Sunday, September 30, 2012

Cross purpose supplements

My latest set of pill-popping dilemmas involves supplements. 

Until I started taking the antibiotic, I was taking a mineral (calcium/magnesium/zine) supplement at bedtime.  The magnesium was supposed to be helping with some of my muscle pain issues and with some sleep issues.   However, I'm supposed to avoid taking in any calcium for at least two hours after I take my antibiotic.  I have to take one dose of my antibiotic with dinner.  I often go to bed less than two hours after eating dinner, since I get home after 6 most days AND the Adderall makes me unhurried about eating any way.

I had been taking St Johns Wort in the morning, since it doesn't like calcium (which I had been taking at night).  So, the first change I made was to switch those around.  I now take the St Johns Wort at bed and the calcium in the morning, at least an hour before breakfast so that it doesn't interfere with the antibiotic.

I am taking two different probiotics to help make up for the good flora that is being killed off by the antibiotic.  I need to take these on an empty stomach so that they hang around in my system and don't just happily eat the food in my stomach.

I just started taking a supplement (serrapeptase) that helps the antibiotics work by attacking the biofilms that the Lyme spirochettes surround themselves with.  It is yet another pill that I need to take on an empty stomach.  Since I am not sure how it will impact the efficacy of the probiotics I am taking, I'm trying to take them an hour apart from each other.

Also, I try to take my Adderall as soon as I get up in the morning to help wake me up and make sure that it is mostly out of my system by the end of the day.

Basically, this means that I'm taking five pills when I get up and then two pills an hour later.  Which also means that I cannot eat breakfast until at least two hours after I get up.  At that point the Adderall has kicked in, so I may not be all THAT interested in breakfast.  However, I have to have a good sized breakfast to take the antibiotic.  (See previous post on the cross purpose drugs.)

Sometimes I think about the amount of pills I take and remember Joan Cusack's character from the movie "Toys".  Turned out that she was a robot of some sort, but at every meal she would take a bunch of pills and put them between two slices of bread and eat her "sandwich".  Not a very popular movie, so I couldn't find a YouTube clip to share unfortunately.

Wednesday, September 26, 2012

Cross purpose pharmaceuticals

In order to combat my Lyme disease, I am taking two hefty doses of an antibiotic that must be taken with food.  If you don't have a good amount of food in your stomach it is highly likely that you will vomit.  In addition, I have a powerful NSAID that I should take several times a day that has the same warnings.  That one I have actually experienced twice.  The first time because I assumed that the warning was on the same level as taking Ibuprofen, which I can gobble up on an empty stomach most of the time without any ill effects.  The resulting nausea and vomiting from my mistake taught be a lesson about heading warnings on prescription pharmaceuticals.  The second time it happened it wasn't because I had taken the pill on an empty stomach.  I learned that "with food" meant a SIGNIFICANT amount of food. 

Part of the disease symptoms that I have to deal with is my constant sleepiness, regardless of how much sleep I get.  I went through a sleep study in July that showed that there is nothing abnormal, or 'non restful', with my sleep patterns.  I was labeled with Idiopathic Hypersomnolence (meaning:  no known cause sleepiness).  To fight the sleepiness I started taking Adderall.  It's an amphetamine.  Amphetamines sap your appetite.  Part of me was looking forward to taking this in hopes that it would help me shed some pounds.  Unfortunately, I'm taking several drugs that are at cross purposes.

The Adderall diminishes my appetite.  I can easily skip breakfast when I'm taking it.  On the other hand, I need to eat a reasonably solid breakfast and then dinner to take two of my other drugs.  I have cut down on my snacking quite a bit since starting the Adderall, so I have dropped a couple of pounds.  However, it does kind of stink that I can't take full advantage of one of it's side effects to REALLY drop some weight.

By the way, when I get ready for bed, one of the drugs I take is a muscle relaxant to minimize the stiffness and potential for muscle spasms that can happen when I sleep.  I have actually injured myself, causing inflammation that takes days to weeks to recover from (see yesterday's post about injury recovery).  Usually the Adderall is out of my system by bed time, but the muscle relaxant is at cross purposes to it as well.

