tag:blogger.com,1999:blog-29620970635691129902024-03-12T19:52:18.670-05:00Alysons CFIDS BlogMy life with multiple chronic illnesses and my quest for answersalysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.comBlogger177125tag:blogger.com,1999:blog-2962097063569112990.post-72208570586256128662014-05-12T00:42:00.001-05:002014-05-12T00:43:57.290-05:00ME/CFS Awareness Day<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFJ-C9jOASo8wvad8iy1GL4aXpF1677JOR2nUYWJn749K8BRC6Tt3j7wl8yOH4EpgjDDlvg4hhBbjDyagaTE1WR3JU954V1IlZbwsBY990F4G_nUEnQUgd-Rqq2Aen8tRH6zvSNJKVvyE/s640/blogger-image-1221302899.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFJ-C9jOASo8wvad8iy1GL4aXpF1677JOR2nUYWJn749K8BRC6Tt3j7wl8yOH4EpgjDDlvg4hhBbjDyagaTE1WR3JU954V1IlZbwsBY990F4G_nUEnQUgd-Rqq2Aen8tRH6zvSNJKVvyE/s640/blogger-image-1221302899.jpg"></a></div>alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com1tag:blogger.com,1999:blog-2962097063569112990.post-12552756427189824642014-01-04T15:15:00.001-06:002014-01-04T15:27:22.689-06:00The 2013 Roller Coaster and Hope for 2014<div dir="ltr" style="text-align: left;" trbidi="on">
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Last year (2013) was a bit of a roller coaster. It started and ended a bit rocky but had a fantastic middle. The year began with my divorce. I then enjoyed the healthiest several months of my entire adult life. My strength and endurance improved so much that I was able to start exercising (in a limited fashion) again. I was happy and healthy. I could easily do things I hadn't done much of in years -- I went out with friends. I took long walks. I traveled. I went dancing. The most amazing part is that I did all these things without a major crash. <br />
<br />
Unfortunately, my good health decided to take a sabbatical around October. It started with strep throat and a round of antibiotics. Then I caught a nasty cold with a cough so bad it required codeine cough medicine (not as fun as you might think) just so I could sleep through the night. I got another strep infection -- this time it was much worse with a higher fever and more swelling, pain, and puss on the tonsils (yum!) -- and went on another round of antibiotics.<br />
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At some point I managed to catch a case of bacterial pinkeye (which required antibiotic drops) and another strep infection (and more antibiotics), though I suspect it was the same strep infection all along that was not getting fully cured with the antibiotics. Finally, I ended 2013 with not one but TWO urinary tract infections, each of which required a round of antibiotics. To make these last few months even more enjoyable, I suffered from multiple cases of diarrhea and yeast infections due to all the antibiotics (despite taking high doses of probiotics). Fun times. <br />
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Whew! In case you weren't counting, I was on six different antibiotics from October through December. <br />
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On the bright side, I have not lost too much of my strength and have still been able to keep active. On the down side, I'm concerned about the toll the antibiotics have taken on my body, and I'm worried about my immune system and why it decided to fail me so much at the end of the year. Was I just unlucky? Was I doing too much and pushing my body too hard? Or is there something else going on that I need to be concerned about?<br />
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I'll be making an appointment with my rheumatologist soon.<br />
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Looking back at 2013, I have to say that the great improvement in my health and quality of life thanks in large part to the CoQ10 and Plaquenil made it a good year overall. The rocky patches were undoubtedly rough and extremely unpleasant, but I've come through relatively unscathed. <br />
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I finished my last round of antibiotics a few days ago. As of this moment, as far as I know, I don't have any infections (bacterial, yeast, or otherwise) and feel generally fine other than a headache. I'll consider this a good start to 2014. It's the little things, right?<br />
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I've got hope that 2014 will be a good year for me. I hope it's a good one for you, too! </div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com2tag:blogger.com,1999:blog-2962097063569112990.post-9035993611539630852013-11-28T07:30:00.000-06:002013-11-28T07:30:04.021-06:00Three Things I'm Thankful For<div dir="ltr" style="text-align: left;" trbidi="on">
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<b>I'm Thankful for...</b><br />
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<li><b>Improved health (and doctors who listen).</b> I missed out on a lot of things in my twenties and early thirties, so my improved health is letting me make up for lost time. I've been out and about more in the last year than I had been in the last ten years. I've had the best health of my life this year (thanks to a few awesome doctors who took me seriously), and I don't ever want to take it for granted. </li>
<li><b>Resilient spirit.</b> Last year was a tough one when my marriage came to an end. I am so grateful that my spirit was much more resilient than I gave it credit for. With the help of a good counselor and the support of family and friends, I was able to bounce back in positive, healthy way. I'm now enjoying this new chapter of my life. </li>
<li><b>Family and friends.</b> Speaking of family and friends, I am thankful to have them! Simply put, they just make life better. </li>
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There's plenty more that I'm thankful for, but I wanted to highlight my top three for 2013. Happy Thanksgiving to all who celebrate!<br />
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alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com0tag:blogger.com,1999:blog-2962097063569112990.post-65296572443822572242013-10-31T23:21:00.000-05:002013-11-02T18:18:53.077-05:00Part III: Almost Normal<div dir="ltr" style="text-align: left;" trbidi="on">
Hello folks! <br />
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I'm so sorry about my long absence. This time I've been away because I've been feeling good and have been out and about almost like a normal person. I suppose you can say I've been making up for lost time. <br />
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I'm actually recovering from a nasty throat infection right now, but I'm otherwise doing well. <br />
<br />
The biggest improvement has been with my energy. After taking high doses* of CoQ10 (prescribed by my neurologist after a test confirmed I had low levels of it) for over a year, I have more energy than I've had in my entire adult life. I don't make this statement lightly, and I'm definitely not saying that CoQ10 has "cured" me. What it has done, however, is help improve the way my muscles make and process energy. <br />
<br />
The improved energy allowed me to start exercising over the summer (with permission and specific guidelines from my doctors), something that would have been impossible just two years ago. Unless I'm feeling ill, I exercise once a week for about 25 minutes with a trainer. That's really my only formal exercise in a given week, but it's still 100% more than I used to do! <br />
<br />
Before I agreed to work with my trainer, I interviewed him and made sure he understood where I was coming from physically. Even though I looked young and healthy on the outside, I had the muscle atrophy of a 70 year old. I also explained the instructions from my doctors. No free weights because they're tough on the joints. Bands are ok. No heavy aerobic exercise because they could damage my muscles. Low impact is fine. He understood and really got it. <br />
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Around the time I started exercising, I started taking generic Plaquenil. This medication is often prescribed for autoimmune diseases such as lupus and rheumatoid arthritis. Though I can't tell for certain, I think this medication is helping me as well. The joint pain in my hands seems to have decreased. <br />
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Fast forward to today. I saw my neurologist this afternoon, and she confirmed my strength has increased. This is the second visit in a row that she said my strength has increased, so I'm thrilled to know I'm on the right track. <br />
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We both think my improvement may be due to a combination of factors: the CoQ10, Plaquenil, and the strength building exercises I do with my trainer. We also agreed that today would be my last visit with her as my neurologist because what I have is not neurological. I will be continuing my followup with my rheumatologist and primary care physician. <br />
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That's all I have for now. I've got to go to bed! <br />
<br />
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* Note added November 2, 2013: I take 400mg of CoQ10 two times per day (total 800mg/day). </div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com3tag:blogger.com,1999:blog-2962097063569112990.post-80139024453912152592013-07-23T14:49:00.001-05:002013-07-23T14:49:15.402-05:00Part II: It Still Might Be Lupus or Not...<div dir="ltr" style="text-align: left;" trbidi="on">
