Supplement Warnings… B6 Toxicity, Seratonin Syndrome, GABA Receptors and More
My Position on Supplements
I am a strong believer in evidence-based medicine. However, evidence-based medicine doesn't have a cure for MECFS. Symptom management is all it has to offer, and many symptoms like fatigue are unmanageable.
Therefore, I acknowledge and support patients' ability to choose to try things that may improve their health, even in lack of substantial evidence.
However, I believe that personal anecdote or promotion of these supplements as someone with influence in the community is a dangerous line. In short, I don't want to you to try something because I tried it. I want you to try it IF the evidence base in relation to your personal health history is convincing to you. Preferably under the guidance of a medical professional.
Because many pwME do not have access to a good doctor who is willing to supervise experimental treatment including supplements, the goal of this post is harm reduction. These are serious dangers posed by common supplements in our community and how to avoid them (without saying never take supplements).
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B6 Toxicity
Most vitamin supplements are water-soluble. That means if you eat a normal diet and take vitamins most of them will just go down the toilet. But B6 is different. It is not water-soluble which means it can build up in your body to toxic levels.
Symptoms of B6 toxicity are neurological and include:
As you can see, these are all symptoms a person with ME might struggle to identify until it is too late.
B6 is included in many supplements, including ones you may take for other reasons. Check your bottles carefully and if you are taking more than the daily allowance ask your GP to check your levels with a blood test.
Other common vitamins that can cause toxicity include: B3 (despite being water soluble, A, D, E & K
Minerals that can cause toxicity include: Chromium, Copper, Iron, Magnesium, Magnese, Nickle, Selenium & Zinc
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Creatine, Dehydration & Blood Clots
Creatine is an amino acid that helps to promote muscle strength in anaerobic exercise. For this reason, it is often used to prevent PEM.
However, creatine is extremely dehydrating. It draws water out of the blood and into the muscles. For this reason, it can cause blood clots. This it is extremely important not to use creatine if you are dehydrated.
Additionally, long covid has been linked to micro blood clots and MECFS is associated with low blood volume. For this reason, while creatine is normally very safe, it should be used with caution in the ME and long covid population.
In addition to the concern with creatine, careful attention should be paid to the water required to process supplements. Many supplements place additional strain on the kidneys or require dilution with water and if taken in capsules it is easy to combine supplements with inadequate hydration. This can make otherwise safe compounds much more dangerous.
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Serotonin Syndrome
There are many herbal supplements that strongly affect the brain. If you take these it is essential to understand how each of your meds effects neurotransmitters especially serotonin and GABA.
Seratonin Syndrome is caused by a toxic level of serotonin in the brain. This can be deadly and is often how people die from overdosing on antidepressants. The most common substances to be aware of:
St Johns Wart - Increases your production of serotonin.
SSRIs & SNRIs - Stops your absorbtion of serotonin
5-HTP & L-Tryptophan - Chemical precursors to serotonin
Ginseng & Nutmeg
Other antidepressants, painkillers, migraine medications, cough and cold medications, and anti-nausea medications
The most dangerous combination is a drug that stimulates serotonin in combination with one that stops absorption. This is why combining SSRIs and St. Johns Wart is one of the leading causes of serotonin syndrome.
Many patients with MECFS report strong sensitivity to psychiatric medication. These patients should also use caution when trying supplements that affect the same neurotransmitters.
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GABA & CNS Depression
There are many different GABA receptors. Benzodiazepines work on one class of receptors. Other supplements and sleep meds work on different GABA receptors. If you always stimulate the same class of receptor you can become addicted, and benzo drugs are the most likely to cause addiction. But you need to be cautious as combining GABA agents can cause very strong interactions which can lead to dangerous levels of relaxation known as CNS depression. As with serotonin syndrome, this can be deadly and is the reason people die from combining sleeping pills and alchohol.