"Better living through chemistry" right?

Tuesday, September 25, 2012

What is your pain level right now?

As a chronic pain sufferer, I am used to answering the following question from medical providers on a regular basis:
On a scale of 1 to 10, what is your pain level right now?
Days like today present a quandary.   It depends on the absolute definition of the word "pain".  (No, no, not "is" or "sex" or "It!") 

Nineteen months ago I slipped on a patch of ice in front of my house and severely damaged the soft tissue in my left shoulder.  Scans showed that there were no tears to any ligaments, tendons, or other mappable structures.  After six months of physical therapy we decided that it was as 'back' as it was going to get.  Unfortunately, this did not leave me with a healthy shoulder.

Part of my chronic health issue over the last seven years has been chronic inflammation.  If I sustain any sort of injury, it seems that I will be plagued by that injury on some level until my dying day.  The left shoulder is a prime example of this scenario.  Every day it at least aches to a certain degree.  Some days it straight out hurts.  Even so, in comparison to other pains that I have struggled with, the chronic shoulder pain rarely merits more than a 7.  However, the shoulder situation is about more than just "pain". 

Usually there is more of a sense of discomfort.  The joint feels swollen in some way.  It can feel better to hold my arm straight up, especially if I bend at the elbow and rest the weight of the arm on my head (nice image, right?  I've gotten some seriously odd stares at the office over this.)  There must be some swelling involved since, at its worse, my left hand feels a bit 'off' and my bicep may feel achy as well.  However, it's not all inflammation since my prescription NSAID only dampens the discomfort a little.  And, it's not strictly pain either, since taking the max dose of my non-opiate prescription pain relievers barely warrants a footnote when the shoulder is really acting up.  Usually both drugs together can  tune the discomfort down a notch or two so that I can get through the day.

USUALLY.  Today is not one of those days. 

If I were to step back and analyze "the pain" in my shoulder right now, it probably would warrant a six.  Right there, in the front of the shoulder.  SIX.  Six isn't that bad, right?

Except it's not just that spot where it definitely "hurts".  It's about all the discomfort in the surrounding tissue, into my bicep, and down to my hand.  THEN, there's the fact that my pelvic girdle is a bit achy today, as is my low back.  On top of that I know that when I get up from this chair, both thighs are going demand my attention with their multiple maddening small to midsized complaints.

It's all additive.  I logically know that all of it together is not as distracting and intolerable as the worse pain that I've ever experienced (tie between gallbladder attack and labor).  Still, when the dozens of bits conspire together you want to be able to quantify the sense that you can barely catch your breath from moment to moment for want of screaming.  Mostly, it's just below that or I wouldn't have been able to write all of this.  Though I did have to stop and refocus myself too many times to count.  Each time I take several deep breaths and try to dispel the cacophony of all those co-conspirators bouncing around in my head.

This is just one example of what it's like to live with chronic pain.  I am so glad that every day is not quite this bad.  Today is one of those days where I contemplate taking up prayer to a deity that I cannot believe in.  Oh, how I wish I could.  If I could pray, I would pray that the Lyme diagnosis and treatment will at least keep the discomfort from reaching this volume  ever again.  I would like to believe that I could make all (or at least most) of the pain go away.  But my skeptical wiring won't even let me hope for something that seems too much like a fairytale.

If you see me and I seem in good spirits, do not assume that it means that I am not in pain.  Also, if I am not showing it, do not ask me about my pain.  When I look fine, I'm doing my best not to think about it.  So please, please, don't remind me.  If I look miserable or distracted, feel free to ask me how I am doing.  Or if I need to talk about it and I trust you enough, I will bring it up. 

The last thing I want is to have my pain define my relationship with others.  Days like today it is hard for even me to remember this, but I am more than this pain that I live with.  Every day.  Every hour.  And sometimes, every minute ... to minute ... to minute.

