trigger points in my scalp are better and most importantly, my horrible night-time temperature instability (which lost me a lot of sleep over night sweats and freezing, which sometimes alternated rapidly) is much better.
Watch out for: Baclofen can also lower blood pressure and cause dizziness and nausea. Muscle weakness may worsen. The treatment shouldn't be discontinued abruptly.
Recommendation: If you need a muscle relaxant, baclofen is a good choice. It is also one of the few medications (besides corticosteroids and some anticonvulsants) that can help temperature instability.
Celecoxib (Celebrex, Celebra) (occasionally 2007-present)
Usage: 100-400 mg as needed
Supposed to help: pain, fever, fatigue, brainfog
Science: Celecoxib is a NSAID that belongs to a class of COX-2 inhibitors (coxibs), which are less likely to cause stomach upset or ulcers than older painkillers which also inhibit COX-1, an enzyme that protects the stomach. COX-2 inhibition may have other benefits besides just alleviating pain and has been used to treat illnesses like schizophrenia and even cancer. One study showed that people with CFS/ME produce more COX-2 than healthy people. Celecoxib is also a mild inhibitor of carbonic anhydrase. Some people with CFS/ME report that celecoxib relieves their fatigue or brainfog while other painkillers don't have this effect.
Results: I used to be able to take ibuprofen just fine before I went on prednisone, but after that my stomach couldn't tolerate it any more, so my doctor prescribed me celecoxib for headaches and other occasional pains. It works well and does seem to help the overall symptoms of CFS/ME (fatigue and brainfog mainly) somewhat.
Watch out for: While celecoxib reduces the ulcer risk compared to older NSAIDs, the risk is still there, as are the other risks of NSAIDs such as kidney problems. One person I know who has CFS/ME reported that celecoxib caused more stomach irritation than ibuprofen (which is unusual), but it helped her other symptoms.
Recommendation: If you need painkillers anyway, celecoxib is probably one of the best choices, alone or in combination with something stronger if needed.
Cetirizine (Zyrtec) (2007)
Usage: 10 mg as needed
Supposed to help: allergies, hives, rashes, congestion, cold treatment
Science: Cetirizine is an OTC antihistamine and used primarily for allergic symptoms, even though it can also relieve cold symptoms. It is the only antihistamine that also has anti-inflammatory action. My doctors believes antihistamines can be useful for some people with CFS/ME, especially for feelings of rage which may be caused by excess histamine.
Results: Cetirizine is the only antihistamine I've found which doesn't make me feel sedated, though some people find it sedative. I've used it for hives, acute congestion and when I get a large number of itchy mosquito bites.
Watch out for: Cetirizine has a low side effect profile, but it can cause sedation.
Recommendation: Yes, if you have symptoms that can be helped with antihistamines.
Usage: up to 1/2 tablet a day
Supposed to help: fatigue, cognition, pain, sleep, anxiety, muscle stiffness, hyperacusis
Science: Clonazepam has more powerful anticonvulsant and muscle relaxant activity than most other benzodiazepines. In low doses it is a fairly common treatment for CFS/ME and fibromyalgia. It can paradoxically reduce fatigue by reducing the overactivation of the brain.
Results: Didn't notice anything, perhaps more tiredness.
Watch out for: Benzodiazepines can cause tolerance and addiction, though this is usually not a problem with low clonazepam doses. Some doctors, however, believe people with CFS/ME should not use any benzodiazepines.
Desmopressin (Minrin) (2011-present)
Usage: 1/2-1 0.1 mg tablet as needed, usually twice a day
Supposed to help: dehydration, urinary frequency, hypokalemia, adrenal insufficiency, orthostatic hypotension, stomach problems
Science: Desmopressin is a synthetic form of antidiuretic hormone (ADH or vasopressin), which helps retain water in the body. Damage to the pituitary may cause a deficiency of this hormone, a condition called diabetes insipidus (not related to diabetes mellitus though both cause excessive urination and usually thirst). There is often a deficiency of ADH in CFS/ME. In one study desmopressin improved HPA axis function in CFS/ME. Because it can increase blood volume it is sometimes used to treat low blood pressure. Anecdotally some people have reported improved digestion.
Results: I get strange episodes when I just pee out everything and have to go to the bathroom often 5-6 times an hour, peeing just clear liquid as is typical of diabetes insipidus, quickly leading to dehydration which because of my adrenal insufficiency is dangerous. At their worst an episode has lasted for 3-4 days. Sometimes during such an episode when I try to drink water, my body actually reacts to it (even in small quantities) as if it was poison - stomach cramps, nausea and feverish chills. These episodes used to be rare (a few times a year) and appear mostly at random or triggered by flying or excessive drinking of liquid at once, but these days they can appear several times a week and are usually triggered by acute stress. I also very easily get dehydrated if I don't drink any water even for just 1-2 hours (even if I try to drink more later in compensation). Antidiuretic hormone helps abort an episode, though takes a while to work (I should probably have a nose spray instead of the pills). However, it does not help my adrenal insufficiency, and it does not really help my nocturia - it greatly reduces urine output at night, but even if it is like 1/3 of normal, I still wake up at night to go to the toilet (probably out of habit), but it's a good thing as I need to take hydrocortisone at night, anyway. In 2012 the diabetes insipidus worsened and now I have to take desmopressin all the time, usually 1/2 tablet twice a day, but sometimes once a day is enough and sometimes I need a full tablet.
Watch out for: Can cause headaches, edema and stomach upset. One is supposed to limit intake of fluids while on desmopressin, as otherwise there may even be brain edema. (However, I've noticed that if I take it when I'm not dehydrated, water actually feels "yucky" and I can't imagine drinking it, something I never experience otherwise, but if I get dehydrated before it starts acting, I still feel very thirsty and can safely drink quite a lot as long as I feel thirsty.)
Recommendation: If you have trouble retaining water.
Dextromethorphan (DXM) (2009)
Usage: 30 mg three times a day
Supposed to help: fatigue, pain, brainfog, depression, IBS, neurological symptoms, sleep, sleep apnea
Science: Dextromethorphan is an NMDA antagonist. This group of drugs can be very helpful for CFS/ME and fibromyalgia, but dextromethorphan also has several additional properties. It can particularly help pain, boost opioids and reduce the development of tolerance to them.
Results: Didn't notice anything, except possibly little extra tiredness.
