Archive for the 'Suppliments' Category

Supplements for Nerve Pain

Here’s some of the findings from my research into supplements which may help with nerve pain and small fiber neuropathy. Some of the results are based on diabetic neuropathic pain but since my nerve damage pain (from surgery) and my allodynia have responded to one of those already (Alpha Lipoic Acid) it seems worth exploring others. I’m also experiencing anxiety as a new symptom so have paid particular note to that and things like brain chemistry – this is not extensive research and doesn’t cover every aspect.

Some of the information given such as dosage is conflicting. I’m just recording what I’ve found through research and there isn’t always a clear answer. Sorry I didn’t have the energy to link to all the sources for the info I’ve noted.

Updated 24th March 2018

For Nerve Pain:

Alpha Lipoic Acid

Inositol

Acetyl-l-carnitine

L-Theanine

D-L-Phenylaninine

Palmitoylethanolamide / PEA

L-Tryptophan

Resveratrol

Passion Flower / Passiflora

NAC or N-acetylcysteine

Turmeric / Curcumin

Quercetin

Also important for nerve repair and function:

Magnesium

Omega 3

GLA / Gamma-linolenic acid

Vitamin D

Vitamin B12

Thiamine B1 or Benfotiamine

Vitamin B6

CoQ10 (CoEnzyme Q10)

Alpha Lipoic Acid

Good for:

Nerve pain, allodynia, weight loss, diabetes, anxiety, dementia, healing wounds, migraines

Action:

Antioxidant that kills free radicals.

Alpha-Lipoic Acid has been shown to boost acetylcholine (ACh).

May increase nerve regeneration rates secondary to nervous system injury.
The combined robust antioxidant, neuroprotective and especially metabolic actions facilitate strong effect on cognition, memory and delaying mental fatigue.

Improves the function and conduction of neurons in diabetes. Improves the flow of blood to the nerves allowing them to use energy effectively.
Potent antioxidants for biological reactions taking place in the mitochondria of our cells.

Regulating blood sugar and insulin. Improves lipid profiles (cholesterol, triglycerides, and high/low density lipoproteins) and reduces plaque formation in arteries.

Side effects/Risks:

Might get a rash. In humans, doses of 1800mg/day and 2400mg/day failed to have any side effects over a 6-7 month period.
Nausea (deemed minor and related to appetite suppression) and an itching sensation of the skin associated with higher (1,200-1,800mg) doses.
Toxicity at 3-5g of ALA a day inducing mineral deficiencies.
People at risk for thiamine deficiency should take a thiamine supplement (particularly heavy drinkers).
People with diabetes should be careful to check their blood sugar levels because alpha-lipoic acid might lower blood sugar.

Contraindicated with chemotherapy.
May interfere with thyroid medications (can affect the conversion of T4 into T3).

Increased risk of developing (very rare) IAS (insulin autoimmune syndrome) resulting in low blood sugar (hypoglycemia) in individuals with a specific genetic variation – hypoglycemia resolved once the alpha lipoic acid was stopped.

Symptoms of high acetylcholine – ACh can act like a stimulant by releasing norepinephrine (NE) and dopamine (DA).  However, those brain chemicals are used up (depleted) in the process; and a deficiency can occur. Too much ACh relative to other brain chemicals such as serotonin (SE), NE, and DA has an adverse effect on brain function. This is because in larger quantities ACh acts like an inhibitory neurotransmitter, causing increased nervous system inhibition (depression). Important to remember is that, in general, as ACh levels go up in the brain, the levels of the other brain transmitters go down. In terms of mood, the combination of higher ACh and NE, together with lower SE, produces anxiety, emotional lability, irritability, anger, aggressiveness, negative rumination, impatience, and impulsiveness (among other things).

Dosage:

Between 100mg to 600mg per day for its antioxidant benefits.
Neuropathic pain 600mg or 1200 mg daily.
For diabetes or bodybuilding may benefit from higher doses up to 1200mg. High doses should be split and taken throughout the day.

One trial demonstrated at doses of 600mg 3 times daily for a 3 week period led to very significant improvements in neuropathic symptoms. Another trial found that a dose of just 600 mg a day taken for 4 years improved symptoms and slowed down the progression of neuropathy.

Inositol

Good for:

Nerve pain, anxiety, panic, cholesterol, weight loss, PCOS, OCD

Action:

Works in the nerves involved with cellular signaling. Mediates 5-HT (serotonin) activation within nerve cells.

Serotonin, Dopamine, Norepinephrine, and Acetylcholine are primary messengers, transmit messages from one neuron to receptors on another neuron but rely on secondary messengers to complete the signal and relay information within the cells. Inositol is one of the key secondary messengers needed for successful signaling. Inositol, Dopamine, and Serotonin work together to maintain consistent hormonal balances within the brain.

Inositol helps boost serotonin and dopamine receptor density. Improving the effectiveness of serotonin, GABA, glutamate and dopamine neurotransmitters in your brain.

It increases Cholinergic as well as GABAergic activity.

May enhance natural energy, especially when taken just before any activity that will subject the body and mind to stress.

Some of its effects include healthy hair and controlling estrogen levels

Side Effects/Risks:

Water soluble so excess expelled. Minimal side effects. No withdrawal.
Possibly agitation, apathy, brain fog, decreased self-awareness, diarrhea, libido reduction, and sweating.
Can cause nausea, tiredness, headache, and dizziness.
Very safe supplement to ingest, and all side-effects associated with myo-inositol are merely mild gastrointestinal distress from high doses.

Most common side effects are loose stools at the beginning of supplementation, which resolve as your body gets used to inositol. Other reported side effects are nausea, headaches, fatigue and dizziness. Some people also notice increased sweating that usually resolves with time.

Dosage:

500-1,000 mg a day for nerve pain

In the range of 200-4,000mg once daily before breakfast; the higher dose seems to be used more often and seems more effective. Neurological usage of inositol tends to require higher doses, and while antidepressant effects have been noted as low as 6g at times the standard dose is between 14-18g daily

PCOS 4 g per day (divided into 2 grams twice daily)

Anxiety/Panic between 12 grams and 18 grams per day (build slowly)
Depression 12 grams daily. This dose has been shown to improve the symptoms of depression after 4 weeks.

