When you are sick there is no greater let down than thinking
you have the fix and then it turns out not to be the fix.I thought I had a reasonable plan: I brushed
my left leg (the numb and dragging) leg multiple times a day with the hopes of
restoring sensation, I wore a weight on my ankle to force my hip and thigh to
work harder to pick my leg up, I wore braces to prevent as much of the movement
as possible, I held and squeezed rubber balls to save the knuckles in my
fingers, I learned creative ways to push my hands in my lap and clinch my teeth
to hide the absolutely mortifying movements the best I could, I envisioned the
day when the movements would be gone (oh boy did I envision that day) and how
proud I’d be to have found a way to heal myself.
However, in the end, what I found was that I had a taurine deficiency
(taurine is an amino(like) acid that we normally make), who’d have thunk.Worse, I asked both my doctors about whether
I should take taurine, neither advised it (shock)…but I did it anyways…and THAT
turned out to be (for the most part) the answer.
It did not work right away…but I did feel slightly better on
it the first day which was encouraging enough for me to continue.Over the course of the next couple months no
one (except me) noticed the movements anymore…and now someone seeing them might
just think I was a little restless.I am
sooooo relieved.That said, the feeling
of motification remains.To survive the embarrassment,
because being on my own I had to go out to get groceries, fill rx’s, and go to
dr’s appointments…I stopped looking at people, it was just too heartbreaking to
see their looks and be constantly reminded of how fall from human I had fallen.
I still don’t look at people…and I suspect that healing the impact this illness
has had on me will take some time and loving patience for my tired soul.
The taurine calmed the too-much-electricity feeling of the
movements…which gave me a greater ability to stop it, and to stop it for longer…without
too much of a consequence for doing so. In addition to the taurine, I take a
medication called Baclofen which is a GABA(like) drug.To be precise, it is a GABA with a molecule
added to it to confuse the neurons into absorbing it.The Baclofen reduces 90% of the tightening
(muscles, tendons, tissues).Together
these two things have significantly reduced this issue.The diagnosis is a GABA/Glutamate imbalance
where I make too much glutamate and not enough GABA…to which the Baclofen
significantly helps.My doctor says
(although I am not sure I agree) that this is caused by high aluminum levels
(which I have) caused by Lyme bacteria die off (the part I don’t really buy,
but can neither refute).I guess some
doctor somewhere (Yasko) said it so it must be true (for her).That said, I greatly appreciate my doctor and
do not have a better answer at this time (even though I am pretty sure there is
one)…so that’s where we are for now.
In January 2013, when my doctor switched my antibiotics for
Lyme to Cipro and Clindamycin, which are both famous for getting into the deep
tissues including tendons and bones, but do not cross the blood brain barrier
very well. Despite not crossing the blood brain barrier well they did take away
the majority of pain I had been experiencing. However, two days after I started the Cipro,
my neurological symptoms flared and among other things, I began having tremors
and dystonia (unwanted movements).The
movements were pretty severe at first and would often pull so hard as to feel
as if my bones would break. At first dystonia lasted only a week, then was gone
for a week, and then back.When I
stopped the Cipro and Clindamycin, the dystonia stayed for good.
In the beginning, the dystonia, for the most part, affected
both sides of my body equally...except for a muscle in my back and neck that
affected only the right side.My feet
and legs would curl up, my hands would curl my fingers in, and my mouth pulled
down on the right side, my neck would pull my head almost down to my shoulder
and the muscle in the back would pull my shoulder up.The movements are generally quieter when I am
rested and tend to get worse the more tired I become.
However, by simple virtue of having to live with them, I
began to find ways to quiet them.For
example, if I reached for a cup, the dystonia stopped…so intentional movements
would interrupt them.However, it is
very hard to do intentional movements all the time…and, as was often the case,
the more I tried to quiet them it would seem like the electricity would build
up and create more movements for a while.Like, if I went to an appointment and was trying very hard to keep the
movements quiet, when I left they would go wild for a while until the energy
was dissipated.
That said, since I used my right side more than the left,
after a month or so, the right side started to become more quiet than the
left.Indeed, one of the compromises
that I had to make when using the right side was to allow the left to dissipate
the energy build up caused by the right not-moving.However, at some point, I realized that this
was like exercising only one side of the body…and got that I would need to do
the same with the left side…that I would have to use it more than I had been
doing.
