Eating Issues

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. 

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

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. 

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

Vision Test

EDITTED TO ADD:  On January 28, 2013, a doctor tested me with the Shoemaker Vision Test, to which she said I failed miserably showing that I had neuro-toxins. 
 
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 
They have some vision tests online that you can pay for…they put them up, I believe, about how mold issues affect you.  That said, I have seen some of the colorblind test pictures that I remember we used to do in school when I was a kid…and perplexingly, cannot see parts of them…or make out the numbers well.  So I will put here and describe what I see.
 

 

 

This one I cannot make out most of the first number, some rounding on the top and round on left side so it could only be an 8, the second number I see clearly and is a 1...so 81.

 

 

 

This one I can make out some red dots, but cannot tell a number.

 

This one I can just barely make what looks like some curly-qs at the bottom...but can vaguely assemble the pattern into what I am guessing is 45.

 
This one just looks like a crazy collection of colored dots...no discernable pattern that I can tell.

This one is clearly 42.

 

This one I can see the "2's" in all but the third on (lower left), the second one (upper right) is somewhat more challenging. 

Visual Issues

Everyone's Lyme Disease affects them differently, this is how mine are affecting me.
 

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 

 

Double Vision…although I would call it triple vision, these photos depict close to what I see when looking at things.  I think these images are good and (hopefully) helpful for others (like doctors) to better understand double vision issues…because it is not really like you see two or three moons…you can clearly tell what is the moon and what is extra, so the old standby test of how many fingers am I holding up doesn’t really cut it…because you can tell what the real object is…and my brain readily compensates for this.  I believe that my brain devotes most of its energy to compensating for this.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 

Glow Around Objects…although this photo is taken at night with an obvious light source, which I do get this sort of halos around lights…but this is not what I mean.  It is as if the objects I look at sometimes seem like they are more illuminated and in that give a residual halo or glow.  It happens during the day, I notice it more outside…and at times it is like colors also seem more vivid…like the rich, deepness to the blue sky…or the sharp contrast with a white birch tree…and in that sharpness the white on the birch trees seem to give off a glow.  I am not sure if I am noticing this because the rest of the time colors seem so dull…but it seems to me more-vivid than normal.

 

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

Glared Vision…as though there is a subtle white haze…it reminds me, or rather my reaction to it, reminds me of the glare that happens to a laptop screen when you are outside with it…a part of you wants to wipe it away, to clear your vision so you can see again.  So it is not like you can’t see…I can, I can identify the images, but it is burdensome mentally…like for this to be overcome to do so is at a cognitive cost.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

Color Dullness…on very rare occasions, color will take on an intensity that is more-so than normal color, but for the most part my sense of color has been dulled.  This is the hardest symptom for me to notice, especially to link as causative to my experience of what I see…but the effect of the dulling of color has been that I just don’t look at things much.  Like as a drive down a street of buildings, I *know* these buildings in my mind…but I do not look at them…remembering instead of processing them.  In ways, this helps ease the cognitive load from my visual issues.  Where it hurts is shopping…the isle is like a wall, a whole…and then I must overcome this to see individual items.  It effects my selection…I am less interested in selecting things…they lack the appeal that they once had.  If I don’t look, but instead rely on my memory of a food, then I can be attracted to it…like I will remember eating mushrooms and be attracted to getting them…but looking at them on the shelf with dull color I don’t, my brain doesn’t, necessarily see them as food…if that makes sense?

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

Water Vision…occasionally it will be like there is water between me and what I am looking at…and it will move like a gentle rain on a smooth surface.

 

This is similar to what I call “Static Vision” (which I think is something different) where my field of vision reminds me of static or “snow” on old TVs…but different.  I can’t find a picture of it, but it is like if you printed an image on a piece of cloth…and behind the cloth someone took their fingers and sort of poked into it moving them around a bit…and in the pockets it is more like digital pixels rather than an image, and those pixels move like the static/snow on the old tvs.  This is most the time how my vision is…most of the time I am able to tune it down…or my visual brain compensates for it somehow.  It is worse the less light there is.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

Lightening(?) in field of vision…Not sure what you call it or why it is there…but I get what looks like a lightening bolt, jagged lines, that split my vision in half…it pulses quickly…and although I tend to not fear things or worry, this bothers me and I feel like something is wrong when it happens…like I am going to have a seizure or something.  But it will eventually pass.  It comes and goes.  I will have long stretches where it never happens and then have short stretches where it happens quite frequently.  Sometimes it will just happen once and then not again for a long time.  When a lot happen together, like 3x in an afternoon or 5x in a day, that is when it bothers me…and I get a little disconcerted about it….again, my fear is a seizure which is I can only guess because I had one once so that is what my brain connects it to.   But again, it passes so I don’t do anything about it.
 