Acetyl-l-carnitine

Good for:

Nerve pain, nerve damage, depression, weight loss, blood sugar, muscle disorder, heart conditions, cholesterol, hyperthyroidism

Action:

An amino acid that improves diabetic neuropathy. Supplementing with carnitine might help increase insulin resistance, allow the cells to utilize glucose effectively and boost nerve regeneration.

Alleviates symptoms, particularly pain, and improves nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy.
It works to regenerate myelin sheathing of nerves, produce new nerve fibers, and improve the function of important nerve connections to organs.

Glutamate is a neurotransmitter that is significantly involved in pain transmission including neuropathic pain.  Glutamate receptors are proteins that bind to glutamate for supporting its function. These receptors when activated relieve neuropathic and inflammatory pain. Acetyl-l- carnitine activates with these glutamate receptors to relieve neuropathic pain.

Acetyl L-carnitine acts as an antioxidant. Able to cross the blood-brain barrier.
Supports acetylcholine and dopamine levels. Increases norepinephrine in the hippocampus and serotonin in the cortex. Supporting norepinephrine and serotonin in the brain can help with depressive symptoms as well as cognitive deficits.May reduce amounts of GABA and increase myo-inositol . May alter monoamine neurotransmitter levels.

Side Effects / Risks:

Diarrhea, nausea, stomach pain, vomiting. Headaches. Over-stimulation. Trouble sleeping. Raise blood pressure. Lower blood sugar and higher triglycerides (in people with diabetes). Psychosis in people with bipolar disorder.

May increase the risk of seizures in those with epilepsy.

Warnings for people with hypothyroidismperipheral vascular disease, high blood pressure, liver cirrhosis, alcoholism, diabetes, kidney failure, digestive problems, risk factors for mental illness, hepatitis C (fatigue may worsen).

Warning with blood-thinning drugs, beta-blockers, calcium-channel blockers. May interact with drugs or supplements that lower blood sugar. It may affect how your body breaks down certain drugs and supplements.

Dosage:

500 mg or 1,000 mg three times daily

As per the research studies, the beneficial dose of acetyl-L-carnitine is 1000-2000mg daily. Start with a small dose (500mg daily) and scale up gradually; a dose of 1000mg -1500mg per day should help.

L-Theanine

Good for:

Nerve Pain, Anxiety, Sleep, lowering blood pressure, cholesterol

Action:

Naturally occurring amino acids. L-Theanine increases brain serotonin, dopamine, and GABA levels.

A mild stimulant for glutamate receptors and keeps glutamate from full activation, which acts to tame excitotoxicity.

Increases alpha brain wave activity, especially for those people who suffered from prior anxiety. Brain waves are actually smoothed out—but not flattened out.

Prevents the abrupt rise in blood pressure that some people experience under stress.

Unlike prescription anti-anxiety drugs, L-theanine relieves stress without causing drowsiness or impairing motor behavior. In fact, studies show it improves alertness and attention.

Theanine may boost the activity of T cells that protect against infection and tumors.

Side Effects/Risks:

More likely to occur at higher doses. Headaches. Dizziness. Reduction of appetite. Lowering blood pressure. Slight gastrointestinal discomfort.  Nausea.

Very high doses of L-Theanine may result in a fairly strong sedative effect.

As it  it indirectly interacts with GABA receptors you may want to avoid using a Theanine GABA combination.

While L-theanine also has the potential to increase serotonin levels in the brain, it has occasionally been shown to decrease them as well.

Contraindicated in chemotherapy.

Dosage:

For neuropathy 200 mg three times a day, taken 30 minutes before meals. This can be increased to 400 mg three times a day if needed.
For anxiety 200mg two to three times daily

D-L-Phenylaninine

Good for:

Chronic Pain, Depression, Vitiligo, (ADHD), Parkinson’s disease

Action:

DL-Phenylalanine is a combination of D-Phenylalanine and L-Phenylalanine, two different forms of Phenylalanine. D-Phenylalanine is a laboratory-made substance that has been studied for potential pain-relief effects. It has great effects and is especially useful in supporting your natural pain-relief system. L-Phenylalanine is an essential amino acid and is required for your body to function correctly. L-Phenylalanine deficiency is linked to lowered mood and feelings of stress. Higher doses of L-Phenylalanine may have the potential to improve your mood and focus.

DL-phenylalanine appears to improve chronic pain symptoms through up-regulation of your endogenous analgesia system. Your EAS is a neural system that suppresses nerve transmissions in your pain pathways. Thus, the EAS is responsible for reducing pain sensations.

Inhibits the breakdown of endorphins. Endorphins are pain-relieving compounds that originate within your body.

Phenylalanine is needed to produce certain neurotransmitters, including dopamine and serotonin.

Research has indicated that migraine, joint pains, neuralgia and even postoperative pain respond to DLPA, and it has been reported to reduce inflammation. DLPA does not deaden normal sensation even when taken for a lengthy period.

Side Effects/Risks:

Very well tolerated and for the most part side effects free. DL-phenylalanine side effects include nausea, headaches and heartburn. Both DLPA and l-phenylalanine can cause migraines or slightly increase blood pressure.

Some common side effects include anxiety, jitteriness, or hyperactivity.

Rare side effects can include itching, mouth tingling, or swelling of the hands of the feet (these are rare).

Can worsen tardive dyskinesia — involuntary movements — if you are currently taking anti-psychotic medication. You should not take DL-phenylalanine if you are on anti-psychotic medication. DL-phenylalanine may interact with a class of antidepressants known as monoamine oxidase inhibitors.

Contraindicated for Levodopa used for Parkinson’s disease, MAOIs, medications for mental conditions might cause jerky muscle movements.

Dosage:

The most common range is 750mg to 3,000 mg daily. Studies have shown highest efficacy for depression utilized doses of 50mg to 200 mg per day.