I have to apologize for taking so long to follow up with my last blog post. I took a bit of a hiatus from blogging (as I do from time to time) to focus on myself.<br />
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I'm thrilled to report that I'm the happiest and HEALTHIEST I've been in many years! :)<br />
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Here are updates from my last post <a href="http://alysonscfidsblog.blogspot.com/2013/05/part-i-um-so-it-might-be-lupus.html" target="_blank">Part I: Um, So It Might Be Lupus...</a>:<br />
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* The skin biopsy results were inconclusive. They showed inflammation and allergic reaction, but they didn't prove lupus. However, they didn't disprove lupus. Basically, I have two new scars on my arm for pretty much no good reason. They go well with my muscle biopsy scar on the other arm.<br />
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* I love my neurologist. Period. She is one of the most supportive doctors I have encountered in my entire life (and I've encountered a LOT of doctors). Based on my positive ANA, the skin rashes that appeared after extra sun exposure, and the achy finger joints, she agreed that my symptoms seem autoimmune. She knew I was going to see a rheumatologist and told me that if my rheumatologist didn't want to put me on Plaquenil, she would just to see if it would help. <br />
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* I saw my rheumatologist, and he agreed that my symptoms seemed autoimmune in nature and put me on Plaquenil. I still do not meet enough criteria to get an official diagnosis of any particular diagnosis, but he strongly suspects that is the cause. Though I don't have an official diagnosis, what I seem to have could be called "undifferentiated connective tissue disease." He wants me to stay on Plaquenil for about six months before we decide whether or not it's helping me. <br />
<br />* Interestingly, I've also seen a geneticist. I was referred to her several months ago by my primary care practitioner because of all my seemingly unrelated symptoms. The geneticist suspects something called <a href="http://www.ednf.org/" target="_blank">Ehlers-Danlos Syndrome</a>, a type of genetic (NOT autoimmune) connective tissue disease. (Click on the hyperlink to learn more.) Many people who have EDS were originally misdiagnosed with things like lupus, rheumatoid arthritis and/or fibromyalgia. Hmmm...very interesting. <br />
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In my next post, I'll go into more detail about these latest developments and explain why I think I've been feeling so healthy. <br />
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Until next time!<br />
<br /></div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com6tag:blogger.com,1999:blog-2962097063569112990.post-48892667170338999502013-05-28T21:29:00.001-05:002013-05-28T21:29:29.866-05:00Part I: Um, So It Might Be Lupus...<div dir="ltr" style="text-align: left;" trbidi="on">
Wow. This month has been full of medical drama with skin biopsies, ignorant nurses, and arrogant dermatologists with a couple of amazingly awesome doctors sprinkled in. <br />
<br />
Read my entry <a href="http://alysonscfidsblog.blogspot.com/2013/05/not-mitochondrial-disease-probably-not.html" target="_blank">Not Mitochondrial Disease, Probably Not Lupus</a> for background. <br />
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I received the copy of my ANA results, and they were indeed the same as my previous results (1:160). Though the nurse told me over the phone that my results were negative, 1:160 is a POSITIVE result and the report actually says "positive" by my number. I know nurses are human and make mistakes, but telling someone test results are negative when they are actually positive is a major error!<br />
<br />
In the meantime my sun rash came back, so I went back to the dermatologist's office assuming I was going to get a biopsy and saw a different doctor in the same practice. That doctor took one glance at my rash and told me I had keratosis pilaris, which is pretty much like acne. He didn't look closely at the rash or ask me any questions about my symptoms. I told him the previous two doctors had mentioned lupus or PMLE as possibilities and asked him about getting a biopsy. He said a biopsy wasn't necessary because I couldn't have lupus since my ANA was negative. I told him I had a 1:160. He looked surprised and said "oh, that's positive." He then looked at the nurse (the same one who called me before) and said to her: "I thought you said it was negative." <br />
<br />
The doctor ended up doing a scrape biopsy on the inside of my right arm, where there was no rash. I told him that I was confused because it was my understanding that I was supposed to get a biopsy of the rash area. He said there was no point in doing a biopsy where the rash was because it would only show keratosis pilaris. Really? He was that sure of his diagnosis. He would not answer my questions about lupus or PMLE and dismissed my concerns about doing a biopsy on an area of active rash. <br />
<br />
After he left, I tried to get clarification with the nurse, but she was extremely rude and mean to me (probably because she was mad she got in trouble for giving the doctor incorrect info about my ANA results). When I said I was just trying to get answers to my health questions and figure out why I wasn't a normal thirtysomething, she responded in a terrible tone saying that she's not normal either and everyone has problems. Ouch.<br />
<br />
Yup. With one comment she completely dismissed the last 15 years of my life -- the years I couldn't work, the ER visits and hospitalizations, the times on disability, the times I had to be pushed around in wheelchairs because I was too weak to walk, the anaphylaxis, the hair loss, the isolation, the tears. I realize the nurse must have been having a bad day, but she still managed to make me feel completely crushed and invalidated. I cried a lot that evening. <br />
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The next day or so I decided that I needed to go back to the dermatologist -- the first one who actually suggested the possibility of lupus -- for a biopsy of the active rash area because I didn't know how long my sun rash would stay around. I got an appointment with her that afternoon. I told her about my experience with the other doctor in her practice, and she defended him. Even though she did not think my rash was keratosis pilaris, she defended him and said dermatologists really hate it when patients question their diagnoses. I was still feeling pretty emotional about my previous encounter, so I immediately burst into tears. <br />
<br />
The doctor backtracked a little and said she understood how frustrating it can be for patients trying to get answers. She also said it would be a good idea to have a biopsy of a rashy area. <br />
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I need to go to bed now. I'll write more another day. I still have to talk about my recent neurologist and rheumatologist appointments, as well as the skin biopsy results, of course. <br />
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By the way, I do NOT have keratosis pilaris. <br />
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Stay tuned...<br />
<br />
<br /></div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com3tag:blogger.com,1999:blog-2962097063569112990.post-71277799402630767782013-05-12T07:00:00.000-05:002013-05-12T07:00:02.180-05:00ME/CFS Awareness<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="http://meaware.wordpress.com/"><img alt="ME/CFS Awareness" height="329" src="http://meaware.wordpress.com/files/2009/03/ribbon_orangeback_large_sq1.jpg" title="ME/CFS Awareness" width="329" /></a>
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alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com4tag:blogger.com,1999:blog-2962097063569112990.post-39335671445633891452013-05-01T22:50:00.000-05:002013-05-01T22:50:11.655-05:00Not Mitochondrial Disease. Probably Not Lupus, but...<div dir="ltr" style="text-align: left;" trbidi="on">
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I'm up later than usual because I was home sick and slept nearly all day. </div>
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Yesterday I received the last of my nuclear DNA test results. After both my mitochondrial DNA and nuclear DNA test results showed nothing of clinical significance, it's pretty safe to say I don't have mitochondrial disease. They did find a few interesting abnormalities, but nothing that warrants a diagnosis. I'll try to remember to give specific explanations and results from the tests in a future post. </div>
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I received my ANA results by telephone today. If you'll recall, I went to a dermatologist for rashes I'd been getting lately, and she mentioned the possibility of lupus (see <a href="http://alysonscfidsblog.blogspot.com/2013/04/looking-for-lupus-again.html" target="_blank">Looking for Lupus AGAIN?!</a> and <a href="http://alysonscfidsblog.blogspot.com/2013/04/no-skin-biopsy-for-lupus-blood-test.html" target="_blank">No Skin Biopsy For Lupus. Blood Test Instead.</a>). </div>
