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11 Things I Wish I Knew When I Was Newly Infected With Lyme Disease

By Patrick Plum

If I could go back in time and talk to myself as soon as I found out I had Lyme disease, that would have saved a lot of heartache.

The thought of time travel has always been very intriguing to humans. I’ve often wondered what I’d do if I had access to a time machine. I’ve been battling chronic Lyme disease for a few years. I wish I could go back and prevent myself from getting bitten by the tick, even though I’m not totally sure when or where it happened. I was diagnosed about two years into being struck sick with some sort of “mystery illness” that was making me sicker, and more scared, every day.

I always thought it would be interesting to talk to myself a couple of years ago when I got the call that I had Lyme disease and a host of co-infections. However, let’s be real. If I would have talked to myself, that would have given doctors more reasons to call me “crazy!” Maybe this is you, or maybe it’s a loved one’s current story. Until I can find a way to travel back in time and talk to myself, maybe I can use what wisdom I have to talk to you, in the present. The war that’s about to take place against one of the smartest bacteria known to man is a hard war to fight. It’s your enemy, and it won’t go down without a battle unlike any you’ve ever fought.

1. Get ready to be a fighter.

You will understand your condition better than most people. Doctors included. You’ll go through a myriad of diagnoses that are of no help to you. They might tell you that you have chronic fatigue syndrome, fibromyalgia, generalized anxiety disorder or a host of other illnesses that have no discernible beginning and, therefore, no end. These are too often just a reason so they can stamp a diagnosis on you and get you out of their office. Worse, it’s a reason for them to stop looking.

They may tell you the reason antibiotics seemed to help was because of a placebo effect. You just “thought” they helped. They may pull your loved one out into the hall to convince them you are making it up and tell them that supporting you is enabling you. They may tell you to stop obsessing over Lyme disease – after all, your test was negative. Kindly excuse yourself from the “kiddy table” and don’t go back – after all, you’re the kid who wants to start a food fight in their eyes anyway…

Family and friends will mispronounce your illness and may not take the time to research it, even if they have the power of the internet or a library. When family members call it “Lymes,” you’ll get mildly annoyed. When doctors and nurses do it, you’ll get downright scared. Just expect that you are your own health advocate. Many so-called professionals are torn on not only the definition of the disease, but how to treat it. Know the Lyme-literate doctors from the illiterate, even if they don’t know the difference themselves.

2. This disease may end some of your friendships. 

Friends may leave. Let them. Welcome new people with open arms and close the door behind people who don’t want to be there. It’ll be your choice later if you re-open the door when the weather inside is a little more mild and suitable for them. If you have a significant other, educate them. Let them learn as much about this illness as they are willing. They’ll need it to understand you and your journey toward health the best they can. Lean on them for support. This will make your relationship stronger if you let it.

3. You are a warrior.

You’re about to begin the toughest war of your life. You may physically feel like you are dying sometimes. This is the enemy losing the battle, even though it may feel like you’re the one losing. It can be slain, but it won’t go down without a fight. Sometimes winning and losing will feel the same. Remember: soldiers aren’t always strong and heroic looking. Sometimes they are bloody, weak, wounded, tired and close to waiving the white flag in defeat. Don’t! Never forget, soldiers don’t fight alone and neither should you. Find a person to carry you when you feel like you can’t go on (emotionally and maybe physically sometimes). Find a whole squadron if you’re so blessed to have these kind of people in your life. You’ll need them!

4. You may feel alone and isolated.

You’ll hear people say things like “you don’t look sick!” That will be a mystery since finding the energy to take a shower today seemed like running a marathon. Grocery shopping will be as stressful as finals week was in college. Find other Lyme warriors. Both new to the fight, in the midst and veteran survivors of it. Other people can’t feel what you feel unless they are dealing with it themselves. Depression, anxiety, anger, frustration, mood swings and panic are all daily struggles. Expect them. The enemy has invaded your central nervous system so your body’s “normal” will not be what it was before… for now.

