tag:blogger.com,1999:blog-90587452458321427202024-03-06T12:01:30.028-08:00CVID: The Elusive DiseaseThis blog details the struggles that I have encountered while searching for a diagnosis and in getting treatment. If you get sick frequently and can't find answers, read this blog...it might steer you in the right direction! If you have any medical questions about things that are said on this blog, please consult a medical professional. HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-9058745245832142720.post-58948949973148684932017-07-08T17:09:00.001-07:002017-07-08T17:13:53.157-07:00Some Thoughts About Stigmas<p dir="ltr">What do mental illness and Primary Immune deficiencies have in common? They are both stigmatized due to fear and misinformation. In the case of Primary Immune Diseases such as CVID, they are conditions that many are born with where part of the immune system didn't develop properly; while others are born with just a genetic predisposition for it then some event (e.g.: pregnancy, environment, trauma) triggers the immune system to fail later in life. What we do know is that it is not acquired through lifestyle choices or promiscuity, and it is NOT contagious! </p>
<p dir="ltr">Some of us can be treated with infusions of antibodies derived from plasma donations, but others (like me) aren't so lucky. Nevertheless, there is currently no cure, and the plasma infusions can be tortuous. Primary Immune Diseases significantly increase the likelihood of developing certain kinds of cancer and many autoimmune diseases (e.g. rheumatoid arthritis, Chrohn's disease, ulcerative colitis, sjogren's disease, etc).</p>
<p dir="ltr">So before you get irritated that a friend with CVID has to cancel an outing with you AGAIN, or say unkind things like "she must have some unconfessed sin keeping her sick", or think "why can't I come over, it's just a cold?" take a moment to educate yourself about this condition. Think about what it's like being sick ALL the time, and how much you hate just having a cold...something that causes a cold or rash to you could cause pneumonia or another life-threatening condition to us. Those of us who can't have infusions are like a soldier walking into a battlefield without weapons or any defense...our best option to protect ourselves is to avoid exposure.</p>
<p dir="ltr">Oh, and another thing that mental illness and Primary Immune Diseases have in common is that dealing with judgment from friends and family, dealing with a medical system that's inadequate to help people with rare diseases, and being called irresponsible or lazy because of our illness causes massive amounts of anxiety and depression. </p>
<p dir="ltr">To all of my loved-ones who have stuck by me through thick and thin, thank you with all my heart. Your compassion and understanding help give me the strength to keep fighting.</p>
<p dir="ltr">For more information, please visit: <a href="http://primaryimmune.org">Primaryimmune.org</a> or <a href="http://cvidawareness.org">cvidawareness.org</a></p>
HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-9028313630018349302017-06-27T22:15:00.001-07:002017-06-27T22:42:52.054-07:00The Big Sick -- A New Movie Raising Awareness<p dir="ltr">I'm hearing good things about this movie. The writer, <a href="https://www.earnthenecklace.com/kumail-nanjiani-wife-emily-v-gordon-wiki-age-instagram-pics">Emily V. Gordon</a> announced back in February that she has CVID, and this romantic comedy (The Big Sick) is partially inspired by her experiences with having it. The movie is  scheduled to be released nationwide July 14, but is currently available in select cities and the reviews are good. What a great way to raise awareness!</p>
<p dir="ltr"><a href="https://youtu.be/UbSVv-EybcA">Click here to watch the official trailer</a> (on YouTube)<br><br></p>
HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-69623075609318093902014-08-31T15:56:00.003-07:002014-09-04T21:26:05.449-07:00We Have a Challenge!Hi all,<br />
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Similar to the popular <i>ALS Ice Bucket Challenge</i> that's been everywhere for the last few months, CVID and Primary Immune (PI) patients now have a challenge. Ours is called <i>Pie for PI</i>. If you want to participate, please make a video of yourself getting a pie in the face and challenge others to participate within 24 hours. Please be sure to mention in your video (or in comments) that donations can be made to the <a href="http://primaryimmune.org/" target="_blank">Immune Deficiency Foundation</a> (IDF) or the <a href="http://jmfworld.org/" target="_blank">Jeffrey Modell Foundation</a>. For more information on the challenge, please visit the Facebook page: <a href="https://www.facebook.com/PieforPI">https://www.facebook.com/PieforPI</a><br />
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Thanks for spreading awareness!HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-36837252585760394502013-11-12T21:19:00.000-08:002014-01-25T19:13:31.228-08:00New CVID Awareness Website and YouTube Video<div style="text-align: justify;">
A friend with CVID has been feeling inspired to spread CVID awareness, and for that reason has recently created the website, <a href="http://cvidawareness.org/" target="_blank">cvidawareness.org</a>. The website is still being created but is available right now and already very informative. It will be a huge asset in educating people about CVID and Primary Immune Diseases. Please visit the website and learn all you can for yourself or your loved ones with Primary Immune Diseases.<br />