Monday, September 24, 2012

My muddled mind

In the last year I have become more and more fatigued.  No amount of sleep ever seems to be enough to keep me from being sleepy, or sometimes even nodding off, during the day.  In the last few months, I have found myself being able to remember things.  Mostly it's just the names of things or the names of people.  However, as someone who has always had a great memory for details this turn of events scares the crap out of me.  I am hoping that this is just a side effect of the fatigue and not a symptom all on it's own.  However, memory loss and mind fog are symptoms mentioned on the long list of those associated with Lyme.

In either case, stopping the progression of Lyme should help with both the fatigue and any other neurological issues.  My fear is that some of my symptoms could be permanent.  There's been mention that even if we nip the Lyme progression in the bud, I could still be saddled with the symptoms of Fibromyalgia (which sound an awful lot like Lyme symptoms).  The thinking is that while lots of Fibromyalgia is actually Lyme, people who have had Lyme for a long time may end up with Fibromyalgia even after the spirochetes have been eradicated.

Sunday, September 23, 2012

Sharing at Church

I am not as active in my church as I used to be.  Part of the reason is that we moved further away, and the other reason is that the increasing fatigue I have been struggling with the last few years has made me less inclined to get up and go somewhere unless I absolutely have to.

Today, September twenty-third, would have marked my twenty-third wedding anniversary had I not divorced my husband nearly two years ago.  I had planned on staying close to home today, in part to examine my thoughts and feelings about the date.  A few weeks ago, I agreed to attend a meeting after church today.  I am really interested in the discussion, plus I knew it would probably be better if I didn't stick to my initial plan.  Also, it would give me an opportunity to experience a service with our new interim minister.

I had decided on the way to church that I would get up during the "joys and concerns" portion of the service to mention my recent Lyme diagnosis, along with the fact that I had embarked on an aggressive treatment plan.  As I sat through the beginning part of the service, I realized that I wanted to mention the anniversary as well.  After all, it was part of the 'concern' occupying my mind.

When the time came and the microphone was in my hands, I easily shared the story of my declining health and the probable tie to the Lyme that I was recently diagnosed with.  There were immediate murmurs of sympathy and support.  Then, with a growing catch in my voice, I mentioned the anniversary.  Many in the congregation knew my ex-husband as a pleasant soft-spoken man.  Many had also been informed of his post-divorce diagnosis with ALS and his institutionalization, since he can no longer care for himself.  Part of the reason for the institutionalization had to do with his declining mental state.  In my acknowledgement of our anniversary, I mentioned the illness and how he was no longer the man that most of him had known.  The reaction to that was still supportive, but there was also an air of discomfort.

After the service, many people came up to me to talk to me about the Lyme diagnosis.  But some also came up to me to offer me comfort on a day they could tell was difficult for me. 

What we see of people in public places is not always who they really are.  Just because you see someone for an hour or two every week doesn't mean that you KNOW them.  To really know someone takes an investment of time.  To really know someone you need to experience them in a number of different places and situations.  And finally, I think you need to see them in their home when they are relaxed at the end of a long and congenial evening (on top of the other experiences).  Only then might you begin to see who they really are.

Only a few people at church have some true idea of what went on towards the end of my marriage.  A few others think that they do, because of what my ex-husband said to them during that time.  While I do not want to diminish the warm memories any of his friends at church may have of him, I do hope that they come to realize that there is always more to people than what they let you see in a limited venue for a few hours a week.

Saturday, September 22, 2012

In which we try to attack the Lyme, that we don't "medically" have

As many of you know, I have been suffering from ever-worsening chronic pain and fatigue for a number of years. Doctors have sent me to physical therapy, have put me through numerous tests, and finally have prescribed me symptom-managing drugs. I suspected that I might have Fibromyalgia. This past Spring, one of my physicians official diagnosed me with the Syndrome. As a result of the diagnosis, and her experience with my leg/hip/back pain frequently making it difficult for me to walk long distances, she even signed a request for me to get temporary disability tags for my car.