5. Arm every system of your body for combat. 

This is war! To ensure its survival, the infection takes over multiple systems of your body. Each person is affected differently, but most people must support their thyroid, adrenals, immune system and so on very aggressively. Some people report joint, heart, brain, eye or lung symptoms and complications. It literally can affect almost every part of your body. Address them appropriately and don’t let anyone tell you that you just have to live with it. However, make sure your doctor is in the fight too, not just “managing” your symptoms. You wouldn’t expect a gardener to replant a garden repeatedly while watching a rabbit continue to eat his crops, would you?

6. Don’t settle for sub-par ammunition and fuel.

Eating a clean, organic, sugar-free diet is just as important as taking medication. Do not separate eating well from taking medication or supplements. It is equally important to fight disease with your diet. Don’t arm your troops with squirt guns when you need missiles. As the saying goes, “Every time you put a piece of food in your mouth you choose to fight disease or fuel it.” Many people may develop food and chemical sensitives as well.

7. Avoid subjecting yourself to “friendly fire.”

Seek out doctors who are not only Lyme-literate, but who believe you. Lyme disease can be a somewhat controversial diagnosis. Acute, or brand new Lyme, is relatively easy to diagnose and treat. Its existence is rarely disputed. I often compare acute Lyme disease to a Chihuahua. Chronic Lyme disease is an angry, hungry and unpredictable Rottweiler. Both are called “dogs,” but they are very different in how you’d approach them. Some physicians struggle to grasp that chronic Lyme disease even exists. You and your body are all the evidence you need. You’ll have enough stress and pressure from fighting the illness, so don’t subject yourself to any of the ignorance that surrounds this debate. Find a doctor who’s on your side and won’t hit you with any friendly fire.

8. There’s no “one size fits all” way to victory. 

There are numerous theories as to how to eradicate the illness. Research, research, research. There’s no shortage of ideas from different medical practitioners on how Lyme should be dealt with. Every doctor is different and so is every patient. What worked for someone else may not work for you. Also what didn’t work for them may prove to work well for you. Plan to go slow and don’t try too many things at the same time. Certain supplements can hinder absorption of medications and visa versa. You’ll be tempted to hit this with everything you have. Slow and steady wins the race. Make sure you’re tolerating each medication or supplement you are recommended before starting the next one. Use your energy sparingly. Some days, a shower and making yourself meals will be more than you have energy for.

9. Treatment.

The battles you’re about to face are just as emotional as they are physical. Therefore, make sure you’re dealing with both as necessary and appropriately. Don’t deny any needs you have and don’t be afraid or hesitate to ask for help. Add a group of supportive people to your arsenal. You’ll need them when you’re surrounded in enemy territory and want to surrender. Accept emotional roller coasters and “rage” as part of the illness, but make sure you have outlets for them. An unfortunate reality is that quite a few people battling Lyme disease are so crushed by the isolation of this and take their own life. Put in safeguards in the form of allies in your life to help you fight this battle.

10. The financial aspect.

Expect that even if you do everything right with your treatment, you’re probably going to have to spend a lot of money. As I mentioned before, some doctors don’t even believe your illness exists. The CDC has set out certain parameters on how long someone with Lyme disease needs antibiotics and how long they’re permitted. Once you’ve reached that amount of time, your insurance company may refuse to pay. Also, most of the alternative protocols that help with your symptoms won’t be covered, as we are a Western medicine-driven society. This may discourage you, but you may soon feel that you’d give up everything else in your life just to grasp what it feels like to be a healthy individual again. After all, it doesn’t matter what you have if you can’t ever enjoy it.

11. There is an end to this. 

Keep a symptom journal. It’s a long journey. Some symptoms will disappear so slowly you may not notice they’re gone. Sometimes a quick look at how far you’ve come will be the only way to seem hopeful when you’re feeling under attack. Sometimes you’ll see the light at the end of the tunnel, other times you’ll worry you’re stuck with this forever. Getting to a symptom-free state is absolutely possible. You’ll get there. Treat aggressively, take breaks when your body needs rest and do everything you can to keep a positive attitude.

I can’t promise this war will be easy, but I can promise it will be worth it. Remember, you’re fighting for peace in your body once again and that can’t exist with you and Lyme disease cohabiting.

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Photo via demaerre on Getty Images