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In addition, he made a YouTube video that shows him creating the website. Please check it out!</div>
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<iframe allowfullscreen="" frameborder="0" height="480" src="//www.youtube.com/embed/_kH7DahwV7k" width="640"></iframe>HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-57982330801923699882013-10-20T21:38:00.000-07:002013-10-21T19:55:04.194-07:00New US Patent Granted for Immune System Gene Sequencing Method<div style="text-align: justify;">
There seems to be a lot of breakthroughs in the medical industry related to the immune system lately, and I'm so excited to hear about them! In fact, a recent article titled <a href="http://www.pharmabiz.com/NewsDetails.aspx?aid=78254&sid=2" target="_blank">Adaptive Bio receives US patent for next generation immunosequencing field</a> in <a href="http://pharmabiz.com/" target="_blank">Pharmabiz.com</a> (an online pharmaceutical journal in India) stated the following:</div>
<blockquote class="tr_bq" style="text-align: justify;">
"Adaptive Biotechnologies Corporation...has obtained a notice of allowance in US Patent Application Serial No. 12/794,507, titled “Method of Measuring Adaptive Immunity""</blockquote>
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Adaptive Biotechnologies has apparently come up with a new way of sequencing the adaptive immune system (Killer T Cells and B Cells) to aid in a range of applications related to immune system dysfunction. This technology will help the medical industry make advancements in the monitoring and treatment of cancer and other immune (and auto-immune) diseases.</div>
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HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com2tag:blogger.com,1999:blog-9058745245832142720.post-51406394322334676302013-10-17T23:53:00.000-07:002013-10-17T23:53:38.498-07:00Recent Study Discovered a New Gene Associated with Causing CVID!<div style="text-align: justify;">
Today I received notice of a new article on CVID and the information is pretty exciting! In Utah a mother with two children (all of whom have CVID) enrolled in a genetic study for CVID and the researchers discovered another gene mutation associated with causing CVID. In addition to testing the mother and her two children they also found another person (out of 35 tested) who also had the gene mutation. They don't know whether it was a mutation that all four of these people were born with or whether the gene mutated due to some other cause.</div>
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The article, from <a href="http://www.sciencecodex.com/" target="_blank">The Science Codex</a>, titled "<a href="http://www.sciencecodex.com/mutation_in_nfkb2_gene_causes_hardtodiagnose_immunodeficiency_disorder_cvid-121264" target="_blank">Mutation in NFKB2 gene causes hard-to-diagnose immunodeficiency disorder CVID</a>" states: </div>
<blockquote class="tr_bq" style="text-align: justify;">
"NFKB2 gene impairs a protein from functioning properly, which interferes with the body's ability to make antibodies and fight infection."</blockquote>
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The article also stated that there's a new test developed by ARUP Laboratories that involves testing for this gene mutation that will be available in May of 2014. The new test will help doctors diagnose CVID. I hope that this new test will help CVID patients who are borderline in terms of antibody numbers get a more definite diagnosis that will ensure insurance will authorize treatment for them. No more of this "We won't cover because your numbers are borderline and your doctor didn't test your pneumonia titers to see if you built antibodies". Wouldn't that be wonderful? Too many of my friends in my CVID support group have had to wrestle with insurance companies to get treatment because their doctors weren't knowledgeable enough to follow a diagnostic criteria that insurance companies would honor. I'm blessed in that regard, despite the fact that I am not currently getting IVIG treatments.</div>
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This is so exciting because it means that there is more research being done to find out the cause of CVID and they are making discoveries that could one day lead to a cure! I expect that somehow I may have interacted with the woman in this study. There are few enough of us in the United States that it's not that unreasonable an assumption. If so, or if you are reading this, thank you for getting involved to help get us some answers! :)</div>
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<br />HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-5472688723962875702013-09-28T19:15:00.000-07:002013-09-28T19:18:04.943-07:00FDA Warning: Tygacil (tigecycline): Drug Safety Communication - Increased Risk of Death!!I received this warning via email today and felt obliged to pass it on. I've never heard of <a href="http://en.wikipedia.org/wiki/Tigecycline" target="_blank">Tygacil</a>, but it is an IV drug used to treat <a href="http://en.wikipedia.org/wiki/Complicated_skin_and_skin_structure_infection" target="_blank">complicated skin and skin structure infections (cSSSI)</a>, <a href="http://www.wjes.org/content/8/1/1" target="_blank">complicated intra-abdominal infections (cIAI)</a>*, and <a href="http://en.wikipedia.org/wiki/Community-acquired_pneumonia" target="_blank">community-acquired bacterial pneumonia</a> (CABP), so I think this is an appropriate venue to share it.<br />