Watch out for: Dextromethorphan should never be combined with most antidepressants and some other drugs.
Recommendation: Yes, if there are no contraindications.
DHEA (dihydroepiandrosterone) (2008, 2009-present)
Usage: 4.15-30 mg a day
Supposed to help: fatigue, muscle weakness, brainfog, mood, libido, autoimmunity
Science: DHEA is a steroid hormone mostly produced by the adrenal glands, but also by the brain. It serves as a precursor to the sex hormones while also having some anti-inflammatory action. It is a popular "antiaging" drug/supplement. In CFS/ME most studies have found low levels of DHEA, though one actually found elevated levels. DHEA is used in the treatment of several autoimmune diseases. Testosterone is known to contribute to ATP production, so it can have a direct effect on fatigue and fatigability.
Results: When I first tried DHEA my adrenal insufficiency wasn't yet very bad and I didn't notice any beneficial effects. However when my adrenal insufficiency significantly worsened and I had some bothersome symptoms that hydrocortisone supplementation did not relieve, I decided to try it again. Now I noticed a clear effect, especially in reducing a phenomenon I call "brain crashing in the early afternoon". Muscle weakness may also be somewhat better and my libido is improved. Dose adjustments have usually lead to temporary skin breakouts.
Watch out for: Excessive doses can cause e.g. acne, hirsutism (hair growth in unwanted places), palpitations, nightmares and menstrual problems. DHEA is not recommended for those with a history of PTSD, psychosis or bipolar disorder. Many people are prescribed way too large doses, 25, 50 or even 100 mg. 30 mg is a fine dose for me now, but a few years ago I couldn't have taken anywhere near that much.
Recommendation: Yes, if you have low DHEA levels, adrenal insufficiency or strongly suspect testosterone deficiency, but start out with a very low dose.
DMAE (dimethylaminoethanol or deanol) (2009)
Usage: ~300 mg in the mornings
Supposed to help: cognitive problems, fatigue, tiredness, depression, anxiety, Raynaud's phenomenon
Science: DMEA is a precursor to acetylcholine, which is very important for cognitive function. As such it is considered a nootropic and may work synergistically with the cholinergic nootropics (e.g. piracetam and acetyl-L-carnitine). People have reported increased mood, motivation, short term memory, learning and verbal skills. Some people notice an improvement right away, others recommend taking it for at least four weeks before gauging the results. There is very little information about the use of DMAE in CFS/ME.
Results: I tried it for a little over a month and did not notice anything, except a possible worsening in my trigger points (could have been caused by excess acetylcholine?) and possibly some restlessness/akathisia on two days.
Watch out for: High doses can cause anxiety, headache, restlessness, elevated blood pressure and muscle tension in neck, shoulders and jaws. Taking DMAE too late in the day can lead to insomnia. DMAE is not recommended for people with a history of epilepsy.
Recommendation: Probably no, unless you're really into nootropics. Estradiol (2014-present)
Usage: 1/2-1 pump of transdermal gel a day
Supposed to help: fatigue, cognition, depression, libido, sleep, skin, mucus membranes, hair
Science: Estradiol is the most important type of estrogen in the human body (there is no hormone named "estrogen").
Results: At first the 1 pump dose caused horrible breakthrough bleeding - I had three heavy periods in three weeks. My ferritin even went noticeably down. When I kept a break from the pill, estradiol and progesterone I had severe fatigue and bad headaches. I didn't notice any other psychological, cognitive or other effects. Slightly better skin and mucus membranes. The 1/2 pump dose didn't cause any of these side effects, but how much use it is is a different story. I've been told my severe hair loss is supposedly from estrogen deficiency.
Watch out for: Estrogen can cause e.g. migraines, nausea, dizziness, edema and increased appetite. It may worsen some autoimmune diseases. It has various risks in long-term use (e.g. breast cancer and thrombosis), which cannot be discussed here in detail, but transdermal estradiol is different from oral estrogens and especially from Premarin. The risks depend on e.g. the dose, the woman's age and concurrent progestagen use (also which type of progestagen is used).
Recommendation: Impossible to say yes/no. With severe deficiency it can often have clear benefits.
Etilefrine (Effortil) (2007, 2010)
Usage: 1-3 tablets a day
Supposed to help: circulation, orthostatic hypotension, fatigue, heat tolerance, dyspnea, urinary frequency, congestion
Science: Etilefrine is a beta/alpha sympathomimetic. It acts as a vasopressor (constricting blood vessels). As a result it raises blood pressure and improves circulation, but can also make the heart beat faster.
Results: I did not notice much benefit in my overall condition when I first tried this medication in 2007. At least my brainfog and fatigue did not get any better even when I took three tablets in six hours. Only orthostatic hypotension seemed to improve and it usually isn't a major problem for me. I did not notice improvement in my urinary frequency or nasal congestion. I did get supine tachycardia (rapid heartbeat when lying down) during the first hours after taking the medication. I also seemed to get more nightmares (which is a possible side effect) even though I did not take the med late in the evening. However, when I tried etilefrine again in the summer of 2010, I noticed it makes me tolerate heat better, reduce dyspnea and may occasionally give me an energy boost.
Watch out for: My severely ill friend got a strange reaction from taking just half a tablet. She had anxiety and major pupil dilation. However, later when her body got used to it, she was able to raise the dose to to six tablets a day (which is the recommended maximum dose) which offered her minor benefit.
Recommendation: Etilefrine is somewhat similar to midodrine, which is often used to treat CFS/ME, even in severe cases. Etilefrine isn't available in many countries, but it is available in some places where midodrine isn't, so I guess it could be worth a try, especially if orthostatic hypotension is a major problem for you.
Fludrocortisone (Florinef) (2011, 2012-present)
Usage: 1/4-1/2 tablet (0.025-0.05 mg)
Supposed to help: dehydration, orthostatic hypotension, adrenal insufficiency, fatigue, cognition
Science: Fludrocortisone is a synthetic version of aldosterone, the main mineralocorticoid in the body. It helps retain liquid in the circulation and thus raises blood pressure. It is used in adrenal insufficiency and orthostatic hypotension. I was prescribed it because of dangerous dehydration episodes, even though I believe antidiuretic hormone would have been more appropriate.