The first picture shows better what it is like…only the jagged line sort of cuts and stretches the image in the field of vision and makes lines where the image is stretched.  The second picture really does not depict it very well…and it covers much more (is more wide) of the field of vision.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

Floaters…of course, we all have them I believe…only rather than on a day that you lay there looking at the sky…I have like a thick film or glaze that moves over my eye…which I think accounts for some of the visual disturbances I experience.  I will have to get other pictures and come back and describe this one better…

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

Spot…I also have a spot, similar to this only darkened…like a dark brown spot…somewhat in the center of my left eye…I can see it even when I shut my eyes.  It is small, and generally does not affect my vision…or my processing of visual images…my brain tunes it out.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

Visual Processing Issues
Whereas the weird quirky things of my visual symptoms listed above are not a significant bother to me, meaning I can cope with them in my daily life without significant hardship, that said, it is the visual processing issues that I will attempt to describe below, that pose the most hardship and interfere much more greatly with my ability to function in life.

As a brief description, it is as if in my attempts to process visually what I am seeing, it seems to me as if my brain is sometimes not able to keep up with things.  In addition to what seems like an issue with my visual cortex, I often have a hard time recognizing or making sense of what I am seeing.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

 
Streaking of Images…the first picture shows better how it is…the second picture, however, gives you a better sense of how difficult it makes it for me to navigate through places and visually process what I am seeing.  This makes me have to rely on my memory of what things are.  So, for example, if this was a mall that I visited regularly, then I would know from memory (rather than from sight), that the store on the left is the one I go to.  But, if this were a place that was new to me, that I had never been to before, it poses a significant challenge to find my way to a specific store…and quickly becomes cognitively overwhelming…so much so, that unless it imperative that I go someplace new (like the other doctor my doctor is sending me to) I no longer attempt to go new places.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

 
Latent Imaging…this is hardest to explain how it impacts my ability to function, but it is like as things move the instinctual part of my brain almost reads it as something new to be figured out (ie like the part that decides if it dangerous of not) and a large chunk of my cognitive power is immediately devoted to figuring out what it is, which is mentally exhausting and distracts me from whatever it is I am doing or from whatever thought I am trying to hold in my head (like to get some potatoes for instance).  It reminds me of like when you wave a feather in front of a cat…it HAS to look at and fixate on it.  At times like this, like when I am trying to talk to someone or trying to do the grocery shopping, I try to remind my brain to just take on faith, like in the picture above, that it is the man’s leg…that that is normal…but my attention will be drawn to it anyways and it is very hard to get my attention off of it to do what I need to do.  Although I think I do admirably with it, this has been the hardest visual issue to overcome and still function despite…it has also been the hardest to hide from people.  Most noticeable in the pool during physical therapy because people move, the water moves, different things are going on…however, like at the pool, where something is a consistent matter, I can to an extent shut it off…like my brain is more willing to accept on faith that it is the water and I am fine and not trigger me as much…but, the drawback is, is that then I don’t see/process the water…like a blind spot of sorts…if it was wavy or still or what else was going on in the pool that day (even if I looked at it or my attention was caught by it) I probably would not be able to tell you because I have selectively turned that input off…so it never registered.
 