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The nurse who called me said that my ANA level was the "same" as my last ANA level. She said my ANA was 1.6. I was a little confused. My ANA result in 2011 was 1:160. Other than having ones and sixes in both numbers, I didn't really understand how those two numbers were the same. </div>
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<br /></div>
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Just to make sure I was hearing things correctly, I repeated the numbers back to the nurse. "So a 1.6 is the same as a 1:160 result?" She said yes. She continued and said a 1.6 is a "negative" result and a positive result would be in the "tens of thousands." I tried to get clarification about the numbers, but she wasn't able to answer my questions very well, so I gave up.</div>
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It's my understanding that a 1:160 ANA is considered a positive result (albeit not that high). If a 1:160 is positive and a 1.6 is "negative" (according to the nurse), how can these numbers be "the same"? </div>
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<br /></div>
<div>
The nurse assured me I didn't have lupus because my result wasn't "high enough." Something being "negative" and something being "not high enough" mean two different things to me. I wondered, <i>how could she know that I don't have lupus if the doctor never asked me about any of my symptoms other than the rashes? </i>I can only assume she was repeating what the doctor told her to tell me. </div>
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The nurse then said I should get monitor my rashes and be sure to come in as soon as they flare up again. She also said the doctor thought I should get my ANA retested in six months. Okay, if my results were "negative" and they don't think I have lupus, why would I need to get retested in six months? </div>
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After I hung up I tried to find something online that has a comparison chart of the two values. No luck! however, I did find a couple of message boards with people mentioning having a 1.6 and getting treated for lupus. Very confusing...</div>
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I've decided to go see the same rheumatologist I saw two years ago the last time someone else suspected lupus. I have an appointment with him for about four weeks from now, so I am again in a wait-and-see mode. I have great respect for this rheumatologist because he's the one who figured out I have fairly significant muscle weakness and suggested I see a neurologist. </div>
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I'm also glad I'm going to see him because I've been having pain and stiffness in my finger joints on and off for the last few months, and I wanted to ask him about that. </div>
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I also plan to make an appointment with my neurologist (I will probably call tomorrow). Though my energy levels have improved dramatically thanks to the high levels of CoQ10 I've been taking, my muscle weakness seems to be worse lately. I'm not sure if it's because I've been more active (too active?), or if it's something more problematic. </div>
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Anyway, that's the update. Good night! </div>
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alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com0tag:blogger.com,1999:blog-2962097063569112990.post-21650464205451788372013-04-28T15:12:00.000-05:002013-04-28T23:18:11.482-05:00Angry and FrustratedIf you're a regular reader, you'll know that I'm a generally positive, happy person. I know this might come as a shock to some, but I'm still human! I have my share of pity party days and days when I'm angry or frustrated. Well, today is one of those days.<br />
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I've been dealing with chronic illness for my entire adult life, and I'm frustrated that so many in the medical community (and definitely the general public) are ignorant when it comes to dealing with "invisible" illnesses. Ask random people on the street what they know about ME/CFS, and you'll probably get blank looks or misinformed answers. I get even more frustrated when I hear from fellow patients whose stories of dismissive doctors echo my own.<br />
<br />
I'm angry that I don't know what it's like to be a normal, healthy adult. I'm upset that I've spent over a dozen years and thousands of dollars searching for answers and relief only to be left with little to no relief, a lot less money, and even more questions. <br />
<br />
I know I'm lucky that I've found a few awesome doctors who have become allies in my search for answers, but I've also had so many awful experiences with idiot doctors and nurses who think they know everything when in actuality they know very little. (One idiot doctor in particular almost cost me my life due to a misdiagnosis and ignorance of a particular medication's possible side effects.) I'm even annoyed that I feel "lucky" to have found good doctors. Shouldn't all doctors that we go to be good ones? <br />
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I feel hurt and frustrated when well-meaning friends and family tell me that, well, at least what I have isn't "more serious"/"fatal"/[insert something dismissive here]. "At least it's not [insert a more well-known illness here]" is equally dismissive and ignorant. What they're really doing is minimizing the impact my health has had on every single day of my entire adult life.<br />
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I'm also angry that very little progress has been made in terms of what we know about ME/CFS and other less common chronic illnesses. I started blogging in 2009 and had great hope that things would change for the better. Now it's 2013, and I have seen very little change. <br />
<br />
When I started blogging, the iPad had not yet been released and people were still really excited about the iPhone 3G. Since then, the 2nd, 3rd, and 4th generation iPad models and iPhone 3GS, 4, 4S, and 5 have all been released and are old news. If we have phones that understand us when we speak and can act as personal assistants and speak back to us, why have we not made any real progress when it comes to ME/CFS and other chronic illness? <br />
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I still have hope that I will find answers to whatever is wrong with me. I'm not going to stop until I do. <br />
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com5tag:blogger.com,1999:blog-2962097063569112990.post-6529489519075413632013-04-25T21:15:00.000-05:002013-04-25T21:18:21.839-05:00No Skin Biopsy for Lupus. Blood Test Instead.<div dir="ltr" style="text-align: left;" trbidi="on">
I didn't have the skin biopsy after all. <br />
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When I got to the doctor, she did not think the rash was "active" enough to warrant a biopsy, so she ordered an ANA blood test instead. (For the record, my rash was not active at all when I first went to the dermatologist, which is why I didn't have the biopsy then.) To her credit, she doesn't believe in doing a biopsy if the information obtained might not be helpful.<br />
<br />
It turns out that the type of biopsy she wanted to do is called a "punch biopsy," which involves cutting out a small chunk of skin about the size of a pencil eraser (imagine a paper hole punch). After that lovely image, I'm actually ok not having the procedure just yet. I still have unpleasant memories (and a nasty scar) from my muscle biopsy. <br />
<br />
I still may have a punch biopsy, but it will depend on my ANA blood test results and if/when the rash comes back more strongly. The doctor said I could just call the office during
normal work hours as soon as my rash reappears and I'll get scheduled
for that same day or first thing the next day (assuming it's not a
weekend). <br />
<br />
The doctor also thinks it's entirely possible that my rashes are due to Polymorphous Light Eruption (PMLE), which some consider a kind of allergy to the sun; others call call it "sun poisoning." (Here's some info from the <a href="http://www.mayoclinic.com/health/sun-allergy/DS01178" target="_blank">Mayo Clinic</a>. If you're a science nerd, read the medical explanation on <a href="http://emedicine.medscape.com/article/1119686-overview" target="_blank">Medscape</a>.)<br />
<br />
If my ANA comes back negative or really low, I probably have PMLE. If it's positive, it's probably lupus. Either way, I have something. Knowing my weird body, I'm probably allergic to the sun. Fun times. <br />
<br />
At this point, there's nothing for me to do except wait for my ANA results. I should be used to waiting for medical test results by now, but I'm not.<br />
<br />
I hate waiting! <br />
<br />
To be honest, I wouldn't mind a lupus diagnosis because it would give me something definitive that most doctors would both believe and understand. I look so young and fit on the outside that I have a hard time getting doctors (and others) to understand how miserable it can be to live in my body. <br />