<blockquote class="tr_bq">
"FDA notified health professionals and their medical care organizations of a new Boxed Warning describing an increased risk of death when intravenous Tygacil is used for FDA-approved uses as well as for non-approved uses." (from <a href="http://drugs.com/">Drugs.com</a> -- <a href="http://www.drugs.com/fda/tygacil-tigecycline-safety-communication-increased-risk-death-13395.html" target="_blank">Tygacil (tigecycline): Drug Safety Communication - Increased Risk of Death</a>)</blockquote>
The increased risk of death is only 0.7% compared to other antibiotics, but is still significant enough to be added to package warnings, and I expect most people would prefer to have this drug used when there are no other options left.<br />
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Be well my friends!<br />
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*Refer to the "Introduction" section of this article to get a better understanding of cIAI (from the <a href="http://www.wjes.org/" target="_blank">World Journal of Emergency Surgery</a>)HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-81407998142391477082013-09-28T00:00:00.002-07:002013-09-28T00:00:42.811-07:00Results of New Research: We May be Able to Enhance the Immune System!There seems to be a lot of research being done on the immune system these days, and that's good news for all of us! In fact, I just read an article tonight that researchers have discovered that the Killer T-cells of a person's immune system can be enhanced to fight infections. That may not directly help those of us with CVID, since our deficiency is usually in the B-cells, but it's still exciting for two reasons:<br />
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<ol>
<li>They are researching the immune system and some of that research will benefit those of us with CVID (Read: We are not forgotten!)</li>
<li>They are finding ways to improve the overall immune system</li>
</ol>
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The study built on a theory from the former director of the <a href="http://www.wehi.edu.au/" target="_blank">Walter and Eliza Hall Institute</a> (an Australian medical research facility), Sir Macfarlane Burnet, an Australian Nobel Prize Laureate. Apparently, he came up with the theory 55 years ago. The following quote is an excerpt from the article in <a href="http://vaccinenewsdaily.com/" target="_blank">The Vaccine News Daily</a>:</div>
<blockquote class="tr_bq">
"The team discovered the IRF4, an important protein activated in the killer T-cells, could be produced at different levels depending on how well the killer T-cells recognized infected cells. The researchers discovered that enhancing the levels of IRF4 could help to boost killer T-cells effectiveness in fight infections and other diseases." (From article: <a href="http://vaccinenewsdaily.com/medical_countermeasures/327517-enhancing-immune-system-may-be-possible/" target="_blank">Enhancing Immune System May be Possible</a> by Emma Rogers)</blockquote>
While it may come across as pandering for me to it here, I find the following handout from the <a href="http://primaryimmune.org/" target="_blank">Immune Deficiency Foundation (IDF)</a> to explain the various cells of the immune system in a clear way that's actually kind of fun to read: <a href="https://primaryimmune.org/wp-content/uploads/2011/04/Our-Immune-System.pdf" target="_blank">Our Immune System</a>.<br />
HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-42210380785697970052013-09-25T18:00:00.002-07:002013-09-25T18:45:02.520-07:00New Resarch Regarding Development of Autoimmunity in Patients with CVIDThe results of a CVID study were recently published in the <a href="http://www.jci.org/" target="_blank">Journal of Clinical Investigation</a>. In this study, Yale researchers Eric Meffre and his colleagues found that CVID patients with a single mutation in the tumor necrosis factor receptor superfamily (<a href="http://en.wikipedia.org/wiki/TNFRSF13B" target="_blank"><i>TACI)</i> </a>led to development of autoimmune diseases; whereas those with two mutations of <i>TACI </i>did not develop autoimmune diseases.<br />
<blockquote class="tr_bq">
"When associated with CVID, a single TACI mutation predicts the development of autoantibody-mediated autoimmune disease, whereas patients with two mutated alleles are mostly spared clinical autoimmune conditions, suggesting a complex role for TACI in maintaining B cell tolerance" (From article: <a href="http://www.jci.org/articles/view/69854?key=6b28b9a1ced274a85616" target="_blank">CVID-associated TACI mutations affect autoreactive B cell selection and activation</a>, Published September 24, 2013)</blockquote>
A recent article published by <a href="http://www.sciencecodex.com/" target="_blank">Science Codex</a> (<a href="http://www.sciencecodex.com/jci_early_table_of_contents_for_sept_24_2013-119917" target="_blank">Development of Autoimmun</a><span style="font-family: inherit;"><a href="http://www.sciencecodex.com/jci_early_table_of_contents_for_sept_24_2013-119917" target="_blank">ity in Patients with Common Variable Immune Deficiency</a>) </span><span style="font-family: inherit; line-height: 1em;">explained the findings more clearly for those of us without advanced biology degrees: </span><br />
<blockquote class="tr_bq">
"The (research study) authors found that CVID patients with a single altered TACI allele maintained some residual B cell responsiveness that promoted development of autoantibodies, whereas individuals with 2 mutated copies of TACI have complete impairment of B cell responses, which likely prevents autoimmunity."</blockquote>