The dose of DLPA needed may vary from person to person, and is generally determined by starting with perhaps 1,000 mg daily for two weeks and then gradually increasing to a level that provides relief. If 3,000 mg per day doesn’t work after a month’s time, it probably will not work at all. The good news is that persons reporting pain relief will generally be able to LOWER their dose gradually and will often be able to maintain pain-free status with less DLPA than before.

Palmitoyalethanolamide aka PEA

(Not to be confused with Phenylethylamine which is also known as PEA)

Good for:

Chronic Pain, Nerve Pain, Joint Pain, Migraine, Fibromyalgia, Chronic Regional Pain Syndrome (CRPS), Small Fiber Neuropathy,

Action:

Naturally occurs in the body. It stops pain and inflammation, protects the heart, and improves brain function. Pain suppressant and anti-inflammatory. Clinical trials have found that the compound’s action performs numerous biological functions related to chronic pain.

It has been found to have anti-inflammatory, anti-nociceptive, neuroprotective, and anticonvulsant properties.

Binds to a receptor responsible for regulating the gene networks connected to the control of pain.

While PEA is not technically an endocannabinoid, it often gets grouped into the family; particularly with anandamide, because PEA operates via similar metabolic and synthetic pathways.

PEA is the key to suppressing overactive mast cells. Mast cells release inflammatory histamine and cytokines into the body.

The action mechanism of PEA is strengthened by complementary action mechanisms of the selected B vitamins.

Studies with mice using PEA found less injury to heart tissue, decreased cell death, and lower levels of cytokines.

Side Effects/Risks:

To date, no drug interactions have been reported in the literature, nor any clinical relevant or dose-limiting side effect.

Rarely gastrointestinal upset and diarrhea with the sublingual preparation, probably due to the sorbitol in it. No side effects with PeaPure.

No adverse reactions with other commonly used pain relievers such as tramadol, pregabalin, gabapentin, amitriptyline, and duloxetine.

Dosage:

6 weeks with 600 mg tablets twice daily. Once 50% reductions in pain are seen reduces the dose to 300 mg twice daily.

or: CRPS: Start 3 x 400mg either over 3 doses or split into 2 in morning and 1 in evening. After some weeks you could increase to 6 x 400mg

The analgesic effects are build up day by day; most people notice the effects within 1 week, but sometimes 6-8 weeks is required, especially for chronic pain syndromes.

PeaPure:  It has been proved that taking 1 capsule of 400 mg 3 times a day during the first 2 months is a good starting dosage. PeaPure users usually notice an improvement during the first few weeks.  Only after two months, the effectiveness of PeaPure can be properly evaluated. From that moment on it will become clear whether it is worthwhile to continue to take PeaPure for a prolonged period of time. If, after 2 months, the desired effect has been achieved, the dosage can be reduced to 1 capsule of 400 mg 2 times a day.

Starting from 4 months you can consider:
–    to continue the dosage of 1 capsule 2 times a day
–    to reduce the dosage to 1 capsule 1 time a day
–    to stop taking PeaPure.

If the result decreases after reducing the dosage, it is advisable to increase the dosage again to 1 capsule 2 or 3 times a day.

or: General palmitoylethanolamide dosing guidelines are as follows:

  • Initial dose: 1200 mg per day, with or without food, for the first 6 weeks.
  • Maintenance dose: 600 mg per day, with or without food.

L-Tryptophan

Good for:

Anxiety, Insomnia, fibromyalgia, sugar/carb cravings, binge eating, migraines, PMS, dementia

Action:

The amino acid, L-tryptophan, carries information throughout the nervous system and promotes emotional calmness. Our bodies convert it to 5-HTP (5-hyrdoxytryptophan), and then to serotonin, melatonin, and vitamin B6 (nicotinamide).

Serotonin is an important neurotransmitter with a major role in sleep, pain, and appetite, and it affects conditions like depression and anxiety. It influences pain thresholds through interacting with other compounds involved in the sensation of pain, like substance P and endorphins.

Side Effects/Risks:

Drowsiness, agitation, nausea, dizziness, headache,  lightheadedness, loss of appetite and muscle tenderness, gut symptoms,

Between 1988-1999, an EMS outbreak prompted the FDA to recall and cease over-the-counter tryptophan supplements. However, this was because one company in Japan that made synthetic tryptophan altered their creation process, which caused the outbreak. After this was caught and fixed, the FDA lifted the ban in 2001

Contraindicated for MAOI, iproniazid, liver disease, kidney disease. Anti-cough drugs such as dihydrocodeine, noscapine, and dextromethorphan increased cough resistance.

Dosage:

  • for sleep disorders/insomnia: 1–2 grams taken at bedtime
  • for chronic pain or migraines: 2–4 grams per day in divided doses
  • for treating PMS or PMDD: 2–4 grams daily
  • for helping to alleviate depression or anxiety: 2–6 grams daily (it’s best to work with a doctor)
  • for lowering appetite and cravings: 0.5–2 grams daily

While the usual dosage of L-tryptophan is 500 mg, many people take more and supplement’s instructions recommend 3 pills before bedtime.

Less than 8 grams per day for 8 weeks shouldn’t produce any side effects.However, an upper limit for tryptophan supplementation is still uncertain

Resveratrol

Good for:

Nerve pain, allodynia, anxiety, cholesterol, lowering blood pressure, arthritis, diabetes or prediabetes

Action:

Suppresses currents along sodium channel for analgesic effect. Inhibits inflammation. Regulates levels of nerve growth factors and lowers oxidative stress.
Known to stimulate norepinephrine release at a moderate level. Resveratrol is also an MAO-Inhibitor and a serotonin agonist. As such, it may improve mood, reduce anxiety and even lead to better sleep quality. Promote better circulation.

Side Effects/Risks:

At high doses, it may cause gastric side effects such as nausea and diarrhoea. One study has noted side effects such as a headache, skin rash and common cold-like symptoms.
Caution in bleeding disorders.

Blocks some enzymes that help clear certain compounds from the body. That means some medications could build up to unsafe levels. These include certain blood pressure medications, anxiety meds and immunosuppressants.