<br />
I have so many random symptoms which are not typically associated with ME/CFS that I'm no longer convinced I have it. On the other hand, I'm not convinced that I don't have it (can I use a double negative?).<br />
<br />
I'm not scared of lupus.<br />
<br />
A lupus diagnosis really wouldn't change much for me; it would neither cure me nor make me worse. I would still live the way I'm living and feel the way I'm feeling. The fundamental shift would be in the way others perceive me. <br />
<br />
More would believe me without question.</div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com2tag:blogger.com,1999:blog-2962097063569112990.post-50064022994793994002013-04-23T22:43:00.002-05:002013-04-23T22:47:27.056-05:00Looking for Lupus AGAIN?!<div dir="ltr" style="text-align: left;" trbidi="on">
I know I still have to write an update on my nuclear DNA and CoQ10 tests, but something more pressing has come up that I thought I should blog about...<br />
<br />
I'm getting tested for lupus again.<br />
<br />
I've been tested for lupus <i>at least</i> three times before. There's not actually a specific test for lupus, but I've had ANA and other related tests done. The first two ANA tests (in 2005 and 2009) were completely negative. The most recent one in late 2011 was mildly elevated (1:160) but not high enough with the right constellation of symptoms to warrant any kind of diagnosis. You can read about my previous lupus excitement here (<a href="http://alysonscfidsblog.blogspot.com/2011/11/lupus-or-not.html" target="_blank">Lupus or Not?</a> and <a href="http://alysonscfidsblog.blogspot.com/2012/01/its-not-lupus-but.html" target="_blank">It's Not Lupus, But...</a>).<br />
<br />
Unfortunately, this time around does not involve a simple blood test. I am scheduled to get a skin biopsy tomorrow. Ugh. The reason for the biopsy is because for the past couple of years I've been getting random rashes. <br />
<br />
At first, I thought the rashes were from something I was eating, then I thought they might be from my laundry detergent. After paying closer attention to what I ate and switching laundry detergents, the rashes still seemed to come and go randomly. Eventually, I realized that the rashes were showing up in the same places as my first photoallergic rash from 2011 (see <a href="http://alysonscfidsblog.blogspot.com/2011/09/september-already-july-was-itchy.html" target="_blank">September Already? July was Itchy.</a>) <br />
<br />
I complained to my allergist about my worsening rashes, and she referred me to a dermatologist because the rashes were not like my normal eczema. I went to the dermatologist last month, thinking she'd give me a different topical medication or suggest ways to figure out what I'm allergic to. <br />
<br />
To my surprise, the dermatologist asked if I had ever been tested for lupus. I told her about my past ANA results, and she was intrigued that my last ANA came back a bit elevated.<br />
<br />
Long story short, I'm getting a skin biopsy tomorrow. In addition to looking for signs of lupus, they're going to look for another condition that has to do with being allergic to the sun (yes, you read that correctly). Whee...<br />
<br />
I'm nervous about the skin biopsy because I don't know how much they are going to take, if it will hurt, or if I'll need stitches. My last biopsy was a muscle biopsy, and it was truly awful. I realize skin is not as deep as muscle (I did learn <i>something </i>in 9th grade biology), but I really dislike not knowing what to expect.<br />
<br />
Anyway, I'll keep you updated! Must sleep now...<br />
<br /></div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com3tag:blogger.com,1999:blog-2962097063569112990.post-51262231042208577852013-04-16T07:12:00.001-05:002013-04-23T19:39:45.077-05:00Boston, MA<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikDgUiY0J2jnqBSYk_OEJk-po5UJgLgk3YzBbreuxCM5yjNJbuZcQIAi9Zff2zfqpcrcdJPJpy_d3Naqly3e0i36EEmTvEdA5qMM2xrxkcXUzG5x431npav9Q9uPyCycDtQyu1QrQcS_E/s640/blogger-image-1186703043.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikDgUiY0J2jnqBSYk_OEJk-po5UJgLgk3YzBbreuxCM5yjNJbuZcQIAi9Zff2zfqpcrcdJPJpy_d3Naqly3e0i36EEmTvEdA5qMM2xrxkcXUzG5x431npav9Q9uPyCycDtQyu1QrQcS_E/s400/blogger-image-1186703043.jpg" width="400" /></a></div>
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alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com2tag:blogger.com,1999:blog-2962097063569112990.post-18360210129972267822013-03-03T18:49:00.000-06:002013-04-25T21:17:58.987-05:00Giant Potholes in the Road of Life<div dir="ltr" style="text-align: left;" trbidi="on">
There is a road not far from my house that has the worst potholes in the world. I'm talking about jaw-breaking, brain-rattling caverns that shock me every time I drive over them. Even though I try to avoid them, they are impossible to miss. The funny thing is that the road is in a really nice area with beautiful trees and charming homes. <br />
<br />
Okay, maybe I'm overstating the size of the potholes...a little.<br />
<br />
To outsiders my life appears perfectly lovely. I have a supportive family, a great job, a cute cat, a home, and look healthy on the outside. The reality is that I've hit a giant pothole in my personal life, which has shaken me to the core.<br />
<br />
My husband and I recently divorced. <br />
<br />
We separated a few months ago, and the divorce was finalized last month. When I got married in 2005, the D-word was never an option for me. I believed I would spend the rest of my life with this man. I would get healthy, and then we would have children and grow old together.<br />
<br />
We were supposed to grow old together.<br />
<br />
Unfortunately, the odds were against us. From what I've read, the divorce rate for people with chronic illness is higher than that of healthy people. My husband also brought his own mental and physical issues to the marriage, which compounded our challenges. <br />
<br />
Suffice it to say our marriage is over.<br />
<br />
What makes the timing of the demise of our marriage so much more painful is that I'm the healthiest I've been in a very long time (I'll write about it in a future post), our careers were going well, and we were finally reaching a point where we didn't have to worry as much about our finances. The future was looking bright.<br />
<br />
Unfortunately, the future I envisioned for myself is gone. <br />
<br />
I'm now in the process of regrouping and dealing with my grief. I'm seeing a psychologist to sort through everything, my family has been amazingly supportive, and I'm taking care of myself. I think I've been doing quite well under the circumstances, though I'm not entirely sure how much is denial and how much is me actually handling things. <br />
<br />
Only time will tell, I suppose. <br />
<br />
My mom bought me a magnet that I keep prominently featured on my refrigerator so that I see it every day. It says:<br />
<blockquote class="tr_bq">
<i>Everything will be okay in the end. If it's not okay, it's not the end.</i> ~Anonymous</blockquote>
<br />
What's great about the road with the terrible potholes is that once I get through the really rough patch, there is a stretch of freshly repaired road. There are no potholes in that area, and it's a smooth drive for a while. <br />
<br />
I'm looking forward to the next smooth part of my Road of Life. For now, however, I'm working on getting past this darn pothole. <br />
<br /></div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com9tag:blogger.com,1999:blog-2962097063569112990.post-2991003078303068882013-01-07T20:37:00.004-06:002013-01-07T20:37:47.407-06:00Trips to Immunologist and Hematologist<div dir="ltr" style="text-align: left;" trbidi="on">
In case you're not a regular reader or it's just been too long since I've talked about it, I have been on a mission in recent years to get answers. I've gone from specialist to specialist for three main reasons: <br />
<ol style="text-align: left;">
<li>to seek relief from something chronic (e.g., asthma, allergies, IBS, PCOS, etc.),</li>
<li>because a doctor/specialist referred me, and/or</li>
<li>to rule out conditions or find out if there is something wrong with me that can be treated...just in case I don't really have CFS/ME.</li>
</ol>
A lot has happened since my last real post. I've seen an immunologist and a hematologist in recent months, though not much came of the visits. Well, that's not entirely true. Something did come of the hematologist visit, but you'll have to read the rest of the post to find out (or you can just skip to the end). <br />
<br />
First, the immunologist. I decided to see an immunologist to rule out major immune system problems because I've had problems in the past with healing (e.g., complicated tonsillectomy, complicated UTI), as well as unusual reactions to different things (e.g., drug allergies). <br />
<br />
I didn't realize how hard it would be to find an immunologist who saw adults. Typically, doctors in the US who are allergists are also trained in immunology, but I wanted someone who focused on immunology first and allergies second. I was hoping the doctor would have enough experience that he or she could spot unusual or less common conditions in adults. Most of the doctors in my area who called themselves immunologists worked in pediatric departments of hospitals and only saw children. <br />
