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Treatments for ME/CFS

The following list of potential ME/CFS treatments is divided into two sections. The top part describes treatments requiring a prescription while the lower section lists over-the-counter formulations that are readily available. I have written about the majority of the following treatments elsewhere on my blog, often in more detail. Clicking on the name of the treatment will open up a new window with this information. The below, alphabetically ordered two lists, detail a brief rationale as to why each treatment may be beneficial to ME/CFS patients. I also examine the safety profile and common dosages used for each treatment. As always, consult with your physician before commencing any treatment.

 

Prescription Treatments for ME/CFS

 
Azithromycin Azithromycin is an antibiotic that has antiviral and immunomodulatory properties. It may be effective against a broad range of bacteria, many of which have been linked to ME/CFS. A study found that 58 out of 99 ME/CFS patients had a decrease in symptoms while taking Azithromycin. Dr. De Meirleir and Dr. Nicholson are both advocates of this antibiotic and have used it on ME/CFS patients with some success.
 
Azithromycin is generally fairly low in side effects although sometimes causing stomach upset. It is normally taken 3 times a day (away from food) at a dosage of 500mg on each occasion.
 
 
Dr. Brewer’s Protocol– This protocol involves patients taking either a nasal version of Amphotericin B or a compounded Nystatin that has to be atomised. Patients should also take a chelating PX. A pilot study by Dr. Brewer found that 56 out of 151 ME/CFS patients could not tolerate the Amphotericin B. 88 out of the remaining 94 patients (93.6%) had a reduction in symptoms. Approximately a third of these 88 CFS patients reached remission. Since this pilot study, Dr. Brewer has used a compounded and atomised Nystatin due to it being safer than the nasal Amphotericin B. The theory behind Dr. Brewer’s Protocol involves treating the sinus reservoirs of mycotoxins that may be causing ME/CFS symptoms.
 
Since replacing Amphotericin B with Nystatin, Dr. Brewer’s Protocol has become safer for patients, with followers of the protocol rarely reporting nasal side effects. Patients experiencing die-off symptoms range from 30-40% according to Dr. Brewer. The appropriate dosages of the compounded and atomised Nystatin and the chelating PX are provided by the compounding pharmacy.
 
 
Clonazepam– This treatment is one of the most polarising ME/CFS treatments in existence. Clonazepam may benefit patients due to reducing the overstimulation of the brain and central nervous system. It also has potential effects as a sleep aid, neuroprotector and energy enhancer. Several ME/CFS specialists are advocates of Clonazepam under the right circumstances, such as Dr. Cheney. There are also many online reports of patients benefiting from Clonazepam.
 
The dark-side of Clonazepam involves countless ME/CFS patients’ online anecdotes stating that this drug has been the worst treatment they have ever tried as it has caused long term side effects. A dosage around the 0.5mg- 1mg range is normally used on ME/CFS patients for sleep which is a lower amount than for other conditions. An even tinier dose is recommended by Dr. Cheney if the drug is used during the day with the motive of increasing the patient’s energy. Clonazepam shouldn’t be stopped suddenly and patients should gradually reduce the dose before ceasing treatment. The common side effects of Clonazepam include drowsiness and confusion. Some ME/CFS patients have reported other side effects such as a general worsening of their condition. As Clonazepam usage can be habit forming, patients often feel like they need to increase the dose to maintain efficacy which can be a dangerous process.
 
 
Dexedrine– Dexedrine may benefit ME/CFS patients due to alleviating cognitive impairment, reducing fatigue and increasing energy. A small study found 9 out of 10 ME/CFS patients had reduced fatigue after taking Dexedrine in comparison to 4 out of 10 patients in the placebo group. Dr. Teitelbaum is a supporter of this treatment, believing that it increases energy and blood pressure. Dr. Goldstein has written that 1/3rd of ME/CFS patients will improve as a result of taking stimulants and he has recommended amphetamine salts.
 
One of the risks of Dexedrine is that prolonged usage may lead to addiction. Dr. Goldstein has warned that if specific neurotransmitters are low in an ME/CFS patient, stimulants may increase ME/CFS symptoms. Dr. Rowe has recommended that ME/CFS patients begin with a 5mg dosage in the morning and if no improvement is noted, the dosage be increased to 10-15mg. Some patients may find that 5mg is too high for them to tolerate.
 
 
DHEA– DHEA is a hormone produced by the adrenal glands. A study found that the majority of the Japanese ME/CFS subjects had DHEA deficiency. Several studies have found the use of oral DHEA and intravenous vitamin C to be useful in treating ME/CFS.  Another study found normal DHEA levels in ME/CFS patients but low blood levels of a hormone that causes the adrenal glands to release DHEA.
 
Dr. Cheney has found that DHEA is more effective in less severe cases of ME/CFS and that sometime symptoms may worsen if severely ill patients take this treatment. Dr. Myhill recommends Pregnenolone as an alternative to DHEA. Some doctors have experienced success in prescribing lower doses of DHEA such as doses less than 10mg. Another ME/CFS specialist recommends 50mg every second day. Palpitations, hair loss, acne and an upset stomach are some possible side effects.
 
 
Fludrocortisone– Fludrocortisone is a synthetically produced hormone. It may benefit ME/CFS patients with; hypotension, POTS, orthostatic intolerance or adrenal insufficiency. Its mechanism of action in ME/CFS patients could be due to; increasing blood volume, raising blood pressure and helping blood reach the bodies extremities. Three studies have been performed on ME/CFS patients taking Fludrocortisone with the ME/CFS patients’ level of improvement no better than the placebo group. According to Dr. Bell, Fludrocortisone is more likely to work on younger patients who are still somewhat active. Dr. Bell tries this treatment on almost all of his patients and says that it works well in approximately 25% of cases. If the drug doesn’t increase the ME/CFS patients’ activity levels by at least 50%, he stops the drug. Dr. Cheney believes that liquorice can have the same effect on patients as Fludrocortisone.
 
Many ME/CFS specialist recommend that Fludrocortisone dosages start at a very low amount such as a quarter of a 0.1mg tablet. Dr Rowe begins patients on a quarter of a tablet and if no side effects are noted, gradually increased this amount every 4-7 days to maximum of 2 tablets (0.2mg). Potassium and plenty of water should be used concurrently with this treatment. High blood pressure and depression are two possible side effects.
 
 
Gabapentin (Neurontin)– Gabapentin is a anticonvulsant drug that may benefit ME/CFS patients due to reducing pain, increasing energy and improving sleep. Its mechanism of action may be its ability as a calcium channel blocker to reduce the excretion of certain neurotransmitters that cause pain and stimulate the brain. Anecdotally, a number of ME/CFS patients have gained extra energy as a result of taking Gabapentin however in some of these cases the extra energy has worn off. Dr. Goldstein lists Gabapentin amongst his five most favoured treatments for ME/CFS. Dr. Teitelbaum uses Gabapentin for its sleep effects and Dr. Enlander uses it for stopping the ‘abnormal impulses’ in ME/CFS patients’ brains. Three studies have found Gabapentin to be beneficial to Fibromyalgia patients in the areas of sleep enhancement and pain reduction.
 
Gabapentin is considered to be fairly safe with a Cochrane review finding that serious adverse effects were no more common in the Gabapentin group than the placebo group. Dizziness, somnolence, peripheral oedema and gait disturbance are the most common side effects. Dosages should begin at low levels and only be increased if tolerated. ME/CFS specialists tend to start patients at 100mg-800mg and if no side effects occur, the dose is gradually increased up to 2400mg-5000mg. These doses are the total daily dosages and should be split up into three dosages across the day.
 
 
Heparin– Heparin is an anti-coagulant drug that may benefit ME/CFS patients who have hypercoagulation. A Heparin-ME/CFS study found all 9 patients gaining improvement with 5 noting significant improvement. Another paper refers to 60 ME/CFS/Fibromyalgia patients taking Heparin with an average improvement of 85%. Dr. Teitelbaum writes that Heparin helps about 50% of ME/CFS patients who haven’t benefited from any other treatment. It is imperative that ME/CFS patients have coagulation testing performed to determine Heparin suitability before commencing treatment.
 
Depending on what type of Heparin is used and what delivery method is chosen, the possible side effects of Heparin vary. If unfractionated Heparin is injected subcutaneously, regular blood tests to monitor treatment are a necessity. Heparin-induced thrombocytopenia is a potential side effect with this treatment although with Low Molecular Weight Heparin this is less likely to occur. A DEXA bone density test and liver and kidney function tests may be required before starting Heparin treatment. Sublingual Heparin and Low Molecular Weight Heparin are considered safer than unfractionated Heparin. Dr. Teitelbaum recommends those patients taking unfractionated Heparin start with 5000 unit injections twice a day and if blood tests are normal, the dose be gradually increased to a maximum of 8000 units twice a day.
 
 
Isoprinosine (Immunovir)– Isoprinosine may benefit ME/CFS patients due to its effects as an antiviral as well as its various immunomodulatory properties. A study found that 6 out of 10 ME/CFS patients benefited by taking Isoprinosine. In those patients who improved, their CD4+, T-cells and natural killer cells dramatically increased. Dr. Sharp believes Isoprinosine is one of the most helpful, safest and cost effective drugs for ME/CFS patients.
 
Isoprinosone may increase uric acid levels and therefore shouldn’t be used by those with gout. ME/CFS specialists generally pulse the dosage of Isoprinosine so patients don’t develop a tolerance to the drug.
 
 
Low Dose Naltrexone (LDN)– When used at low doses, Naltrexone causes the body to create more opioids which in turn may; relax the microglial cells, block pain, create endorphins and modulate the immune system. A small, pilot study on Fibromyalgia patients found that subjects experienced on average a 30% decrease in pain and fatigue while taking LDN. A second placebo controlled study on Fibromyalgia patients resulted in 32% of those taking LDN experiencing a significant reduction in pain as well as either a significant reduction in sleep problems or significant reduction in fatigue. Dr. Bihari reports that approximately 50% of ME/CFS patients are helped by LDN. Stories litter the internet of ME/CFS patients benefiting from this treatment.
 
LDN is considered one of the safest treatments for ME/CFS with few patients experiencing side effects. The most common side effect is sleep disturbance. The dosage used is normally in the 1.5mg-4.5mg range. LDN is generally taken at night before falling asleep.
 
 
Magnesium Injections– A study found low red blood cell magnesium levels in ME/CFS patients. After intramuscular magnesium sulphate injections, 12 out of the 15 ME/CFS patients improved compared to 3 out 17 patients receiving the placebo improving. A study determined that despite normal magnesium blood levels, Fibromyalgia patients had low intracellular levels of magnesium. Dr. Myhill has found approximately 70% of her ME/CFS patients improving after receiving magnesium injections.
 
Magnesium injections can cause temporary pain at the injection sight. High doses may cause diarrhea. Intramuscular injections are generally given once or twice a week.
 
 
Melatonin– Melatonin is a hormone whose primary role as an ME/CFS treatment is to aid sleep. One study found that it improved ME/CFS patients’ ability to function and that it enhanced patients’ quality of life. Another study concluded that it reduced patients’ fatigue levels. Dr. Wright states that over 60% of his ME/CFS patients produce undetectable levels of Melatonin. As well as improving quality of sleep, this treatment may be beneficial due to its anti-inflammatory and antioxidant effects.
 
The most common side effects of Melatonin are morning drowsiness and headaches. These side effects may dissipate if the dose is decreased. Melatonin is listed in this section under the ‘prescription treatments’ umbrella due to a prescription being required to gain it in Australia despite formulations with negligible amounts of Melatonin being available over the counter. Other countries may have differing laws regarding prescription requirements to gain Melatonin. Some doctors use doses as low as 0.5mg while most doctors recommend doses in the 3-9mg range. It is normally taken at night, before sleep.
 
 
Myers’ Cocktail– The Myers’ Cocktail is an intravenously administered mixture of supplements including; magnesium, calcium, vitamin C, B vitamins and sometimes further ingredients. A study on Fibromyalgia patients receiving this treatment found that most of the subjects noted improvements however the placebo group that received a saline solution also improved. Intravenous saline solution is considered by some to be an effective treatment for ME/CFS/Fibromyalgia hence it is conceivable that both groups did improve. The authors noted that both groups experienced “strong symptomatic relief.” Dr. Teitelbaum is an advocate of Myers’ Cocktails and believes they can provide ME/CFS patients with more energy. Dr. Majid Ali had found that 15 grams of intravenous vitamin C (an ingredient in Myers’ cocktails) can fix the abnormal shapes of ME/CFS patients’ blood cells and hence improve blood flow.
 
