My Personal Experience Taking Elderberry with an Autoimmune Disease |

My Personal Experience Taking Elderberry with an Autoimmune Disease

Sarena-Rae Santos September 11, 2023

At 21 years old, I was diagnosed with complex regional pain syndrome (CRPS), but I have had this autoimmune condition since I was 14. Before adopting a natural-like lifestyle, I was active in the chronic pain and autoimmune community. Unfortunately, as my natural health journey flourished and I eventually went into remission, I wasn’t very accepted in the community. 

Community members often attacked my lifestyle choices, so when I started discussing elderberry, I was met with aggression. “You can’t take elderberry; you have an autoimmune disease!” “If you can take elderberry, clearly you don’t have complex regional pain syndrome!” “You’ve been faking this whole time!” “I can’t wait to see you start flaring again!” I quickly learned my community wasn’t the support system I once thought they were. 

When I started my herbal journey, I did a lot of research. For some reason, herbs have always been something I loved researching. It amazes me how the mainstream pharmaceutical industry can find nature so catastrophic to human health while actively pushing and profiting from synthetic versions of natural remedies in their trillion-dollar industry. 

Just as you wouldn’t go to a dentist for general medical advice, I don’t go to those who profit from my sickness for herbal advice. If you read our blog, Allopathic Vs. Holistic Medicine, you know, licensed naturopathic doctors are educated in the same basic sciences as MDs but also study holistic and nontoxic approaches like herbal medicine. They are the experts on this topic, not MDs, who are trained to treat symptoms with pharmaceuticals. Still, I’d like to share both sides’ views and my personal experience to provide all the information and hopefully jumpstart your research to see if elderberry is right for you.

Mainstream’s Vs. Herbalist’s Take on Elderberry

The mainstream warns taking elderberry with an autoimmune disease may cause the immune system to become more active. This could increase the symptoms of autoimmune diseases. If you have an autoimmune condition, the mainstream says avoiding elderberry is best (1).

If you read our elderberry herbal profile, you know trusted herbalist Richard Whelan says if you’re taking medications to suppress your immune system, you should use elderberry with caution since it is known to have immune system-enhancing effects. Elderberry’s immune system-enhancing effects are also why people with autoimmune diseases should proceed cautiously. If you have an autoimmune condition, be on the lookout for flares in your condition if you are trialing the use of elderberries, and stop immediately if your condition worsens (2).

As you can see, the mainstream view is adamant about not taking elderberry, while the herbalist view is to proceed cautiously. Even some of the safest herbs used in everyday foods, like turmeric, ginger, garlic, and oregano, have warnings from the mainstream. They fail to realize that herbs (nor pharmaceuticals) aren’t a one-size-fits-all. One herb may work perfectly for me while causing unwanted side effects for you. 

I’d like to note that elderberry is an herb that can be purchased in some grocery stores. Some grocery stores sell elderberry jam and pie. To claim a berry with as many documented health benefits as elderberry is potentially unsafe is unrealistic. I could understand if it were a toxic berry, but it is a pretty common fruit, and it is completely safe to consume, even for children or while pregnant and breastfeeding. Of course, not every herb is right for every person, so discontinue usage if you find elderberry isn’t the right fit. 

Speaking of toxic berries, a common myth surrounding elderberries is that they’re poisonous and consuming them will kill you. This myth is true to an extent. Raw or unripe elderberries (and their leaves) contain toxic compounds known as cyanogenic glycosides and must be cooked sufficiently to avoid the risk of cyanide toxicity (3). Although some claim to eat elderberries raw, consuming elder bark, leaves, and raw elderberries has caused poisoning and hospitalization, so raw consumption should be avoided.

While on the topic of myths, there’s another common misconception I feel needs to be addressed – cytokine storm. If you read our blog, Is Elderberry Really the Best Flu Remedy, you know the evidence most often used to ‘prove’ elderberry can cause a cytokine storm is a 2001 study that looks at immune activation in healthy people. Researchers noted that, with regular consumption, pro-inflammatory cytokine production was increased. They also concluded that elderberries could benefit several health issues (4).

This study does not conclude that the cytokine increase was problematic (quite the opposite!). Pro-inflammatory cytokines are standard in most cases – they activate the immune system and help fight acute and chronic illnesses. This study was not evidence of dysfunction, nor that elderberry is causing or could cause a “cytokine storm.”

In over 4,000 years of use, there have been no actual reported cases of a cytokine storm associated with elderberry use. It would be more than theoretical if this were a real risk. In fact, in another study, elderberry was used and other herbs for its anti-cytokine production. In most cases, it has more of a “balancing” effect than anything else (5). Another study confirms this, noting elderberry’s “inflammation-modulating” properties (6).

Just a quick recap: elderberry can increase the production of pro-inflammatory cytokines, which may be associated with a cytokine reaction and severe complications. However, elderberry has never explicitly been associated with a cytokine storm nor caused any problems with immune function.

My Personal Experience Taking Elderberry with an Autoimmune Disease

I have consistently taken elderberry since 2019. Of course, there are days I forget to take it or skip it because I’ve run out, but overall, I have taken it consistently for a while without any issues. 

When I first started taking elderberry, I used Earthley’s Elderberry Elixir. I did not start with the recommended dose; I started with a much smaller dose (five drops) and worked myself up to the “normal” dosage. Weekly, I increased the dosage, doubling the dose until I reached a dosage of 30 drops. I started slow to ensure my body handled the dosage well and didn’t react negatively or flare due to my autoimmune disorder. 

I never had issues taking elderberry. I have never noticed it to cause flares, and I remain in remission today despite taking elderberry consistently before entering remission. Depending on the time of the year, I even double my dosage to 60 drops because allergy season is no joke down south. Additionally, I have several friends with other autoimmune conditions who’ve had no issues taking elderberry consistently. 

Again, not every herb is right for every person. Just because I and others had success using elderberry doesn’t mean you may not react. Your experience is valid. Remember, if you have an autoimmune condition and decide to try elderberry, start slow and gradually work up. Be on the lookout for flares and stop immediately if your condition worsens. If you find elderberry is not for you or are uncomfortable taking the risk, consider adaptogenic herbs for immune support.

I recommend Earthley’s Adaptogenic Immunity, which combines five certified organic herbs to support the immune system, improve the body’s ability to cope with stress, and nourish you for total body wellness! This alcohol-free, botanical liquid is highly bioavailable and easy to assimilate. These herbs are generally safe even for people who have been told not to use “immune boosters.”

What are your thoughts on taking elderberry with an autoimmune disease?

This is the writings of:

Sarena-Rae Santos
Sarena-Rae Santos' journey to natural health began in 2019 when she swayed away from allopathic medicine after becoming wheelchair-bound due to the side effects of 20+ medications. Complex Regional Pain Syndrome (CRPS) and dizziness due to nystagmus were the sources of her many health complications. Sarena's symptoms diminished after adopting a healthier lifestyle surrounding whole foods and herbs, leaving her a fantastic quality of life and a passion for educating people.

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Hi, I’m Kate.  I love medical freedom, sharing natural remedies, developing real food recipes, and gentle parenting. My goal is to teach you how to live your life free from Big Pharma, Big Food, and Big Government by learning about herbs, cooking, and sustainable practices.

I’m the author of Natural Remedies for Kids and the owner and lead herbalist at EarthleyI hope you’ll join me on the journey to a free and healthy life!

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