In some situations, high doses of resveratrol boost the activity of estrogen, in others they block estrogen. That makes resveratrol supplements iffy for women with cancer of the breast, ovary, uterus, or other estrogen-sensitive tissue, those trying to become pregnant, or those taking an oral contraceptive.

Dosage:

500-1000mg daily of resveratrol has been evaluated in clinical studies.

Typically taken in about 250 to 500 milligrams/day dosages. It’s important to point out that this is generally lower than the amounts that have been shown to be beneficial in studies, but it’s not clear if taking very high doses is safe.

Passion Flower / Passiflora

Good For:

Nerve pain, allodynia, anxiety, Fibromyalgia, sleep, Parkinsons, lowering blood pressure, menopause (hot flashes/night sweats)

Action:

Increases levels of gamma aminobutyric acid (GABA) in the brain. Contains compounds called beta-carboline harmala alkaloids which act as natural MAO (monoamine oxidase) inhibitors. MAO inhibitors aid in the metabolism of feel-good neurotransmitters serotonin and norephinephrine.
Shown to have anti-inflammatory, anticonvulsant and antispasmodic properties.

Side Effects/Risks:

Drowsiness. Dizziness, confusion, irregular muscle action and coordination, altered consciousness, and inflamed blood vessels. There has also been a report of nausea, vomiting.
More serious side effects include irregular heartbeat, loss of coordination and liver damage
Passionflower can affect the central nervous system. It might increase the effects of anesthesia and other medications on the brain during and after surgery.
Contraindicated with sedative medications, blood thinners, MAOs and blood pressure medication

Dosage:

The capsules usually come in 200-400 mg doses taken two to three times a day.
Between 250 mg to 2,000 mg of the raw herb three times daily.

For anxiety 200-300 mg of a standardized extract, twice a day.

NAC or N-acetylcysteine

Good for:

Nerve pain, cholesterol, CRPSAction:
Increase glutathione synthesis in the liver. Fights oxidative stress. Reduces inflammation.  Regulates neurotransmitter levels. Normalises mitochondrial function, which can repair and restore nerve function in case of nerve damage.

Side Effects/Risks:

Adverse reactions are normally limited to diarrhea, headache, nausea and/or vomiting
Contraindicated kidney stones and stomach ulcer. Contraindicated with nitroglycerin.

Warning for bleeding disorders.

Dosage:

About 500 mg to 1800 mg per day . Two human studies have used 1200mg N-acetylcysteine 1-2 times a day for peripheral neuropathy and neuropathic pain treatment. High dose NAC can have side effects; the dose range of 2-2.4g/day is safe and effective in most conditions. Start with a small dose and increase gradually to identify a dose that suits you.

Most research also indicates that it is essential to take 500 mg of Vitamin C to prevent kidney stones.

Turmeric / Curcumin

Good for:

Allodynia, nerve pain, anxiety, depression, arthritis, IBS

Action:

Antinociceptive pain blocking in neurons. Anti-inflammatory and antioxidant properties. Epigenetic agent having a positive impact on gene expression primarily by influencing methylation.
Elevates neurotransmitters such as serotonin, while lowering stress hormones, such as cortisol.

Side Effects/Risks:

Some research suggests the potential for liver toxicity. Possible side effects possible (at high doses) is gastric discomfort such as nausea, diarrhoea, constipation, bloating .
High in oxalates which is bad for kidney stones.
Warning for bleeding disorders.

Hyperactive gallbladder contractions.

Increased liver function tests.

Interacts with drug metabolising enzymes; please maintain a 3-4 hour gap between taking curcumin and any medication.

Dosage:

300-400mg 2-3 times a day for standardized 95% curcumin extract.
Neuropathy 500-1000mg of standardised 95% curcumin. Start with small doses such as 500mg per day for a week and then scale up gradually every week. Doses up to 8g have been found to be safe but a dose of 2g per day should suffice for severe cases.

Quercetin

Good for:

Nerve pain, allodynia, inflammation, allergies, cholesterol, heart disease, lowering blood pressure, prostrate

Action:

Fights oxidative stress. Inhibits inflammation. Can regulate immune responses and serve as a natural immunosuppressant in some conditions.
Can help in regeneration of nerve cells and promote neurite growth.
Civi et al. have found quercetin to be more effective than gabapentin and morphine in relieving nerve pain in a model of nerve constriction injury.

Side effects/risks:

Can cause headache and tingling of the arms and legs.

Please maintain a 3-4 hour gap between taking quercetin and any medications.
It may interact with certain medications: antibiotics, felodipine, quinolones, cisplatin, doxorubicin, digoxin, cyclosporine, corticosteroids and blood thinners.
Doses higher than 1g may cause kidney toxicity. It is advisable to take periodic breaks when taking quercetin supplements.

Dosage:

Depending on the severity of symptoms, 500-1000mg of quercetin for neuropathy.

Start with smallest dose available (250 or 500mg) and scale up gradually over weeks. Doses higher than 1000mg are not recommended. Cycling the dose or taking a break from quercetin intermittently is advised.
Quercetin supplements can be taken with other flavonoids such as curcumin, resveratrol or green tea catechins to get the benefits at a reduced dose.

 

Also Useful…

Magnesium
involved in muscle contraction, nerve conduction and muscle relaxation. May help relieve nerve pain by blocking certain pain receptors and acting as an anti-inflammatory in order to regulate pain.

Omega 3
building blocks of nerve tissue and are useful at high doses (6 grams daily) to reduce nerve inflammation.

GLA / Gamma-linolenic acid
omega-6 oil that has been studied and found to protect nerves from diabetes-induced injury high in evening primrose, borage and black currant oils. Anti-inflammatory

Vitamin D
can help to reduce the pain and inflammation associated with neuropathy, along with actually repairing the nerves and myelin sheath. Enhances the absorption of important minerals. Held to be integral to the healthy production and protection of neurotransmitters and other nervous system tissues.

Thiamine B1 or Benfotiamine
benfotiamine modulates the pathways that cause neuropathy. It regulates cellular damage caused by high levels of glucose and prevents vascular problems that also contribute to neuropathy. Several trials have demonstrated that benfotiamine taken at doses between 300 and 600 mg a day can significantly relieve the symptoms of diabetic neuropathy. Benfotiamine is often prescribed in Germany as a treatment for sciatica and other neuropathic pain complaints.