Some patients feel sleepy immediately after a Myers’ cocktail for a short period of time. If the patient feels excessive warmth, dizziness, nausea or a headache during the Myers’ cocktail IV, they should notify the physician. The dosages of the individual ingredients within a Myers’ cocktail vary and are at the physician’s discretion.
 
 
Nexavir (Kutapressin)– Nexavir is a porcine liver extract that is administered via subcutaneous or intramuscular injection. Studies have found that Nexavir can inhibit EBV in vitro and HHV-6 replication in vitro by greater than 90%. A study of 270 ME/CFS subjects found that a staggering 96% of patients receiving more than 40 Kutapressin injections reached remission or near remission status. 71% of patients receiving 11-40 injections obtained remission or near remission levels. If an ME/CFS patient had high EBV-EA-IgG titres, they were more likely to improve in this study. A final Kutapressin study contained 130 ME/CFS patients with 85% noting significant improvements. 43% of patients reached remission while a further 42% of patients gained near remission status (they had a few residual symptoms). Dr. De Meirleir had found 67% of his ME/CFS patients responding to Nexavir in comparison to 17% receiving the placebo improving. Dr. Cheney, Dr. Enlander, Dr. Teitelbaum and Dr. Lapp have all been advocates of Nexavir or an analogous version of Nexavir.
 
Out of the 400 patients across both Kutapressin- ME/CFS studies, only 1 person experienced new symptoms and a deterioration of function following Kutapressin injections. Some physicians are reluctant to prescribe antivirals including Valtrex or Famvir due to side effects and therefore prescribe Nexavir as a safer alternative. Nexavir is contraindicated in those allergic to pork or liver products. It shouldn’t be used by those taking MAO inhibitors. The most common dosage is 2mls administered daily although some patients start with a lower dose.
 
 
Nimodipine– Nimodipine is a calcium channel blocker that is used to improve cognitive function or reduce pain in other illnesses. Dr. Goldstein found that Nimodipine improved ME/CFS patients’ cerebral blood flow (monitored through SPECT scans) and indeed this is the treatment’s primary usage in ME/CFS patients. Dr. Goldstein has labelled Nimodipine as one of the most useful treatments for both ME/CFS and Fibromyalgia. Dr. Mason Brown has found that Nimodipine helps 20% of ME/CFS patient quickly, another 20% over 6 months and the remaining patients to varying degrees. A report on Nimodipine usage in ME/CFS patients found that 9 out of 13 experienced enhanced mental clarity or improved general functioning.
 
Possible side effects of Nimodipine include; hypotension, nausea, headache, bradycardia, skin rash and peripheral edema. Specialists generally recommend starting at a low dose (some patients begin with as little as 1/16th of a tablet). The maximum dose normally recommended for ME/CFS patients is 30-60mg taken 2-3 times a day.
 
 
Oxytocin– This treatment is a neurotransmitter hormone whose most effective delivery method is widely considered to be injection, followed by nasal spray and finally tablets. The ME/CFS patients most likely to respond to Oxytocin are those with cold extremities. Dr. Flechas states that many ME/CFS symptoms are similar to those that an Oxytocin deficiency would cause. Dr. Goldstein found approximately 20% of his patients benefiting from Oxytocin injections and in those patients who do benefit, the improvement is dramatic. As well as Dr. Goldstein, the ME/CFS specialists; Dr. Lapp, Dr. Flechas and Dr. Teitelbaum all use Oxytocin injections on their ME/CFS patients.
 
Possible side effects of Oxytocin include; headache, weight gain, irregular heartbeat, nausea and dizziness. Intramuscular injections are sometimes given at 10 units and sublingual Oxytocin has been used by Dr. Cheney at 10 units up to a maximum of three times a day. Oxytocin should not be used by those who are pregnant.
 
 
Pentoxifylline– Pentoxifylline belongs to a class of drugs called xanthine derivatives and its most common usage is to improve cerebral and peripheral blood circulation. It may also benefit ME/CFS patients by reducing; the cytokine IL-2, lowering NF-Kappa B and downregulating the cytokine TNF-alpha. All three facets of the immune system are thought to be high in ME/CFS patients and potentially contributing to symptoms. Pentoxifylline also has antiviral and further immunomodulatory properties. Dr. Leslie Simpson has noted that Pentoxifylline is useful at reducing cognitive problems and dizziness in ME/CFS patients.
 
Pentoxifylline should not be taken by those who cannot tolerate stimulants. It should also be avoided by those with a peptic ulcer or at risk of haemorrhaging. The drug hasn’t been well studied in ME/CFS patients but in other illnesses is considered safe and well tolerated at 1200mg per day. The standard dose of Pentoxifylline for various non ME/CFS illnesses is 400mg three times per day.
 
 
Rifaximin (Xifaxan)– Rifaximin is an antibiotic that may benefit ME/CFS patients due to eradicating small intestinal bacterial overgrowth (SIBO). SIBO involves healthy bacteria in the large intestine being transferred to the small intestine thus causing gastrointestinal symptoms. Dr. Pimentel found 100% (42/42) of Fibromyalgia patients testing positive to SIBO compared to 20% of controls. The degree of pain experienced by Fibromyalgia patients in this study correlated strongly with the amount of hydrogen seen on the lactulose breath test. Rifaximin may also help ME/CFS patients as it balances gut flora. In vitro, 90% of the 536 strains of anaerobic bacteria tested were inhibited in vitro. Anecdotally, a reasonable number of ME/CFS patients have improved whilst on Rifaximin although many patients have had their symptoms return upon stopping the drug. Interestingly, some ME/CFS patients with no gastrointestinal symptoms improve. Dr. De Meirleir, Dr. Teitelbaum, Dr. Peterson and Dr. Myhill all use Rifaximin on their ME/CFS patients with some only using it after positive test results.
 
Rifaximin is generally well tolerated and only 0.4% of subjects in a traveller’s diarrhea study had to discontinue treatment due to side effects. The most common side effects are gastrointestinal. Long term usage of Rifaximin increases the chances of building resistance to the drug. Some specialists recommend a slightly lower dose of 550mg taken 2 times per day for 8 days. Other specialists recommend doses up to 550mg be taken 3 times per day for 14 days. It is recommended that probiotics are taken after Rifaximin usage.
 
 
Sleep Aids– In the attached link I examine the various prescription sleep drugs that the ME/CFS specialists recommend. Dr. Cheney, Dr. Teitelbaum, Dr. Klimas, Dr. Lapp, Dr. Myhill and Dr. Enlander all have certain sleep inducing and sleep enhancing drugs that they try on their patients in a specific order.
 
 
Vitamin B12 Injections– Despite often having normal B12 as determined by a blood test, ME/CFS patients commonly have low B12 levels in their brain. High levels of B12 being injected can ensure that sufficient B12 crosses the blood-brain barrier. B12 may also benefit ME patients by acting as a scavenger of nitric oxide, a compound that may contribute to ME/CFS symptoms. A poll found that 50%-80% of Dr. Lapp and Dr. Cheney’s ME/CFS patients improved to some degree after taking B12 injections. A study found that ME/CFS patients were much more likely to respond to B12 injections if they had more frequent injections, a higher dose of B12, tried the treatment for longer and were taking oral folic acid. The study also found that the concentrated (5mg/ml) methylcobalamin form of B12 tended to be more effective than the hydroxocobalamin form (1mg/ml). Some specialists prefer the cyanocobalamin form of B12 as it is more stable. If an ME/CFS patient doesn’t respond to B12 injections, they may respond to oral folic or folinic acid. B12 is also available over-the-counter in a sublingual form however this isn’t necessarily as effective as the injectable versions. ME/CFS specialists inevitably opt for injectable B12 over other forms. Dr. De Meirleir, Dr. Lapp, Dr. Teitelbaum and Dr. Cheney are amongst a number of ME/CFS specialists to use this treatment.
 
When taking high doses of B12, a vitamin B complex is recommended to be taken concurrently. Although considered to be a fairly safe treatment, B12 may cause a temporary weakness in some patients. Dosage, type of B12, frequency of injection and method of injection vary depending on the physician’s preference.

 

 

 

Over-the-Counter Treatments for ME/CFS (Non Prescription)

 

Artesunate– Artesunate is a derivation of the herb artemisia and commonly used in the non-ME/CFS realm for its anti-malarial properties. It may benefit ME/CFS patients due to its potential anti-herpesvirus and anti-CMV effects. Using Artesunate, Dr. Cheney has doubled his number of ME/CFS cures and 75% of patients have shown some level of improvement using this treatment. Part of Dr. Cheney’s protocol involves the Artesunate being used concurrently with the herb wormwood.
 
Some ME/CFS patients taking Artesunate have reported dizziness or tiredness. Dr. Cheney recommends the brand Hepasunate be taken on three days of the week. As opposed to swallowing the capsule, he encourages patients to place half the contents of the capsule under their tongue for a period of a minute followed by swishing it around their mouth and spitting the remnants out.
 
 
Benfotiamine and Allithiamine– These are alternate versions of high dose thiamine that may be better absorbed. Anecdotally, many patients have improved as a result of these treatments. Studies have shown that a thiamine deficiency can causes similar symptoms to ME/CFS and these symptoms can be resolved (especially fatigue) after treatment with high doses of thiamine. See ‘Thiamine- High Dose’ for more information about thiamine and ME/CFS.
 
Theoretically, these treatments should be avoided by those who have cancer. Few side effects have been reported by those taking Benfotiamine and Allithiamine. It is difficult to determine a standard quantity for these ‘high dose’ treatments as patients have tried a wide range of doses. Anecdotally, ME/CFS patients online have commonly taken either 50-200mg of Allithiamine or 300-600mg of Benfotiamine.
 
 
Biotin– Biotin deficiency has many shared features with ME/CFS. Several anecdotal accounts are online that mention Biotin greatly benefiting ME/CFS patients. High dose Biotin is currently being studied, with some promising results, as a treatment in progressive multiple sclerosis.
 
Biotin is normally a fairly safe treatment with few side effects noted. The dosages used by ME/CFS patients have often been in the 300mcg-1000mcg range. A neurologist from Massachusetts recommended that an ME/CFS patient take; 100mg of B1 (twice a day), 100mg of B2 and the high dosage of 5000mcg of Biotin for treating post-exertional malaise. This treatment benefited the patient.
 
 
Butyrate– Butyrate may improve ME/CFS patients’ gut symptoms by creating T-cells in the digestive system. It may reduce cognitive symptoms, lower inflammation and enhance the immune system. Studies have shown that butyrate may be beneficial in treating ulcerative colitis and Crohn’s disease symptoms.
 
Butyrate is low in side effects and 1-2 capsules are usually taken with each meal.
 
 
Coenzyme Q10– Coenzyme Q10 is a treatment that when taken with L-Carnitine, has superior effects. These treatments both enhance mitochondrial function and hence may benefit ME/CFS patients. The active version of Coenzyme Q10, Ubiquinol is often preferred. A study found a close association between levels of Coenzyme Q10 and severity of ME/CFS. Dr. Lapp has found that about half of his patients benefit from Coenzyme Q10 generally by around 10%-15%. A University of Iowa study rated Coenzyme Q10 as the leading treatment for ME/CFS with 69% of patients reporting it as beneficial. A study with 20 ME/CFS patients (80% of those deficient in Coenzyme Q10) found 90% had a reduction or complete disappearance of symptoms after 3 months of taking Coenzyme Q10.
 
There is a theory that taking Coenzyme Q10 as two doses throughout the day can increase its efficacy. There also exists a sublingual version of Coenzyme Q10. Alongside the energy boost that Coenzyme Q10 may provide, it occasionally causes insomnia. Those with diabetes or other types of hypoglycemia should be wary of Coenzyme Q10 as it can reduce blood sugar levels. The daily dose that is used generally varies from 50mg to 300mg.
 
 
Cordyceps Sinensis and Shiitake Mushroom– Cordyceps Sinensis may enhance the immune system. A study on healthy subjects found ‘CordyMax’ increased aerobic capacity, reduced fatigue and lowered diastolic blood pressure. Another treatment that is similar to Cordyseps Sinensis is Shiitake mushroom which may increase interferon levels and have antiviral and immunomodulatory benefits. Anecdotally, numerous ME/CFS patients have reported more energy after taking versions of Shiitake mushroom supplements. A Japanese study that used injected ‘Lentinan’ taken from Shiitake mushroom on ME/CFS subjects found patients’ natural killer cell function increased. Recovery of the majority of patients studied took several months. Another study injected Lentinan into ME/CFS patients and found that 6 months of injections was required to normalise natural killer cell activity. Lentinan doesn’t get absorbed orally hence has to be given as an injection. Maitake and Reishi are another two of the many types of mushroom supplements used by ME/CFS patients. A study found that oral Maitake and oral Shiitake mushroom in combination significantly increased natural killer cell function in mice.
 