My question, is it truly better to have total impairment of B cell responses? I grant that being free of autoimmune diseases is a blessing, but what about the little infection-fighting that we have with some B cell responsiveness? I don't understand the biological terminology in the Journal of Clinical Investigation article enough to tell whether there is enough B cell responsiveness left in people with only one <i>TACI </i>mutation to fight infections. If so, which is more beneficial? At the very least this research answers some of our questions about why we can develop autoimmune diseases with broken immune systems. For those of us with CVID, answers are truly a gift. Thank you, Eric Meffre and colleagues for your efforts.<br />
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<br />HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-61149047579751379652013-09-21T15:41:00.003-07:002017-02-18T23:28:42.017-08:00Negative Impacts of Stress on the Immune SystemThis morning I was reading an article from Science Daily about how a person's current state of mind can affect their genetic makeup, and as I was reading it I came across a few paragraphs on how stress impacts the immune system. <br />
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"Previous studies had found that circulating immune cells show a systematic shift in baseline gene-expression profiles during extended periods of stress, threat or uncertainty. Known as conserved transcriptional response to adversity, or CTRA, this shift is characterized by an increased expression of genes involved in inflammation and a decreased expression of genes involved in antiviral responses.This response, Cole noted, likely evolved to help the immune system counter the changing patterns of microbial threat that were ancestrally associated with changing socio-environmental conditions; these threats included bacterial infection from wounds caused by social conflict and an increased risk of viral infection associated with social contact."But in contemporary society and our very different environment, chronic activation by social or symbolic threats can promote inflammation and cause cardiovascular, neurodegenerative and other diseases and can impair resistance to viral infections," said Cole, the senior author of the research."</div>
From article: <a href="http://www.sciencedaily.com/releases/2013/07/130729192548.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily+%28ScienceDaily%3A+Latest+Science+News%29">Be Happy: Your Genes May Thank You for It</a> in Science Daily</blockquote>
Many times I have wondered whether a very stressful period of my life could have a negative impact on my immune system. I don't know as I would go so far as to say that it could cause CVID, but I have been under extreme levels of stress and have seen my body break down under the pressure. Recently I was laid off from my job, my serious relationship ended, and my best friend moved out of state, all within 3 months of each other. I have seen a direct impact on my health with multiple respiratory infections and a bout of shingles. I try to counter the effects of stress by using self-hypnosis recordings and focusing on the positives of my life. Other things like a hot bath with relaxing music, a positive book that encourages me to look at all I have to be grateful for, and pampering myself all seem to help. I believe these things all help to offset the negative impacts of stress.HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com1tag:blogger.com,1999:blog-9058745245832142720.post-75904056915523382992013-09-16T18:36:00.001-07:002013-09-16T18:36:16.005-07:00A Positive Twist<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">I recently read a book on gratitude and it said to be grateful for your good health. At first take it came across as callous: I thought "this person has no idea what it's like to have a serious disease that interferes with a normal life". The book went on to say that the gift of health is keeping us alive, and that gave me new insight into my own health. My body has been through so many infections</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">, injuries, and trauma that it's amazing that I'm still here and feel as good as I do. Perhaps, then, I have been given a greater gift of health than a "healthy" person because I have lived through all of these things and am still around. At the very least it is a testament to my strength and endurance. If strength and endurance are evidence of good health, then I think all of us zebras have it in abundance. This way of thinking gives me hope and something to be grateful for, and I hope that it might give some of you a boost for your day.<br /><br />P.s. I now have a post-it that says "The gift of health is keeping me alive" on my bathroom mirror, and it gives me strength.</span>HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-38975703971635035942013-09-05T12:52:00.002-07:002013-09-05T12:53:53.012-07:00Rest in Peace...I'm sad to report that two members of my CVID support group succumbed to complications of the disease over the last few weeks. One had a staph infection that got out of control, and the other aspirated during port surgery.<br />