<br />
After searching high and low, I finally found a doctor who used to be a pediatric immunologist at a hospital before starting his own medical practice. He now sees children and adults. His office is about an hour away from my house, but I felt the visit would be worth it. When I went to see the doctor, he took a thorough medical history and listened carefully to everything I had to say. He took his time with me. I think the appointment lasted well over an hour! <br />
<br />
The doctor explained that from my medical history and the way I described my problems, he did not think I had a significant immune system problem; however, he said something mild could be possible. The doctor ordered a battery of tests, from the usual CBC to more specialized tests on my immune system that I'd never had done before. <br />
<br />
I won't keep you in suspense. My immune system appears to be normal. All the tests came back within normal parameters -- except for my red blood cells. The abnormal results were expected because I have thalassemia minor; I am a genetic carrier for the thalassemia trait, which is a type of anemia.<br />
<br />
Though I had told the immunologist that I have thalassemia minor, he was concerned about my blood test results and strongly urged me to see a hematologist for a deeper look at the way thalassemia minor might affect me. The immunologist believed the thalassemia minor could be the cause of my fatigue. <br />
<br />
I was shocked because I'd always been told that thalassemia minor was symptomless. <br />
<br />
I made an appointment with a hematologist as soon as I could. This doctor took a thorough medical history and ordered a bunch of tests to check out my blood and to determine what type of thalassemia minor I have. I found it interesting that the doctor himself actually went to look a look at my blood cells with a microscope while I waited in the exam room. <br />
<br />
I'll spare you the suspense again. Based on the blood test results, the hematologist said that he did not believe the thalassemia minor was causing my fatigue or other symptoms. He said my blood cells looked good for someone with the thalassemia trait and that I was not particularly anemic. <br />
<br />
I was actually disappointed because I thought I was about to get answers as to why I've physically struggled for so long. <br />
<br />
One really good thing came from the visit to the hematologist, however. He was fascinated by my health history and really seemed to empathize with me. He revealed to me that during his medical training, he had once worked at the National Institute of Health in their rare diseases department. <br />
<br />
He said that the NIH has a program that brings in patients who have not gotten a diagnosis that adequately explains their constellation of symptoms. The NIH runs about a gazillion tests on the patient and tries to come up with a proper diagnosis. <br />
<br />
The hematologist said that once I receive my nuclear DNA test results from the mitochondrial disease specialist, <strong>he would be willing to recommend me for the NIH rare diseases program</strong> if the results come up inconclusive. <br />
<br />
Wow! <br />
<br />
I won't be getting my nDNA test results back for at least another couple of months, but this doctor gave me a little glimmer of hope that I might finally understand my uncooperative body. It's important to note that there is no guarantee that I would be accepted into the program even if recommended by this doctor, but I was touched that the hematologist took me so seriously and understood my need for answers. <br />
</div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com6tag:blogger.com,1999:blog-2962097063569112990.post-60767384788304881752012-12-27T12:03:00.003-06:002013-01-07T20:39:47.795-06:00Happy Holidays<div dir="ltr" style="text-align: left;" trbidi="on">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcPzWo2QYOlarw50d9zwvmyv9sUBSTPBUJxWEM0KHaJnQjoJ2OH9BDxL3twoBBfFKjiJehGfe-ciVHjR2ui6MLwYAZ4LDw-lo8mcK6EWQYpU9zPJQhhBSuTiwgmS-MLCXRX0Vt9mm2DRQ/s1600/abc.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcPzWo2QYOlarw50d9zwvmyv9sUBSTPBUJxWEM0KHaJnQjoJ2OH9BDxL3twoBBfFKjiJehGfe-ciVHjR2ui6MLwYAZ4LDw-lo8mcK6EWQYpU9zPJQhhBSuTiwgmS-MLCXRX0Vt9mm2DRQ/s1600/abc.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">Image from http://hellogiggles.com/hanukkah-is-not-jewish-christmas-and-other-holiday-irks</span></td></tr>
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<b>Happy Holidays! </b> I have many updates to post. I hope to catch up with my blogging over the next several days. Best wishes to you and yours. </div>
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alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com2tag:blogger.com,1999:blog-2962097063569112990.post-29752175631563402062012-10-21T22:13:00.002-05:002013-01-07T20:39:27.755-06:00Mitochondrial Disease Testing Update<div dir="ltr" style="text-align: left;" trbidi="on">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZOxwmb3tafrlQ-NeOEkMPIiRgRxetBn3yoA_cvpLZAF0QKdqz2R4S5HPLYbbZmDvaxGyRrg-cNXTYSZ2R76hNpdrS3yGRvZM6PcXpZSiSjxsVd_S_R0Q7AgTZYEVRyot1DE0CLlFNNXM/s1600/mitochondrion.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZOxwmb3tafrlQ-NeOEkMPIiRgRxetBn3yoA_cvpLZAF0QKdqz2R4S5HPLYbbZmDvaxGyRrg-cNXTYSZ2R76hNpdrS3yGRvZM6PcXpZSiSjxsVd_S_R0Q7AgTZYEVRyot1DE0CLlFNNXM/s320/mitochondrion.jpg" width="302" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image from the <a href="http://mda.org/disease/mitochondrial-myopathies/causes-inheritance" target="_blank">Muscular Dystrophy Association</a></td></tr>
</tbody></table>
This year I have been on a mission to get answers. <br />
<br />
My journey lead me to a rheumatologist who noticed unusual muscle weakness and suggested I see a neurologist (see <a href="http://alysonscfidsblog.blogspot.com/2012/01/its-not-lupus-but.html" target="_blank">It's not Lupus, but...</a>). <br />
<br />
I then found my way to a wonderful neurologist who specializes in neuromuscular diseases who confirmed my weakness and ordered a battery of tests (EMG, muscle biopsy, blood work, etc.). This doctor has seen CFS/ME patients before and does not usually detect the types of muscle problems I have in them. I then got in to see a mitochondrial disease specialist who has been working with my neurologist, suggesting particular tests and vitamins/supplements. <br />
<br />
Read my <a href="http://alysonscfidsblog.blogspot.com/2012_02_01_archive.html" target="_blank">February</a>, <a href="http://alysonscfidsblog.blogspot.com/2012_03_01_archive.html" target="_blank">March</a>, and <a href="http://alysonscfidsblog.blogspot.com/2012_04_01_archive.html" target="_blank">April</a> blog entries to catch up on the full story.<br />
<br />
Last month I received my first set of mitochondrial disease testing results. It's taken so long to get results because I asked that they postpone the testing until we could better afford it. <br />
<br />
The tests done on my muscle biopsy sample were a mitochondrial DNA (mtDNA) analysis and a Mitochondrial Respiratory Chain Enzyme (ETC) analysis. It's my understanding that not many labs in the country perform these specialized tests. <br />
<br />
My mtDNA analysis did not show anything of clinical significance. However, my Mitochondrial Respiratory Chain Enzyme (ETC) analysis results were abnormal. From the lab report:<br />
<blockquote class="tr_bq">
A deficiency was detected in rotenone sensitive complex I+III, which meets major criterion of the modified Walker criteria for the diagnosis of a respiratory chain disorder. A reduction in complex II+III activity was also observed, but not sufficiently reduced to satisfy a diagnostic criterion of mitochondrial respiratory chain disorder. Reduced activities in complex I+III and complex II+III may suggest a CoQ10 deficiency. Mitochondrial electron transport chain disorders may be caused by molecular defects in nuclear or mitochondrial genes. </blockquote>
I hope the image at the top helps make this scientific jargon a bit easier to understand. The mitochondrial disease expert I saw felt these results merited further testing. Additional muscle tissue has been sent to the lab for them to do a testing for CoQ10 deficiency. I am also going to have a nuclear DNA (nDNA) analysis done. <br />
<br />
I am too tired to explain the significance of these different types of tests, but here are a couple of websites that might help a little: <br />
<br />
<a href="http://mda.org/disease/mitochondrial-myopathies/causes-inheritance" target="_blank">What Causes Mitochondrial Diseases</a><br />
<a href="http://www.mitoaction.org/medical-information" target="_blank">Mitochondrial Disorder Medical Information</a><br />
<br />
Time for bed!</div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com5tag:blogger.com,1999:blog-2962097063569112990.post-70652447935766473762012-09-29T13:09:00.000-05:002013-01-07T20:38:56.921-06:00Part III: My Seriously Serious UTI Treatment<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: red;">WARNING</span></strong>: Some people may find the pictures in this post too graphic because they show needles in my arm. See <a href="http://alysonscfidsblog.blogspot.com/2012/09/part-i-my-very-first-urinary-tract.html" target="_blank">Part I</a> and <a href="http://alysonscfidsblog.blogspot.com/2012/09/part-ii-my-very-worst-urinary-tract.html" target="_blank">Part II</a> for background on this post. <br />