Most people that take Cordyceps Sinensis experience no side effects however rarely diarrhea and nausea can occur transiently. In the aforementioned study, subjects took 333mg of Cordymax three times per day with meals. Shiitake mushroom supplements may cause gastrointestinal symptoms or a rash. Shiitake mushroom supplements are sometimes used at daily doses between 400mg-1500mg, with this total daily dose broken up into smaller doses taken several times a day.
 
 
Curcumin– Curcumin is a derivation of turmeric. A study found that curcumin benefited mice with ‘CFS.’ Dr De Meirleir has recommended this treatment to some patients. It may reduce cognitive impairment, improve HPA axis dysfunction and have anti-inflammatory and antioxidant properties. A study found that when Curcumin is supplemented with either; olive oil, stearic acid or choline, the brain and blood absorption levels of Curcumin dramatically increase.
 
Side effects from Curcumin usage are rare however if they do occur are generally of a gastrointestinal nature. Dosages used generally fall within the 500mg-1000mg range. Those with illnesses other than ME/CFS have ventured up to 8 grams of Curcumin a day. The absorption levels of the specific type of Curcumin used are relevant when determining a dosage.
 
 
D-Ribose– This treatment may improve mitochondrial function and supply the body with energy. A pilot study found that 66% of ME/CFS patients significantly improved while taking D-Ribose. A follow up study involved 203 ME/CFS and Fibromyalgia patients that completed three weeks of treatment. The patients’ experienced: an average energy increase of 61%, a 37% improvement in well-being, a 30% increase in mental clarity, a 29% enhancement in sleep and a 16% reduction in pain.
 
D-Ribose shouldn’t be used by those with gout as it may raise uric acid levels. Side effects can include nausea, headache and sleepiness. In the above D-Ribose studies, patients took 5 grams of D-Ribose, three times per day. It may be wise to start at a lower dose, to gauge any potential side effects.
 
 
Energy Revitalization System– This formulation contains a broad range of nutrients including a B vitamin complex. It also contains various amino acids, choline, malic acid and biotin. It was developed by Dr. Teitelbaum and it is claimed that it can replace taking 30 tablets in the one formulation. A number of the ingredients probably aren’t of a high enough dosage to have a therapeutic effect on some patients although other parts of this formulation contain reasonable dosages. Many ME/CFS specialists recommend that patients take a multi-vitamin tablet including Dr. Cheney who labels a quality multi-vitamin as “essential.” Energy Revitalization System isn’t a multi-vitamin tablet but rather a powder containing eclectic ingredients targeted at improving patients’ energy.
 
A small number of patients taking this treatment experience gastrointestinal symptoms. The typical dosage is one scoop (20.3 grams) per day.
 
 
Epicor– Studies have shown that Epicor may improve natural killer cell function (which is almost inevitably low in ME/CFS patients) up to 4-fold.  A similar substance, beta-glucan, may regulate other parts of the immune system too. A study that induced mice with ‘CFS’ found that beta-glucan significantly improved the symptoms of the mice.
 
Epicor and beta-glucan are considered to be fairly safe supplements. The standard dosing of Epicor and beta-glucan ranges from 200mg to 3000mg.
 
 
Essential fatty acids (EFA)–  Essential fatty acids include such substances as; flaxseed oil, evening primrose oil and fish oil. The first study to examine EFA usage in ME/CFS patients provided patients with both omega-3 and omega-6, resulting in 85% of the patients showing at least moderate improvement. A second study on ME/CFS patients taking EFA found 90% of patients experiencing a reduction in symptoms. Another study that provided patients with eicosapentaenoic acid (EPA) found that all four patients improved while the same patients didn’t respond to a placebo.
 
Heartburn and gastrointestinal symptoms are some of the most common side effects of fish oil. The recommended dosing of EFA varies depending on what type of EFA product is being used. Fish oil is often used at 3000-4000 mg per day.  
 
 
Far Infrared Sauna– A study on 13 ME/CFS patients using a Far Infrared Sauna found two patients dramatically improve. The other 11 ME/CFS patients had a reduction in physical symptoms, lower levels of pain and reduced fatigue. Another study monitored the effects of Far Infrared Saunas on 10 ME/CFS patients. Average fatigue levels reduced on a 10 point scale from 6.7 to 4.8.
 
It is recommended to hydrate after a Far Infrared Sauna session with electrolytes. Also, many people shower when a session is completed to remove the excess sweat from their body. The Far Infrared Sauna user should also be cognisant of the signs of heat stroke. ME/CFS patients that do trial this therapy should start off for only a short period of time in the Far Infrared Sauna before gradually increasing the time period if they don’t experience side effects. Some patients slowly build up to having a maximum 15-30 minute session per day.
 
 
Fucoidan– There is limited information online pertaining to ME/CFS patients taking Fucoidan. Despite this, over 850 studies on Pubmed detail many effects that may potentially benefit ME/CFS patients. These include; immune modulation, antiviral, anticoagulant and anti-inflammatory effects. A study found that Fucoidan reduced the amount of fatigue experienced by cancer patients.
 
Fucoidan is widely considered to be a safe treatment. Some people have experienced transient diarrhea while taking this treatment. Anticoagulants shouldn’t be used while a patient in on Fucoidan. Studies have found that the efficacy of Fucoidan is largely dose dependant. An osteoarthritis study determined that 1000mg per day had a much better effect on subjects that 100mg per day. Fucoidan has been largely untried by the ME/CFS patient community hence appropriate doses are hard to establish.
 
 
Germanium– A 1988 paper reported that Dr. Greenberg found 25% of his ME/CFS patients showing “substantial clinical improvement” as a result of taking 300mg of Germanium a day. Dr. Maslin in the same paper found 150mg-300mg daily was sufficient to provide significant relief from ME/CFS symptoms in the majority of his patients and found 20% of patients to be non-responders. Dr. Anderson found half of his patients responding favourably to Germanium with doses for some patients needing to be as high as 1 gram.
 
If patients are keen to take high doses of Germanium, they should have regular tests to monitor kidney function. It may be wise for ME/CFS patients to start Germanium at a low dosage and gradually build up to 300mg per day. As the above specialists’ reports indicate, some patients may need high doses, up to 1 gram a day to experience the effects of this treatment. The safer, medicinal form of Germanium is known as organic Germanium-132, the inorganic form is not recommended for supplemental use.
 
 
Hawthorn– Dr. Cheney has been an advocate of Hawthorn and did recommend its use in tandem with the prescription injectable, Nexavir. Hawthorn may improve the heart’s ability to pump blood around the body. Dr. Cheney trialled it on some of his patient and noted that it improved their cardiac output.
 
In low doses, Hawthorn is non-toxic. Side effects are fairly uncommon but may include; nausea, headaches and palpitations. Doses used generally fall between 200mg-1000mg.
 
 
Inosine– The supplement, Inosine, is the active ingredient in prescription medication ‘Isoprinosine.’ A study on the prescription version of this treatment found benefits in 6 out of 10 ME/CFS patients. Dr. De Meirleir believes the supplement Inosine is as effective as the prescription formulation. Inosine is antiviral and an immunomodulator. Dr. Sharp has labelled its prescription cousin as “One of the safest, most cost effective and helpful drugs at our (ME/CFS doctors’) disposal.”
 
Inosine is fairly low in side effects although some patients have experienced insomnia and headaches. Inosine can raise uric acid levels so shouldn’t be taken by those with gout. ME/CFS patients commonly take inosine at a dosage of 500mg three times a day but only on five days of the week. The treatment isn’t taken on 2 consecutive days each week such as the weekend. A pulsing dosing structure of this treatment is recommended so the patient doesn’t build up a tolerance to the Inosine.
 
 
IP-6 (Inositol Hexaphosphate)– The main mechanism of this supplement is to increase natural killer cell activity which is inevitably low in ME/CFS patients. Dr. Conley reports that he has used IP-6 to increase natural killer cell function in dozens of cases of ME/CFS. He notes one patient who went from being unable to work to working a 32-40 hour a week job as a result of taking IP-6. A related treatment that some patients use is Inositol. Inositol may be useful against insomnia and depression.
 
IP-6 is generally low in side effects with the most common being gastrointestinal. It is recommended that this supplement be taken on an empty stomach and twice a day. Some ME/CFS patients start with a lower dose of IP-6 such as 500mg and gradually increase this dosage to a total daily dose between 2-8 grams. The dose is taken at two separate occasions each day.
 
 
L-Carnitine– This amino acid could potentially benefit ME/CFS patients due to improving mitochondrial function. Acetyl-L-Carnitine may be better absorbed by the body than standard L-Carnitine. When taken in tandem with Coenzyme Q10, the positive effects may be magnified. A research centre found that out of 150 ME/CFS patients taking L-Carnitine, 69% noted an improvement in symptoms. A study found 12 out of 18 ME/CFS patients noting a statistically significant reduction in fatigue as a result of taking L-Carnitine. Another study found that 59% of ME/CFS patients taking Acetyl-L-Carnitine improved, 63% taking Propionyl-L-Carnitine improved but only 37% taking both treatments improved. The study noted that Acetyl-L-Carnitine mainly reduced mental fatigue while Propionyl-L-Carnitine was more likely to lower general fatigue. Studies have found ME/CFS patients low in cellular acylcarnitine levels. Deficiency of acylcarnitine can produce symptoms similar to ME/CFS. A study also found that as acylcarnitine levels improved in ME/CFS patients, symptoms improved.
 
L-Carnitine should be avoided by those ME/CFS patients with low thyroid. If side effects do occur, they may be of a gastrointestinal nature. L-Carnitine should be taken with food and recommended dosages range from 1000mg to 2000mg per day. Patients often start off with a lower dose before increasing the dosage if no side effects occur.
 
 
L-Serine– L-Serine is an amino acid that former ME/CFS specialist Dr. Buttfield believes should help 60% of CFS patients significantly. Dr. Vallings found that 5/6 ME/CFS patients benefited from L-Serine supplementation. A study found that ME/CFS patients had “significantly reduced” levels of L-Serine in their urine when compared to healthy controls. The study continued on to note that those ME/CFS patients with low urinary L-Serine levels had mainly neurological symptoms and high levels of pain.
 
L-Serine side effects are fairly rare but may consist of sleep disturbance or gastrointestinal symptoms. Dr. Buttfield’s protocol consisted of beginning patients on 500mg of L-Serine in the morning and increasing this dosage to 2 grams per day.
 
 
Magnesium– The majority of ME/CFS specialists incorporate either oral magnesium or magnesium injections into their treatment protocol. Dr. Cheney believes magnesium can benefit ME/CFS patients due to; enhancing energy, improving sleep and lowering muscle pain. He advocates oral magnesium glycinate due to its ability to cross the blood-brain barrier and also be absorbed into cells. Other ME/CFS specialists prefer magnesium citrate due to its possible higher levels of bodily absorption.
 
Another facet of Dr. Cheney’s advocacy of magnesium glycinate is that this treatment is less likely to cause gastrointestinal symptoms. Other forms of magnesium are more likely to cause diarrhea. Magnesium should be taken with food and dosages should begin at low levels before increasing to the 200mg-400mg range.
 
 
NADH– This treatment is a form of coenzyme 1. A study found that 31% of ME/CFS patients improved while taking NADH in comparison to 8% of the control group improving. 18 out of 25 (72%) of ME/CFS patients enrolled in the longer follow up version of this study noted improvements. There is some evidence that it may take up to 6 months before certain ME/CFS patients respond to this treatment.
 
Side effects tend to be rare but mild overstimulation is possible. NADH should be taken on an empty stomach, before breakfast. Recommended dosages range from 5mg up to 20mg per day.
 
 
Naphazoline HCL– Dr. Goldstein, who was an ME/CFS specialist, always tried Naphazoline HCL 0.1% eye drops as an initial treatment when a patient stepped into his office. He claimed that 20% of patients benefited from this treatment and in those patient who benefited, the benefits were remarkable and immediate. He theorised that those patients in the cohort of having severe anxiety were the most likely to respond. In some countries such as Australia, Naphazoline HCL is available over-the-counter.
 
The delivery process of this treatment involves placing a drop in each eye. Due to the nature of Naphazoline HCL, any benefits will be felt almost instantaneously. One of the most common side effects is local irritation. The occurrence of more serious side effects from this treatment is unlikely but may include; dizziness, headache or nausea. The dosage of the Naphazoline HCL eye drops used should be 0.1% and not 0.01%.
 