Results: When I first tried Florinef, 1/4 tablet didn't seem to do do anything. 1/2 tablet caused an unpleasant swollen feeling in my legs. From experience I know that leg edema causes me shin splints and other problems, so I had to stop taking it. However, in 2012 when my diabetes insipidus massively worsened, I noticed that taking 1/4 tablet fludrocortisone in addition to desmopressin seemed to be better than desmopressin alone.
Watch out for: Besides edema, fludrocortisone can elevate the blood pressure too much and cause hypokalemia (low potassium levels). Stomach upset, diarrhea, headache and depression are also possible.
Recommendation: If you have orthostatic hypotension/low blood pressure.
Guaifenesin (Humibid, Mucinex, Tintus) (2006)
Usage: 15-20 ml of mixture (20 mg/ml), taken up to three times a day
Supposed to help: congestion, muscle tension, fatigue, pain
Science: Guaifenesin is a mucolytic with have muscle relaxant effects. Some doctors use large doses of guaifenesin in pill form to treat CFS/ME and fibromyalgia, but there is no real scientific evidence to back it up. However, guaifenesin has some interesting pharmacologic properties that could be helpful nonetheless.
Results: The mucolytic effects are evident, but I haven't really noticed any muscle relaxation or other symptom relief.
Watch out for: Guaifenesin has barely any side effects, but the mixtures may have laxative effects.
Recommendation: If you can get guaifenesin in pill form, I might recommend trying it. It might be helpful even if the actual guaifenesin therapy isn't all that it's made out to be. Growth hormone/somatropin (Omnitrope) (2014-present)
Usage: up to 0.4 mg injected s.c. at bedtime
Supposed to help: fatigue, tiredness, muscle weakness, muscle loss, sleep, pain, cognition, immune system, hypoglycemia, liver, weight loss, osteoporosis, cardiovascular prevention
Science: Growth hormone is traditionally thought to beneficially affect mostly muscles, fat and bones, but growth hormone deficiency also creates major cardiovascular risk. In studies with adult GH deficient patients many have reported benefit in tiredness and cognition before physical effects. Growth hormone is also used in CFS/ME patients without major GH deficiency.
Results: I have GH deficiency stemming from panhypopituitarism caused by CFS/ME. At first somatropib was quite helpful and helped my hypoglycemia, but the efficacy has reduced over time, as it tends to go for me. Sleep remains improved, I was able to discontinue my previous sleep supplement (sophora). I have lost several kilos of fat and gained several kilos of muscle. I don't think my muscle weakness has been reduced much, though.
Watch out for: Edema is the main side effect, sometime even leading to carpal tunnel syndrome. I had mild paresthetic feelings in the beginning.
Recommendation: Somatropin is highly expensive, so most people cannot afford it and it's very hard to get a prescription anyway. Other than that it is worth considering.
Hydrocortisone (Cortef) (2005, 2007, 2008-2014)
Usage: 3-25 mg a day
Supposed to help: fatigue, fever, muscle weakness, muscle tension and pain, joint pain, brainfog, orthostatic hypotension, dyspnea, hypoglycemia, sensory hypersensitivity, allergies, mood, anxiety, sleep, nausea, stomach problems
Science: Hydrocortisone is the synthetic form of cortisol, a corticosteroid hormone produced by the adrenal glands that has many different functions in the body. Many people with CFS/ME have adrenal insufficiency (low cortisol). In large doses hydrocortisone suppresses the immune system, which is helpful in the treatment of allergies and some illnesses.
Results: I used to benefit from hydrocortisone even when I did not have (noticeable) adrenal insufficiency, but since it got worse I now need to take hydrocortisone every day. My routine regime is 7 mg at 8 AM, 2 mg at 3-4 PM, 2 mg at bedtime and 2 mg at 4-6 AM, but I very often have to take an extra dose. If I don't take the dose at night I will wake up very early and cannot fall asleep again. In 2014 I was switched to methylprednisolone + fludracortisone, which works out better as once a day is enough and the mineralocorticoid dose is slightly lower, resulting in less edema.
Watch out for: Taken in too large doses hydrocortisone has caused me muscle pains and sometimes slight hypomania. Excessive use can also cause adrenal suppression (reduce the body's own production of cortisol).
Recommendation: It helps many people with CFS/ME and low doses are quite safe, so you could try it.
Ibuprofen (Advil, Motril, Ibumax) (occasionally 2000-2006)
Usage: 200-800 mg when needed
Supposed to help: pains, aches, fever, orthostatic hypotension
Science: Ibuprofen is a non-steroidal anti-inflammatory drug (NSAID). It causes the least stomach irritation of all NSAIDs. It also raises the blood pressure and can thus help with orthostatic hypotension and other problems caused by low blood pressure.
Results: Ibuprofen helps me with my migraines (usually 400 mg is enough), but usually does nothing to my other headaches and muscle pains, except for the muscle pain caused by prednisone. I can't take it any more ever since I started taking prednisone in 2006 (even after I quit taking it), because it now irritates my stomach way too much.
Watch out for: Ibuprofen builds up tolerance quickly, so it may become ineffective if you take it constantly. It should be taken with food to avoid stomach irritation.
Recommendation: Yes, if you suffer from headaches or muscle/joint pains and ibuprofen seems to help. Celecoxib might be better, though. Diclofenac has some other beneficial properties.
Inosine pranobex/isoprinosine (Imunovir, Viruxan) (2011-2012)
Usage: 0.5-6 tablets a day from Monday to Friday, occasionally breaks
Supposed to help: fatigue, immune system, fever, antiviral, sleep
Science: Inosine pranobex or isoprinosine is an antiviral drug which works by being an immunostimulant, so it is thought to work against most or all viruses.
Results: The first weeks I was more tired and had some extra fever and feverishness. However, when the dose was increased to 3x2 tablets a day, instead of fever and chills my temperature went a bit lower than usual and I felt very hot, especially at night. These symptoms have got a lot milder, but they come and go: none some weeks, other weeks I have some. Interestingly the drug has also made me sleep a lot better from the very first pill, an effect which seems to be dose-dependent, though for some reason has also started to vary slightly. I stopped getting very bad days after about a month on the drug and at one point it seemed like there was other, quite major improvement too, but it stopped working after six months or so.
Watch out for: Flu-like symptoms in the beginning are more like the norm, though they vary: I had fever, chills and tiredness (and feeling hot in larger doses), while someone I know got headaches and sore throat. Other than that isoprinosine tends to be very well tolerated. Severe side effects are almost unheard of. (I've heard some complaints of blood pressure changes and kidney problems though.)