<br />
What should have been a simple UTI turned out to be a two and a half week adventure. The doctor(s) at the hospital decided that instead of oral antibiotics, I needed to have five more days of intravenous (IV) antibiotics. <br />
<br />
WHAT?! That's a seriously serious treatment. <br />
<br />
In the end, I think my diagnosis was pyelonephritis, which usually means the infection has reached the kidneys. Though the CT scan of my kidneys (and surrounding area) was clear, the Attending Physician (the doctor in charge of the Resident doctors who had been caring for me) explained that she was concerned the infection was working its way to my kidneys -- which is probably why I was experiencing a cramping pain in my lower back. She also did not like the way I had not responded to all the oral antibiotics...thus, the IV antibiotics. <br />
<br />
She said a nurse would come to my house to teach me how to administer my own IV treatments and let me do it on my own if I felt comfortable. If I didn't feel comfortable, the nurse could come back every day to help. Wow. It was a lot to take in. Having a nurse go to a house to administer IV antibiotics seemed like something only really sick people have happen. <br />
<br />
As a parting gift from the hospital, I got to keep my peripheral IV line (i.e, an IV needle in my arm) so that I didn't have to get stuck with a new needle every day (see photo below). Notice the fashionable green and white striped hospital gown sleeve. <br />
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Sure enough, I learned how to administer my own IV antibiotics -- a surprisingly involved process. It was a little creepy at first, but I could handle it. The home IV was not like the kind I had at the hospital (you know, with a bag and a pole). Instead, the medication was packed in a little balloon-like ball that used pressure instead of gravity to move the IV medication through the tubing (see photo below). </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmj3sZZ86TH9g0iUJo97fQlq6UZB66bUaDuTVvqIc82Un8GBXzh6vDZnqiDAx-3t0HPFMxvoGCU5AYMCWKNgOsKRoaz60b0p2xkJnvOiKrnLMCrakIjwP-ZUeK_Y7n3S6zejiPhuHSiwA/s1600/IMG_0708.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmj3sZZ86TH9g0iUJo97fQlq6UZB66bUaDuTVvqIc82Un8GBXzh6vDZnqiDAx-3t0HPFMxvoGCU5AYMCWKNgOsKRoaz60b0p2xkJnvOiKrnLMCrakIjwP-ZUeK_Y7n3S6zejiPhuHSiwA/s320/IMG_0708.JPG" width="239" /></a></div>
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Unfortunately, the IV needle in my arm didn't make it the full five days. It slipped out of place after a couple of days, so I had to get it removed. The home nurse tried to insert a new IV, but my veins would not cooperate (or she was not particularly skilled at inserting IV's). She finally gave up and used a butterfly needle to administer my IV treatment (see photo below). Because the butterfly needle could not stay in my arm day after day, the nurse had to come back each day to do the rest of my treatments. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ1oKNnsY5FuLw8_vR-vzS1QFTX0ySswKdMocMJFUSPjfJ4fq8xSZHFbvCShezvzXUAQpffXo4FD6Eyltp1E6CdK1leTrL9ftlyPcqyziE1o60KBhOIHkG12-F7r-mxJ8ztHzmtKX-zHo/s1600/IMG_0720.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ1oKNnsY5FuLw8_vR-vzS1QFTX0ySswKdMocMJFUSPjfJ4fq8xSZHFbvCShezvzXUAQpffXo4FD6Eyltp1E6CdK1leTrL9ftlyPcqyziE1o60KBhOIHkG12-F7r-mxJ8ztHzmtKX-zHo/s320/IMG_0720.JPG" width="239" /></a></div>
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As a result of the myriad of oral and IV antibiotics (and despite my best effort with high doses of probiotics), I ended up with a really fun (that's sarcasm) vaginal yeast infection. All I can say is thank goodness for prescription antifungal medications. <br />
<br />
I am happy to report that I am fully recovered from my first and worst UTI, though I'm now paranoid that I'll get another infection that is just as bad or worse. Ugh. Please send my urinary tract good thoughts. :)<br />
</div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com2tag:blogger.com,1999:blog-2962097063569112990.post-32664912091096893752012-09-22T20:08:00.001-05:002013-01-07T20:38:44.930-06:00Part II: My Very Worst Urinary Tract Infection<div dir="ltr" style="text-align: left;" trbidi="on">
Having complications of seemingly simple issues seems to be the story of my life. <br />
<br />
I can't just have a tonsillectomy, I have to have complications that send me to the hospital. I can't just have typical side effects to Trileptal, I have to have an anaphylactic reaction that sends me to the hospital. I can't just have a simple urinary tract infection, I have to end up in the hospital on IV antibiotics. <br />
<br />
Obviously, I've given away the ending to my UTI story. <br />
<br />
Most UTIs are caused by <em>Escherichia coli (E. coli). </em>Since I can't seem to do anything the easy way, my infection was NOT caused by the usual bacteria. Instead, the bacteria I had was an antibiotic-resistant <em>Klebsiella pneumoniae. </em>And, of course, it was completely resistant to the the antibiotic I had been prescribed (Macrobid/Nitrofurantoin). See below for my urine culture results:<br />
<blockquote class="tr_bq">
RESULT: Greater than 100,000 CFU/mL of Klebsiella pneumoniae<br />
K.pneumoniae<br />
----------------<br />
INT MIC<br />
AMPICILLIN R > = 32<br />
AMP/SULBACTAM R > = 32<br />
CEFAZOLIN S < = 4<br />
CEFEPIME S < = 1<br />
CEFTRIAXONE S < = 1<br />
CIPROFLOXACIN S < = 0.25<br />
ERTAPENEM S < = 0.5<br />
GENTAMICIN S < = 1<br />
IMIPENEM S < = 1<br />
LEVOFLOXACIN S < = 0.12<br />
NITROFURANTOIN R 128<br />
TOBRAMYCIN S < = 1<br />
TRIMETHOPRIM/SULFA R > = 320<br />
Legend:<br />
S = Susceptible I = Intermediate R = Resistant NS = Not Susceptible</blockquote>
You'll notice that there is a big R next to Nitrofurantonin, which indicates the bacteria I had was resistant to the antibiotic I had been prescribed. The reason I did not feel better over the weekend was because my antibiotic was doing nothing! Fortunately, the urine culture results came in on Monday, so the PA prescribed a new antibiotic that the bacteria was supposed to be susceptible to (and that I was not allergic to).<br />
<br />
Unfortunately, I did not feel any better on the new antibiotic (in fact, I was feeling worse; pain had started to spread to my lower back), so I made an appointment with a doctor for that Thursday -- exactly one week after my symptoms started. The doctor decided that I was not on a strong enough antibiotic, so she changed my antibiotic. By the following Monday, my symptoms had not improved. I felt a constant cramping feeling in my lower pelvis and back; I was nauseated and running a 100-degree temperature. By now, I'd been sick for about a week and a half. <br />
<br />
I called the doctor's office, and they instructed me to go to an Emergency Room rather than come into the office. The ER? I felt awful, but I didn't feel THAT sick. Oh well, what could I do but follow the doctor's orders. And just like that, my very first UTI became my very worst. <br />
<br />
As my husband was driving me to the Emergency Room, I commented to him that I hoped we'd be back home in time for dinner. I figured the ER would give me some IV antibiotics and send me home that day with a new prescription. No such luck. <br />
<br />
While the ER doctor did order IV antibiotics, he also wanted to keep me in the hospital overnight. Really?! I told the ER doctor that I felt sick, but not that sick. He smiled and said they wanted to keep me overnight for additional tests and observation. I thought he was speaking in code and really meant "we just want your money." <br />
<br />
While in the hospital, I had a CT of my abdomen and was poked and prodded by numerous doctors (Residents) throughout the night. I had multiple blood tests, a urine test, and two IV antibiotic treatments over the course of 24 hours. The hospital I happened to be in was a teaching hospital, so I also kept having to repeat my medical history over and over. I got very little sleep during my stay (my snoring roommate didn't help). I was glad that I would be going home after just one night.<br />
<br />
Before I could leave the hospital, the Attending Physician (i.e., the senior doctor in charge of the Residents) had to review my case. I assumed I would be prescribed some sort of antibiotic to take home. I was right, but I was surprised by the prescription. <br />
<br />
I'll write more about my unusual prescription in my next post. <br />
</div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com3tag:blogger.com,1999:blog-2962097063569112990.post-61595878862665497682012-09-16T19:36:00.002-05:002013-01-07T20:38:30.121-06:00Part I: My Very First Urinary Tract Infection<div dir="ltr" style="text-align: left;" trbidi="on">
<strong><span style="color: red;">WARNING</span></strong>: I include some medical-related descriptions that sensitive people might find graphic. Read at your own risk! <br />
<br />
Peeing blood is probably one of the most disturbing symptoms I've ever experienced. It's not the most painful or dangerous I've had, but there's no mistaking that something is going wrong with the body.<br />