 
NeuroProtek– NeuroProtek contains a number of eclectic supplements; luteolin, quercetin and rutin in tandem with the antioxidant, olive kernel oil. Anecdotally, many ME/CFS patients have reported a reduction in cognitive impairment as a result of taking NeuroProtek. A drawback is that often the cognitive impairment returns when the patient ceases taking the treatment. Neuroprotek may be able to normalise mast cell function.
 
Side effects of NeuroProtek are rare however caution is advised if the patient is concurrently taking drugs that are metabolised by the liver as NeuroProtek may alter the blood levels of these substances. The dosage of NeuroProtek is dependent on the patient’s weight, with a daily dose being 2 capsules taken per 20kg (44lbs) of body weight. The maximum dose, regardless of body weight is 8 capsules per day. Capsules should be taken with food and the dosage spread out across the day.
 
 
Nicotine Gum– Former ME/CFS specialist, Dr. Goldstein wrote fondly of Nicotine Gum as a treatment for ME/CFS. He noted that patients experienced an improvement in energy, cognition and mood as a result of this treatment although did caution that some patients may get worse. It potentially benefits ME/CFS patients due to inhibiting brain inflammation. Several patients have noted an improvement in cognition and increase in energy as a result of this treatment.
 
Nicotine Gum can be detrimental to those with Crohn’s disease. Dr. Goldstein stipulates that occasional patients will have a worsening of ME/CFS symptoms as a result of taking this treatment. If a patient does improve on this treatment, benefit will be noted soon after taking the gum. One ME/CFS patient took a week before experience more energy. Nicotine may increase blood pressure which may be detrimental if an ME/CFS patient has high blood pressure. Longer term use of nicotine is also conducive to health problems such as addiction, periodontal problems and hair loss. If this treatment is trialled, a low starting dose is imperative.
 
 
Oxymatrine (Equilibrant)– Equilibrant is Dr Chia’s own formulation of Oxymatrine that also contains; Astragalus, Olive Leaf, Liquorice and Shiitake Mushroom. Oxymatrine, derived from the Sophora plant, is thought to be effective against enteroviruses. Dr. Chia has trialled Oxymatrine on 500 ME/CFS patients and has found approximately 52% of his patients improve as a result of taking this treatment.
 
Common side effects of Oxymatrine can include headache, fatigue or an increase in ME/CFS symptoms. Oxymatrine should be avoided by those with autoimmune tendencies or seizure disorders. A low starting dose of Oxymatrine is essential for ME/CFS patients and the dosage should only be titrated upwards after a week.  The maximum dosage of this treatment is in the realm of 200mg taken in the morning and 200mg taken in the afternoon. Dr. Chia’s Equilibrant doesn’t list the amount of Oxymatrine in the product however the recommended initial dosages of this product is 1 tablet per day for 1-2 weeks. This is followed by a gradual increase of dose, with patients taking up to a maximum of 6 tablets per day.
 
 
Piracetam– Piracetam is a supplement that specifically targets enhancing cognition. It may also benefit ME/CFS patients due to increasing blood circulation. A study that gave fatigued patients (not necessarily those with ME/CFS) Piracetam and Cinnarizine (an antihistamine) found that patients’ physical fatigue significantly reduced. There exist several similar products to Piracetam that may also benefit ME/CFS patients and these are classed as nootropics.
 
In non-ME/CFS studies, Piracetam has rarely caused side effects. One study ascertained that 12% of subjects experienced sleep disturbances while taking this treatment. If a headache does occur while a patient is taking Piracetam, Choline may be a beneficial tandem treatment. Anecdotally some ME/CFS patients have stated that they can only tolerate a small dose of Piracetam- in the 100mg range. Other patients even find this dose too stimulating. Starting at the normally recommended dosage is not recommended for those with ME/CFS. The dosage of Piracetam used for other indications can be up to 20 grams per day. ME/CFS patients generally require much smaller dosages in the 0.8-4.8 gram range. This dosage is spread out across the day and taken at three different occasions at 8 hour intervals. Different countries have various classifications on Piracetam pertaining to its over-the-counter or prescription status.
 
 
Post-Exertional Malaise Treatments– This debilitating and central symptom of ME/CFS is often overlooked by doctors. There exists a range of treatment worth trying that I’ve written about in the attached link that benefit patients to varying degrees once in a ‘crashed’ state. These include; Hydralyte iceblocks, liquorice, D-Ribose, electrolyte solutions, leg elevation, massage, meditation, warm baths or cold baths.
 
 
ProBoost– Also known as thymic protein A, a study found 16 out of 23 ME/CFS patients experienced a normalisation of immune function as a result of taking this treatment. There was a corresponding improvement in the clinical ME/CFS symptoms of patients in this study. Another study examined the use of thymic protein A in 6 ME/CFS patients with high EBV titre levels. Patients experienced an increase in energy and required less sleep to function. There exist several reports online of patients greatly benefiting from ProBoost. Many ME/CFS patients who feel run down or on the precipice of a virus take ProBoost.
 
Side effects as a result of taking ProBoost are rare with occasional patients reporting mild, flu like symptoms when they start this treatment. The dosage used varies depending on whether the patient is taking it as a maintenance dosage- 1 packet a day or are fighting off an acute infection- 3 packets per day. Dr. Teitelbaum recommends that ME/CFS patients take one packet of ProBoost, 3 times a day.
 
 
Propax with NT Factor– This product contains a number of treatments all in the one formulation. Many of these lone treatments are individually used by ME/CFS patients including; quercetin, L-Glutathione, NAC, grape seed extract, various B supplement and NT factor. A study that was ominously run by the company that produces this product found that those with the symptom of severe fatigue (not necessarily ME/CFS) experienced a reduction in fatigue by on average 40%. Another study found Propax with NT Factor reduced the fatigue experienced by cancer patients. Propax with NT Factor is potentially a form of ‘lipid replacement therapy’. This entails repairing damage to a patient’s mitochondrial membranes. A study examined lipid replacement therapy’s efficacy on ‘moderately fatigued patients.’ As subjects mitochondrial function improved while taking lipid replacement therapy, their fatigue proportionally reduced.
 
Propax with NT Factor is considered to be a safe product with gastrointestinal symptoms rare but possible. It is recommended that the packet be consumed 2-3 times a day. The tablets in the formulation can be taken with or without food and the soft gel capsule that contains omega-3, EPA and DHA should be taken with food.
 
 
Ranitidine– Ranitidine is a treatment that former ME/CFS specialist Dr. Goldstein found benefited those with infectious mononucleosis. He then began using this treatment on ME/CFS patients with some success. If Ranitidine is not available over the counter in a country, often the alternative Cimetidine is. Dr. Goldstein has found that about 90% of mononucleosis cases respond to Cimetidine. When an ME/CFS patient does respond to one of these drugs, Dr. Goldstein notes that the recovery is remarkable. Approximately 20% of Dr. Goldstein’s ME/CFS patients respond to this type of drug.
 
Stimulation and headaches are two of the most common side effects of Ranitidine treatment. Dr. Goldstein recommends that 150mg of Ranitidine be taken twice a day. The alternative, Cimetidine, should be taken at 300-400mg. Dr. Goldstein has written that it may take from one hour to one week before a patient notices whether this treatment is working for them.
 
 
Selenium (high dose)– Numerous patients online have noted great benefit from this treatment. The symptoms that have generally improved in these patients are cognitive ability and energy. High dose Selenium may benefit ME/CFS patients due to its antiviral and strong antioxidant properties.
 
Taking high dose Selenium for more than several months is not recommended as it may increase the chance of toxicity, although Selenium toxicity generally occurs at higher doses (the 2400-3000mcg range). Overdosing on Selenium can cause numerous symptoms. The recommended dosage of the high dose Selenium protocol is between 400-800mcg a day. Some ME/CFS patients have noted side effects if they increase the dosage past 400mcg. The Selenium should be taken on an empty stomach to increase absorption. Yeast-free selenomethionine is thought to be the best form of Selenium to take although other forms may benefit certain patients more effectively.
 
 
Sleep Aids– In this link I present various ME/CFS experts’ opinions on sleep aids including many over-the-counter formulations.
 
 
Sulforaphane– This compound may benefit ME/CFS patients due to shifting the immune system from Th2 dominant to Th1 dominant. Sulforaphane is also an antioxidant, neuroprotective, defensive against oxidative stress and may improve mitochondrial function. It has been studied in autism and benefited those who took it through a mechanism the authors suspected may be due to inducing a “fever effect.”
 
In the aforementioned autism study, those taking Sulforaphane experienced a tiny increase in their liver enzymes. There is quite some conjecture about the amount of Sulforaphane the body absorbs. This is partly due to the possible discrepancy between the specific forms of Sulforaphane ingested. It is therefore difficult to pinpoint a commonly used dosage.
 
 
Thiamine (high dose)– Anecdotally, some ME/CFS patients have reported benefits from taking high doses of thiamine (vitamin B1). A small study of Fibromyalgia patients found all 3 patients benefiting from high dose thiamine treatment. Thiamine deficiency (which can be caused by a defective enzyme system) can produce similar symptoms to ME/CFS. A study found that fatigue associated with ulcerative colitis and Crohn’s disease can be caused by a thiamine deficiency and that high doses of thiamine resolved this fatigue. Despite this, across multiple studies examining various disease state, patients have normal blood thiamine levels yet improve significantly when taking high dose thiamine. A study has speculated that this may be due to low cellular thiamine transportation or enzymatic problems.
 
The three Fibromyalgia patients studied experienced no side effects as a result of high dose thiamine. Patients with other disease states taking high dose thiamine have reported insomnia and tachycardia. In the Fibromyalgia- high dose thiamine study, patients started at 600mg of thiamine a day and gradually increased this dose. Abrupt improvement was seen when patients reached 1800mg a day. Anecdotally, ME/CFS patients that have responded to high dose thiamine seem to have an optimal dose that varies from patient to patient. The challenge is to find this optimal dose without exceeding it and experiencing any side effects. If a patient doesn’t respond to thiamine, they may benefit from Benfotiamine or Allithiamine, which may be better absorbed.
 
 
Vagus Nerve Stimulation– Dr. VanElzakker has theorised that the vagus nerve being infected could explain many of the features of ME/CFS. The vagus nerve has been implicated in several other illnesses such as epilepsy, with stimulation of the nerve proving beneficial. A study implanted Fibromyalgia patients with a vagus nerve stimulation device with the authors concluding that it was a “useful adjunct treatment.” A less invasive measure to stimulate the vagus nerve involves attaching a TENS machine’s electrode pads to the tragus part of the ear.
 
 
Vitamin D– Vitamin D deficiency can often be a secondary problem that arises when ME/CFS patients are unable to get proper supplementation from sunlight. A retroactive study of 221 ME/CFS patients found that Vitamin D levels were “moderately to severely suboptimal in CFS patients.” Numerous patients online have benefited to some degree from Vitamin D supplementation. Dr. Lapp recommends Vitamin D3 to almost all of his ME/CFS patients.
 
Vitamin D side effects are rare at normal doses yet high Vitamin D may cause weakness, headaches or gastrointestinal symptoms. Some patients gain Vitamin D from sunlight or through daily lower level supplementation in the 1000-2000IU range that is available over-the-counter. To definitively raise Vitamin D levels, a single or once a month for several months prescription dose may be required. This may on occasions be as high as 100,000IU. Blood tests can monitor Vitamin D levels yet there is some conjecture about what levels are considered suboptimal. Studies have suggested that those with any form of chronic illness should try and maintain higher vitamin D levels than the healthy population.

 

About These Lists

The key purpose behind creating the above lists was to show patients who have lost hope that there are treatment ideas for this illness. Another purpose of these lists was to compile much of the information that was spread haphazardly across this blog in a centralised and easy to access location.
 
As I continue to write about other ME/CFS treatments on my blog, I will add them to this treatment page. There are many more treatments that I didn’t include in the above lists but ME/CFS patients may benefit from. The following are just some treatments that may help ME/CFS patients based on either study results or their use by some ME/CFS specialists; various probiotics, Glutathione, N-Acetyl Cysteine, methylation cycle treatments, MAF 314, IV saline solution, Gamma Globulin injections/IV, Lidocaine IV, Valtrex, Valcyte, Ergoloid, Levofolinic Acid, Nifedipine, Galantamine, Ampligen and Rituximab.
 
There seems to be a degree of disease heterogeneity across the entire collection of ME/CFS studies and indeed often within single ME/CFS studies. Some studies require that just the overly broad Oxford Criteria be met for patient inclusion. In contrast, other studies are narrower and demand more severely affected patients sharing more common symptomology. Many ME/CFS studies aren’t adequately funded and hence; don’t have a high number of participants, lack a placebo group and aren’t considered high quality. If these idealistic studies existed, I would have written more about these and the corresponding treatments but unfortunately they don’t.
 