Vitamin B6
Benefits nerve function and synthesizes neurotransmitters like serotonin and dopamine

Vitamin B12
Vitamin B12 can extenuate nerve damage caused by neuropathy by activating a chemical signal, which helps nerves to regenerate. Restores blood flow which produces myelin synthesis, a fatty substance that protects the nerve fibers. Combinations of Vitamin B12 and 6 (methylcobalmin, folic acid and pyridoxal) have been found to improve symptoms and maintain the health of nerves in the extremities. Deficiency in B12 can contribute to peripheral neuropathy.

CoQ10 (CoEnzyme Q10)
plays an important role in addressing mitochondrial dysfunction, a condition that may result in nerve damage and pain. This supplement is also effective at neutralizing the threat of free radicals in the body.

Calcium
needed for the transmission of nerve signals between the brain and body

Zinc
essential for normal nerve function

 

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Starting New IBS Probiotic – Saccharomyces Boulardii

I’ve been taking a probiotic with every meal for my IBS for 2 years (thank goodness for www.patientslikeme.com so I can keep track of these things more easily now!). I’ve been using Higher Nature’s Probio Daily which is lactobacillus sporogenes.

Lactobacillus sporogenes, acts as a ‘transient’ bacterium, helping to maintain intestinal and immune system health, a balance of good bacteria over bad, and regular bowel movement… One tablet contains 150 million bacteria.

To be honest I’m not really sure if it’s helped with IBS or not. It’s not as though if I don’t take it or I miss a day I notice any dramatic difference. But I figured it didn’t do any harm to take it either.

A friend reminded me about Florastor which she takes and which is a different kind of probiotic. It’s saccharomyces boulardii which is supposed to be good for IBS and IBD like Ulcerative Colitis and Crohn’s Disease.

Florastor has limited availability in the UK but it’s very expensive so I started searching for saccharomyces boulardii and came across Optibac for Bowel Calm. It used to be called DiarSafe thank goodness Optibac sounds so much better!

It’s still expensive but I got some on special offer to try and they arrived today so my saccharomyces boulardii experiment begins this evening.  I can’t say saccharomyces boulardii but notice how much I like copying and pasting it!

OptiBac Probiotics For bowel calm contains pure Saccharomyces boulardii, a natural and safe probiotic yeast with vast scientific research and documentation on its benefits in supporting bowel health, comfort and function.

S. boulardii has been internationally acclaimed as the number one probiotic for diarrhoea – to reduce discomfort and urgency and to restore control and regular bowel movements. For bowel calm Saccharomyces boulardii is a natural probiotic food supplement and not a medicine. It is a completely natural probiotic offering support for fast acting bowel calm, comfort and control when you need it most.

How does For bowel calm work?

Saccharomyces boulardii – a unique probiotic yeast which is sold widely in the US, Scandinavia, Germany & France. S. boulardii has undergone extensive clinical research demonstrating its ability to flush out pathogenic bacteria such as E. coli and Salmonella, in order to work against diarrhoea.

For IBS it’s 1 tablet a day which does it make somewhat more cost effective (it’s about £6 for 16 tablets and £25 for a box of 80 tablets) and it’s not the most expensive suppliment I’ve tried. Optibac is also much more widely available in the UK including direct from the company but shopping around you may get a good deal.

But if it does prove effective (fingers crossed) I’ll look to buy another brand of saccharomyces boulardii through iherb.com I think – there’s quite a few available.

So fingers crossed and I’ll see what happens with the old guts overt the coming weeks!

 

Making My Own Tummy Remedy

I’ve been buying supplies today to make my own tummy medicine which I’m basing on Resolve but without the paracetamol.

Resolve is the most effective medicine I’ve found when I’ve got gassy, crampy discomfort from IBS and a sensitive stomach.  The problem with is it also contains a dose of paracetamol which often I don’t really need.  Or I’d rather take a co-codamol at another time in the day for something else.

I searched for an off the shelf solution – a stomach medicine that was similar without the pain killer.  I found Eno Salts which are similiar and do offer some relief.  But they’re not as good. Studying the ingredients I found that they don’t have Potassium Bircarbonate where Resolve does.

So the only way I was going to get what I needed was to make my own.

I realised that the Potassium Bicarb is indeed the missing element when I was searching for supplies and found this suppliment for soothing digestion. I’m also going to be adding some citric acid to make it fizz.

“Carbonates assist the small intestine in maintaining an alkaline pH. Carbonates may help improv…e tolerance to foods by improving digestive enzyme hydrolysis of proteins, fats and carbohydrates.”

http://www.bodykind.com/product/706_253-Bio_Carbonate-Digestive-Aid-90-Vegicaps.aspx?Referer=shopzilla_biocare+bio-carbonate+-+digestive+aid+-+90+vegicaps

I can buy Potassium Bicarbonate, Sodium Bicarbonate and Citric Acid (food grades) from ebay inexpensively.  (I could also add Vitamin C if I wanted like Resolve has but I don’t think I’ll need it.)  I’ve also bought some digital scales that measure tiny amounts (from 0.01g) and some small ziplock bags so I can make up ready doses for ease. 

I hope to find someway of measuring a single dose out so I can keep a large mix of it in a food container. The difficulty will be finding a spoon/scoop measure that happens to be the right volume for the weight I need for single dose.

I’ll share a recipe when and if I’ve mixed it successfully once I’ve gotten all my supplies.

It’s a little worrying to be ordering the scales, ziplock bags and citric acid used by shifty druggie types, not to mention the idea of potentially carrying little bags of white powder around (hmmmm) but I might only take Resolve and Enos sachets out in public to be safer.

The initial outlay is a little pricey but it works out around 15p a dose instead of 26p a dose for Resolve – plus of course I get what I need without the stuff I don’t.

I’m quite excited about it.  I hope it works!