Ironically, my left leg moves less than the right, but
again, I use the right more often, like when driving.Also, as my left leg which used to tingle
like pins and needles a lot, is now mostly numb…so it is a weaker leg than my
right and tends to drag…so I need to count on the right leg more.
So…my plan of action is to do what I did for the right side
now with the left and see if I cannot get the movements on the left side to
quiet as well.
What worked for the right arm was to push it against
something, like my leg.As well, I used
it more, like for driving. So I am trying to now push the left arm against my
leg as well as trying to use it more…and see if I cannot balance it out.
Because my left hand curls my fingers so hard, the nerves in
my knuckles have become extremely sore.However, I have found that if I hold something in my left hand it can
prevent the knuckles from flaring.
I have also noticed that if I provide a sensory input to
some of the areas…like rubbing the back of my left hand…the sensory input can interrupt
the movements. Not only is this giving my right hand something to do, it is temporarily
confusing the left hand.
Regarding my feet, and even perhaps my left hand, I have
been considering using the product known as Theratape to see if I cannot come
up with a way to tape to feet and hand to perhaps provide that sensory input to
quiet them. Was also thinking of figuring a way to use this for my neck muscles as well.
Oh, and chewing gum I have found will quiet my downward lip
movement on the right side of face...which is nice.
These tremors began within days of beginning the Cipro, an antibiotic, famous for getting deep into tissues including tendons and bones. When my doctor first began these two new antibiotics I was grateful for her genius in coming up with them and I have to admit that they took away 60-80% of my pain. However, as good as these were in relieving my pain, my neurological symptoms increased to levels worse than before. I believed that this may have been due to them not crossing the blood brain barrier and that the Lyme was exacting revenge. However, my doctors suggested that it could be a side effect of the Cipro...and we are both hopeful that this is true and that these tremors are not permanent.
This video was taken 5 days after I stopped the Cipro, uploaded to Youtube and posted heer 11 days after and they are worse. Time is always a great healer, and I have become more familiar with how to cope with them. They have also increased my sense of humility and humbleness ten fold. In a bit of irony, looking back on the days when all I knew was Fibromyalgia and how everyone in those groups wished that people could see their pain...well now everyone sees my pain, and this has been an excelent reminder of being careful what you wish for.
The other day, a non-Lyme doctor whom I see stated that these are not-tremors but instead are dystonia (unwanted movements) and prescribed Cogentin, a Parkinson's drug (bless his heart). So far it has been somewhat helpful in relieving the harshness of the movement...I still move, just that it is slower and softer and not pulling or straining my tendons. The movement also have a tendency to freeze giving what I can only describe as the Buddha hand. It also paradoxially makes me feel really "chill" (cool, relaxed, almost pleasantly high)...apparently this drug is suppose to have the opposite effect to discourage addiction or recreational use.
Not really sure exactly what these are, they seem to be like
tremors only much faster.However, I
also have tremors when these weird shaky things quiet…so it is hard to say.
In January, my doctor changed my antibiotics, which crossed
the blood brain area, to two antibiotics which get into deep tissues like
tendons and bones, however, do not cross the blood brain barrier.Pretty much right away (2 days after starting
the Cipro), my neuro symptoms flared and it was as if the Lyme in my brain were
attacking back with a vengeance.Although I was taken off the two new antibiotics in February and put
back on the original two antibiotics, that cross the blood brain barrier, my
neuro symptoms continue to get worse.
These movements do not have any bearing on my cognition and
seem to be in a class of their own.The
worst of these symptoms is, of course, the dystonia as it is not only embarrassing,
it is also very painful…as when my muscles pull it seems to activate every
nerve in that area and often feels like it will break the bones involved.I take two drugs for this, Cogentin (a
Parkinson’s drug), and Baclofen (an MS drug).The Cogentin takes some of the violence off the movement…meaning that my
muscles do not pull quite as hard and thus makes it less painful.The Baclofen takes the stiffness and soreness
away and my body feels very good on it as though missing nutrient has been
supplied.
