Lyme and Our Weight

Lymies and non-Lymies alike can struggle with weight issues. But it seems like weight is a common topic among the Lyme community. Gaining weight rather steadily for what seems like no apparent reason or losing weight. Or a constant fluctuation of weight. What gives? Is there any particular reason for weight loss or weight gain?

Steady weight gain seems to be the most common affliction having Lyme disease. It can be extremely hard and discouraging for those that gain weight with no explanation or unable to lose the weight no matter how hard they try. And it likely isn’t your fault. Among Lyme patients, 80% show to have an increase in weight. EIGHTY PERCENT!

Some possible reasons for weight gain include:

Adrenal insufficiency and nutritional deficiencies. Very common among Lymies. This can cause either weight gain or loss, depending on what type of insufficiency you have. Having a vitamin D deficiency can contribute to weight gain. I should also note most Lymies with an adrenal sufficiency have been diagnosed with things such as Fibromyalgia or Chronic Fatigue Syndrome in the past, so maybe ask your doctor for some blood work to see if this sounds like you.

A common problem with adrenals is not working properly is cortisol. Cortisol is a hormone that is secreted from adrenal glands that regulates blood pressure and the body’s use of macronutrients. It also effects the release of insulin  and your ability to concert sugars into energy. It lowers your immune system responses. Having too much cortisol can make you gain weight. Too little can make you lose weight.

Stress can be contributed to cortisol levels.  I don’t know about you, but let’s be real here. I am an “eating your feelings” type of girl. Part of this for me is a psychiatric type problem, however, as I have had issues with food for years. I try to strictly adhere to my diet, but I tend to gorge myself when I get really upset. I have eaten 2 giant bowls of organic ground turkey and veggie chile, and dipped an entire family-sized bag of potato chips in them. I have eaten nearly entire jars of peanut butter. It happens 😉 With chronic illness, there is a ton of stress in every single aspect of your life. You, your work, your family, financial hardships… anything and everything. It should be said however, that with some people this has the opposite reaction and can cause weight loss.

Hypothyroidism. This means your body is either not making enough of the thyroid hormone, or the hormones are not going where they need to go for your body to function properly. This can be caused by adrenal insufficiency or a functional deficiency. With an adrenal insufficiency causing the hypothyroidism, it is much easier to diagnose and treat.

When the reasoning is a functional deficiency, it can become trickier to diagnose. Your blood tests can appear perfectly normal because the hormones are in fact, going through your bloodstream. But with it being caused by a functional deficiency, all types of bacteria: Lyme, co-infections, parasites (Babesia), fungi, and viruses will release toxins that can occupy your thyroid receptors and block the hormones from getting to where they need to go. Those bastards! Hypothyroiditis, can lead to many, many terrible symptoms and can contribute to weight gain.

Another thyroid issue that can arise is what is called Reverse T3 Syndrome. The main cause for reverse T3 issues is chronic infection. Ahem, Lyme? Everyone makes a thyroid hormone called T4 among others, and then it is eventually covered to an active thyroid hormone, T3. This is the hormone that controls your metabolism. There is also a hormone called reverse T3. If the ratio between the T3 hormone and reverse T3 hormones are too low, you will gain weight. Too high, and you will lose weight.

Your metabolism can slow for a variety of reasons. Hormones, diet, stress, medications, lack of sleep, lack of exercise. If you are under the circumstances that you were once an active person, and you find yourself spending more and more time on the couch. Your body begins to take a long time to process food and the excess that isn’t processed is stored as fat content, thus contributing to a weight gain.

Fungal infections such as candida and parasites are both common issues among Lyme patients. How does it relate to weight gain? When you eat a meal, which should be adequate to make you feel full, the parasites take over and eat all the nutrients from the food for them to grow and flourish, leaving you hungry and wanting to eat more and more. You will feel like you are starving because all that is left in your system is the “useless” crap”. When parasites take over, this is another reason for your metabolism not working properly, because your body is in “starvation mode”. So your metabolism slows to try to protect you.

Chronic infections can cause you to have an insulin resistance. Insulin resistance means that your body is not producing enough insulin to be capable of getting glucose to your cells. When this happens,  your body begins to damage the ability to convert the glucose to energy.  The glucose will remain in the blood stream, causing a elevation of blood sugar levels, which are sent to the liver. When this happens, the sugar is then converted to fat. Once again, the opposite can occur and cause weight loss.

Some of us can also be effected my dramatic weight loss, even to dangerously low levels. Some reasons include what was listed above as well as:

Hyperthyroidism, the opposite of hypothyroidism. In this case your body produces too much thyroid hormone. This can cause an array of symptoms on their own, but weight loss is one of them. Hyperthyroidism is often caused by an inflammation of the thyroid glands called thyroiditis. It cause your thyroid hormones to leak out the thyroid gland, causing too much thyroid to be in the blood.  Another reason is called thyroid nodules, which are lumps in your thyroid. I actually had a chain of these in my X-rays found in my neck. 3-7% of the American population have them, and fortunately, they are generally non-cancerous.