Recommendation: Yes, definitely. It's by far the cheapest and best tolerated immunomodulator/antiviral after LDN (especially if you buy it from a country where it's cheap - mine comes from Italy where it's 22 euros per 40 tablets, less than half of what it costs in many countries). It is not available in the U.S. or many European countries, but can be ordered abroad with a prescription or through your doctor.
Loratadine (Clarityn, Claritin) (2006)
Usage: 10 mg as needed
Supposed to help: allergies, hives, rashes, congestion, cold treatment
Science: Loratadine is an OTC antihistamine and used primarily for allergic symptoms, even though it can also relieve cold symptoms.
Results: Loratadine does help the histamine symptoms, but it also makes me feel like a zombie for up to 15 hours, even though it's supposed to be non-sedative. Works as a fairly effective sleeping aid for me, though the effects are a bit too long-lasting to be convenient.
Watch out for: Loratadine can be very sedative for some people.
Recommendation: Yes, if you have symptoms that can be helped with antihistamines.
Liothyronine (Cytomel, T3 thyroid hormone) (2012-present)
Usage: up to 2 x 25 mcg a day (currently 1 + 1) in addition to thyroxine/T4)
Supposed to help: fatigue, brainfog, menstrual problems, depression, edema, cold intolerance, weight loss
Science: T3 is the active form of thyroid hormone. Most doctors use thyroxine for hypothyroidism, but some people may not be able to convert T4 to T3 properly. T3 often works better for certain symptoms, e.g. the excess weight caused by hypothyroidism.
Results: When I started the T3 I felt horrible for some two weeks. Dose increases have also made me feel bad for two weeks. It has helped my hypoglycemia, muscle fatigue and edema (suddenly I could fit in some trousers that had been too tight before), even though the edema was already significantly improved by horse chestnut. Strangely that effect on edema was by far the strongest after the second dose increase, not when I first started T3. My resting heartrate has also gone down noticeably, from over 90 (which I had had for over 10 years) to low 70s... I believe the other effects I got/would hsve got from T4 alone, but not the edema going down and probably not the lower heartrate.
Watch out for: If you take too much T3, you can experience bad tachycardia and palpitations (though the opposite, as was my experience, is probably more common than most doctors realize).
Recommendation: Yes, if you have hypothyroidism or are suspected to have hypothyroidism. But start out very low.
Low dose naltrexone (2007-present)
Usage: 4.5 mg at bedtime
Supposed to help: brainfog, sleep, muscle endurance, fatigue, immune system, allergies, IBS, restless legs, sensory oversensitivity, migraine prevention, depression, gynecological problems
Science: LDN is an opiate antagonist which is used to help in opiate withdrawal. It is used for e.g. alcohol withdrawal in the dose 50 mg a day. In the LDN treatment a very small (1.75-6 mg, usually 4.5 mg) dose is taken at bedtime, which blocks the opioid receptors for a short while and is thought to stimulate the production of beta-endorphins, which have immunomodulatory effects. It is an immunostimulant and can help shift the immune system from excessive Th2 response towards Th1. It is primarily used to treat autoimmune diseases (especially MS), which are now being thought as caused by immunodeficiency, not by overactivity of the immune system, and it works great for that purpose. LDN can also help people with e.g. CFS/ME, fibromyalgia, most neurological disorders, cancer and HIV/AIDS.
Results: It has helped me a great deal, especially with fatigue (both physical fatigue and cognitive fatigability) and muscle endurance. It's not a stimulant so it doesn't help with tiredness or sleepiness. My seborrhea is a bit better and my chronic urticaria is 95% gone. My cognitive problems have improved a bit, but not as much as I was hoping for. My exercise-induced asthma is barely noticeable now. I got mild side effects (e.g. tremor, hunger pangs and waking up too early) for two nights in the beginning and some bloating and gas during the night for a few weeks. The quantity and quality of my sleep are pretty much unchanged, perhaps slightly better.
Watch out for: It used to be thought LDN cannot be combined with narcotic painkillers (opioids), but it seems it can be, at least with some of them. Social drinking is supposed to be alright. I'd assume it may also interact with other non-narcotic medications that affect the opioid receptors, such as clonidine. I also assume that medications that slow down the absorption of medications (e.g. omeprazole) could hinder the efficacy, but I could be wrong on both counts. It's said to be important that calcium carbonate is not used as the filler. Some people who have had severe mold exposure may react adversely to LDN.
Recommendation: Definitely. It doesn't help everyone, but it helps many people with CFS/ME, it's cheap, safe and low in side effects.
Usage: 1.5 mg 30-60 minutes before bedtime
Supposed to help: sleep, IBS, migraine/headache prevention, immune system, depression, cancer prevention, hair loss
Science: Melatonin is a hormone secreted by the pineal gland as a controller of circadian rhythm (the absence of light triggers this production). It induces sleep and has a variety of functions in the body, it is also a very strong antioxidant. Besides sleep, many studies have shown melatonin supplementation can help e.g. IBS and migraines. It is even used as a cancer treatment because of its immunomodulatory effects. Many CFS/ME experts recommend melatonin and some even say that some of their patients don't apparently secrete any of the hormone. The normal dose is 3 mg but some studies have shown that even as little as 0.3 mg can be as effective as a sleep aid (though then you'll lose out on the antioxidant effect and perhaps other properties as well).
Results: After 18 years of insomnia it was pleasant to note that melatonin indeed knocks me off quickly and reliably (I would have tried it ages ago, but in Finland it's a prescription medication, so it took me years to get it). Unfortunately it made me wake up and stay up at night even more than before, even though I tried different doses and taking multiple doses. Slow-release version would probably have helped, but it's not available here. Luckily inositol solved this problem. My IBS doesn't seem to be better, but I feel like I'm somewhat less prone to headaches and migraines.
Watch out for: Some people experience daytime sedation, but I believe most of those cases are because of "overdosing" (e.g. the person takes 3 mg while 1 mg would have been the optimal dose for them). For many melatonin has an antidepressive effect, but in some it can cause depression, sometimes even severe and then the treatment has to be discontinued (or the dose lowered). Melatonin may also worsen orthostatic hypotension, but I don't know anyone who has actually experienced this.
Recommendation: Definitely. Unlike most sleep aids, it can actually be good for the body, and the risks are very small. It is also inexpensive, even here despite being a Rx drug. Experiment with different doses!