Some supplements that affect GABA include:
GABA
Valerian Root
Kava
Passionflower
Skullcap
L-Theanine
Hops
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Ashwhaghada & Cortisone Blocking
Cortisone is the hormone responsible for our stress response and plays many roles in the body. Steroid medications are used to artificially raise cortisone in order to produce anti-inflammatory and immunosuppressive effects in autoinflammatory disease.
Ashwhaghada is a commonly used adaptogenic herb. It has immunomodulatory effects (increases some immune activities and suppresses others) and also stress relieving effects.
One way Ashwhaghanda can act as a stress reliever and anti-anxiety medication is by blocking the bodies production and response to cortisol. For this reason, if you rely on steroid medications, Ashwaghanda may block the effectiveness of your medication and cause a flare.
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General Immune Stimulants & Autoimmune Disease
Many herbs and supplements are advertised for their immune-stimulating effects. While these supplements might be helpful to healthy people fighting infections, they can be dangerous to people with autoimmune disease because they can activate the immune system triggering a flare.
Some people with MECFS have underactive immune systems, but most have disrupted immune systems meaning that there are elements of both immunosuppression and autoimmune disease. Therefore extreme caution should be exercised around supplements that activate the immune system. In general, supplements that are immunomodulatory are a better idea than those that are purely activating.
Some highly immune-activating supplements to be cautious of include:
Ginsing
Cats Claw
Echinacea
High dose vitamin C
Some less risky options for those with autoimmune disease that still boost your ability to fight microbes include:
Oregano
Thyme
Ginger
Curcumin
Holy Basil
Garlic
But patients who are immunocompromised should always seek immediate medical attention if they suspect bacterial or viral infections as prompt testing and treatment can prevent life-threatening sepsis.
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MCAS, MCS & Supplements
Patients with MCAS or MCS are generally well aware of the risks of taking new medications including both the risk of reacting to active ingredients and to inactive ingredients like dyes and fillers. Despite their "natural" branding, supplements carry the same risks. It is important that patients with chemical sensitivities are aware of both the active and inactive ingredients in supplements and be prepared for adverse reactions to unknown compounds.
In general, buying supplements from the same brand and with the same fillers can be a helpful strategy to avoiding adverse reactions. It is also important to add supplements one at a time and away from adding new medications so that you can quickly identify the origin of any new adverse reactions.
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Key Messages
-Supplements just like all experimental treatments carry risk.
-Just as you would check any medication for side effects and interactions before taking it, you should also check a supplement for harmful interactions or side effects before taking or purchasing it.
-Supplements work on your body in many ways just like medications. Therefore they interact with your medications.
-Be aware of how supplements are excreted from your body. If a supplement is not water-soluble you must be especially careful to avoid toxicity.
-Monitoring blood tests can be just as important if you are taking a lot of supplements as if you are taking a lot of medication.
-Very effective herbs or supplements are often effective because they work on the same system as medications that have similar effects. Be very cautious if you are duplicating using a supplement and drug that claim the same benefits.
-Inactive ingredients in supplements must be monitored just as in medications, especially in patients with MCS or MCAS.
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Supplements and Herbs are powerful. But that power means they can also be dangerous.
Here's the thing: any treatment that has zero side effects also pretty much always has zero effects. Besides of course the placebo effect.
Vitamins, herbal medicine and supplements of all sorts do not have zero effect. They can have serious benefits for many with Myalgic Encephalomyelitis aka MECFS and is why while I cannot recommend any specific supplements due to a lack of evidence I also support patients in trying to find what works for them.
However, like any medical treatment with effects, there are also risks to supplements. This post aims to educate you on the most common side effects that persons with ME and long covid will run into as we experiment with supplements. I hope that it will provide much-needed harm reduction for a community desperate for a cure.
I am not saying do not take supplements. I am not saying do not take these supplements.
I am saying read the warning label.
Unfortunately, for many supplements, the warning labels are missing. So here is a little of what should be on the bottles.