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Very sad news. Rest in peace.HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-8947999168008379742013-08-22T00:35:00.000-07:002013-09-05T12:41:04.415-07:00Duke University Received 1.3 Million for CVID ResearchI learned yesterday that Duke University received a donation of 1.3 Million dollars for research into CVID. According to the The Chronicle (Duke University's newspaper), the donation funds will be used to "research the genetic mechanisms that give rise to CVID" <a href="http://www.dukechronicle.com/articles/2013/08/20/duke-receives-13-million-medical-research">Duke Chronicle</a>. This research could help improve diagnostic criteria that will help identify CVID patients earlier in life, and potentially prevent long-term damage from infections.<br />
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Duke University has been named one of the United States' top hospitals and is located in Durham, North Carolina.<br />
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<a href="http://pediatrics.duke.edu/sites/pediatrics.duke.edu/files/about_us_banner_4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="185" src="http://pediatrics.duke.edu/sites/pediatrics.duke.edu/files/about_us_banner_4.jpg" width="640" /></a></div>
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(Photo from <a href="http://www.google.com/imgres?imgurl=http://pediatrics.duke.edu/sites/pediatrics.duke.edu/files/about_us_banner_4.jpg&imgrefurl=http://pediatrics.duke.edu/about-department/news/john-sleasman-named-chair-division-allergy-and-immunology&h=220&w=755&sz=66&tbnid=16slplS0zU1q9M:&tbnh=35&tbnw=120&zoom=1&usg=__fBGa-3UmI3wF3nii-RUg6aQSMUY=&docid=F5PpiMsbf0dLRM&sa=X&ei=-74VUp7QKOO7jAKx8ICQDg&ved=0CGcQ9QEwEg">Google Pictures_Duke University</a>)HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-78810026669508547632013-05-18T19:36:00.000-07:002017-02-18T23:34:11.114-08:00A Special Recommendation<br />
I have been making a lot of changes in my life to improve my health, and have stumbled upon a few products that seem to really help. One of them is a Himalayan Salt Inhaler. I bought it after finding that I recovered more quickly than usual after a respiratory infection when I used sea salt in my vaporizer at night. I have now been using it for a few weeks, and it helps my lungs so much! I've been using it daily, and when my lungs feel so congested that I'm afraid I might be getting sick again. The amazing thing is that, unlike anything I've tried before, it takes away the congestion! I also seem to have more strength and energy than I've had in many years! I'm so excited and have more hope than I've had in a very long time!<br />
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<a href="https://www.amazon.com/Natural-Solutions-Himalayan-Inhaler-Respiratory/dp/B00C2GZPJ6/ref=as_li_ss_il?ie=UTF8&qid=1487480020&sr=8-1&keywords=salt+inhaler&linkCode=li2&tag=littlespotted-20&linkId=f97c8e9ec1652846e6dd1defe651e6b1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" target="_blank"><img border="0" src="//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=B00C2GZPJ6&Format=_SL160_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=littlespotted-20" /></a><img alt="" border="0" height="1" src="https://ir-na.amazon-adsystem.com/e/ir?t=littlespotted-20&l=li2&o=1&a=B00C2GZPJ6" style="border: none !important; margin: 0px !important;" width="1" /><br />
There are many different brands of salt inhalers available, but this one is ceramic and has holes (many small and one big for filling) in the bottom like a salt shaker. It arrived with 2 packets of pink Himalayan sea salt crystals. The manufacturers recommend using a packet of salt per month. Just as in ceramic salt shakers, you pour the crystals into the bottom of the inhaler and there is a little plastic plug that fits in the hole. Inside the inhaler, below the mouthpiece, is another layer of ceramic with salt-shaker holes. To use the inhaler, you shake it and with the mouthpiece up, inhale deeply. After holding your breath as long as possible, exhale through your nose. That allows the salt to treat your sinuses as well. The manufacturer recommends using for 10 minutes twice daily. That sounds like a bit of a burden to me, so I sit with it next to me as I go through my day. I even take it to work with me and use it at my desk! I've gotten some weird looks, but I don't care...it makes me healthier! :)<br />
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<a href="http://www.amazon.com/Gift-Ideas-Tools-Hardware/b/ref=as_acph_thi_fdgifts_513_616?_encoding=UTF8&camp=1789&creative=9325&linkCode=ur2&node=506798&tag=littlespotted-20" target="_blank">Shop Amazon Tools - Up to 50 Off Father's Day Gifts</a><img alt="" border="0" height="1" src="https://www.assoc-amazon.com/e/ir?t=littlespotted-20&l=ur2&o=1" style="border: none !important; margin: 0px !important;" width="1" />HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-19710528404183406302011-11-11T21:04:00.001-08:002013-05-08T20:11:13.286-07:00My November '11 Appointment with the ImmunologistI saw my Immunologist yesterday, and I was able to put my mind at ease over some of my concerns regarding stopping my infusions. I have been worried that I had no antibodies to the kinds of diseases that children get immunized for, and my immunologist showed me my most recent test results (2 months after stopping infusions), and said that I have antibodies to those diseases. The part that I'm lacking is in defense against pneumonia-causing organisms like mycoplasma and other nasty things like that. He said that it's actually pretty common for CVID patients to have antibodies to most other diseases and just be lacking in defense against pneumonia. That really puts my mind at ease.<br />