When discussing the diagnosis and related health issues with some friends on Star Island this Summer, several of them vehemently stated that I have Lyme disease. They asked if I had been tested. There are two insurance-accepted tests for Lyme disease, ELISA and Western Blot. I tested negative on both in the last year. These tests look for a specific number of serum markers. There are more comprehensive tests that my friends encouraged me to look into.

When I returned from vacation, I had a sleep study scheduled. I have been getting more sleepy during the day over the past year. No amount of sleep seems like enough. It took several weeks to get the study results back to the provider who ordered it. She told me that there is nothing going when I sleep that shows anything abnormal (very little snoring, no apnea, normal REM cycle patterns). However, during the day study I showed an extreme ease in falling asleep. Sleep affinity is measured on a scale of 1 to 20. 1 being virtually asleep all the time, and 20 being too awake to fall asleep. My score was a 6. To manage my wakefulness, we ended up going with Aderall. So basically, I'm on amphetamines now, on top of pain meds, muscle relaxers, NSAIDs, and anti-seizure drugs to get rid of shooting pains and tingling.

During one of my check-in visits, I mentioned to my sleep doctor that I was thinking of getting a comprehensive Lyme test since all of my symptoms, including the "idopathic hypersomnolence" that she diagnosed, fell in line with Lyme. Turned out that she had some of the test kits from NeuroScience, Inc. So we drew the blood samples and sent them off to their lab.

My doctor called me on a Saturday morning to tell me that she got my results back. She knew how important this was to me. If I have an infection that is treatable, that is so much easier to accept than having a Syndrome that I'll have for the rest of my life. She told me that her interpretation of the results was that I definitely have a long standing case of Lyme. We agreed to meet later in the week with someone from the lab on the phone to confirm our understanding of the results.

That evening I watched "Under Our Skins" a documentary about Lyme disease and some of the controversies around its diagnosis. There appear to be two vehement camps in this discussion. The Establishment camp consists of the CDC, insurance companies, and most infection disease doctors, who state that Lyme disease is easily detectable with the two tests they recognize and that all the other diagnostic tools out there, or different interpretations of the two recognized tests, are flawed. That patients who do not show as 'positive' on their tests do not have Lyme, but are suffering from something else and should not be treated like they have Lyme.

The other camp of doctors and patients claim that there are multiple strains of Lyme that will not test positive with the narrow definition proclaimed by The Establishment. These doctors, many of whom become members of the International Lyme and Associated Disease Society (ILADS), stand by more comprehensive testing and a less rigid interpretation of Western Blot and ELISA test results. Most of the people who end up as their patients have been bounced around from doctor to doctor, diagnosed with all sorts of chronic syndromes and diseases that have to be suffered through but that cannot be cured. Once these patients end up with an ILADS provider, they are examined for THEIR SYMPTOMS first and are given the standard AND more comprehensive tests to CONFIRM a diagnosis of Lyme or related infection. If this (non-Establishment-based) diagnosis holds up, these patients are treated intensively for an infection that they probably have lived with for years and years. Many to most of these patients GET BETTER with this treatment. Very few suffer lasting side effects from the treatment they are given.

I am not one of those patients, being treated by an ILADS provider using strong doses of antibiotics and supporting supplements to attempt to drive an infection from my body. I received fair warning that there may be uncomfortable side effects during treatment. The antibiotics may make me nauseous, headachey, or give me diarrhea for one. Once the antibiotics start working, the die off of the organisms will release their toxins into my system en masse. So, it is likely that I will feel worse before I see any benefit to the treatment. As rotten as I've been feeling, it is worth the downside to me. Primarily, I want to stop the progression of what has been happening to my body. The last year in particular has been extremely tough. I have even toyed with the idea of going on full disability, which I really can't afford to do.

I took my first dose of mega antibiotics last night with dinner. I haven't been hungry enough today to eat enough food to take my next dose. Hopefully, I can do that soon. Also, I hope to check in hear at least weekly to document the progress of the treatment. If anyone is still checking in here, wish me luck.