Happy May!

May is Lyme Disease awareness month. It also marks my third complete year of Lyme treatment. So in this post I want to give a brief health status update and proceed to do a Q-and-A of some of the most commonly-asked questions about Lyme disease to spread more awareness.

For those of you who don't know, I have been struggling with Lyme disease, co-infections and Candida since spring of 2016. You can read more about my diagnosis and early treatment experiences here and here. Back in November I shared about how I switched from antibiotics to a new protocol called the Byron White Formulas at the end of last summer and had been experiencing a lot of improvements. Since the new year, I have felt these improvements begin to plateau. While I am undoubtedly better in several tangible areas (less overall pain and normal walking) I continue to suffer with considerable physical and mental fatigue, brain fog, overstimulation of senses, weakness, general flu-like malaise and feelings of pain and general burning at times. In short, I'm hanging in there but it's still tough.

Overall, I'd say the most important part of my recovery continues to be prioritizing my spiritual and mental health. I truly believe that being involved with my church, having meaningful relationships, regular devotional time (Bible reading, spiritual books, prayer) and counseling sessions have made the biggest difference in my healing.

There is a proverb I love that speaks to the importance of spiritual and mental health in physical healing: "A man’s spirit will endure sickness, but a crushed spirit who can bear?" (Prov. 18:14). Humans can endure incredibly trying physical hardships if their spirit is strong. I don't believe that means mustering up some herculean inner strength...I believe it means receiving and relying on the love of God in Christ and the support of loving people. If I didn't have my faith or the encouragement of a loving community, I shudder to think where I would be. But I am so grateful for every ounce of support I receive and the incredible ways God has met me during this time.

Now that I've given you a personal update, I want to jump into some of the most common questions I receive about Lyme disease. So please hang in there and allow yourself to learn about Lyme, you never know when your awareness to Lyme disease will benefit you or someone you know in the future!

Commonly Asked Questions

1.) Do you remember getting bit or finding a tick?

The most common question I receive from people (friends or otherwise) is whether I remember being bit by a tick. And the answer to that is I honestly have no recollection of ever seeing a tick or a bulls-eye rash (hallmark rash of an infected tick bite that looks like a bulls-eye). In fact, according to the CDC, less than 50 percent of infected persons recall ever finding a rash. Unfortunately without finding a rash, it is nearly impossible to notice a tick bite since they can be as small as the period at the end of this sentence.

2.) What were your first symptoms and how long did it take to get diagnosed?

I first started noticing symptoms in February 2016 and received an official Lyme disease diagnosis in mid-May 2016 (you can read more about my early journey in this post). My initial symptoms were mild (stiff neck, chest pains, fatigue, headaches) but gradually became more severe and obscure (stabbing pains in bottoms of feet, trouble walking, tingling and numbness in extremities). Fortunately I was tested for Lyme disease and my test showed up very positive, even by CDC standards.

In the Lyme world, that is a relatively quick and straightforward diagnosis. Many Lyme sufferers go through multiple years of symptoms before receiving a correct diagnosis. There are many reasons why Lyme is so complicated to diagnose. Lyme can mimic all sorts of other illnesses/disorders and the most common Lyme disease test has a 33 percent chance of missing the disease (for more about tests look here). It's very important not to rule out Lyme right away just because the test is negative or your symptoms don't match up evenly with someone else who has Lyme. No two Lyme cases are the same!

3.) How are you supposed to treat Lyme?

I don't think I am qualified to answer this one firsthand, but I would refer you to ILADS Lyme 101 and treatment guidelines for more official answers.

In a nutshell, the most popular treatments for Lyme disease include various combinations of antibiotics to kill the bacteria and usually supplements on the side to boost your immune system (probiotics, vitamins, etc.) For some people (myself included), long-term antibiotics can be too harsh on the body after prolonged use. In these cases, there are several herbal options that effectively kill bacteria more naturally. Some examples of notable herbal protocols include the Cowden Protocol, Byron White Formulas and Steven Buhner's Protocol. You can read more about these alternative protocols here.