However, as the Baclofen and Cogentin kick in, helping to
quiet the movements, in the quiet new symptoms appear such as the tremor and
these weird shaky things.These weird
shaky thing are the second worse of the symptoms in this class.They are more pronounced the more tired I am
and can even affect me while, for example, reaching for something…whereas the
dystonia stops when I am engaging these muscles.
The third and last symptom is just the plain tremors which
are pretty much only noticeable when the other two symptoms stop…and like the
dystonia, tends to stop when I engage the mucles.However, recently the tremors have sometimes
been showing up even when I am doing something.
So, the fast shaking tremor-type thing in the video when the
dystonia quiets and the regular tremors that are now happening even when I am
engaging the muscles are new symptoms that started in March 2013.
One thing about being chronically sick and chronically in pain, is that you learn to live with a wide range of random, weird symptoms...and unless they tend to interrupt your life or require you to do something about it, one tends to dismiss most of what one is experiencing. In addition, due to my cognitive issues, I no longer can tell what is important or not. Rather, what I seem to think/feel is important my caregivers do not and many of the things that I think are of no concern, others find of great concern...so I just never know.
I have been experiencing increasing heart pains, or at least I think that they are heart pains, as well as waves that last about 20-30 minutes of it hurting to breathe. I have always had a healthy heart, low blood pressure, and tend to recover my heart rate well after exertion so I have never given my heart a second thought and have no doubt that the symptoms I am posting here will continue to be dismissed as a non-issue because my numbers, although very high and low to me, do not scream high or low to doctors. Nonetheless, it is something that is becoming more of a problem and is interfering with my day and again, I just don't know what I don't know about heart issues...and well, it is probably just something relatively stupid and super easy to solve.
Lately, the random "hurting to breathe" episodes feel like they are taking a toll on me...leaving me feeling worn out afterwards. And today, I felt poorly even before they started. It is hard (for me) to define this feeling poorly from the others...the only difference I can see is that my awareness does not diminish with this feeling poorly. As well, I have been experiencing a feeling that is like heartburn but is not heartburn (no acid reflux, nothing in stomach, just same type of pain) as well as a subtle pain in my left arm. Otherwise, I just don't feel well...suddenly tired, worn out, like i need to sit down/lay down/sleep/rest, and feel like it is an effort to breathe (although not like asthma). Again, I tend to dismiss this since I feel like this most of the time anyways. However, since I have been taking my O2 and BP readings, I thought to see if that would shed any light.
My pulse rate was in the 170s when it first started reading and then came down to the 160s and it stayed up there for a while. I couldn't get the camera on fast enough to catch the picture, having forgotten to turn it on first...and sorry for the shaking. My normal heart rate is in the 60's, 70's, and maaaaybe 80's, I had never seen it this high and even during challenges at fitness clubs (although I have trouble remembering now), seems to me it had been a challenge to get it up to 125. That said, I did not recognize this as an issue or a problem, although standing, not feeling well, I sat down. The second reading was taken when I was sitting down.
This was my blood pressure sitting down at 5 and 10 minutes after the initial oximeter reading. Still not feeling well, and feeling like I needed to sleep, I went and laid down as I often do waiting for these times to pass.
These were taken laying down at 15 and 20 minutes from the original oximeter reading, thankfully my heart rate had come down...although, I did not feel any better and I think I dozed off in shear exhaustion (I had not meant to).
The feeling kept coming and going all day...it was similar enough to the way I have been feeling for the last two weeks at least, but worse today. Again, I was disreagrding it because in a way it feels like what I thought was the "herx" reaction from Lyme treatment...where you feel tired and achy, like you have a bad flu (only you don't have the flu), which is exactly what I felt like today...really tired and run down (far more so than usual) and just thought the Japanese Knotweed that I had begun taking must be working. Anyways, because of the weird reading earlier in the day, I thought to check periodically...and these were the readings...both while standing...both while feeling very average for the day (in other words, not extra bad or extra good).
And so, for reference, here are two readings taken previously to show my typical high and low...all except the heart rate which have been elevated lately.
And this one is a more normal reading for me...this was taken laying down. Before being sick, my normal BP was 90/60...since being sick it has been 115/70...and again, my heart rate normally 60's, 70's and sometimes 80's.