It is for the above reasons that I often place a greater emphasis on what an ME/CFS specialist (who has stringently diagnosed ME/CFS) has found the clinical response rate of a treatment to be e.g. 30% of responders. This is why I have attempted to include as many clinical observations and comments from ME/CFS specialists as possible in the above lists.
 
Finally, I should emphasise that patients should always consult with their physicians prior to taking any treatment. I am not a doctor and nothing on this blog should be construed as medical advice. It is imperative that patients and their physicians are aware of possible side effects, including those not listed before starting any treatment. Patients should also be aware of possible interactions between any treatment they commence and their current medications. Some treatments listed are recommended for short term use only while other treatments may require up to 6 months of usage before effects may be noticed. ME/CFS patients are renowned for having a higher sensitivity to treatments than patients with other diseases. In many cases it is wise to begin treatments at a lower dose to mitigate the chance of more severe side effects.

In my previous blog entry, found here, I wrote about the general theory of heparin as a treatment for ME. This blog entry will detail my personal rationale for trying heparin. I will essentially illustrate why I believed this treatment was in theory suitable for me. Following this, I will describe the results of my heparin trial.

 

APS Antibodies

Several months ago, I had a blood test performed for antiphospholipid syndrome (APS). The results came back as follows:
 
Cardiolipin IgG Ab= 26     (normal is less than 12)

Beta 2 glycoprotein IgG Ab= 58     (normal is less than 20)
 
The footnote beneath the test read: “This result is consistent with antiphospholipid syndrome.” Thus begun my dalliance with hypercoagulation and subsequently heparin.
 
APS is an autoimmune condition. The hypercoagulation aspect of APS is caused by the APS antibodies. A diagnosis of APS generally requires 1 out of 3 positive antibody tests (I had two positive).  It also entails the occurrence of a past thrombotic event (which I haven’t experienced) or in women, pregnancy complications. The actual criteria are far more complicated and nuanced than this. Three papers by Berg et al. that I wrote about in my last blog entry, discuss why some ME patients have these antibodies and how they may indicate hypercoagulation in this patient population.
 
 

Raynaud’s Phenomenon

My former and now retired ME Specialist, stated that I had the coldest hands out of his 500 ME patients. My hands and feet have been consistently icy throughout the duration of my illness.
 
According to the paper ‘Low Level Activation of Coagulation with Coagulopathies in the Etiology of CFS / FM and Chronic Illnesses. An Explanatory Model.Increased SFM in the plasma may increase the plasma viscosity. Increased plasma viscosity decreases blood flow. Decreased blood flow may cause some end organ dysfunction. This may explain the Raynaud’s phenomenon of cold hands and/or cold feet.” Essentially the paper explains that the cold hands and feet of ME patients may be due to hypercoagulation.
 
 

SPECT Scan

My SPECT scan showed hypoperfusion in the brain.
 
Kato et al. in the 1997 study ‘Hypoperfusion of brain single photon emission computerized tomography in patients with antiphospholipid antibodies’ found SPECT scan hypoperfusion in headache patients with APS antibodies. They concluded that the SPECT scan results may be caused by “microarterial thrombosis, microvenous thrombosis or vascular spasms.”
 
 

Sed Rate

Since the onset of my ME, my sedimentation rate (sed rate) has been most commonly 2.
 
Referring to CFS and hypercoagulation, Researcher David Berg writes, “The normal range for sed rates should start above 3 or 4. Values below this are correlated with high SFM values. As the Soluble Fibrin Monomer (SFM) goes up in the plasma, these molecules form dimers (2 stuck together). This physically blocks the RBCs from settling out of the plasma, thus a low sed rate. The only other clinical condition to demonstrate low values involves paraproteins in the plasma such as in a cancer patient.”
 
 

Cold Water Therapy

The only treatment that has provided me with any significant improvement towards my ME symptoms has been immersing myself in cold water. Early on in my illness, this treatment would act like an elixir for several hours before wearing off. Eventually, I failed to respond to cold water therapy.
 
The following information from Professor Kakkar is from a tertiary source. Professor Kakkar of the Thrombosis Research Unit in Europe found poor blood circulation is CFS patients, this causes a reduction in oxygen supply to the brain and muscles. Professor Kakkar suggests that the production of the normal blood thinning enzyme TPA is reduced, as well as certain blood clotting proteins. Interestingly, Professor Kakkar advocates thermo regulatory hydrotherapy (TRHT), i.e. cold baths as the treatment for this poor circulation. Berg believes heparin is a more effective treatment.
 
 

Why Have I Been Treatment-Resistant?

I have tried hundreds of different treatments for my ME. Many of these treatments cause improvement in ME patients however the only treatment to significantly benefit me has been the cold water therapy, which as mentioned above, wore off. It is fairly unusual for an ME patient not to respond to the plethora of treatments I have tried. The hypercoagulation hypothesis is consistent with my non-responding status. CFS specialist Dr. Teitelbaum writes, “Using the blood thinner heparin has been able to help half of those who failed all other treatments.” He continues writing that “I find that about half of my patients with the most severe and refractory symptoms of CFS/FMS get better with this treatment.”
 
 

Coagulation issues

Prior to getting my blood drawn, I drink 1 litre of water. Despite this, the blood pathology nurse regularly comments that my blood is not flowing well and asks if I have consumed any water at all. Several patients online that have tested positive to hypercoagulation have also reported problems with their blood being drawn.
 
 

Hypercoagulation and Genetics

My 23 and ME genetic data lists venous thromboembolism as my highest-risk health condition relative to average. Based on my genes, my risk is 2.90x the norm. CFS &/or FM patients who have a hereditary deficiency for thrombophilia or hypofibrinolysis may be unable to control thrombin generation properly.” This is according to the Berg et al. paper, ‘Chronic Fatigue Syndrome (CFS) &/or Fibromyalgia (FM) as a Variation of Antiphospholipid Antibody Syndrome (APS): An Explanatory Model and Approach to Laboratory Diagnosis.’

 

 

Heparin-CFS Studies

I wrote in more detail about the heparin studies on CFS patients in my last blog entry. However I will now briefly outline the results of these studies. In the first study, 15/16 CFS patients benefited from heparin treatment either moderately or significantly. The second study found that on average, the 60 CFS patients improved by 85% while taking heparin.

 

Several of the above reasons for trying heparin are spurious and probably examples of my own confirmation bias. I hoped that the above pieces of eclectic evidence supporting heparin benefiting me would slot together like a jigsaw.
 
heparin
 
 

My Experience with Heparin

I was somewhat undecided over which type of heparin to inject. Unfractionated heparin was mainly utilised in the CFS studies and Dr. Teitelbaum used this type. It did however have the negative potential of having more side effects. Low molecular weight heparin is considered to be safer, yet due to only being recently introduced into the USA, it is less tried on ME patients. Ultimately, I used the unfractionated heparin.
 
On the 7th of July, I began the heparin injections, subcutaneously around my stomach. The dosage was 5000 IU, twice a day (a total of 10,000 IU a day). I would inject upon waking and again just before sleep. I also began taking 500mg of bromelain in the morning and 500mg in the afternoon as it helps improve fibrinolysis. David Berg’s protocol incorporates it for certain patients, depending on their blood test results.
 
After 3 weeks on the heparin, I had failed to notice any positive or negative effects. I therefore began taking piracetam concurrently. Piracetam is a nootropic and a study found that when piracetam is taken with heparin, the effects of both treatments are enhanced. I started at a low dosage of piracetam and gradually titrated this number upwards to a maximum of 4.8 grams (1.6 grams taken three times a day). I first tried piracetam 5 years ago and experienced no real effects. I have written about piracetam for ME here.
 
After 3 weeks of heparin, I gradually began to increase the dosage upwards to a maximum of 7,500 IU twice a day (15,000 IU total a day). Dr. Teitelbaum has patients maximise their heparin dosage at 8,000 units twice a day (16,000 IU total a day), if their blood work remains normal. I did have regular blood tests while on the heparin.
 
On the 10th of August, I ceased the heparin injections. After 5 weeks, I had not managed to note one iota of improvement. Alternately, I didn’t experience any side effects either. The patients Dr. Teitelbaum treats with heparin tend to improve within 2 weeks. The Berg et al. study patients drastically improved within 2-4 days of commencing treatment. I was never planning on trialling heparin for an extended period of time and I believe 5 weeks was sufficient to prove that it was not working for me.

 

APS Blood Test Meaning

I believe the abnormal APS blood tests may provide some clues into my ME etiology. This study by Hokama et al. found cardiolipin antibodies in a high portion of CFS patients. The results varied depending on which cardiolipin antibody was being tested. My cardiolipin IgG levels were 26 (normal is less than 12). 4/40 CFS patients tested in the study had positive IgG levels. The Hokama et al. study found 95% of CFS patients testing positive to cardiolipin IgM antibodies. The authors’ conclusion writes “…suggesting that CFS may be an autoimmune condition.” The paper also states that CFS patients may aim to suppress the cardiolipin antibodies in their blood. The authors continue on to argue that this may be achieved through Rituximab usage because “Rituximab may serve as an effective therapeutic agent for ameliorating the symptoms of CFS.” It is interesting that Rituximab is now emerging as a promising treatment for ME.
 
My Beta 2 glycoprotein IgG levels of 58 (normal range is less than 20) is most commonly associated with APS. Levels of 20 of greater exceed the 99th percentile. The precise meaning of this test is complicated but it can also be indicative of an autoimmune disease.
 
 

Conclusion

Heparin was a treatment that I held lots of hope for. My above abnormal APS blood test results fitted in well with the Berg et al. papers and the hypercoagulation hypothesis. My peripheral justifications for trialling heparin such as my Raynaud’s phenomenon, brain hypoperfusion and low sed rate coupled with my various other idiosyncratic symptoms posited heparin as the perfect treatment for me.

 

My hopes of improving as a consequence of taking heparin were dashed in a sluggish manner. Day-by-day I failed to improve on the injections until after 5 weeks I thwarted my heparin therapy. Most treatments I trial are directed somewhat at me but more broadly the generic ME patient- whomever he or she is. This was a treatment that seemed tailor-made for my symptoms and blood test results. From a different perspective, heparin is a risky treatment and I am pleased that I didn’t experience any side effects. It is unfortunate that it didn’t work, although I am now quite accustomed to ME treatments not working for me! I am hopeful that my APS blood test results can provide an inkling into the lingering mystery that is my ME.

 

 

Heparin for ME

Heparin is an anticoagulant drug that may be useful to some ME patients. It is typically used in the prevention and treatment of both pulmonary embolism and deep vein thrombosis. It has been theorised that ME in some instances may be caused by a hypercoagulable state and thus heparin would treat this. I will; examine the heparin studies on ME patients, present the opinions of ME experts on heparin and detail which patients may benefit from either heparin or an alternative anticoagulation treatment.

heparin

The theory

The human body’s coagulation process is complicated. The ME-coagulation theory is doubly complex and a simplified theory describing it is as follows. Patients initially are struck down with an infection such as; HHV-6, EBV, CMV, chlamydia pneumonia, a tick borne disease or another pathogen. Research involving David Berg suggests that numerous infections can instigate the body’s blood clotting system. This may target those people with an acquired or genetic coagulation defect. After the clotting process is activated, the body creates ‘soluble fibrin monomers’ (SFM). These SFM are analogous to sheets that cover the blood vessels. The resultant impairment of blood circulation is then responsible for ME symptoms.

 

The studies

The first study by Berg et al. was published in 1998 and titled ‘Is CFS/FM due to an Undefined Hypercoagulable State Brought on by Immune Activation of Coagulation? Does Adding Anticoagulant Therapy Improve CFS/FM Patient Symptoms?’ The full paper can be found here. 20 CFS/Fibromyalgia patients were involved in this pilot study however there was no control group. The patients were tested for various coagulation measures. 90% had an abnormal ‘sonoclot rate’, 88% had abnormal ‘SFM’, 48% had abnormal ‘fibrinogen’ and 60% had abnormal ‘platelet activation’.

 
16 of the patients with positive ‘baseline studies’ were treated with placebo for a week followed by heparin. The heparin was administered subcutaneously twice a day and ranged from 5000 units to 8000 units. After one month, the subjects rated their subjective improvements. All 7 of the fibromyalgia patients improved. 1 patient noted some improvement, 3 had moderate improvement and 3 experienced significant improvement. All 9 of the CFS patients improved. 4 said they had moderate improvement whilst 5 had significant improvement. The paper continues on to state that most of the patients began to feel like their “old selves” within 2-4 days of commencing the heparin treatment.