One important factor to mention here is the treatment of co-infections. Nearly every Lyme patient has at least one co-infection. You can read more about these co-infections here. But the gist is that they require slightly separate treatment in order to fully eradicate the illness as a whole.

What is also important while treating Lyme disease is eating balanced, low-inflammatory diet (reducing carbs, dairy and sugar) and detoxing. Because Lyme treatment can be harsh on the body as you are killing bacteria, it's very important to be aiding your body in detoxing and flushing out the dead bacteria as efficiently as possible When the bacteria is dead but not yet properly detoxed you experience what's called a "herx" reaction, where you feel increased symptoms. I have found epsom salt baths, alka-seltzer gold with water and lemon juice and supplementing glutathione to be most helpful with detoxing.

4.) Does it ever go away or do you have it forever?

Usually after someone learns all about Lyme disease and how difficult it can be to treat they wonder if it is possible to ever fully eradicate the disease once it's spread so much inside of someone. I confess I still wonder this myself from time to time. But I am choosing hold to my current doctor's opinion that Lyme can, after the right algorithm of treatment protocols, completely leave your body. My doctor attests that he has seen patients walk away on the other side of Lyme treatment free of the disease. What he doesn't promise is that it will happen quickly or easily. Yeah, I don't like that answer either.

5.) Is Lyme disease contagious in any way?

This is another tricky question that I have even asked myself a few times. My worst fear is to spread this horrible disease to someone in my life unintentionally. What does research have to say?

Research would tell you that it can be passed on from pregnant mothers who are infected through the placenta during pregnancy. There is sobering evidence behind that claim. There is also controversy as to whether Lyme can be sexually transmitted, in the same way any other STD could be. Most notable research would deny that claim, but even my doctor is open to the possibility of it. Lyme patients would best ere on the cautious side in all of these matters until there is more substantial evidence of healing.

6.) Can you die from Lyme disease?

Short answer? Yes.

Long answer? It depends on a lot of factors. You can also die in a car accident on your way to work tomorrow. Not to be morbid, but there really is no guarantee we are ever totally safe. But in all honesty, the likelihood of dying from Lyme disease is quite rare. There can be complications and in rare cases the Lyme bacteria can spread to your heart causing Lyme Carditis.

It's important to be aware of any symptoms that can involve your chest or heart and have a doctor test your heart if you think you might have been exposed to ticks.

My final points

I hope this was informative and helpful. Since this is the season to get outside and enjoy the great outdoors, I believe it's doubly important that people are aware of the threat of Lyme. The most important points I would emphasize are:

1.) Be careful of grassy or bushy areas, especially on the sides of yards or woods (that's where ticks tend to be, especially in morning or evenings)

2.) If hiking in the woods, apply some sort of tick repellent (Deet in small doses or certain essential oils that have proven to be effective in repelling ticks)

3.) After spending time outdoors, be sure to thoroughly check your body for any rashes or red spots (even if they aren't bulls-eye they can be suspicious)

4.) Don't downplay or shrug off ANY suspicious symptoms. I mean it! Be suspicious of flu-like symptoms, especially in the summer. Be aware of anything that might feel off or not going away after a few days of rest/treatment. Even if it's nothing, it's better to be overcautious and get tested if you are even a little suspicious than to shrug it off and let it potentially get worse and harder to treat. Lord-willing the medical community will make strides in their ability to test and detect Lyme disease so more people can get timely diagnoses, but the first step is always being aware!

5.) Keep your immune system STRONG through a healthy lifestyle (ideally a balanced diet, somewhat regular exercise, hydration, proper rest and personal hygiene). If you are already healthy, you will be much more successful in fighting off any sort of Lyme infection you may contrive. There are no guarantees, of course, but it's a proactive way to be prepared and equipped to fight off bacterias that may try to invade your body.

To those of you who read this whole page, thanks for tuning in! If you want to keep up to date with more Lyme disease research or policies, the best resources I recommend are:

International Lyme and Associated Diseases Society (ILADS)
Global Lyme Alliance
LymeDisease.Org