When your body has certain deficiencies, it can also contribute to weight loss. One reason for weight loss is a magnesium deficiency.

There are various types of anemia, some caused by deficiencies, and most can contribute to weight loss. I should also note that it is very common among Lymies to have some form of anemia. Blood tests are easy enough to be able to find if this is a factor, whether it is for lead, vitamin B12 deficiency, red blood cell destruction, or iron, as examples.

Some of us also just have zero appetite, or food literally goes right through us. Both ways. When you are on a heavy antibiotic treatment, sometimes nothing seems appealing to you. And your metabolism doesn’t end up slowing down like many. So you lose weight. But, you have to try to at least get what you can in, even if it is just very small portions throughout the day to fuel your body.


Here is a picture of me, showing how much I have lost and gained over about a 8 year span. It has been like this for me for many many years. As you can see, I have been on all sides of the spectrum, even more so starting treatment. I have been considered “obese” by doctors several years ago, as I was 180 pounds at 5’4″, lost all the weight (in an unhealthy way), gained most of it back, lost and gained once again, and lost again. No wonder my gallbladder had to come out! Common with dramatic weight fluctuation. Also rocephin.

I didn’t even notice the weight fluctuations until I saw the pictures that I had gained a lot of weight. I remember telling a friend in a conversation that I weighed 130 pounds and she was like “that’s great! You look good!”… and she was probably thinking, there is no fucking way she is 130 pounds. 

And she would have been correct. That was about a year and a half before my diagnosis. I was back up to around 170 pounds. I had a really hard time losing that weight even though I was beyond active and ate a healthy diet but eventually did after nearly a year. Persistance but it finally came off.

Weight fluctuations are just common among Lymies for the reasons listed above. It happens when your body just isn’t working the way it should. And you might have to work harder to get to your goals (within reason!), whether it is to lose or to gain. But know it is not just you that is struggling. It is a common issue for many with Lyme.

Once I started treatment, my weight dropped, then continued to drop. I eventually slimmed down to 105 pounds. After I stopped doing antibiotics when I got my PICC line out and waiting for my second line and working on clearing out my system, my weight has been coming right back on. And fortunately I am at a healthy weight now, around 130…. for real this time 😉

I guess the most important thing to focus on is doing what is acceptable to our levels of exercise (check out my blog “To Exercise or Not to Exercise, That is the Question”) , and eating a nutritious “Lyme friendly” diet and incorporating more foods that will either speed up or slow down your metabolism to get to a healthy weight. Address any issues you are having by discussing with your doctor if there is concern as to why your weight has changed and if you think there is a need for further testing.

Happy hump day!,,,,,,,

17 thoughts on “Lyme and Our Weight

  1. Wow, I feel like I could be you. I have several issues going on now since 2007. Hormone imbalance and at one point docs thought thyroid, adrenal fatigue, weight, malnutrition, psoriasis and a consistently low Vitamin D level with low iron. In the last 2 years I have been diagnosed with insulin resistance and carry two genes for gluten though I am not sensitive to it yet but I adhere to a gluten free diet. I was just told recently that PCOS and Lymes are suspected. My CD57 panel came back at 48 and my D is at 38 so they made me take a Fry test and I am waiting for results. I am wondering if you feel like since being treated for Lymes that any other issues you may have had were easier to treat or if they resolved on their own? As I stated before, I have been chasing my tail since 2007. Six doctors, $$$$$, and a mountain of supplements later I am wondering if there is finally a light at the end of the tunnel! I appreciate your blog immensely, thank you!

    • You need to keep up with the immune boosting stuff. You cannot attack Lyme very well with a weakened immune system, and Lyme will weaken it, first attacking things that might have already been issues in your body. Those supplements will help, and once you are treated don’t be surprised if new issues pop up. You’re very welcome!

  2. This was awesome. Good to know that someone else knows what I’m always talking about. People without lyme just can’t understand. Anyways, I was blessed. Thanks for your encouragement and your research.

    • You’re very welcome, Jordyn! It is extremely hard, especially when you find yourself spending a lot of time on the couch. Once I get the okay, I am hoping to try to do beginners yoga classes.

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  6. Wow! Thank you I just got diagnosed (after 2 years of feeling like I had the flu 247) I have weighed between 110-125 my whole life now I’m 140 and can not seem to loose or gain it just stays…. I had my 3rd baby 2 years ago I gained 25 pounds, I delivered at 150. When I went home I weighed myself I was 137 about a month later I was back at my delivery weight, exactly! It’s driving me insane! What has worked for you?

  7. It makes sense that Lyme and other chronic infections with affect metabolic pathways – chronically ailments eventually affect everything. Metabolism is a a fascinating aspect of our bodies that connects so many things. Our immune cells metabolize pathogens, our cells metabolism proteins, fats and carbs that make their way out of the digestive system into the blood stream, and if we cannot metabolise properly, then our cells don’t get fed (but possibly, the infection does).

    You look great! Keep it up 🙂

  8. Thank you for this detailed blog! I’m wishing you are healthy now and your body is functioning strongly. Nahla

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