While everyone experiences their Lyme Disease a bit differently, for some (like me) it causes some interesting gastroinestinal issues. This list, that was drawn up at the request of my doctor, just focuses on how this affects my ability to eat. For me, thanks to Lyme et al., just simply eating has become an overwhelming challenge that I struggle with daily.
Although I struggled with low grade gastrointestinal problems and issues with certain foods for most of my life, eventually this resulted in me just simply feeling better and having more energy when I did not eat...so I didn't, at least not often. For nearly a decade before symptoms of Lyme began, I ate about 3-4 times a week. And when I ate, I ate healthy foods (usually salmon and asparagus or sushi and maybe a few apples here and there) and while I was always aware that I was eating very little, I was so healthy and vital...I did not get sick, I was thin, and I was very active. So, when I first became sick which, for me, came on as a feeling that I was going to faint, my natural first instinct was that it was nutritionally related. Doctor after doctor that I saw, I told this to and implored them for nutritional tests, but they completely ignored this as a cause. They didn't know what it was, but they were sure it wasn't food related. I continue to believe that nutrition, or lack there of, has played a role in my subcombing to Lyme.
For the first three and a half years of this illness I forced myself to eat at least a little something every day because I figured this would help. However, this caused additional symptoms, hardship, and issues...still I tried. Because of my connection with Phil, from the movie Fat Sick & Nearly Dead, I was a firm believer in the health restoring benefits of juicing...after all, I had seen it first hand. So, I committed myself to juicing...only, by this time, it made me immediately very sick. I have come to believe (the best theory that I have) is that the quick assimilation of the nutrients from the juice caused an immediate demand on my digestive system which my body was simply not able to handle well at all. I tried multiple times with the same results. At some point this was linked to possible adrenal issues. As I continued to share my belief in juicing with people, the idea got started on what about eating the 10 veggies a day? For a good while I counted myself out of that because I couldn't afford it, but as person after person that I knew was reaping the same benefits as those juicing the 10 a day, I committed myself to this...only now, not only did they make me feel very sick, my body had stopped digesting them. Interestingly, my folate levels are too high and i have often wondered whether this had something to do with it.
At some point, I was sick enough...I was in unbearable amounts of pain and just coping with the pain left me exhausted to the point that I was mostly beddridden and sleeping 20-22 hours a day...that I gave up my battle with food. Because I was on antibiotics, to reduce the risk of Candida overgrowth that can become systemic one is suppose to only eat vegetables and meat...but I just couldn't do it, it was just making me too sick. I stopped trying to eat and began to feel a little better because I wasn't adding GI issues in. Then after a few days, I would feel like I needed to eat...wasn't hungry...but needed to eat. It was an even more difficult challenge at that point to find anything that I would eat, everything turned my stomach. Eventually my daughter convinced me to eat some TV dinner-like thing...and I did...and I felt a little better for having eaten. However, I was very concerned because I knew that I could not keep my health up...or stay fighting...for very long on processed food. So eventually I just went back to eating fruits. Even though I do not digest many of them, they are about the only things I can reasonably handle that are healthy. However, and as much as I *love* fruit, even my favorites are unappealing and will often rot on my counter untouched.
Thankfully, the wonderful, angel of a, doctor I have now...and now that many of the most pressing concerns have been dealt with...she has turned her attention to my eating issues...hence this list for her. May it be, that she can help me find the way through this.
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The following is what I experience in regards to eating:
- First of all, I have an absolute lack of appetite, that includes not even having any desire for water, except for on the rarest of occassions...so I have to force myself to eat.
- I also have a general sense of nausea about 95% of the time that contributes to my feeling completely uninterested in food...the thought of food turns my stomach and I have to overcome this in order to eat. There are also visual issues that contribute to a feeling of nausea when trying to eat.
- When I do eat, I have trouble swallowing. After my thyroid was removed the shape/structure of my throat has never seemed the same. Whether it is neurological issues affecting things, muscular issues, or whether there are true structural issues (ie shape change or scar tissue) is impossible for me to say. However, they did find that the surgeon left staples in my neck (great).
- Part of what I experience is muscle tightness in my throat that gets worse on use…even my medium sized pills tend to feel like they are stretching the openning of my throat. Sometimes the pills get stuck, one place is as the back of my mouth turns into my throat and the other is down at the bottom of my neck where the small hollow is. As well, soft foods (like soft, mosit breads) will stick to the back of my throat and stay there as long as half an hour.
- Another part of the issue is tenderness, for example the medium sized pills often scrape/cut the back of my throat as they go down. I also get tenderness in my mouth, like the skin is thin and raw...food is like a foreign object there and the textures scrape my mouth and throat. Sometimes foods cause the skin in my mouth and tongue to sting...and sometimes my tongue will even bleed in response...just small dots of blood like my taste buds are bleeding.