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The one thing I forgot to ask him about is my hair falling out. I am a woman with long straight hair, and I wash it, condition it, and comb it. Lately it's been falling out by handfuls. I'm getting concerned and don't know whether it's CVID related. However, there are quite a few people in my support group who have the same issue.<span style="background-color: #f4cccc;"></span><br />
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I have now been off of my infusions for 6 months and off of Trileptal for 4 months, so yesterday they did some bloodwork to determine whether my antibodies are recovering now that I'm off of the Trileptal. I should know the answer in a few weeks! It would be so amazing and wonderful if I could recover and not have CVID. Of course, I may still be IgA deficient after this, but that would still be better than full-blown CVID!<br />
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On the downside, I'm on my 3rd round of antibiotics (in addition to the prophylactic ones) to kick what I believe is pneumonia. Originally I was sick for 4 or 5 days and seemed to recover on my own. I thought it was a good sign. Then about a week later I realized that I had not only a sinus infection but that it was moving into my lungs. I called for antibiotics, and they told me to take triple my normal dosage for 4-5 days then call to let them know how I was doing. I called on the specified day, and since I seemed to be feeling better and hadn't heard from them, I dropped back down to my maintenance dose the next day. That night I went to bed early and woke up about 9:00 PM with significant chest congestion. I made myself some hot lemonade to help loosen my chest up, and went back to bed. When I woke up the next morning I was so sick and so weak that I had difficulty walking just the few feet to my bathroom. I called the Dr back and they said to take double my normal prescription twice daily for 3 weeks (that was a week ago). I've done that, and have felt my strength returning, but I'm still so weak that I need a wheelchair rather than walking any distance. When I saw my Dr yesterday he believed that I could well have had pneumonia, said I was very pale, and put me on a 3-week course of Cipro. He said it's good at fighting all the nasty little beasties that cause pneumonia.<br />
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I started the Cipro today, so hopefully I'll feel much better in a few days/weeks.HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com2tag:blogger.com,1999:blog-9058745245832142720.post-91869317950316572132011-09-08T17:42:00.000-07:002013-05-18T14:18:29.529-07:00The Scary thing about Epilepsy DrugsAs I may have mentioned in the past, I have epilepsy in addition to CVID, and was diagnosed with it just a few years before my January 2010 CVID diagnosis. In 2009 I was put on a drug that seemed like a miracle to me (Trileptal...aka Oxcarbazapine), as it controlled my seizures with minimal side effects.<br />
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Fast-forward to May 2011, when I found a case study written by Dr. Charlotte Cunningham-Rundles (the leading CVID researcher in the country) linking Trileptal to the cause of CVID in a patient! I was shocked, confused, excited, and even a little bit heart-sick. I spent many days weighing which disease was easier to live with as I knew that my many sensitivities had ruled out most of the seizure drugs that would work on my kind of epilepsy. The thing that made me decide that epilepsy would be the better disease to have to live with was seeing what some of my CVID support group friends suffer with every day, and knowing that I'm not at that point yet but it could be in my future.<br />
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The patient in the case study was taking Trileptal to control pain, and once she was taken off of it her body started rebuilding antibodies within 2 months of stopping it, and had fully recovered except for IgA after 8 months. I then realized that the only way to find out whether Trileptal had caused the CVID would be to stop the taking it, but in order to find out whether my body was building its own antibodies would be to stop my IVIG treatments as well. That seemed like a completely impossible option, as I had just started a new job and didn't see any way I could change seizure drugs without going on extended medical leave while my body and brain adapted to new medications. I tried going onto Topamax with the intent of easing off of Trileptal, but my body didn't like that one at all. After a full week of constant intense nausea and not decreasing the Trileptal dose, my neurologist told me to stop the Topamax, and then he began research to find something else that I could take.<br />
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Time passed. In August I went to an allergist at Stanford to help me with my allergic reactions that I experience despite testing negative to allergens (because I have very low IgE due to the CVID). That Dr ran a test of my blood sodium level and found that it was dangerously low (121). He told me to get an emergency visit with my neurologist to get off of the Trileptal, as Trileptal is known for pushing blood sodium levels down in some people. Luckily, my neurologist had found a new seizure drug called Vimpat (Lacosamide) that seems to work well for me, is not on the list of seizure drugs that may cause CVID, and has minimal side effects...another miracle drug...I hope it is as good as it seems. <br />