Although in my limited daily life I am, I believe, fairly safe and am for the most part able to appear as though I am functioning…these visual issues and the significant cognitive overload from them and the way in which I shut down does make me feel vulnerable.  For example, the first trip to the Courage Center they had me fill out a bunch of forms which became overwhelming and the walk to the locker room just far enough to exhaust me, I stood there starring at a shower curtain so completely absorbed in trying to figure out what it was that I likely would have stood there for hours…and if someone had come along and told me to do something or go with them I would have done it, I wouldn’t have been able to know not to.  Thankfully, my daughter was with me that day.  Or the day we were trying to find the records room at the hospital downtown where the maps on the wall made absolutely no sense…I just sat on a bench trying to make some sense of things…had I been alone…random people talk to you there…I would not have been safe alone there like that.  So my quiet and limited life makes it seem like I am more functional and more able than I truly am.  Which is good in many ways, but if things were to change, for example, if my mom were to go into the hospital…or if I could no longer care for her and had to live somewhere else…or if I had to go to different doctors in places I hadn’t been…I would be unable to manage.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 
Stop-Frame Imaging…when my brain’s ability to process images is it is very bad, then it is as if my brain skips frames and I see like stop-imaging…like the individual frames in animation.  Although when this happens, I am usually exhausted to begin with…but will become extremely exhausted and usually just go to sleep.  If I am out, I will immediately not feel well, become nauseous maybe motion sickness…and just need to stop and shut my eyes.  At this point, I am functionally unable to navigate by myself.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
 

This is very much like how I see the world…

 

…and I do function despite the difficulties of my visual issues.  I hope this will help you to understand what I mean when I say that I am ok going to places and routes that I know, but to go down a new street, would become a tremendous cognitive load…which, on a good day, I could probably do…but there probably would be no reserve left in me to understand, for instance, what someone was saying to me, or function well afterwards…like in going to an appointment in a new place.  Even places that I regularly go, like my doctor’s appointments, there is a significant cognitive load and my capacity is diminished by the time I get there…even sitting and resting, the constant people walking by, bits of conversations that they have, the various movements they make are exhausting.  I cannot shut off (yet) my brain’s desire to understand what it is seeing…it seems to me that this is instinctual and hard-wired in.

 

Even though I may appear at times unprepared, significant preparation goes into preparing for appointments…I make lists of questions I have or things that need to get covered.  I think about what I will say.  I go over it in my mind many times…there is a threshold of amounts of times before it is secured in my mind but I can never remember how often.  While the questions I have are very important when I am at home and in the context that they are…by the time I get to the appointment I am exhausted enough that I no longer know why they are important…only that they were…I manage to remember about a quarter of what I hoped to cover…and I often do not understand what my doctor is saying as an answer.  I walk away with maybe two to three bits of information from the appointment.  I suspect that this must contribute to some level of non-compliance or things taking much longer…but it is hard to know because I don’t know what I missed.  It could also contribute to mixed signals.  Like sometimes she will tell me to think about a test and I figure I must not have communicated that I wanted the test…or her surprise when I succeed in remembering at a future appointment to ask again about the test as if she did not think I wanted it.  I know, I can pick up enough from signals, to know that I am not communicating very effectively…and that very little is being produced from communication…but I am clueless to what or how or the nature of that or how to go about fixing it.  Communicating and processing what I am hearing is another cognitive load…as this is how my vision interferes with or contributes to my dysfunction.

 

Also, I have noticed, that I will often not look at a person’s face when I am trying to say what I have…how would you say…scheduled to say…like my list of what to tell the doctor…if I look at her face, the subtle movements will pull my attention off what I am trying to say, and then am lost.  It is the same for when I am listening.  If I am looking at the person’s face when they are talking there is a very good chance that I am not understanding what they are saying.  At times, I may even be able to repeat what was said, but it does not get secured in my brain enough to make use of what was said.  Again, I do better with people that I see regularly, because I can anticipate their movements and tune out the signals of.  Despite the fact that I used to be able to have the deepest of conversations with anyone, or that I used to give talks to groups, I now cannot really process what strangers are saying to me.  Although I think I do ok in looking functional, nodding at appropriate times, I am unlikely to be able to say anything of value or to have understood anything said to me.

-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

Introduction

As my condition progresses I find it increasingly difficult to describe what I am experiencing, even while I am experiencing it.  Because it is easiest for me to do things like this when things are quiet, as opposed to during an office visit, I thought to try to again make complete lists of the symptoms that I have for my doctors and interested others. Doing this also allows me to work on it when my brain is not as taxed, so as to be able to be more concise and clear.  It has taken me many days to complete each of these lists, I hope it helps you to better understand what I am experiencing…or why some things are so difficult for me.

Many Thanks,
Zen & The Art of Lyme Disease