- And yet another part is a lack of saliva that becomes more apparent the more bites of food that I take. Although, this would probably be more apparent on exam, since being on the antibiotics long term, I have developed a thick mucus in my mouth which I wonder if may be Candida...the same thick mucus is in my eyes, nose, and throat and can at times interfer with breathing or cause me to choke a little.
- Then there is this feeling of being completely full after only two or three bites of food, even foods that I am really enjoying eating or am hungry for.
- If that were not enough, then there is the pain that comes upon eating…even a drink of water can feel like a punch in the gut. My stomach often hurts soon after food is in it. Sometimes this is so intense that all I can do is lay there and cope with the pain (this is easily as bad as or worse than birthing pains and does not let up). Other times it is just enough to make me have to lay down and rest or sleep until it passes...although I can function somewhat then, I am completely miserable. Sometimes the pain is not as bad, but is still enough to make me regret having eaten.
- Then I swear I can feel food leaving my stomach and that can hurt with sharp stabbing pains. By myself I am more apt to cry out, moan, and double over. In public I am not very good at hiding it, I tend to flinch, get quiet, and have to breathe through and deal with it.
- This is followed by pain in various areas of the gut when food is in it...some of these areas hurt, others just make me feel very sick and even nauseous, sometimes it makes me feel like I need to pass out. If home, I will just lay down and try to rest or sleep through it. This pain is completely relieved by going the bathroom. However, for the last few years, I am never able to completely get everything out, so I only get partial relief. Although it was never this bad, this is one of the GI issues that most of my adult life and contributed to why I would only eat every few days, to give it a chance to clear my system.
- All that contributes to why I simply feel better when do not eat…and since there are so many issues with eating, on days that I am too tired, fatigued, not feeling well, or if my gut is particularly achy or troublesome, I tend to just not eat, sometimes I don’t even notice until a few days have past…and when I do eat, I really don’t feel well at all.
- NEW SINCE TAKING ABX...GETTING WORSE OVER TIME...Occasionally when I eat I feel like what I can only imagine is an inflammation…like hot, raw skin…usually it is just stomach and gut after eating or drinking…but has at times been all the way up my throat and even seems like my lungs…like the air from breathing felt like it was going over raw skin (like when you’d scrape your hands as a kid on the road) and was icy cold. It sometimes feels like some food burns my skin, but mostly is a sensation like a sip of wine...a warmth. Of all the negative sensations, this one makes me uneasy...and instunctively just feel like this is not good.
- And as if the pain and issues with simply getting foods into my system were not enough, many foods cause issues. Dairy will cause me to feel inflammed and to have greater pain for 24-48 hours after eating it. It will also cause me to become constipated and feel like rocks are slowly moving through my system. Wheat and grains cause bloating and contribute to a general sense of "unwellness" and exhaustion. They also make me feel emotional and helpless. Vegetables make me feel very sick after eating them. It feels like a serious blood sugar drop...like I am not able to support life...intense need to nap. Sometimes I will feel like my blood sugar goes up after eating and I feel a general sense of extreme unwellness that requires me to lay down and rest. The length of time until this passes varies. It can happen to foods that I can eat sometimes and not others. Coffee is one huge example of that. Sometimes I drink coffee and I feel better and have a higher tolerance for pain...other times, even in the same day, I drink coffee and I feel sick as a dog...having to lay down until it passes. As well, the list of foods I can no longer digest continues to grow…mangos, apples, celery, romaine lettuce, black beans, rice, cilantro, alfalfa sprouts, watermelon, whole grains, and nuts. I DO TAKE A PANCREATIC ENZYME WHEN I EAT FOODS THAT WARRANT IT...IT REDUCES PAIN AFTER EATING.
- My gut is another issue that affects my desire to eat. For most of my adult life it has been like I have to always contend with my gut. Before Lyme symptoms, coffee used to help me stay regular...which for me, back then, was water poo once a day. But, if I did not go then I would get constipated. Since Lyme, it seems like all I do is go...and when I am not going I feel like I need to go. Each day I go between 5 & 20 times...mostly in the mornings, sometimes in the evenings, but if I do not get it all out in the mornings, then I get constipated...and feel uncomfortably full and sour in my gut, feel like I need to pass out, and just feel unwell.
- SINCE STARTING THE CHOLESTRYAMINE I get organ pain...I do not know if they are related or is is just part of the natural progression of things. They can hurt with sharp intensity around eating...and also can hurt at night. It is not all of them at once, just one or two here and there. At night they hurt steady...heart beating and breathing makes it worse...is very intense pain. If during the day, I have a hard time not giving a small yelp...will often grab or press on area trying to relieve the pain. Sometimes it hurts worse to press on, other times feels better to press on and hurts worse when I take my hand off.
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