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HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com4tag:blogger.com,1999:blog-9058745245832142720.post-51237433358400732062011-07-04T20:51:00.000-07:002013-05-13T18:15:32.020-07:00My June '11 Appointment with the ImmunologistIn June of 2011 I had an appointment with my immunologist. After much discussion, we decided to stop my IVIG infusions (at least temporarily) due to the fact that they were so negatively impacting my quality of life. Even after switching to Gammagard S/D as a weekly sub-Q treatment, I would still lose 2 days every week recuperating from my infusions. I was working full-time and switched my schedule to 10-hr days so I could have every Friday off to accommodate my 8-hr infusions. Every Saturday was spent in bed recuperating, and by Sunday I'd be able to walk around and have a less-intense headache than Saturday...basically every weekend sucked. To make matters worse, in order to keep the side effects minimal, I was on oral steroids the day of my infusion and the day after, and those steroids significantly impacted my mood and many aspects of my life. All-in-all, I was pretty miserable and often thought that I couldn't face a lifetime of infusions every week.<br />
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So we stopped the infusions and my Dr put me on daily prophylactic antibiotics. I now take 250 mg of Ceftin every day. It seems to work as well as the infusions at preventing infections. I'm getting sick at the same rate (about once a month), and when I'm not sick I feel pretty darn good (comparatively). I was afraid that my energy would drop off, but instead it's increased significantly. The combination being off of the Trileptal (which may have caused the CVID) and being off of my infusions also accommodates that nearly-impossible goal that will allow me to find out whether I was born with CVID or whether I had the right genetic makeup for Trileptal to trigger it in me. It will be good to know.HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com2tag:blogger.com,1999:blog-9058745245832142720.post-51085730669364388722011-03-26T22:06:00.000-07:002017-02-18T22:44:01.659-08:00It's Been Awhile...I haven't added anything here for a long time, and for that I apologize. I guess I've been kind of scared about my treatments and got down in the dumps over it. Things have improved tremendously though, so I think it's about time I posted an update.<br />
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I kept having a lot of bad reactions to my treatments and my doctors kept telling me that if I didn't improve, they would have to take me off of all IgG therapy and put me on prophylactic antibiotics. What scared me about that is that I already have significant lung damage from all the infections I've had over the years and prophylactic antibiotics are less effective at treating CVID than IgG therapy. In addition, I tend to develop allergies to antibiotics quickly, and there are already many that I can't take either because they quit working for me, or I suddenly developed an allergy to them. I think we've finally come up with a solution that is working though, and my infusions have been going much better with fewer side effects.<br />
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I now take 20 mg of Prednisone the day of my treatment (an hour or so before I start it), and then another 20 mg of Prednisone the day after my treatment. If I take that and make sure to hydrate well, I tend to not have many reactions, and those that I do have are minor. The only exception to that seems to be if I forget to take my second Prednisone, then about 24 hours after the treatment I will start having trouble breathing.<br />
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The good news though is that I'm recovering more quickly from my infusions too. It used to be that I would feel exhausted and sick for the whole week between infusions, but now I feel weak the day after my treatment, but by the second day after, I feel pretty good! I've actually started looking forward to my infusions because I know they will help me feel better!<br />
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Today I forgot to take my second Prednisone, and so I'm having breathing trouble now. I was trying to figure out what was causing the chest tightness, then suddenly realized I hadn't taken the other pill. I need to make sure I put it in my pill container for the next day.HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com6tag:blogger.com,1999:blog-9058745245832142720.post-52456362577172941972011-01-10T17:27:00.000-08:002013-05-13T18:24:35.936-07:00Infusion #10 Gammagard S/D<br />
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I did my 10th SubQ infusion with Gammagard S/D on Friday, and it was probably my best infusion to date! I'd spoken with the pharmacist at Accredo before I did my infusion, and she confirmed that the leaking during the previous infusion was likely caused by the cuts around the needle sites, so I decided to try the 6mm needles once more. I did the entire infusion myself and everything went very smoothly. No anxiety, no vomiting, no problems whatsoever! </div>
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The next day I took only 10mg of Prednisone (as opposed to the 20 that I'd been taking previously) and I thought I was doing well, but then nearly 24 hours after the end of the infusion I suddenly started having severe breathing trouble. I took the additional 10mg and my inhalers. I had intermittent breathing trouble the rest of the weekend, so I don't think I'll experiment with that again any time soon.<br />