Metoprolol (Lopressor) (occasionally 2006-2013)
Usage: 23.75/25 mg, as needed
Supposed to help: tachycardia, arrhythmias, anxiety, migraine prevention, orthostatic hypotension, bladder problems
Science: Metoprolol is a beta blocker. Beta blockers block the action of epinephrine (adrenaline) and norepinephrine (noradrenaline) in many parts of the body. They lower the heart rate and blood pressure, yet they can actually help with orthostatic hypotension. Unlike the most common beta blocker propranolol, metoprolol is cardio selective.
Results: Metoprolol clearly helps with the feelings of arrhythmia, though it doesn't seem to do much for tachycardia. It's just not so noticeable any more, it's as if the heartbeat is more quiet. My dose is very small, the tablets go up to 190 mg. Now that Q10 has got rid of my heart problems I no longer need the beta blockers, though they have been useful for some persistent headaches and migraines. I had to stop taking metoprolol for this occasional indication when it started to severely worsen my hypoglycemia (to the point I considered calling an ambulance.
Watch out for: Beta blockers can cause many kinds of side effects from fatigue to insomnia. They should not be combined with alcohol or stimulants (including caffeine) and combining them with sedative substances may increase the sedation. The treatment should not be abruptly discontinued. People with asthma shouldn't use non-selective beta blockers. Many people with CFS/ME report adverse effects from beta blockers, though quite a few report benefits, as well.
Recommendation: It might be worth a try if you suffer from heart problems or POTS/dysautonomia/orthostatic hypotension, but for heart problems try Q10 and magnesium first.
Mobilat (a proprietary topical pain relief cream/gel) (occasionally 2005-present)
Usage: gel spread on the skin as needed
Supposed to help: muscle and joint aches
Science: Mobilat contains salisylic acid (an NSAID similar to aspirin), corticosteroids (for reducing inflammation) and mucopolysaccharidepolysulphate (a blood thinner). It relieves localized pain without the gastrointestinal and other adverse effects of oral NSAID use.
Results: I've used Mobilat for some localized muscle aches (especially my shoulders, but also legs and arms) and joint pains caused by the prednisone withdrawal. It has provided substantial relief fairly quickly. It doesn't help other myofascial trigger points except for those on the face, I guess they are more superficial
Watch out for: Mobilat shouldn't be used on broken or irritated skin. The gel may dry skin further if it's already dry. If you're allergic to salisylates (Aspirin) you can get an allergic reaction from Mobilat.
Recommendation: Well worth a try for localized aches. If Mobilat isn't available in your country you can probably find a similar product. The mucopolysaccharide is mostly for injuries and is probably not so important in other uses.
N-acetylcysteine (2005, 2007, 2014)
Usage: up to 1,000 mg a day
Supposed to help: congestion, fatigue, brainfog, headaches, muscle endurance, immune system, liver, antiviral, depression
Science: Acetylcysteine is used for treating many different things, such as coughing, congestion, alcohol and drug addiction and paracetamol overdoses, lately also depression, autism, autoimmune diseases and bipolar disorder. In CFS/ME the most obvious benefit is likely that NAC metabolizes to glutathione, an important antioxidant and detoxifier that most CFS/ME patients are probably deficient in.
Results: Helps slightly with muscle endurance. I haven't noticed anything else. Earlier I didn't get any side effects, but now if I take it every day I experience stomach irritation.
Watch out for: NAC has few side effects, but some people may experience nausea or upset stomach. The pills and liquid can taste yucky, rather like sweat. Some people recommend that NAC always be taken with vitamin C to reduce the risk of kidney stones.
Recommendation: The scientific evidence is so massive that I'm definitely recommending NAC, but if you don't notice anything beneficial, then it's probably of no use to keep taking it.
Nimodipine (Nimotop) (2008 - effects still noticeable)
Usage: 15 mg (half a tablet) a day
Supposed to help: brainfog, fatigue, muscle endurance, migraine prevention, pain, orthostatic hypotension, adrenal insufficiency, anxiety, depression, bipolar disorder
Science: Nimodipine is a calcium channel blocker. This class of drugs causes e.g. vasodilation. Nimodipine however is fairly selective for cerebral blood vessels, so it is less likely to cause hypotension or dizziness. It also has other beneficial properties besides the improved circulation (and Jay Goldstein, who believes nimodipine to be one of the most effective CFS/ME medications, actually says that it constricts blood vessels in those whom it works, according to neuroimaging). It is normally used after stroke in doses of 12 tablets a day, but much smaller doses are used in CFS/ME.
Results: It has markedly improved my brainfog. As a writer I can definitely notice that I can not only read better, but write better (both more, and better quality text), even though it does not seem to increase word recall and such as piracetam does. Mental fatigue and general well-being also seems to be improved. I have not noticed any difference in other symptoms. I did get a headache when I tried a whole pill (30 mg), but it could have been from sleep deprivation too. At first the med seemed to make my adrenaline rushes stronger, but I don't know how to explain it (it was not about heart pounding). My orthostatic hypotension (generally intermittent and usually mild) seems to have improved too. Interestingly after taking nimodipine for six months, I noticed I could stop taking it and still retain the greatly improved cognition - an observation quite helpful for my wallet. (Almost seven years after discontinuing it I still retain at least most of the benefits!)
Watch out for: May cause headache, dizziness, tachycardia, orthostatic hypotension or nasal congestion. Some sources recommend that severely ill patients start with an extremely low dose, as little as 1/16 of a tablet.
Recommendation: Definitely, if you can afford it.
Usage: 500 mg as needed
Supposed to help: aches, pain, fever
Science: Paracetamol is an analgesic drug which also has antipyretic properties. Contrary to popular belief it is usually not considered to be an anti-inflammatory drug.
Results: No effect at all, never got any relief from paracetamol even before I got sick.
Watch out for: Paracetamol is marketed as very safe, but it's in fact rather hepatotoxic. Never take more than 2 paracetamol pills at once, never combine with alcohol. Acetylcysteine is supposed to negate the harmful effects and is used as an antidote in paracetamol overdoses. Recent studies have found that paracetamol can reduce both positive and negative emotions.
Recommendation: See if it helps you.