 
The second study Berg et al. published was in 1999 and titled Chronic Fatigue Syndrome (CFS) &/or Fibromyalgia (FM) as a Variation of Antiphospholipid Antibody Syndrome (APS): An Explanatory Model and Approach to Laboratory Diagnosis.’ The full paper can be found here.  A blinded ‘prospective’ study is detailed within this paper. It contained 54 CFS/Fibromyalgia patients and 23 controls. Five specific coagulation tests were performed on all subjects and two positive tests were required to be classified as having coagulation problems. 94% of the CFS/Fibromyalgia patients were positive for hypercoagulation, in contrast to just 4% of the controls testing positive.

 

The Third paper by Berg et al. was titled ‘Low Level Activation of Coagulation with Coagulopathies in the Etiology of CFS / FM and Chronic Illnesses. An Explanatory Model.’ The full paper is behind a paywall but can be accessed here for free. This paper claims that in excess of 3000 patients with chronic illnesses have been tested for coagulation problems and over 80% of these patients have tested positive. The paper also mentions that genetic studies have found a 2-10 fold increase in coagulation protein defects among CFS/fibromyalgia patients and others with a chronic illness. The paper also alludes to ‘unpublished data’ that shows having SFM in the blood may cause very low sedimentation rates (in the 0-4 range).

 
The paper also refers to a retrospective study involving a cohort of 60 CFS/fibromyalgia patients. The subjects were given 5000 units subcutaneously of heparin, twice a day for an average of 8 months. The average improvement on a scale of 1-10 was 8.5, equivalent to an 85% improvement.

 

A Negative study has also been published by Kennedy et al. The 2006 study was titled ‘Is chronic fatigue syndrome associated with platelet activation?’ The full study can be found here. The study included 17 ‘CFS’ patients who fulfilled the contentious Fukuda criteria as well as 16 controls. The study found no coagulation abnormalities in the CFS patients studied.

 

What the ME Specialists Say

Dr. Teitelbaum has written “Using the blood thinner heparin has been able to help half of those who failed all other treatments.” He continues writing that “I find that about half of my patients with the most severe and refractory symptoms of CFS/FMS get better with this treatment.” Dr. Teitelbaum has found that almost every CFS patient he has tested to be positive for hypercoagulation. He does however stipulate that he hasn’t tested healthy controls to compare his results. Dr. Teitelbaum also warns about the dangers of heparin treatment and warns that it is a riskier drug than most of the other drugs he recommends. He tends to use it as a last resort. Dr. Teitelbam is also not 100% convinced in the hypercoagulation hypothesis. He speculates that another feature of heparin may be responsible for the positive effects on CFS patients such as its antiviral properties.

 
Dr. Cheney mentions heparin in a talk given in the year 2000. He speaks of its ability to shift the immune system from Th2 dominant to Th1. This may potentially benefit ME patients with a Th2 shifted immune system. Dr. Cheney only recommends heparin if the patient tests positive to hypercoagulation. He has found approximately 50% of his patients testing positive.

 
Dr. Myhill is not an advocate of heparin in ME patients. She has trialled heparin usage in 4 of her patients with no success. She cites the aforementioned negative Kennedy et al. study as evidence against hypercoagulation being a factor in ME.

 
 

Testing

When it comes to hypercoagulation testing and ME, things can become complicated. It has been suggested by David Berg that any ME patient with cold hands and feet/Raynaud’s phenomenon and a low sedimentation rate be tested for hypercoagulation. Berg, who introduced the concept of specialised coagulation testing has found sedimentation rates “below 4 or 5” indicative of hypercoagulation in ME patients. Sedimentation testing is a standard blood test that is routinely done with most normal blood tests. Most ME patients will probably have this test on file and it is commonly listed as ‘ESR.’

 
The coagulation tests so far mentioned in the above studies and requested by the ME physicians have been specialised and done by the Hemex laboratory. They were taken over by Esoterix Laboratory Services who now do the coagulation tests and are based in the United States. This is considered the gold standard test in hypercoagulation.

blood coagulation

 
Antiphospholipid antibody syndrome (APS), also sometimes referred to colloquially as Hughes’ Syndrome is an autoimmune disease that is characterised by blood coagulation. Standard laboratories around the world can test for APS. The studies and papers by Berg et al. above refer to their findings in ME patients as a “Variation of Antiphospholipid Antibody Syndrome.”  The papers continue on to mention that “Antiphospholipid (APL) antibodies have been long associated with a hypercoagulable state, involving both procoagulant activity as well as inhibition of anticoagulant and fibrinolytic activity.” One of the APS antibodies that can be readily tested for is called ‘beta-2-glycoprotein.’ This according to Berg et al. can trigger the chain of clotting. The other subtests and their implication in APS are detailed here.
 

 

Heparin Protocols

There exist several theories pertaining to the best methods of taking the heparin once hypercoagulation has been established in an ME patient.

 
Dr. Teielbaum does not mention what dosage of heparin he starts his patients on however if the patient doesn’t improve and the PTT blood test is still normal, he increases the dose to a maximum of 8000 units twice a day (a total of 16,000 units a day.) The heparin is administered by subcutaneous injection for the first six weeks. He switches them to nose spray heparin or sublingual heparin. Dr. Teitelbaum prophesizes that patients should start to feel better around the 10-14 day mark of treatment. He adds a 6-12 month course of either antibiotics such as doxycycline or antivirals depending on laboratory results. These are taken while the patient is still on heparin. Dr. Teitelbaum has his patients get a platelet count and PTT blood test every 3 days for the first 9 days after commencing heparin therapy and every week thereafter.

 
David Berg developed a protocol for treating ME patients for hypercoagulation and this can be found here. His system involves heparin being taken for 180 days. Transfer factor is taken from day 30-120 and antibiotics from day 30-90. If a patient has high Lp(a) or PAI-1 levels, he recommends bromelain be taken from day 1 to day 120.

 
Ken Lassesen has a model of ME that incorporates the hypercoagulation aspect. He has written about this here and here. He writes that the cause of the poor blood flow that is shown in many ME patients SPECT scan results may be due to hypercoagulation. He refers to a study in which the nootropic piracetam was taken concurrently with heparin. The accumulative effects of piracetam plus heparin were more beneficial to blood flow in the brain than the theoretical adding of piracetam and heparin. In other words, the piracetam and heparin complemented each other to combine to a greater efficacy.

 

Type of Heparin and Dosage

There exists two types of injectable heparin used by ME patients. The first is unfractionated heparin (UFH). Most of the above studies used UFH and Dr. Teitelbaum used this type on his patients. Due to the short half-life of UFH, it requires subcutaneous injection twice a day. The dosage used varies but generally starts at around 4000-5000 units twice a day in a 0.2ml-1ml solution. Berg has stated that patients less than 68kg (150lbs) should start at 4000 units twice a day. In contrast, those over 68kg (150lbs) should begin their dose at 5000 units twice a day. Some specialists increase this up to a maximum of 8000 units twice a day if bloodwork remains normal. It is imperative to monitor UFH usage via blood tests. As mentioned earlier, Dr. Teitelbaum has his patients get a platelet count and PTT blood test every 3 days for the first 9 days of UFH treatment and every week thereafter. Dr. Teitelbaum instructs patients to use an insulin syringe to inject the UFH while others recommend using a tuberculin syringe.

syringe photo

 
The second type of subcutaneous, injectable heparin is known as low molecular weight heparin (LMWH). This variant is more predictable than UFH and is generally considered to be safer. The studies on ME patients and heparin usage are largely void, primarily due to LMWH more recently being introduced to the United States. Berg recommends patients under 68kg (150lbs) taking 30mg of LMWH in the morning. He encourages those over 68kg (150lbs) to take 30mg of LMWH in the morning and 15mg at night. Patients taking LMWH may require an anti-factor Xa activity blood test if they have other medical conditions such as renal impairment.

 
Sublingual UFH is another alternative for hypercoagulation. Ken Lassesen has written that this form can be of equitable effectiveness. It requires 2 minutes under the tongue before being spit out. After 6 weeks of UFH subcutaneous injection treatment, Dr. Teitelbaum has patients switch to either sublingual heparin or heparin in the form of a nasal spray.

 

Side effects

Heparin-induced thrombocytopenia (HIT) is a potential side effect of heparin treatment. There is a lower likelihood of this occurring if the patient takes LMWH. Several studies have examined the risk of HIT with heparin usage and the chances of this occurring varies depending on the disease studied. The chance of LMWH causing HIT is fairly remote however there is a higher chance of UFH causing HIT. HIT causes a low platelet count and is most likely to occur 5-14 days after commencing heparin therapy. Vitamin D and calcium supplementation may reduce the chances of HIT occurring.

 
If Heparin is used for an extended period, a DEXA bone density scan should be performed. It is also imperative to have kidney and liver function tests prior to commencing heparin treatment. Those who have had a peptic ulcer should not take heparin. I should emphasise that heparin treatment is a riskier treatment than most other ME treatments. It is essential that a doctor monitors the progress of the treatment and is aware of the potential dangers.

 
 

Supplements

The ME-hypercoagulation link, in some cases, can theoretically be treated without heparin and with supplements. Dr. Teitelbaum has written that the anticoagulation supplements his patients have tried have failed to yield any positive results. Despite this, there exists numerous accounts online of ME patients benefiting from anticoagulant supplements. Whether this is due to the supplements effects on coagulation or because of some other mechanism is not known. The supplements should not be taken with heparin due to the risk of excessive bleeding.

 
Nattokinase is an enzyme that is derived from the fermented soybeans called Nattō. Multiple studies have found it to have various anticoagulant properties.  Numerous anecdotal reports litter the internet of non-ME patients replacing the prescription Warfarin with Nattokinase with degrees of success. Some ME patients have also found Nattokinase to be beneficial. The dosage should not exceed the maximum amount of 4000 fibrin units.

natto

 
Lumbrokinase is an enzyme that is sourced from a type of earthworm. Some patients take it to break down the fibrin implicated in hypercoagulation. Several ME patients have noted an improvement in symptoms after taking Lumbrokinase. Serrapeptase is a similar enzyme to Lumbrokinase.

 
 

Conclusion

The ME-Hypercoagulation connection was a very promising theory until a small study with Fukuda criteria patients found no coagulation problems in CFS patients. The subsequent coagulation research in ME was then discontinued. Regardless of the validity of the hypercoagulation theory in ME, heparin has been an effective treatment for many patients. Those in the Berg studies experienced dramatic improvements and Dr. Teitelbaum’s comment that half of those ME patients with the most severe and difficult to treat symptoms “get better” with heparin provides hope. The double-edged sword with heparin is the potential side effects. This shifts the dynamics of the risk-reward ratio. If an ME patient is severely ill, with cold hands and feet and a low sedimentation rate, it may be worth getting subsequent and specialised coagulation testing done and discussing with their physician about whether heparin treatment is warranted.

 

Gabapentin
 
Gabapentin is an anticonvulsant drug primarily used to treat epilepsy that may be helpful to some ME patients.
 

Gabapentin may benefit ME patients due to:

  • Reducing general pain
  • Thwarting neuropathic pain
  • Minimising fatigue
  • Relieving muscle cramps
  • Enhancing sleep quality
  • Stopping restless legs syndrome
  • Improving bladder function
  • Having potential neuroprotective properties
  • Decreasing multiple chemical sensitivity symptoms

 
It was originally thought that Gabapentin primarily worked due to its effects on the GABA neurotransmitter hence inducing calmness and sleep. It is now thought that Gabapentin’s mechanism of action is due to it being a calcium channel blocker. As a consequence, it may reduce the secretion of certain neurotransmitters that cause pain and stimulate the brain. Anecdotally, many ME patients have gained more energy as a consequence of taking Gabapentin. Unfortunately, in a reasonable portion of these cases, the effects seem to have gradually worn off.
 
 
ME specialists and doctors opinions’ on Gabapentin

Dr. Goldstein listed Gabepentin among his five most favoured treatments for those with ME. The others being; Nimodipine, oxytocin, intravenous lidocaine and baclofen. Dr. Goldstein believed that Gabapentin may regulate the neurotransmitter imbalance in the brains of ME and fibromyalgia patients. He recommended a low dose of 100mg-800mg, stating that effects should be noticed in the timeframe between 30 minutes and 8 hours. If tolerated, he would recommend the dose be slowly titrated upwards to a maximum dosage of 5000mg per day (e.g. 3 doses per day totalling 5000mg.) Dr. Goldstein found that a fairly high portion of his patients reported increased energy soon after their first dose with some patients also experiencing Gabapentin’s antidepressant effects.
 