So I know that Lyme is rumored to attack the heart...and although my overall health has deteriorated and my muscles have atrophied and I have very little stamina, I have been doing physical therapy regularly at the Courage Center which is the only thing that gives me any cause for concern over the new/sudden decline in my heart's ability to keep up. I am also on the two new antibiotics and have been experiencing a lot more new and difficult symptoms. My ability to understand this, due to my cognition being shot, is close to nil...so, for what it's worth.
Since the very first day when my symptoms began, I often
have periods where I just don’t feel very well.They come and go in waves and don’t usually last too long, however, I have
never really understood why they are occurring.
When I was first symptomatic in 2009, and desperately trying
to understand what was happening to me (because back then these episodes caused
me to faint), one thing that I found helped was what I thought of as “amping”
my adrenaline.To do this, I would pace
in an urgent manner as though I was late for something really important...and
this, oddly enough, would allow me get through it as well as to not-faint.Because the fainting, and horrible headaches
that I would get whenever I laid down, completely went away upon the removal of
my thyroid, I stopped looking into this.
One thought was that it could possibly be further endocrine
issues, however, my cortisol and adrenaline levels were normal…so beyond that, my
doctors and I really had no clue what could be causing these periodic episodes
of exhaustion. Despite seeing various endocrinologists throughout the years, none have been willing to do any further testing beyond the cortisol test which I had already had done. As well, I did not know enough about it to know what tests I should have pushed for.
Still, moments and waves of not feeling well would come
whenever I became quiet, when I focused intently on anything, or even when I
tried to relax (such as to meditate). Beyond the fainting, that had taken from me the freedom and independence of driving, this took from me the ability to complete my seminars, to really focus on what people or even my doctors were saying, and even to meditate. As my muscle began their horrible tightening, this also prevents me from relaxing them willfully.Eventually, I noticed that during these times, when I was focusing
very intently (probably because my brain wasn’t understanding very well and
attempting to compensate), that I had inadvertently stopped breathing…and
disconcertingly, was not getting any signal to breathe…no struggle, no signal
that something was wrong, nothing...and if I did not purposefully act to counter this, I would faint.In time I found ways to manually instruct my body to
breathe and circumvent any issue, but this still made it impossible to pay attention or listen in at seminars.
Although the removal of my thyroid completely stopped the fainting, much to my surprise and joy, and I was able to drive again...and, for a time being, felt again like my old self, this was not to last. Twenty-Thirty days after the removal of my thyroid, a
new issue appeared (although we did not know it at the time it was due to my
not converting the thyroid hormone properly)…I began randomly collapsing.Thankfully, the saving grace in this was that
I was mindless about it (meaning I had no thoughts during this time, like “maybe this is not ok” or “maybe I should tell someone or get help”),
so I’d just lay there waiting for it to pass and waiting for enough energy to
be able to get back up again.At this
point, it was clear that adrenaline had nothing to with it and attempts to
raise my adrenaline no longer corrected it.Thyroid function tests later revealed my RT3 levels at over 100 points,
and then over 150 points too high.
That said, my blood pressure remained low (115/70), although
high for me (normal 90/60), throughout all of this time…and I remained tired
all the time, made worse by exertion, randomly becoming out of breathe, random times my heart would race, and no closer to understanding what was
happening to my body.
2012
During the first half of 2012, because I was having such trouble converting the thyroid hormone and clearly getting sicker, my doctor began trying all of
the various thyroid medications during which my RT3 levels continued to
rise.Previously, I had done 9 months on
a T3 only regimen…however, because the pain started during this period
(September 2011), I had mistakenly believed that it may have had something to
do with being on T3 only.In an effort
to solve the mystery of *why* I could not process the regular T4 thyroid
hormone well (and why I made so much RT3), and because I felt it might be better to be taking T4, I sought
help in solving this medical puzzle at the Mayo Clinic in Rochester, Minnesota…which, sadly, was a complete waste of time/expense/effort.The doctor even cited in his report that
throughout the appointment I kept trying to bring the conversation back to the
RT3/Thyroid Conversion issue (which was what I went there to see him for).All he wanted to do was be
upset with me for being on T3 only…as if somehow forcing a T4 (and his belief
about how it should just magically work because that is what he had been told)
would somehow make it work.Anyways,
after trialing the various T4’s with my primary, including a really great one
called Tirosint (T4 with no fillers), it was clear that not only did I not make
enough T3, but that I was continuing to make too much RT3…and again my levels
rose to over 150 points too high…and again, I was very symptomatic and
struggling.