Pentoxifylline (Trental, Pentoxin) (2007)
Usage: one 400 mg depot tablet a day
Supposed to help: circulation, immune system, brainfog, fatigue, muscle endurance, pain, fever, flu-like symptoms, weight loss, antiviral
Science: Pentoxifylline is used to improve circulation in e.g. intermittent claudication. It improves the viscosity of the blood by increasing the deformability of red blood cells (which appears to be defective in CFS/ME) and by reducing coagulation. Improved circulation can help many different symptoms, especially cognitive problems and muscle problems. Pentoxifylline also reduces the secretion of several inflammatory cytokines like TNF-alpha. It can help many different kinds of pain.
Results: I've only noticed a slight benefit, probably because I am already taking several things that work in a similar fashion or help the same symptoms pentoxifylline is supposed to help (LDN, piracetam and B12 at least). I am quite sure it would otherwise have helped a lot more. I did get very slight nausea during the first two days of use, but no other side effects. However, pentoxifylline seemed to be quite helpful in reducing the flu-like symptoms (especially lymphadenopathy) that seemed to be a "die-off" reaction caused by undenatured whey protein.
Watch out for: Pentoxifylline should not be used by people with a stomach ulcer, bleeding problems or who are allergic to methylxanthines (like caffeine). It can increase the risk of bleeding when combined with anticoagulants and may potentiate the effects of hypotensive medications. It can cause stomach pain and upset, headache, nausea, itching and facial flushing.
Piracetam (Nootropil) (2007-present)
Usage: 2 x 1,200 mg a day, first "an attack dose" of 4 x 1,200 mg a day for two days
Supposed to help: brainfog, tiredness, fatigue, mood, immune system, circulation, neurological symptoms, vertigo
Science: Piracetam is a nootropic, that is it helps cognitive function and reduces cognitive fatigability both in healthy people and in those with cognitive impairment. In a way it stimulates the brain, but it is not a stimulant. It also helps circulation without being a vasodilator or a vasoconstrictor. It may be one of the best drugs to treat CFS/ME, because it is frequently helpful, produces hardly any side effects and doesn't interact with other medications.
Results: I feel less tired and more alert, I can think more clearly and concentrate better and my brain doesn't get fatigued so easily. My memory is somewhat improved. The improved circulation is also noticeable, e.g. if I elevate my hands. In general I feel more normal. For the first few days I felt slightly lethargic and irritable, but it went away after that. At first my chronic urticaria (which had been helped a lot by the LDN) flared somewhat due to the increased membrane permeability, but it too soon started to subside.
Watch out for: Piracetam can sometimes cause a restless, "wired" feeling and insomnia. Those effects will probably disappear if the dose is decreased. Some people need two or three tablets to notice anything, others get great benefit with just half a pill, so it's important not to "overdose". However usually the usage is started with an "attack dose", that is for a few days you take a large dose and after that you start taking a smaller maintenance dose.
Recommendation: Definitely. It's very safe and often helpful. Many people notice distinct effects after just one dose, but others may need to use it for a few weeks before it begins to work effectively.
Pramipexole (Sifrol) (2016)
Usage: 0.26 mg depot tablet at bedtime
Supposed to help: sleep, restless legs, pain, fatigue, libido, cognition
Science: Pramipexole is a dopamine agonist used in the treatment of Parkinson's disease and sometimes restless legs. It is quite often prescribed for fibromyalgia and sometimes CFS/ME.
Results: Had mild nausea on some mornings. Every night when I got up to go to the bathroom, the light visible from our apartment flickered like it was an old fluorescent tube. (Apparently a known side effect). When I quit taking it, I felt an urge for shopping and like time was passing much more quickly for a few days - common side effects that are supposed to appear during taking the medication, not after stopping it... After I stopped pramipexole after about three weeks, I started feeling like maybe it did help my scalp seborrhea a bit, after all.
Watch out for: Pramipexole can also cause e.g. headache, stomach problems, dizziness, insomnia, sleepiness, falling asleep (even without feeling sleepy) and behavioural disorders (e.g. hypersexuality and gambling.)
Prednisone (Prednison, Deltasone) (2006)
Usage: first 20 mg a day for a week, then 15 mg a day week, 10 mg a day after that
Supposed to help: fatigue, fever, muscle weakness, brainfog, orthostatic hypotension, allergies
Science: Prednisone is a synthetic steroid with a medium duration of action. It acts as a glucocorticoid with only a little mineralocorticoid action. It suppresses the immune system and decreases inflammation, which is helpful in the treatment of allergies and some illnesses.
Results: Prednisone greatly helped my CFS/ME for a few months. My fatigue, brainfog, muscle weakness, lymph node soreness and hair loss got almost fully better, I did not really crash at all and my chronic fever, urticaria and seborrhea were gone, and overall my skin got better (I had some acne on my back which seemed to get permanently a lot better). My IBS, tachycardia, chronic congestion, headaches/migraines, urinary frequency and sleep problems did not improve. I only got one viral infection during the treatment and I think one bacterial one, which is less than I usually get. The side effects I had were mild, some joint aches in the beginning. I gained a few kilos of weight and my face got rounder. That went away soon after the discontinuation, but I still have a paunch despite being thin. However the taper was a nightmare - it lasted for eight months and caused e.g. lethargy, dyspnea, severe hunger pangs that were impossible to eradicate by eating, loss of appetite, stomach cramps, nausea, hair loss, fever, muscle cramps, joint aches and morning headaches (for a "normal" person a taper lasting a few months should have been enough and not nearly as horrible). On the good side, my chronic fever and the accompanying cold intolerance seemed have improved permanently.
Watch out for: Prednisone can cause many kinds of nasty side effects, including muscle aches, hair loss, weight gain, edema, osteoporosis, diabetes, necrosis of the joints, cataracts, insomnia, mania and psychosis. It also suppresses the immune system, making one more vulnerable to infections. However the doses used to treat CFS/ME are usually small and the risk of developing serious side effects should be fairly low.
Recommendation: It may be worth considering if your CFS/ME is severe or you have chronic fever and your illness isn't due to a chronic bacterial infection, but try LDN first if at all possible.
Progesterone (Utrogestan) (2014-2015)
Usage: 1-2 capsules a day
Supposed to help: PMS, menstrual problems, endometriosis, fertility, blood sugar, neuroprotection, sleep, anxiety, acne, edema, weight loss
Science: Progesterone is one of progestagens. It is the hormone our own body produces and it also affects GABA receptors and other targets in the brain, while synthetic progestagens, like those in various contraceptive pills, don't. It can be taken orally micronized in oil capsules, vaginally, rectally and as creams. There are some animal studies in MS, as progesterone is neuroprotective and has mild immunosuppressive action.
