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.
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.
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.
Medications
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)
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)
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)
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.
Results: Cetirizine is the only antihistamine I've found which doesn't make me feel sedated, which is a bit strange since many people find it sedative. I use 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.
Dextromethorphan (DXM)
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)
Usage: 1/6 to 1/2 of a 25 mg tablet (4.15-12.5 mg) a day
Supposed to help: fatigue, muscle weakness, brainfog, mood, libido, autoimmunity
Science: DHEA is a steroid hormone mostly produced by the adrenal gland, 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. Perhaps men can do well with such large doses, but even I who most likely have a testosterone deficiency have got some androgenic effects on a dose of about 5 mg. If I was taking 25 mg a day I'd probably have a moustache already.
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)
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.
Etilefrine (Effortil)
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.
Guaifenesin (Humibid, Mucinex, Tintus)
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.
Hydrocortisone (Cortef)
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 ~6 mg at 8 AM, ~2.5 mg at 3-4 PM, ~2.5 mg at bedtime and ~1.5 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.
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)
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, 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.
Loratadine (Clarityn, Claritin)
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.
Low dose naltrexone
Usage: 4.5 mg at bedtime
Supposed to help: brainfog, sleep, muscle endurance, fatigue, immune system, allergies, IBS, 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: Obviously LDN can't be taken with narcotic painkillers (including tramadol). 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.
Recommendation: Definitely. It doesn't help everyone, but it helps many people with CFS/ME, it's cheap, safe and low in side effects.
Melatonin
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)
Usage: 23.75 mg in extended release form (succinate), as needed
Supposed to help: tachycardia, arrhythmias, anxiety, migraine prevention, orthostatic hypotension, bladder problems
Science: Metaprolol 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.
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.
Recommendation: It might be worth a try if you suffer from heart problems or orthostatic hypotension, but for heart problems try Q10 and magnesium first.
Mobilat (a proprietary topical pain relief cream/gel)
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.
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
Usage: 1,000 mg a day
Supposed to help: congestion, fatigue, brainfog, headaches, muscle endurance, immune system, liver, antiviral
Science: Acetylcysteine is used for treating many different things, such as coughing, congestion, alcohol and drug addiction and paracetamol overdoses. In CFS/ME the most obvious benefit is 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. No side effects.
Watch out for: NAC has few side effects, but some people may experience nausea or upset stomach. However it should always be taken on an empty stomach. The pills and liquid can taste yucky, rather like sweat.
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)
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.
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.
Paracetamol (acetaminophen)
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.
Recommendation: See if it helps you.
Pentoxifylline (Trental, Pentoxin)
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.
Recommendation: Yes.
Piracetam (Nootropil)
Usage: 2 x 1200 mg a day, first "an attack dose" of 4 x 1200 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.
Prednisone (Prednison, Deltasone)
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.
Ranitidine (Zantac, Ranimex)
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.
Tamsulosin (Flomax, Omnic)
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 uses it for this indication as well as treating fatigue and tiredness in chronic fatigue patients, possibly through improved sleep.
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 saysthis 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).
Tetryzoline eyedrops (Visine)
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 think it was making me a bit more alert, but now I'm starting to believe it was just a 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
Usage: one 25 mcg tablet 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 been near the upper limit of normal. I don't have any hypo symptoms but fatigue and hair loss, which is very common in CFS/ME. 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.
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)
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 now if I take it during the day I feel like a zombie for a few hours. Also it seems 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.
