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.