D-Ribose Free for 10 Days

Ten days ago I stopped taking my twice daily 5mg 5g doses of D-Ribose to see if it had any impact on tummy troubles I get. After reading my post about possible side effects and contraindications of D-Ribose fellow blogger and ME-ite Ashy decided to stop taking it too for a few weeks to see what, if any the effect was.

After ten days the most noticeable thing is how much of a boost it seems to give me. Something I had been taking for granted.

My recovery time from even the smallest exertions is much worse and as the days have passed I’m feeling worse generally.  I’ve had aches and gland pain.  I’ve felt more sluggish in the mornings and it’s taken a 2-3 hoursfrom waking  to feel half human.  I’ve had a lot of pain in my neck, shoulders and jaw from tensing in my sleep and when I get tired.  In the evenings I am often counting down to when I can go to bed rather than enjoying the time I am up.

These are all things that I get from time to time but have not been so frequent or having such an impact in this last year whilst I have been using D-Ribose.

Despite having the desire and mindset to work on my art my reserves have been too low.  I effectively lost all of last week and am struggling through this week.  This usually happens when I am very run down, fighting a virus or have had a significant major exertion (pushing beyond my limits).

20070516_waiting_in_the_carI did have a large exertion 13 days ago but it was not beyond my limits. With that level of effort typically I would be over that in 2-3 days, maybe 4.  So by the time I stopped D-Ribose I was pretty much over the worst of it.  I suspect stopping the D-Ribose when I did meant the last part of recovery from it was hindered.

As for the experiment to see if D-Ribose is the cause of tummy troubles (gas, cramps, spasms, constipation, loose bowels and so on) I haven’t noticed any change.  I haven’t had tummy troubles every day, but neither have I been trouble free.  My gastric problems are so far about the same as before.

I realise it’s difficult to know how long to allow for problems/possible side effects like that to settle after stopping a suppliment or medication.  But I am certain the positive effects of D-Ribose have ceased.

My problem now is whether to keep with these conclusions after 10 days and get back to D-Ribose tomorrow.  Going back on it would possibly prove the benefits if my reserves pick up quickly after this fug filled week plus.  But it may not be conclusive about the tummy side effects.

If it does give me the boost I suspect then even if it does cause some gastric side effects it’s looking like a price that’s worth paying.

Can D-Ribose Make You Sick?

I started taking 10mg 10g of D-Ribose daily around a year ago.

I’ve had quite a few people find my blogs about D-Ribose and reporting to me problems they’ve experienced:

  • “a definite small but significant energy boost, but also had tummy pains”
  • “a tiny energy boost, but terrible constipation and migraines by the third day”
  • “just starting d-ribose and seem to be having reflux/chest pain”
  • “started the D-ribose over a week ago, and I’ve had abdominal pain, constipation, and now increased pulse and blood pressure”
  • “when I take the D-ribose it makes me feel dizzy.”

I myself have gastric discomfort which although I had experiences before I used D-Ribose it has been persistent throughout this last year.

pic by HckySo on Flickr

pic by HckySo on Flickr

The question is can D-Ribose be causing migraine, dizziness and gastric problems for some people?

The majority of references readily available on the internet, particularly with reference to it’s use with CFS/ME and Fibromyalgia, suggest it is relatively safe and harmless.

The only “reported side effects” I found when I started taking D-Ribose were a risk of hypoglycemia and possibly loose bowels.

I don’t think that gives the whole picture!

Once other people started commenting on my blog with their side effects, particularly gastric flare ups, I did some more research.  Then today I had a comment which told me that D-Ribose can cause increased levels of uric acid.  I’ve done some more reading.

I’m not an expert.  This post is a summary of what I’ve discovered so far.

Hypoglycemia & loose stools:

D-Ribose can cause transiet hypoglycemia and loose stools  in reference to large doses (10mg or over).  Dr Teitelbaum’s recommended dose is 3 x 5mg 5g daily for the first 4 weeks, then 2 x 5mg 5g daily after that.

“The first is a transient hypoglycemia (low blood sugar) that can be eliminated by taking larger doses of ribose with other carbohydrates (such as in juice). The second side effect that may occur in some individuals is loose stools. Again, this side effect has only been reported in very large doses, greater than 10 grams.”

Herx reaction theory:

pic by coldways on flickr

pic by coldways on flickr

There are some people who say that the D-Ribose gives your body and your cells the energy they need to function more efficiently and thus fight hidden/chronic/stealth infection in the body. It fuels your mitochondria.

When fighting this/these infection(s) the theory is it is possible you may get a Herx reaction.

It’s also possible that if the D-Ribose is fuelling your body properly you may be better absorbing other suppliments/nutritional elements that are fighting the infection and thus, ironically, feeling worse.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.

From Wikipedia entry on Herxheimer_reaction

More reading on Herx reaction http://lassesen.com/cfids/herxheimer.htm includes suggestions for treatment

And a mention about “die-off” and Herx reactions when de-toxing http://www.ahummingbirdsguide.com/treatingmeantioxidants.htm

In addition to possibly promoting a Herx reaction it could in itself cause an antioxidant effect:

“Ribose may support the body’s innate antioxidant mechanisms while promoting an antioxidant effect of its own.”

From 15 May – Almost Random Research

Uric acid:
pic by lunar caustic on flickr

pic by lunar caustic on flickr

Research has found that D-Ribose can contribute to the levels of uric acid in your body.

High levels of uric acid can cause gout, a form of inflammatory arthritis which usually effects the joints.  As the uric acid forms into crystals and settles around the body the immune system then attacks the crystals which causes inflammation.

Deposits of these crystals can also develop into kidney stones.

Read more about how uric acid can cause gout pain and kidney stones.

Research has shown that D-Ribose can contribute to uric acid levels and should therefore by avoided by those with gout or exisiting high levels of uric acid.

However, I am not clear whether the D-Ribose dosing for ME/CFS (typically 10mg 10g daily) can cause levels of uric acid to become dangerously high in individuals who do not already have gout or pre-exisiting high levels of uric acid.

Also high levels of uric acid in the blood does not always mean that a person will develop gout.

“Actually most people with hyperuricemia do not develop gout. Therefore it is not necessarily the high level of uric acid causing gout but perhaps a rapid change in its level.”