Results: I didn't expect much at all, I thought this is something I just take because I'm taking estrogen, as well. The first nights I felt very feverish and odd and felt tired upon waking. After that I was surprised to experience major symptom relief. Less muscle weakness and especially better ability to walk, breathing felt easier. I slept better and had better mood and felt more sociable, even though I am normally in good mood and feel social. Even my hypoglycemia was better. It also felt like sweet things tasted sweeter so I preferred slightly less sweet things. Sadly, just like about everything else, progesterone pooped out. After the first two cycles I only noticed effect the first 1-2 days and later the effect disappeared altogether. In 2015 I was switched to synthetic dydrogesterone (because I couldn't increase my estradiol dose without side effects while on progesterone), which is supposedly the only synthetic progestagen that reduces the risk of breast cancer instead of increasing it. Haven't noticed much from dydrogesterone.
Watch out for: Progesterone (including progestagens) "relaxes" tissues, which is why it can make Ehlers-Danlos syndrome worse. Everyone with CFS/ME is thought to have at least mild EDS type collagen abnormality. As such it's hard to say how safe progesterone really is in CFS/ME. Of course, all kinds of hormones can cause various side effects, like irregular menstruation and mood changes.
Recommendation: See above. Then again, the improvement I experienced was major. For me nothing lasts, but for someone else it could well last.
Oxytocin (Syntocinon) (2014-present)
Usage: 1-2 pumps a day (nasal spray)
Supposed to help: fatigue, mood, anxiety, cognition, fibromyalgia pain, libido, wound healing
Science: Oxytocin is often called the "love hormone" as it is secreted after sex and childbirth, but it is much more than that. In studies it has been found to even promote distrust in some cases. It improves learning and wound healing. Some doctors use it to treat fibromyalgia, though my doctor believes for fibromyalgia you need IM injections or sublingual pills (both of which are expenive; the nasal spray is very cheap).
Results: Surprisingly oxytocin made me much better for a while, including hypoglycemia. It was quite similar to the effect of progesterone. I haven't noticed much mental effect, surprisingly, the physical one was much more pronounced. Slightly improved libido and slightly better ability to relate other people. It seems like I'm more sensitive to the "habitus" of people (e.g. I like good service more and dislike bad service more) and this also seems to affect my fiction writing (positively).
Watch out for: Oxytocin can cause headaches and fluid retention. Apparently it can be energizing for women, but many men find it makes them sleepy. Applying the spray feel a bit icky, a burning feeling in the nostril for a short while.
Recommendation: Probably, at least the nasal spray is cheap and the effects are notieable very quickly, but it is not available in many countries.
Ranitidine (Zantac, Ranimex) (2008, 2015)
Usage: one 150 mg tablet twice a day
Supposed to help: fatigue, brainfog, mood, pain, immune system, Epstein-Barr virus, stomach problems
Science: Ranitidine is an antagonist of the H2 histamine receptor. It decreases the secretion of stomach acid and is often used for heartburn. Jay Goldstein, MD, first started to use ranitidine as a treatment for mononucleosis in the early 1980s and subsequently he tried it for CFS/ME, which at the time was thought to be caused by EBV (the mono virus). He's not completely sure how they work, but according to him they help many patients. H2 blockers also have some cholinergic action (they inhibit an enzyme that breaks down acetylcholine) and act as NMDA receptor blockers.
Results: I think I might have been a bit better (brainfog in particular), but since many things work for me I've decided not to use anything that "may work a little" unless it's something that's extremely cheap and/or very beneficial in the long run (or otherwise I would be taking 50 pills a day). It also seemed to cause me migraines.
Watch out for: Side effects may include headache, drowsiness, insomnia, nausea, diarrhea or constipation, but usually no side effects are experienced. According to Goldstein ranitidine can make some CFS/ME patients "hyper". It may interact with triazolam.
Recommendation: It's very cheap to try out, rather safe and the effects should be noticeable in a few days, so if it's OTC in your country I don't see any reason not, to unless it's contraindicated in your case.
Rotigotine (Neupro) (2016)
Usage: 1/4 of a 2 mg patch at bedtime
Supposed to help: sleep, restless legs, pain, fatigue, libido, cognition
Science: Rotigotine is a dopamine agonist used in the treatment of Parkinson's disease and sometimes restless legs. It is only sold in the form of a patch. My Finnish doctor has prescribed it for many patients with good results.
Results: Rotigotine binds to alpha receptors way too much for me. With just 1/4 patch t caused stuffy nose, urinary frequency to the point of dehydrating me and I know from experience continuous use of such medications usually leads to a bad migraine.
Watch out for: Rotigotine can also cause e.g. nausea, headache, stomach problems, dizziness, insomnia, sleepiness, falling asleep (even without feeling sleepy) and behavioural disorders (e.g. hypersexuality and gambling.)
Recommendation: It's a good medication, but because of the patch format quite expensive. Other dopamine agonists are noticeably cheaper.
Tamsulosin (Flomax, Omnic) (2007)
Usage: one 0.4 mg depot capsule every other day
Supposed to help: urinary frequency, sleep, circulation, fatigue, tiredness, Raynaud's phenomenon
Science: Tamsulosin is a selective alpha blocker. That means it blocks the effects of adrenaline on certain receptors, which leads to lessened resistence in the peripheral circulation (and thus usually vasodilation). It is indicated to treat urinary problems stemming from prostate hypertrophy in men. It is also sometimes used for urinary problems in women (off-label). My doctor used it for this indication as well as treating fatigue and tiredness in chronic fatigue patients, possibly through improved sleep. Most people got bad side effects from it, so he has discontinued this use years ago.
Results: My urinary frequency didn't improve at all and nor did my sleep. I got a runny nose (common for alpha blockers) and seemed to get some attacks of tachycardia that worsened my fatigue (quite common too). So no positive effects at all. I finally quit it when I got a massive migraine headache which I suspect was caused by it. After quitting the drug (whose half-life is several days) I had increased urinary frequency for a few weeks - similar to my experience on tizanidine, which also acts by an alpha-adrenergic mechanism.
Watch out for: Besides runny nose and tachycardia, orthostatic hypotension and tiredness are common side effects. My doctor says this is a great drug for chronic fatigue patients, but I guess it's not fit for most CFS/ME patients.