Dr. Teitelbaum uses Gabapentin on some of his patients for sleep enhancement. He groups Gabapentin with Gabitril and Lyrica, stipulating that despite all three drugs being related, one of the three will often be effective and tolerated by the patient even if the other two are not. Dr. Teitelbaum generally starts patients on either Gabapentin or Gabitril and only prescribes them Lyrica if these drugs are not effective. He has found these three treatments to reduce pain levels, improve restless legs syndrome symptoms and improve the patient’s deep sleep. Dr. Teitelbaum warns that the aforementioned three drugs are not addictive but it is imperative that they be weaned off slowly especially if taken for a long period of time. He starts patients on 100-300mg per night of Gabapentin and gradually increments the dosage to 300-900mg three times per day.
 
Dr. Cheney categorises Gabapentin into the class of neuroprotective drugs that may help improve ME patients’ sensitivity to stimulation. He started those with ME on 300mg three times per day. He believes some doctors use doses of Gabapentin that are too high. In a 2009 talk, Dr. Cheney seemed to be less of an advocate of Gabapentin.
 
Dr. Enlander uses Gabapentin on some of this patients. He believes that Gabapentin stops the “abnormal impulses” ME and fibromyalgia patients’ brains experience. As a consequence, the brain’s muscle fibres experience a reduction in fatigue. Dr. Enlander uses doses up to a maximum of 2400mg per day
 
 
Studies

A 2007 study by Arnold et al. was performed on fibromyalgia patients who took Gabapentin at doses between 1200mg and 2400mg for a period of 12 weeks. Patients experienced significantly improved sleep as well as less pain and less fatigue compared to the placebo group. The most frequent side effects noted were sedation and dizziness.
 
A 2010 study by Usui et al. found a strong indicator concerning which fibromyalgia patients were likely to respond to Gabapentin. Those patients unlikely to respond to Gabapentin had hyperperfusion in certain parts of the brain as determined by a SPECT scan. Essentially, increased blood flow in the brain was strongly linked with a poor patient response to Gabapentin.
 
A 2015 study by North et al. examined the effects of an extended release version of Gabapentin on fibromyalgia patients over 15 weeks. Patients noted a reduction in pain, improved quality of life as well as an increase in quality and quantity of sleep. Many improvements were noted after only 4 weeks. Unlike the Arnold et al. study, this study had a smaller sample size and no control group.
 
 
Side Effects
Gabapentin is generally considered to be fairly safe and well tolerated. Despite this, some ME patients have anecdotally experienced side effects. A Cochrane Review by Moore et al. in 2011 based on data from chronic neuropathic pain patients concluded that Gabapentin was mostly tolerable however adverse events were frequent. 12% of patients withdrew from studies due to side effects. The most common being; dizziness, somnolence, peripheral oedema and gait disturbance. The Cochrane Review stipulated that serious adverse events were no more common in the Gabapentin group than the placebo group.
 
It should be emphasized that there is fairly universal agreement that Gabapentin should be started off at a lower dose and gradually increased if tolerated. Also stopping treatment suddenly may be harmful and patients are commonly advised to reduce the dosage slowly. Some doctors recommend Gabapentin only before bedtime with the motive of improving sleep whilst doctors with other objectives recommend that it be taken three times a day.
 
 
My Experience with Gabapentin

I began taking Gabapentin late in 2015, hopeful that I would reap several of its benefits. My poor sleep was the primary reason I chose to take Gabapentin. Related to this, I was interested to see whether my restless legs syndrome symptoms would ease. Gabapentin sometimes reduces patients’ overstimulation although I was slightly dubious as to whether this key symptom of mine would recede. I was also hopeful that I would join the anecdotal reports of ME patients who have gained more energy as a result of taking this drug.
 
I began taking 100mg of Gabapentin before bed and gradually increased this dosage as I failed to notice any side effects. I topped out my dosage at the relatively small maximum of 300mg per night. At this quantity I would sleep fairly deeply throughout the night but wake up still feeling unrefreshed. Curiously, my restless legs syndrome was unaffected by the Gabapentin. I was reluctant to increase the dosage any higher as I felt mildly ‘zonked’ throughout the days. Gabapentin’s effect of knocking me out during the night was a secondary reason to not increase the dosage further.
 
After 300mg per night of Gabapentin for a period of a month, its ability to keep me asleep during the night started to diminish. I then tapered off the drug with relative ease as its only real positive effect of keeping me asleep for most of the night had begun to wane. Several months later, I tried Gabapentin at an identical dosage and had a parallel experience. After one month, its sleep producing effects had diminished.
 
Overall, I didn’t notice any of the more common side effects of Gabapentin and its efficacy towards improving my general ME was negligible. Based on the Usui et al. study mentioned earlier, it was more likely that I would be in the responder group. My SPECT scan showed hypoperfusion (reduced bloodflow) in the brain- the opposite to the fibromyalgia patients who failed to respond to Gabapentin.
 
 
Conclusion

Gabapentin is a fairly common drug in the ME realm, although more regularly prescribed for fibromyalgia. It has the ability to target multiple, seemingly unrelated ME symptoms and thus patients take it for different reasons. My sleep length improved as a consequence of this drug but my sleep quality failed to be enhanced. Ultimately this single positive effect wore off causing me to stop taking the Gabapentin.

 

2016

 

Over the past 12 months, I have tried many treatments that I haven’t written about in previous blog entries. This article will briefly touch on these treatments. Following this, I will detail how my health has played out throughout 2015.

 

2015 was a year that I trialled many ME treatments. These primary treatments were articulated in more detail in blog entries during the year. The following is a list of treatments I trialled at various stages of 2015 that I haven’t written about previously.

 

Astaxanthin

The main motive for me taking astaxanthin was its powerful anti-inflammatory effects. I have been experiencing joint pain during 2015 and I thought of astaxanthin as a safer long-term alternative to NSAIDs. One health questionnaire of 247 sufferers of back pain and rheumatoid arthritis or osteoarthritis found over 80% improving after taking astaxanthin. This supplement also has immunomodulatory effects and many other potential benefits.

 

astaxanthin

 

I started taking 12mg of astaxanthin in November 2015 and plan to reduce the dose to 4mg within the coming weeks. The joint pain in my fingers, wrists and knees has all improved since I started taking the astaxanthin although I’m unsure if this is coincidental or not.

 

Benfotiamine and Allithiamine

During 2013, I took high dose thiamine (vitamin B1) and didn’t notice any effects. I wrote about this treatment in more detail here. In 2015, I trialled allithiamine and benfotiamine which are essentially different versions of thiamine. These two versions of thiamine may be better absorbed by the body than standard thiamine. Anecdotally, some patients have reported one of these versions to benefit them whilst standard high dose thiamine has not. I felt a bit sicker while taking 100mg of Allithiamine in combination with a mutli B supplement and I hence stopped this treatment after several days. I took 500mg of benfotiamine for about a month with no effects noted.

 

Elimination Diet

I have seldom written about diet on my blog for two primary reasons. The first is that food doesn’t seem to affect any of my symptoms. Secondly, I have tried omitting various types of food such as gluten, dairy products etc, at various times throughout my illness but have failed to notice any effects of these food omissions.

 

Fast forward to mid 2015 and I received an email from a fellow Australian ME patient who had similar symptoms to me and benefited remarkably from trying the elimination diet. I am grateful for their thoughts and must thank them for this. The elimination diet that I tried was devised by the Royal Prince Alfred Hospital with the premise of stopping food intolerances. Salicylates, amines, glutamate, gluten and food additives amongst other substances are avoided in the diet. These omissions ultimately don’t leave much to eat and following the strictest version of the diet was challenging to start with before I gradually adapted. I had a night of refreshing sleep while on the diet which is a once every two year rarity for me but other than that, I didn’t notice any other changes. I am planning to try the diet again in mid 2016 for a longer period of time.

 

There are various types of elimination diets and Dr. Cheney has written fondly of an elimination diet. He mentions, “Elimination diets, and improving digestion and gut epithelial function can pay huge dividends in this patient population.” Dr Cheney has found over half of his CFS patients studied to have food sensitivities. He believes an elimination diet is the best way to determine a patient’s food intolerances.

 

IP-6

The primary motive for me taking IP-6 was its ability to increase Natural Killer (NK) cell activity which is often impaired in ME patients. Dr. Edward Conley reports that he has used IP-6 to improve NK cell function in “dozens of cases” of CFIDS.  He elaborates on one case in which NK cell function improved 200% and the patient went from being unable to work to managing a 32-40 hour job.

 

I took IP-6 for a month during 2016 and didn’t notice any effects. The dose I was taking was 3.2 grams twice a day on an empty stomach. I didn’t have the ability to perform a natural killer cell function test to monitor its NK cell effects on me.

 

Naphazoline HCL

Dr Goldstein wrote prolifically about ME/CFS and his treatments always interest me as they seem divergent from many other ME specialists treatments, yet steeped in theoretical/practical evidence. He compiled a list of treatments he trialled often sequentially when a new ME/CFS patient visited him. This list is well worth reading and can be found here. Also listed are his musing on an assortment of other treatments. Naphazoline HCL 0.1% eye drops were the first treatment he tried on patients whom stepped into his office. If the patient benefited from this treatment, they would feel better immediately. Dr. Goldstein theorised that the trigeminal nerve would change the patient’s brain function as a result of these eye drops. It has been claimed that 20% of patients benefited from this treatment and on those patients whom they worked, the drops worked remarkably well.

 

It is imperative that the drops used are 0.1% not 0.01% drops. In some countries, the 0.1% drops are available over the counter. I tried the Naphazoline eye drops on two occasions during 2015 but didn’t notice any effects.

 

Ranitidine

Dr. Goldstein originally tried Ranitidine on infectious mononucleosis patients in the 1980s and due to the success he experienced began using it on ME patients. Ranitidine (Zantac) along with Cimetidine (Tagamet) are H2 receptor antagonists. Dr. Goldstein recommends the dosing structure of 150mg twice a day for one or two days. When patients do respond to one of these H2 receptor antagonists, Dr. Goldstein writes that the recovery is remarkable. He continues on to state that these drugs may cause overstimulation in ME/CFS patients.

 

Ranitidine

 

An anecdotal report of a patient significantly improving after taking Ranitidine can be found here. This patient did however experience severe headaches as a consequence of the treatment which is a possible side effect. Ranitidine is available over the counter in many countries, if not, Cimetidine is normally available over the counter instead. I took 150mg of Ranitidine twice a day for three days but didn’t notice any effects.

 

My Health in 2015

 

Dust Allergy

The major improvement in my health last year was the reduction in nasal mucus discharge or mucus coughed up. This was my first ME symptom to emerge and for many years I was using two boxes of tissues a day. A few years ago, I had an allergy test and was put on dust allergy drops plus the nasal spray Avamys. This improved my tissue usage to around one box a day. In 2015, my sister moved out of the house and I moved into her room with only the bare essentials cluttering the room. This further reduced my dust allergy and I am currently down to using one box of tissues per week- a far cry from the 14 boxes a week I was using for 6 years!

 

Joint Pain

During mid 2015, my big toe joints began to experience pain, make cracking sounds and generally feel uncomfortable. My ankle joints also felt a similar sensation. In October, my finger, wrist, knee and neck joints also became painful. I began taking Astaxanthin, which I wrote about at the top of this blog entry. My newly developed finger, wrist, knee and neck pain improved however my toe and ankle pain persisted. I was referred to a rheumatologist who thought I may have osteoarthritis or rheumatoid arthritis however was unsure. He prescribed me painkillers and thought he would have a more clear idea of what’s going on after my symptoms had more time to progress. I see the rheumatologist again in March. Joint pain is often included on criteria lists for ME/CFS so it may simply be secondary to my illness.

 

joint pain

 

I wrote a blog entry many years ago about the strange, permanent and dark spots that emerged on my joints when my illness initiated. This blog entry, found here, shows photos of the spots on my toes and fingers. I have over the past 12 months noticed a darkening of the big toe spots as well as the development of spots on the joint located at the base of my big toe. I’m unsure if this is related to the joint pain I’ve been experiencing. Also, further spots have appeared on my index and middle finger joints.

 

Sleep

2015 was the year that I struggled with sleep the most. Earlier in my illness, I would sleep right through the night and need an alarm clock to stop me sleeping for extended hours. This situation has inverted over the past handful of years and I now struggle to fall asleep. Also, when I wake during the night I am now often unable to get back to sleep. My Restless Legs Syndrome also prohibits my sleep.

 

Back Pain

The final significant health change that occurred to me in 2015 was my back pain. In late 2014 I suffered a thoracic back sprain by simply standing up from a sitting position. I have since experienced some quite irksome back problems. During 2015, I saw the physio every two weeks for the entirety of the year and took many painkillers for my back. I have been doing some very basic and modified stretches for my back too. I aggravated my back during August, September and October of 2015 by simply standing up from a sitting position and couldn’t really stand or walk properly on each of these occasions for a week. The rheumatologist whom I saw for my joint pain suspects that my back pain is related.