<br />
It all started the evening of Thursday, August 2. I made a pre-bedtime trip to the toilet and did my business. My bladder felt a little weird (not painful, just different) when I went, but I didn't think much of it. <br />
<br />
Less than 30 minutes later, I felt the urge to pee again. I tried to go, but very little came out, and what little came out seemed to cause some odd cramping in my bladder. I looked down at the toilet paper after wiping and noticed that it had pink on it -- almost like diluted blood. It wasn't my period, so I was a bit concerned...but I also thought it could have been something I had eaten. <br />
<br />
The next morning I did my business again, and had a stronger cramping and discomfort and again found pink on the toilet paper. This time I was almost positive it was blood. I quickly got an appointment for that Friday morning with a Physician's Assistant (PA) at a local clinic. <br />
<br />
I had never had a urinary tract infection (UTI) before, but I was pretty sure this had to be one. When I gave my urine sample at the clinic, I gasped when I saw what was in the cup. It was dark with blood, and this time there was red (not pink) on the toilet paper when I wiped. When the results of the urinalysis came back, there was no doubt I had an infection. Following are my urinalysis results (comments indicate abnormal result):<br />
<blockquote>
Color: Dark Amber (should be yellow or straw colored)<br />
Clarity: Turbid (should be clear)<br />
Glucose: Negative<br />
Bilirubin: Negative<br />
Ketones: Negative<br />
Specific Gravity: 1.010<br />
Blood: Large 3+ (should be negative)<br />
PH: 7.5<br />
Protein: 2+ (should be negative)<br />
Urobilinogen: 0.02 E.U/DL<br />
Leukocyte Esterase: 3+ (should be negative)<br />
Nitrite: Negative</blockquote>
The PA agreed that I had a UTI and prescribed an antibiotic and phenazopyridine (for the pain and cramping...it turns pee orange). As I am allergic to the entire quinolone class of antibiotics (e.g., Cipro, Levaquin, etc.), she prescribed Macrobid (generic: nitrofurantoin). She then said she was going to send my urine sample to a lab to for a bacterial culture to determine what type of bacteria I had and if it was resistent to any antibiotics. Doing the culture would ensure I was given the correct prescription. <br />
<br />
I filled my prescription on my way to work and didn't think too much about the culture. I figured I'd feel better in a day or two...but I didn't.<br />
<br />
Continued in my next post...<br />
<br />
</div>
alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com3tag:blogger.com,1999:blog-2962097063569112990.post-78248122330977196842012-06-12T08:39:00.001-05:002012-06-12T22:44:55.758-05:00Still Here!<div dir="ltr" style="text-align: left;" trbidi="on">
I'm sorry about the long silence. Things have been rough lately. A series of unfortunate events have distracted me from blogging. In a nutshell, my favorite uncle passed away, my hubby and I are going through a stressful time, and I've been sicker than usual (100 degree temperature, intestinal distress, stubborn cold sores, swollen lymph nodes, etc.) -- not necessarily in that order.<br />
<br />
I'll write more when I feel up to it, but just know I will return to blogging. Thanks for understanding!<br />
<br />
Alyson</div>alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com6tag:blogger.com,1999:blog-2962097063569112990.post-7453301804128709552012-05-12T07:41:00.002-05:002012-05-12T07:41:00.662-05:00ME/CFS Awareness Day<a href="http://meaware.wordpress.com"><img title="ME/CFS Awareness" src="http://meaware.wordpress.com/files/2009/03/ribbon_whiteback_large_sq.jpg" alt="ME/CFS Awareness" width="329" height="329" /></a>alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com0tag:blogger.com,1999:blog-2962097063569112990.post-66187908618158962682012-04-22T15:59:00.000-05:002012-04-22T16:01:44.117-05:00Supplements Working or Placebo Effect?<div dir="ltr" style="text-align: left;" trbidi="on">
I seem to have more energy lately. <br />
<br />
I've been able to do more chores around the house like dishes and laundry. To a normal healthy person, dishes and laundry might not seem like a big deal; however, they are high energy activities that have a history of tiring me out. <br />
<br />
Climbing stairs has also become marginally easier. I still feel winded at the top of the stairs, but not to the same degree...I think.<br />
<br />
I'm feeling cautiously optimistic about this newfound energy. In the past, big improvements in energy have often preceded illness or a major crash. I'm making an effort not to overdo things to avoid pushing myself into a crash. <br />
<br />
It has been a couple weeks since starting on my 100 mg CoQ10 and 100 mg B2/Riboflavin three times a day. I have a history of deficiencies in vitamins B2 and D, iron, and CoQ10 (as well as glutathione), so it makes sense that I might feel a bit better with such high doses of B2 and CoQ10 supplements. <br />
<br />
I would like to think the supplements are actually helping me feel better, though I am open to the possibility of a placebo effect. Whatever the case I'm feeling an improvement, so I'm not going to look a gift horse in the mouth (what does that really mean, anyway?) and enjoy things while they last. <br />
<br />
In case you're interested, here's my latest daily supplement/Rx list:<br />
<ul style="text-align: left;">
<li><strong>Multivitamin</strong>, 1x day (I rotate between three brands: Centrum (1 tablet), Holistic Health Neurological Health Forumla (2 tablets), and Brainstrong Prenatal Vitamin (1 tablet + 1 DHA softgel). No, I'm not pregnant; I take the prenatal vitamin because it has a higher dose of biotin than most vitamins. I rotate vitamins because each is different in content and amounts.)</li>
<li><strong>500 mg Calcium + </strong><strong>800 mg Vitamin D</strong>, 2x day (I take Caltrate Gummy Bites -- yum!)</li>
<li><strong>100 mg Coenzyme Q10</strong>, 3x day</li>
<li><strong>B-Complex vitamin</strong>, 1x day (includes 100 mg B1/Thiamin, 100 mg B2/Riboflavin, 100 mg Niacin, 100 mg Vitamin B6, 400 mcg Folate, 100 mcg B12, 100 mcg Biotin, 100 mg Pantothenic Acid)</li>
<li><strong>100 mg Vitamin B2/Riboflavin</strong>, 2x day (I only take this pill 2x day because the B-complex vitamin includes 100 mg B2.)</li>
<li><strong>65 mg Iron</strong>, 1x day</li>
<li>25 mg Zoloft</li>
<li>Yaz birth control pill</li>
<li>1,500 mg Metformin</li>
</ul>
If you are a long-time reader of my blog, you'll notice that this list is quite a bit shorter than previous lists. The truth is that I got tired of taking so many darn pills all the time, so I decided to cut back for my own sanity.<br />
<br />
I realize that I could possibly feel even better if I took additional supplements (NAC, ATP, potassium, fish oil, etc.) or went back on the various protocols I've tried in the past, but I just got so resentful and angry at my exploding pill box. I had to stop the madness.<br />
<br />
My new rule is that everything has to fit in my pill box. If it doesn't fit, I'm not taking it! </div>alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com0tag:blogger.com,1999:blog-2962097063569112990.post-76082410157569115172012-04-09T09:00:00.003-05:002012-04-09T09:06:16.746-05:00Ugh! Non-Specific Results<div dir="ltr" style="text-align: left;" trbidi="on"><strong><span style="color: red;">The following blog entry was originally posted on 4/6. A note at the bottom was added on 4/9.</span></strong><br />
<br />
This is the story of my life -- non-specific symptoms, inconclusive results. Ugh!<br />
<br />
MUSCLE BIOPSY RESULTS <br />
<br />
I went to the neurologist this afternoon to get my muscle biopsy results. My results were slightly abnormal, but not abnormal enough to figure anything out. Here's an excerpt from the five page report my doctor gave me:<br />
<blockquote class="tr_bq">There are scattered atrophic fibers, most of which are type 2 fibers. This tendency for type 2 fiber atrophy is non-specific and can be seen in chronic deconditioning, steroid use, or myopathy related to underlying endocrine disorders. Specifically there are no ragged red fibers, ragged blue fibers, and all the oxidative enzymatic reactions were normal thus no evidence of mitochondrial abnormalities is present. There is no evidence of denervation, reinnervation, abnormal deposits, inflammation or vasculitis. </blockquote><blockquote class="tr_bq">Impression: Abnormal muscle biopsy. Tendency for type 2 fiber atrophy. </blockquote>Basically, there is no obvious evidence of any major neuromuscular disease OR mitochondrial disease, but my results were still abnormal. <br />
<br />
I asked the neurologist about the "chronic deconditioning" and she said she typically doesn't see this degree of atrophy in people my age. She said something about 80 year-old's, but I missed half of what she said because I was still processing my results. Maybe she was comparing my level of atrophy to that of an 80 year-old. I know I am not nearly as active as most people my age or as active as I used to be; however, I am not <i>completely </i>inactive because I still work full time and live and work in places with stairs that I have to take.<br />
<br />