From Gout Prevention & Treatment on About Arthritis

Other factors  can contribute like dehydration, injury  fever, heavy eating, heavy drinking of alcohol , recent surgery, high blood pressure, abnormal kidney function and certain medications.

So it doesn’t neccessarily follow that D-Ribose can cause gout or kidney stones but caution should be exercised and it’s sensible that any new symptoms should be discussed with a doctor.

Warnings for use of D-Ribose:

pic by stewf on Flickr

pic by stewf on Flickr

Those with gout or high levels of uric acid should avoid using D-Ribose.

Diabetics should use D-Ribose only under a doctor’s supervision.

Hypoglycemics should exercise extreme caution in the use of D-Ribose.

Pregnant and nursing mothers should avoid using D-Ribose.

“PRECAUTIONS
Pregnant women and nursing mothers should avoid supplemental D-ribose.

Supplemental D-ribose may cause hypoglycemia and elevation in uric acid levels. Those with gout should avoid supplemental D-ribose, and those with elevated uric acid levels and hypoglycemics should exercise extreme caution in its use. Those with diabetes should also exercise extreme caution in its use. And those diabetics who decide to try D-ribose must be under a physician’s supervision and have their blood glucose levels closely monitored and their antidiabetic medications appropriately adjusted, if necessary.

ADVERSE REACTIONS
Reported adverse reactions include hypoglycemia, hyperuricemia, hyperuricosuria, diarrhea, nausea and headache.”

From guidance on vitmaker D-Ribose product

Typically persons with ME/CFS are sensitive to drugs and stimulants like caffeine and alcohol.  It’s not impossible to imagine that they can also be sensitive to D-ribose.

It may be “just a simple five-carbon sugar” but it seems the possible side effects, particularly for persons with ME/CFS, can be more than reported by some suppliers.

Like any drug or suppliment caution should be used.

My experience:

I’ve been taking D-Ribose for a year.  I take two doses of 5mg 5g (one scoop) daily. I have mistakenly said I take 10mg 10g doses on my blog in the past.  It is in fact 5mg 5g doses.

pic by pckux on flickr

pic by pckux on flickr

I find D-Ribose gives me a small but beneficial energy boost.

My condition has improved in the last year but only a few percentage points of the ability scale.  My concentration has improved a great deal and my cognitive disfunction is not as big a problem.  I recover from exertions faster than before I started D-Ribose.  An exertion that used to take me 4-5 days to recover from now takes more like 1 or 2 days.

I am still ill with ME.  I am still pretty much housebound and unable to attend to routine personal care tasks on my own.  D-Ribose has not been a miracle suppliment for me.

I found taking D-Ribose in the evening (after 5pm) can cause me problem with getting to sleep.  I take 5mg in the morning and 5mg in the afternoon around 3pm.

I have had gastric problems persistently for the year I have been using D-Ribose including constipation, lots of gas, pain beneath my rib cage (possibly gas, possibly gallbladder), stomach and bowel cramping and spasms.  An IBS friendly diet and lately probiotics (Lactobacillus) seem to be helping with gastric disturbances but neither is a cure.  I did have similar bowel and stomach problems before I started D-Ribose although it feels different to before.

I have no way of knowing whether D-Ribose is responsible for any improvement or any side effect like gastric problems.

I cannot know whether these are a co-incidence, directly related to D-Ribose use, or indirectly from D-Ribose allowing an slight increase in activity promoting it’s own improvement and/or it triggering unwanted side effects.

What does alarm me slightly on a personal level about the uric acid link with D-Ribose is that I have gout and kidney stones in my immediate family.  That and there’s reasearch which suggests you can have an inherited problem with processing uric acid and thus be prone to complications.

D-Ribose is an expensive suppliment.  I think it’s worth experimenting by stopping taking it for a month or so to see what effect this has.

Summary:

I am not an expert or a doctor. This post collates information I have read on the internet.

D-Ribose hasn’t been scientifically proven to help persons with ME/CFS but research has shown persons with ME/CFS have disfunction in the cells which D-Ribose has been shown to aid.

Dr Teitelbaum conducted a survey in 2006 which found it was effective for treatment of CFS and FM but it was  not placebo controlled and was conducted on a small group.

66% of the 41 participants found the supplement helpful and it produced improvement in all the areas tested: energy, sleep, mental clarity, pain intensity and well-being

D-Ribose can have side effects especillay in large doses (10mg or over).

You should avoid taking D-Ribose if:

  • you are diabetic
  • you have gout
  • you have high levels of uric acid
  • you are pregnant or breastfeeding
  • you are hypoglycemic use only with extreme caution

Side effects can include:

  • hypoglycemia or transient hypoglycemia
  • diarrhea
  • nausea
  • headache
  • high levels of uric acid in the blood (hyperuricemia) which could possibly leading to gout
  • high levels of uric acid excreted in the urine (hyperuricosuria) which could possibly lead to kidney stone

Anectdotally reported side effects also include:

  • constipation
  • dizziness
  • migraine
  • abdominal pain
  • difficulty getting to sleep
  • increased pulse and blood pressure
  • detoxing or antioxidant reaction
  • herx reactions (fever, chills, headache, muscle pain, skin problems)
pic by -lif- on flickr

pic by -lif- on flickr

Persons with ME/CFS or FM may find D-Ribose to be beneficial.  Caution should be exercised and you should check the warnings.  If you take D-Ribose and experience any new symptoms you should consult with a doctor.

My previous posts on D-Ribose can be found here:

D-Ribose – Week 14

Time for an update on how the D-Ribose plan is going. 

I’ve been taking D-Ribose for 14 weeks, along with 200mg of Q10 and around 500mg of L-Carnitine. I started on 3 x 10g a day for the first 4 weeks and ever since 2 x 10mg.

I take the first D-Ribose dose first thing in the morning and the second dose around 3pm.  Any later and it seems to add to my trouble with getting off to sleep.

After 14 weeks I can say that D-Ribose is not a miracle worker – at least it’s not an instant solution.  But I certainly feel a benefit.