Recommendation: Probably no, unless you have Raynaud's or increased urinary frequency (and be warned that it may get worse if you quit the drug).
Testosterone + finasteride (Flomax, Omnic) (2015-present)
Usage: first depot injections, then 0.15 ml Androgel
Supposed to help: fatigue, muscle weakness, muscle wasting, cognition, mood, libido
Science: Testosterone is an important hormone not just for men, but also women. Testosterone is involved e.g. in the production of ATP. Deficiency can also cause depression and sometimes symptoms of testosterone deficiency alone can be reminiscent of CFS/ME. Women generally use much lower doses than men - my Androgel dose is just ~1/100 of what men use, and taking any more causes pimple, even with 2 tablets of finasteride. (I should tolerate 0.2 ml with 1 tablet of finasteride, but for some reason I don't.)
Results: I used testosterone depot injections at first, but the second shot caused a severe allergic reaction where my whole leg swelled up, so I had to switch to gel. After using testosterone for two months it suddenly kicked in (before that I had only had increased libido) and I felt much more energetic and sharper for a month. My doctor had explained that it makes you mentally very quick and clever and that's true. Sadly the effects pooped out after a month, like everything else. When I've had too much testosterone I get a headache and pimples. I did lose 3 kg of weight in the 6 months after starting testosterone, which probably is related.
Watch out for: Some women do take testosterone without finasteride, but it's
Tetryzoline eyedrops (Visine) (2008)
Usage: 1-2 drops in both eyes 2-3 times a day.
Supposed to help: fatigue, brainfog, headache, anxiety, pain, multiple chemical sensitivities
Science: Naphazoline eyedrops are a part of Jay Goldstein's CFS/ME treatment regime. They're sympathomimetic (as in, stimulant) and he believes they directly stimulate the trigeminal nerve and thus greatly help some patients. The effects should be noticeable in a matter of minutes. Instead of naphazoline you can use just about any sympathomimetic eyedrops (as in those that are meant for reducing irritation of the eyes but don't contain any antihistamines or such ingredients).
Results: At first I thought it was making me a bit more alert, but it was probably just random or the placebo effect. I hate applying eyedrops but I like the way the drops make my eyes feel, they're very soothing.
Watch out for: In some people tetryzoline may irritate the eyes and in this case the usage should probably be discontinued. Sometimes sympatomimetic eyedrops may cause mydriasis (excessive dilation of the pupil), especially when overused. This may temporary affect the vision unless the effects of the drops wear off. The bottle should be discarded after four weeks even if there's still something left in it. Do not drink the eyedrops.
Recommendation: It's very cheap (I paid a little over five euros for the bottle) and the effects should be apparent very quickly, so there's no reason not to try it.
Thyroxin (2007, 2010-present)
Usage: 25-150 mcg a day
Supposed to help: fatigue, brainfog, menstrual problems, depression, edema, cold intolerance, weight loss
Science: Thyroxin (T4) is one of the two primary thyroid hormones. It is prohormone to T3, which is the main active thyropid hormone, but some tissues can make use of T4 as well.
Results: For many years now I've had a high-ish TSH, even though my T3 and T4 have always been near the upper limit of normal. I didn't have any hypo symptoms but fatigue and hair loss, which is very common in CFS/ME. In 2007 my doctors wanted me to try a low dose of thyroxin. I tried it for some six weeks, but I only got side effects - polyuria/nocturia (even worse than usual), sweating (especially night sweats) and nausea - all common hyper symptoms - as well as some cognitive problems and lethargy that I believe were caused by the thyroxin as well. It also seemed to negatively affect my sleep. However, in 2010 I tried it again and this time got no adverse effects. However, I also haven't got much benefit - maybe a slight improvement of constipation and skin dryness. No improvement in edema or trigger points. I am currently taking 75 mcg and will increase to 100 mcg soon. I may also add T3 in the near future.
Watch out for: Besides the adverse effects I experienced it can cause heart palpitations and restlessness.
Recommendation: Yes, if there's reason to suspect you have hypothyroidism on top of your CFS/ME. Armour thyroid, T3 or a combination of T3/T4 may be more helpful.
Tizanidine (Zanaflex, Sirdalud) (2006)
Usage: 2 mg as needed
Supposed to help: muscle pain and tension, headaches, sleep, neuropathic pain
Science: Tizanidine is a centrally acting skeletal muscle relaxant acting through the alpha receptors. It may also help neuropathic pain in larger doses.
Results: Tizanidine usually helps me with muscle tension and some types of muscle aches, though sometimes there's no effect. At first it caused no side effects in me, but later if I took it during the day I felt like a zombie for a few hours. Also it seemed to exacerbate my urinary problems for several weeks after one pill now, which is why I'm not taking it any more.
Watch out for: Can sometimes exacerbate fatigue. Be careful if you're combining it with anything that has sedative or CNS depressant effects and never combine it with alcohol. Dry mouth is common.
Recommendation: It might be worth a try for muscle pain and tension, neuropathic pain and for chronic headaches. Baclofen is still probably a better alternative for most people with CFS/ME.
Vitamin B12 injections (2012)
Usage: 3 mg cyanocobalamin injected IM three times a week
Supposed to help: immune system, fatigue, brainfog, tiredness, neuropathic pain, circulation, mood
Science: Many doctors use vitamin B12 injections, because they are thought to work better than oral B12. B12 is an effective free radical scavenger and has other modes of action, so it is not about treating a deficiency. One 3 mg injection corresponds to B12 requirement of about three years! Many doctors use methylcobalamin or hydroxycobalamin. My doctor has tried all of the three and believes cyanocobalamin isn't any worse and methylcobalamin is more prone to causing side effects.
Results: Oral B12 tablets used to pick me up years ago (I was not deficient in B12), until the effect completely disappeared. I was hoping to get extra energy, but instead something peculiar happened: my sleep got deeper and I felt like I needed more sleep. As a result I initially felt quite lethargic and drowsy during the day. This is very rare, but apparently happens to some people with CFS/ME. The drowsiness wore off, but I still didn't get any benefit. B12 (at least the methyl form) is known to affect the circadian rhythm, but it should make one need less sleep, not more...
Watch out for: Can color your urine bright red, which can be alarming if you aren't aware of this. With injections there is always a small risk of infection or other complications.
Recommendation: Definitely. Many people benefit greatly from them.