I asked how my results compared to other people with ME/CFS that she's seen, and I was surprised when she said that she doesn't usually perform muscle biopsies on people with this ME/CFS. She said decided to do the biopsy on me because she felt my particular medical history and symptoms were such that further testing were indicated.<br />
<br />
I commented to the doctor that I seem to receive the label "non-specific" quite often and that I keep having things just slightly wrong with me but not wrong enough for them to explain much. For a moment, I expected the doctor to tell me that this was all she could do, and I would just have to live with these non-specific results. I also thought she'd blame my lack of exercise for all my symptoms. <br />
<br />
Fortunately, the doctor did not respond in the way I expected. In fact, she surprised me with her support. <br />
<br />
She said what we do know is that my results are not normal. Furthermore, <b>my results are abnormal enough that she thinks it's worth pursuing additional testing on my biopsy tissue to check for other mitochondrial diseases.</b> I can't tell you how good it feels to have a doctor take me seriously and be so supportive in my quest for answers!<br />
<br />
My neurologist will be in touch with the mitochondrial disease expert I met with a while back to discuss what additional tests to do on my muscle sample.<br />
<br />
In the meantime, my neurologist is starting me on a mitochondrial disease "treatment" to see how I do. She has prescribed 100 mg of Co-enzyme Q10 three times a day and 100 mg of riboflavin (vitamin B2) three times a day (these supplements are available over the counter). Coincidentally, I had micronutrient testing done several years ago and was found to be deficient in both CoQ10 and riboflavin. For some reason I stopped taking CoQ10 (I don't really even remember why), and I switched from B2 supplements to a general B-complex vitamin that contained B2. <br />
<br />
I guess I'm going back on the CoQ10 and B2, but this time the doses will be higher than I took before. Here is an interesting link to some <a href="http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934635#Supplements" target="_blank">treatments and therapies</a> often used for mitochondrial disease. <br />
<br />
SLEEP STUDY RESULTS<br />
<br />
I mentioned a few posts ago that I had a sleep study done. My sleep study was followed by a Mutiple Sleep Latency Test (MSLT), which took up most of the day. <br />
<br />
Several years ago my ME/CFS doctor suggested I get a sleep study because I was complaining of insomnia. To my surprise I was diagnosed with obstructive sleep apnea and prescribed a continuous positive airway pressure (CPAP) machine. I quickly stopped using the CPAP because it was noisy and kept me from sleeping rather then helping me sleep. <br />
<br />
Because I am on a mission to look for ways to reduce my constant fatigue, I decided to get another sleep study so that I could get a new CPAP. I had my old results sent to my doctor. To my surprise, the sleep doctor I met with said that my old sleep study results seemed strange. <br />
<br />
In fact, the five-year old document gives me the diagnosis of sleep apnea but also states that I had zero apnea incidences! What made the old sleep study results even more fishy was that they said my main complaint was excessive snoring and waking up gasping for breath. I have NEVER complained of this. What?! Had I been given a false diagnosis of sleep apnea just so they could sell me a CPAP?<br />
<br />
The good sleep doctor suggested that I go ahead and have another sleep study done and also suggested I do an MSLT to check my daytime sleepiness. I should probably mention that I was open with my CFS/ME diagnosis from the start, but he still thought the sleep study and MSLT were options worth pursuing. I've been really lucky lately because the doctors I've seen have been aware of my CFS/ME diagnosis but still treated me with respect and didn't blow me off. <br />
<br />
Here are the important notes from the two page sleep study report:<br />
<blockquote class="tr_bq"></blockquote>When I got these results from the sleep study, I felt so mad at the old sleep study company. I will refrain from jumping on my soapbox about medical ethics for now. <br />
<br />
The MSLT was unlike anything I'd ever done before. Basically, I spent the day at the sleep study facility and was given opportunities to take 15 minute naps every two hours. The mean part is that every time after I fell asleep, they'd wake me up. It was awful! When I nap, I usually sleep for hours...not minutes. <br />
<br />
I had inconclusive results. Surprise, surprise! My results were abnormal, but not abnormal enough to mean much. Here are the important notes from the MSLT report:<br />
<blockquote class="tr_bq">The results indicate some level daytime sleepiness but are not consistent with a diagnosis of narcolepsy. </blockquote>My doctor labeled me with idiopathic hypersomnia -- meaning sleeping too much for unknown reasons. <br />
<br />
At least my MSLT confirmed what I had always thought but never actually had any data to back up -- that I am often tired AND sleepy. "Tired" is more of a worn out feeling, while "sleepy" is the sensation of wanting to sleep. <br />
<br />
The doctor asked if I wanted to try the medication Provigil (generic: <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000196/" target="_blank">modafinil</a>), which is used to treat daytime sleepiness. After doing some reading, I've found that modafinil is often prescribed to patients with MS to help their fatigue. There are also some patients with ME/CFS who use the medication. Here's a <a href="http://www.cfids.org/cfidslink/2009/090204.asp" target="_blank">2009 article</a> by the CFIDS Association of America on Provigil. Note: Provigil's generic equivalent is now available in the US. <br />
<br />
I have decided to try generic modafinil (which costs me just $10 for a month's supply, thanks to my insurance company) to see if it helps me feel any better. I have some reservations about taking the drug. It is not an amphetamine, but it does have stimulant properties. I will try my first dose this weekend. I'll be sure to report on how things go!<br />
<br />
Time for bed.<br />
<br />
---------------<br />
<strong><span style="color: red;">Note Added 4/9/12</span></strong><br />
<br />
I've decided to postpone taking the modafinil for a little while. I have a history of experiencing the rare and unusual side effects of medications (including anaphylaxis), so I'm waiting until my immune system calms down a little. <br />
<br />
My immune system is currently in an allergic state because I was recently (though unintentionally) exposed to dairy/casein, so I'm dealing with itchy rashes at the moment. Some of the prepared foods I've eaten in the past few days must have had hidden dairy. <br />
<br />
I try to ask about ingredients before I eat something if I haven't prepared it myself, but sometime either I forget to ask OR the person answering doesn't really understand food allergies and says the food is safe when it really isn't. Whatever the case may be, I am itchy. <br />
<br />
I think these recent developments are actually good because I'll be able to see if the CoQ10 and B2 make me feel better without the use of modafinil. I'll keep you updated!<br />
<br />
<br />
</div>alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com7tag:blogger.com,1999:blog-2962097063569112990.post-89071517956506575972012-04-06T09:38:00.000-05:002012-04-06T09:38:01.155-05:00Waiting Anxiety<div dir="ltr" style="text-align: left;" trbidi="on">I'm supposed to get my biopsy results THIS afternoon. I think I must be suffering from "waiting anxiety" because I am finding myself very distracted from everything going on around me. I have all sorts of thoughts and feelings and "what if's" floating around in my head. <br />
<br />
I can't decide if I want the results to be completely normal or if I actually want something to be wrong. I guess I don't want anything too serious to be wrong, but I want something to be wrong enough (but easily treatable!) to explain my health issues. Am I crazy for thinking this way? <br />
<br />
In other news, I have to say that I really like ScarAway. I'm not allergic to it, and it protects the biopsy site from clothing irritation. The scar itself has not improved much in the short time I've been using the product, but I'm not concerned because I was really looking for protection rather than aesthetics. </div>alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com0tag:blogger.com,1999:blog-2962097063569112990.post-58608148827688420752012-04-05T07:03:00.000-05:002012-04-05T07:03:39.023-05:00Quick Note: Biopsy Results Tomorrow<div dir="ltr" style="text-align: left;" trbidi="on">After more than SIX WEEKS, I am finally going to get my muscle biopsy results...tomorrow. I just made the appointment on Tuesday, and these last few days seem longer than the six weeks I've been waiting!<br />
<br />
I'll post my results tomorrow night. <br />
<br />
P.S. To my regular readers/subscribers: I'm sorry about the recent spam! I've deleted it from my blog; however, if it gets worse, I'll have to add a moderator approval step for comments -- which I've tried to avoid. </div>alysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.com0