I’ve described before how most mornings I feel quite wiped out when I wake up (not uncommon for ME/CFS). Half an hour to an hour after that first D-Ribose dose I feel less heavy, less exhausted.  Very slowly I am doing a tiny bit more as the weeks pass.  It’s very hard to measure and it’s such a tiny improvement I am sure only people who have experienced debilitating fatigue will recognise it as a cause for note at all!

I’m sorry I can’t quantify the effect for you. I know that sounds like a cop out.

But on days when everything feels heavy often the D-Ribose takes the edge off that.  By my second dose around 3pm on those heavy days I feel ready for the dose and it’s enough to keep the edge off until late evening. 

When I have done perhaps a little too much the D-Ribose offers little respite.  But the ‘payback’ for such exertions seems to last for a shorter time than before D-Ribose.  Perhaps a day or two to recover from seeing a friend on a better day instead of 3 or 4 days (or longer) as before.

So I also seem to have more frequent better days.  At least better in terms of feeling reasonably OK at rest during the main part of the day.

I have another 2-3 weeks of taking the high dose Q10. Or at least deciding whether I need to continue with this (rather costly!) suppliment for more than 4 months.  I do not know if the current problems with IBS, constipation (and adverse reactions to foods which previously in my ME/CFS have not been a problem) are connected to taking Q10 or L-Carnitine or even my body healing – OR if these symptoms are merely a new phase of my illness that co-incide.

So, as always, I am rather inconclusive!  But I thought I had better report where I am at – good, bad or difficult to quantify!

In case you did a search and arrived here other posts of mine on this that might interest you:

D-Ribose – Week 1

D-Ribose – Week 2

D-Ribose – Week 3

Around 1 month – Dangerous Days

Suppliments I am currently taking

The Vitamins and Supplements Quandry

I’ve just restocked on most of my regular vitamins and suppliments.  A change to my regular immune focused multi-vitamin (a new formula) has meant I’ve needed to double check I’m taking safe doses of everything.

Isn’t the internet (and world) full of contrasting information?  Or should that be opinion?

I am either:

  • optimising my nutrition and immune system
  • not taking high enough doses of stuff to have an impact
  • taking too high or too regular a dose of stuff and so setting myself up for toxic levels of substances, comprimising my immune system, and possibly other health complications
  • or I am making very expensive wee because we can’t absorb tablet supplements anyway

Sigh.  Even my books on CFS/ME by doctors disagree on which to take and even if to bother at all.

So I am shuffling striding boldly forwards, taking safe doses of various supplements because they haven’t given me any ill effects in the last 18 months and because I’ve just bought another 3 months supply! 

Oh and because when I stopped taking them last year I caught my first ME cold which developed into a chest infection which took me 3-4 months to get over.

This post is about me the suppliments I which  choose to take.  It’s not plucked out of thin air – I have done research and there are reasons why I do and don’t take certain things (right now).  I’m not an expert.  I’m just sharing my list for interest only.  Ok then.

Here’s my current list of pills and potions I take daily:

  • Immune supporting Multi-vitamin (including selenium, vitamin E, K, B1, B2, B6, folic acid, cystine, chromium and bioflavanoids amongst others) – Vitabiotics Immunance from ChemistDirect
  • L-Carnitine – 500mg (+30mg from muti-vit) – Lifeplan L-Carnitine 500mg from Lifeplan
  • Vitamin D (D3 cholecaliferol) – 500iu (+400iu from multi-vit) – Higher Nature Vitamin D 500 iu from GoodnessDirect
  • B12 – 1000ug (+14ug from multi-vit) – Lifeplan High Strength B12 1000ug from Lifeplan or GoodnessDirect
  • Magnesium with calcium – 66mg (+50mg from multi-vit) – I can take more if nauseous. Lifeplan Magnesium with calcium 500mg from Lifeplan

Plus:

  • Zinc – I’m now getting 15mg from my multi-vit so will only suppliment additional 15mg if I am fighting a virus – Lifeplan Zinc Amino Acid Chelate 15mg  from Lifeplan
  • Vitamin C – 1000mg (+ 150mg from multi-vit) – Natures Aid Low Acid Vitamin C 1000mg from SimplyNatural. I may start taking this every few days as some suggest it can have a bad effect having it daily.  This is the one brand that doesn’t irritate my stomach when taken at high doses.

Plus currently:

  • D-Ribose – 10g twice daily – ATP Pure D-Ribose 250g from MuscleForm
  • Co-Enzeyme Q10 – 200mg daily – Natures Aid Q10 100mg from QuickVit
  • Probiotic (lactobacillus sporogenes) – 3 times daily – Higher Nature Lactogest 90 tablets from GoodnessDirect
  • AllicinMax – 1 a day – Allicin International (not, I repeat not Health Perception) from QuickVit

I have also tried in the past:

  • N-Acetyl Cysteine 600mg daily
  • Astragalus (I will start taking this again soon)
  • Omega 3, 6 and 9 (fish and flax seed derived)
  • High doses of AllicinMax/Allimax

I shop around for deals on the vitamins/brands I use and have used UK based suppliers including

My preferred brands are:

  • Lifeplan
  • Nature’s Aid
  • Higher Nature

I find generic supermarket and Holland & Barratt can make me feel bloated, sluggish or irritate my stomach.

I eat daily fresh fruit, vegetables and protein.  Drink water, peppermint tea, fennel tea and a small glass of grape juice.  Take very little and only occasional dairy, wheat, sugar, deep fried anything. No alcohol, caffeine, carbonated drinks, red or dark meat,  eggs.  Avoiding MSG and artificial sweeteners wherever possible.

Here I am being as careful as possible, being as healthy as possible and still stuck at being at my lowest health ebb of my life. 

It used to frustrate me when I read about what CFS people took to help when they were clearly still very ill.  But I know without being careful and without taking control of my nutrition things would be much worse.  There’s always going to be someone who tells me I should be taking x suppliment and someone else telling me I shouldn’t.  I think this is more of an art than a science.

I do know that whenver I write “nutrition” my brain always thinks “nuture” instead.


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