Although I spent a significant part of 2012 largely
bedridden, this was due (I believe), in hindsight, to pain and my utter exhaustion trying to
cope with such high levels of pain. Eventually near the end of the year, someone
suggested that I increase my thyroid hormone until I begin experiencing
symptoms of too much hormone (which for me is heart palpatations), and as it seemed
like a good idea at the time so I tried it.When I reached double the dose, two interesting things happened: one, my
pain levels returned to their original levels (8-9 on the scale of 1-10) which
although are high, were at least bearable…and two, I stopped sleeping all the
time. Although, I continued to feel not-well and continued to experience the
same waves of just, in general, feeling extra poorly.
To this day I have no reason or cause for why I experience
this.One small clue, though likely
unrelated to anything, is that there is a spot on my mid back…that when I lay
on my back and this is touching the table…or when people press on it, I will
also not feel well in the same way…and my condition rapidly declines.Indeed, this is the spot right about where my
muscle in my back randomly contracts pulling my shoulder blade about…on the
right side.Although, not lightheaded,
but very much like it…and although not like passing out, very much like if I
continue in that position that I will lose consciousness.People have noted that I get very pale and
become clammy, but that my heart rate strangely does not go up (as it would if it were anxiety), in fact it gets or stays slow.Again, just more mystery…although it could be
from pain as my back is mostly numb and so there could be a high level of pain
that I am unaware of on that point…other than that, your guess is as good as
mine.
2013
The other day, inspired by a friend who has been checking
his and posting photos, I purchased an oxygen reader and blood pressure taker and
discovered what may be behind some of what I am experiencing.
Here is a video of my oximeter reading at rest:
Although, at rest, everything seems ok, it is interesting to
note that my oxygen levels continue to drop.Even though it does not drop to a clinically treated level, I am not
oxygenating as well as I should be.
Here is a video of my oximeter reading while standing:
Standing, it is interesting to note that my heart rate
significantly elevates even though I had been laying down and resting just
seconds before.At one point, I was
experiencing the muscle tightness/contraction in my arm just above my
elbow...it was enough to disable the oximeter.In addition, I was feeling poorly standing there and it is interesting
to note that commiserate to how I was feeling that my oxygen levels were
low.Again, although it remains in the
90's and does not drop to clinical levels...is still clear that I am not
oxygenating as well as I should be.
Here is a video of my oximeter reading while sitting:
Not feeling very well from standing, I sat down and thought
to check my levels again because I still wasn’t feeling very well.Interesting to note that my oxygen saturation
is now at clinical levels AND that my heart is not, for whatever reason,
increasing to try to oxygenate better like it does when I stand.My muscle tightening/contractions continue to
periodically disable the oximeter.It is
now clear that I am struggling to oxygenate well and it is likely that this is
what is behind why I periodically just don't feel very well sometimes.
Despite my blood pressure being consistently low (which
doctor’s seem to think is a good thing even if it may in fact be contributing
to my feeling so poorly or the fatigue), and despite one really strange reading
at my chiropractor’s office in January, 2013 of 104/97 (which everyone seems to
be ignoring as a fluke), my blood pressure seems to me to be all over the place
depending on what I am doing.
Note: we did take the blood pressure
monitor to the doctors office and verified with three readings that it is
giving very similar results to the one in the office, so I am inclined to trust
the general accuracy of this meter.
To see if there was a difference between my blood pressure
laying down and/or when I was upright, I took these two readings within a
minute of each other or less.Note, that
I had been laying down for some time, then sat up and immediately took the next
reading.While typical orthostatic
intolerance is where one’s blood pressure drops when they get up…mine is
clearly doing the opposite of that.
Next, I thought that, like the oximeter, that there may be
some value in checking readings over time.These two were taken within five minutes of each other, starting at
least ten minutes after laying down.I would have taken more pictures, but I really wasn't feeling well and went to sleep.
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.
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.