 

Conclusion

Overall, my ME health remained rather static in 2015. The peripheral symptoms I have written about above were nothing more than a blip on the radar when compared to how the crux of the ME has affected me. I am thankful that the mucus production symptom is being thwarted and I hope this continues into 2016. At present, the joint pain isn’t significant and I plan on continuing the Astaxanthin which may be easing it. My sleep and sleep treatments are something that I wrote about more extensively in my last blog entry and I have a sense of optimism that 2015 was an outlier as far as my insomnia was concerned. Regarding my back pain, I have found through trial and error that sleeping on the right type of mattress significantly improves this symptom. By finding the optimal mattress in 2016, this may not only ease the back pain but perhaps improve my sleep too. Improving my ME is a more difficult matter, although I have some more ideas up my sleeve for 2016!

sleep
 
“Sleep is that golden chain that ties health and our bodies together.” –Thomas Dekker
 
M.E. patients are often nocturnal creatures- not by choice but as a consequence of their illness. It is a bitter irony that many of us feel the desperate need for sleep during the daylight hours but as soon as nightfall sets in, so does the insomnia or unrefreshing sleep. This blog entry will examine the myriads of potential sleep treatments that the ME/CFS experts of the world prefer. Following this, I will detail my experiences over the years with both sleep enhancing supplements and prescription drugs.
 
Sleep Treatments the ME/CFS Specialists Recommend

It is imperative that I mention that some of these specialists’ recommended treatments are sleep initiators while others are sleep prolongers.
 
Dr. Cheney

Dr Cheney is an advocate of Klonopin and likes using Doxepin Elixir drops in synchronicity with the Klonopin. He states that B12 in the form of hydroxocobalamin injections may help sleep, it taken at night. Magnesium also plays a pivotal part in Dr. Cheney’s sleep repertoire and he prefers it in the form of magnesium glycinate.
 
Dr. Teitelbaum

Dr. Teitelbaum’s approach towards patients’ sleep is multi-faceted. He emphasises that quality sleep is utterly fundamental so much so that his ‘SHINE’ protocol starts with ‘S’ for sleep. Dr. Teitelbaum thinks patients can get the greatest benefit from sleep aids by taking small amounts of as many different sleep aids as required to a maximum of “5 or 6.” He sells his own OTC sleep formula that contains many of the ingredients that he believes helps CFS patients sleep. The supplements Dr. Teitelbaum is an advocate of include; Suntheanine, Wild Lettuce, Jamaican Dogwood, Hops, Passionflower and Valerian. The medications he writes fondly of for sleep, in the order that he generally prescribes them for CFS patients are; Ambien, Trazodone, Klonopin, Gabapentin, Doxylamine (OTC), Carisoprodol, Doxepin, Cyclobenzaprine, Tizanidine and Zaleplon. He describes some patients needing to try different medications and other patients requiring a different order of trial to the above sequence.
 
Dr. Klimas

Dr. Klimas states that sleep improvement isn’t as easy as taking a magic pill. She believes that patients who wake up exhausted require a sleep study that takes place in a specialised sleep lab. The sleep study will determine if the sleep problems are caused by a characterised sleep disorder such as sleep apnea. The study will also document sleep patterns including the need for stage 3 and 4 sleep. Dr. Klimas believes treatment can then proceed following the results of the sleep study. When Dr. Klimas does prescribe sleep drugs, she avoids the likes of Ambien and Restoril believing that they don’t promote quality sleep, instead just instigating sleep. Dr. Klimas is mainly an advocate of Elavil and Doxepin. She also likes Flexeril and Klonopin.
 
Dr. Lapp

Dr. Lapp shares a similar penchant to Dr. Cheney for Klonopin used in tandem with Doxepin, both at a low dosage. He also emphasises that patients needn’t start with prescription drugs for sleep. He thinks milder sleep problems may be quashed by the use of; Valerian, Excedrin PM, Tylenol PM and Melatonin. Trazodone, hypnotic drugs and SSRIs are all sleep treatment possibilities according to Dr. Lapp.
 
Dr. Myhill

Dr. Myhill writes of numerous, non-tablet techniques to maximise the chances of a first-class sleep. She also uses a mixture of supplements and prescription drugs to improve her patients’ sleep. She is an advocate of; Melatonin, Valerian and Nytol. If these treatments prove to be ineffective, she tries prescription drugs including; Elavil, Surmontil, Sonata and Diazapam.
 
Dr. Enlander

Dr. Enlander emphasises the nuanced world of sleep problems and warns of caution when treating sleep apnea sufferers with sleep drugs. He often starts with a drug that is in his words “the least provocative” in Diphenhydramine. If this is ineffective, he commonly tries patients on Trazodone. Other sleep treatments that Dr. Enlander utilises include; Ambien, Sonata, Klonopin, Zanaflex or Flexeril.
 
 sleep tablets
 
Sleep Aids

Over the past few months I have taken 3 different sleep aids with the goal of improving my sleep.
 
GABA

GABA’s primary action in the brain is to tame the over firing of neurotransmitters. A potential problem with GABA supplementation for sleep is its inability to cross the blood-brain barrier. Due to this pitfall, GABA supplements may work through an alternate mechanism. This is through the GABA supplement’s ability to calm the body and hence reduce insomnia. A sublingual version of GABA may be more effective than the capsule form.
 
5-HTP

5-HTP is a version of the amino acid tryptophan and was found in two studies to improve Fibromyalgia patient’s symptoms. This study by Puttini et al. involved 50 Fibromyalgia patients taking 5-HTP for 90 days. Improvements were seen in the areas of; fatigue, sleep quality, pain, anxiety and the number of tender points. A ‘good’ or ‘fair’ improvement was seen in about 50% of patients. 30% of patients reported side effects but only one patient dropped out of the study for this reason.
 
This second study by Caruso et al. was double blinded and placebo controlled. 25 Fibromyalgia patients were given the placebo and the other 25 Fibromyalgia patients took the 5-HTP. The group given the 5-HTP were provided with 100mg three times a day for 30 days. Similarly to the previous study, improvements were seen in tender points, pain, sleep, anxiety and morning stiffness in the group taking 5-HTP. Although the placebo group also improved in sleep and pain measurements. 5-HTP is used by the body to make serotonin which may improve sleep quality. Serotonin syndrome is a risk if other treatments to increase serotonin are taken with 5-HTP such as SSRIs.
 
Suntheanine (L-theanine)

L-theanine is an amino acid and may improve sleep due to playing a role in increasing brain levels of GABA, serotonin and dopamine. L-theanine is responsible for the taste and calming effect of green tea. Dr. Teitelbaum is an advocate of L-theanine and recommends 50mg to 200mg before bedtime to improve sleep. He also writes that it can be taken several times during the day to improve anxiety. This study found 400mg of L-theanine to improve the sleep of boys with ADHD.
 
valerian tablets
 
My Experience with these Sleep Aids

Over the past few months, I trialled each of these sleep aids.

I took 750mg of GABA for a period of a week and didn’t notice any effect on my sleep.

I took 200mg of 5-HTP before bed for a week and similarly failed to notice any effects.

I took a dosage of 300mg of L-theanine before sleep and 150mg upon waking during the night and this improved my sleep marginally. I have been desperate for any improvement in my sleep and hence I continue to take L-theanine every night although only 150mg before bed and 150mg when I wake during the night.
 
My Long Term Sleep Treatments

Sleep improvement is widely known as being a lynchpin in countless ME protocols. Over the past 10 years, I have woken up every morning feeling more sleepy and groggy than when I went to sleep the night before. There have been several exception to this, which I vividly recall- mornings when I have woken and felt well rested. These instances have occurred after I took; a Myers’ cocktailTTA and on the last occasion Moringa Oleifera. 
 
The quality sleep these treatments provided me was only transient-lasting one or two nights. It is a curiosity that each of these treatments lacks a direct mechanism of action on sleep and I took them for ulterior purposes. I have also experienced insomnia for the past 4 years of my illness and continue to battle this.
 
There have been many treatments that I have taken to try and improve my sleep over the years. I have trialled:

  • Elavil (in a low dose form) on several occasions. It perpetually induced next-morning drowsiness.
  • Diazepam which I have rarely used and 1.25mg is sufficient to induce sleep for me. I only take this if necessary and have only consumed it once in the past few months.
  • Low dose naltrexone for the past 5 years and I continue to take this. Its only effect on me seems to be that it has slightly improved my sleep length.
  • Melatonin, long term and I only recently stopped this as it wasn’t having as much of an effect on me. It does however have multiple potential mechanisms of actions on ME symptoms and these studies emphasise its potential benefits.
  • Valerian tablets, which are probably the most effective sleep aid for me and I continue to take them before bed and when I wake up during the night.

 
Currently my nightly sleep tablet regiment involves; low dose naltrexone, valerian and L-theanine. I also use nasal strips every night for my sleep.
 
“I want to go to sleep in my time machine and wake up eight hours in the future.” –Jarod Kintz

Dr. Brewer’s Protocol

Dr. Brewer has developed a protocol for treating mycotoxin involvement in ME/CFS. This protocol is dynamic and over the past couple of years has been modified based on patient response. The crux of his protocol involves patients taking either nasal Amphotericin B or a compounded Nystatin that is atomised before being absorbed nasally by the patient. In tandem with one of the aforementioned treatments, patients must take chelating PX which comprises nasal EDTA with a surfactant.
 
Specialised testing has ascertained that 93% (104/112) of CFS patients studied tested positive to at least one of three mycotoxin. In contrast 0% (0/55) of the healthy controls tested positive. This study can be found here.
 
Brewer et al. have written this paper probing the relationship between chronic illness and mold/mycotoxins. The paper theorises that the sinuses are the main reservoir of the mycotoxin hence most of the treatments are focused on this portion of the body. The paper continues on to state that indoor, water damaged environments are hot-spots for mycotoxin production. Detailed mechanism of action and case studies are also provided to support the argument of Brewer et al.
 
The success of Dr. Brewer’s protocol on his patients has also been impressive. A pilot study by him found that 56 of the 151 patients treated could not tolerate the Amphotericin B. 88 out of the remaining 94 patients noticed improvements- That equates in percentage terms to a staggering 93.6% of the ME/CFS patients having a reduction in their symptoms. Approximately a third of these 88 patients achieved remission. Since this study, Dr. Brewer has found the atomised Nystatin to have a better safety profile than the Amphotericin B.
 
nystatin
 
The Patient Advocate has written extensively on Dr. Brewer’s protocol here, here and here. The Phoenix Rising forums also contains an extensive discussion of this protocol here. Within it are many anecdotal reports and experiences of patients whom have attempted this protocol.
 
ASL/TAG were originally the compounding pharmacies providing the Brewer’s protocol products (after a prescription is presented or mailed) however they recently went out of business. Woodland Hills Pharmacy in California and Albers Pharmacy in Missouri are now compounding the Brewer protocol medications.
 
 
My Experience With Dr. Brewer’s Protocol
 
I enquired with the American pharmacies that provide the substances required to complete Dr. Brewer’s protocol however they informed me that they don’t ship to Australia. I therefore decided to trial a modified Dr. Brewer protocol. This consisted of:

  • A nebuliser used rather than an atomiser.
  • Capsule Nystatin opened and some of the powder mixed with distilled water and later nebulised and inhaled nasally.
  • A BEG nasal spray used that contained EDTA however no surfactant.
  • Nebulised Argyntyn 23, nasally inhaled.

I began different portions of this treatment over a staggered period of time, beginning in March 2015.
 
nebuliser
 
The nebulised Argyntyn 23 affected my sleep and hence I only trialled this for a few days. I again started this a few weeks later but similarly, my sleep quality diminished. I tolerated the nebulised Nystatin and continued this treatment for 3 months. I persisted with the BEG nasal spray despite it causing mild yet continuous nose bleeds. Eventually, I determined that the BEG nasal spray was a double-edged sword- My sleep quality deteriorated whilst on it. Every morning I would wake at 4am and struggle to get back to sleep. Curiously, my restless legs syndrome stopped while I took the BEG nasal spray. After 2 months of the BEG nasal spray, I decided to cease the treatment and within days my sleep quality improved and RLS returned.
 
Overall, I had a very haphazard approach to the Dr. Brewer protocol, largely due to not being able to gain the identical ingredients he used on his patients. His protocol is also intended for long term use and my 2 months of simultaneously taking BEG nasal spray and nebulised Nystatin wasn’t long enough to determine its true effectiveness on me. Over the coming days I will post another blog entry detailing the other ME treatments I have trialled recently.