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The Prednisone does seem to be causing a lot of side effects with me that are very difficult to deal with. The worst of them is depression and anxiety. I'm really having a hard time dealing with my mood swings, and I'm very cranky. I Googled vitamin deficiencies caused by Prednisone, and found out that it causes a vitamin B-12 deficiency, so I'm going to increase my daily dose of B-12. I sincerely hope that it helps me deal with the emotional/mental toll that Prednisone takes on me. If you're interested in seeing what I found out about the effects of Prednisone, here's a link: <a href="http://www.copd-international.com/library/corticosteroids.htm">http://www.copd-international.com/library/corticosteroids.htm</a></div>
HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com2tag:blogger.com,1999:blog-9058745245832142720.post-30028033948635653112010-12-30T19:20:00.001-08:002017-02-18T23:21:17.954-08:00Ninth Gammagard S/D Infusion<br />
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I had my infusion yesterday at my boyfriend's house. I wanted to do it early so that I would be able to have a glass of champagne on New Year's Eve. I found out the rough way that if I have alcohol within a day of my infusion that it will make me feel truly awful due to the dehydration that it causes.</div>
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I noticed that I was feeling a bit dizzy and anxious when we were getting ready to do the infusion, so I asked him if he felt comfortable doing the infusion if I were a bit dopey on <a href="http://www.amazon.com/gp/product/B003N0FTNW/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B003N0FTNW&linkCode=as2&tag=cvtheldi-20" target="_blank">Benadryl</a>. I had been feeling sick and tired for the previous 2 days, and, as usual, there are too many variables to really know what was going on. I may be fighting off an illness. I noticed that I never had the anxiety issues with the Benadryl in my system and that it would calm me. I only took one so that I would still be able to coach him as needed. He was wonderful, and did all of the needles for me. Some of the needles hurt due to the Gammagard having gotten into them, but it didn't phase me. I took the 2nd Benadryl after the infusion had started and took all the regular premeds at the appropriate times. I had to take my rescue inhaler periodically during the infusion, and more <a href="http://ecx.images-amazon.com/images/I/71ulcPhwq3L._SL1500_.jpg" target="_blank">Tylenol </a>(as I had a headache that wouldn't go away, but didn't take more Benadryl. The infusion took about 7.5 hours with me closely monitoring the pump to change the syringes.</div>
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This was the first time I used the 6mm needles in my thighs, and at first I was excited because it seemed to be so much more comfortable than the 9mm needles. I stayed awake throughout the infusion and didn't put any serious pressure on any of the needles, but about halfway through my infusion one of the sites started stinging severely. I asked my boyfriend to look at it and he noticed that the <a href="http://amzn.to/2lj7EWG" target="_blank">Tegaderm </a>was lifting around the needle, and when I got to where I could sit down and look at it in good light I saw that the site was actually leaking. I tried putting a pressure bandage over the needle to stop the leaking, and it seemed to work at first, but then it started up again. I had to clamp that needle off and finish the infusion in 4 sites.</div>
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Today the sites still look white and swollen (which is unusual for my thighs), and I've come to the conclusion that I need to go back to the 9mm needles. I think that the extra stinging is due to the fact that the Gammagard wasn't getting into the fat layer but was going in between layers of my skin. With the 9mm needles I would have leaking after an infusion, but never had leaking during an infusion. I'm glad that Accredo let me try the 6mm needles without taking the 9mm needles off of my order.<br />
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I took my second Prednisone this morning and have had some irritability and gloomy thoughts today, but I seem to be breathing well and feeling relatively well. I still don't know whether I'm getting sick or not. I sincerely hope not.</div>
HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-11722734646241156622010-12-23T18:50:00.000-08:002013-10-08T00:24:29.139-07:00Eighth Gammagard S/D Infusion<br />
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I had my infusion today, and overall it went pretty smoothly. I tried new areas and shorter needles today, and 1 site leaked during the infusion. I also vomited again before starting the infusion and I'm starting to think that's due to a combination of migraine with mild nausea, PMS and a reaction to the first needle hurting and maybe a bit of anxiety just to make things fun. Both times that I vomited were about 5 minutes or less after having the first needle was put in and it hurting. I don't know why that would be a factor, I mean, I don't faint or throw up when I get my blood drawn or IVs, so why should this be different? I also don't vomit every time a needle hurts. It doesn't make sense that it's just anxiety, but perhaps a combination of all of the above just makes a bad mix. I've also started hydrating with 50% Gatorade and 50% smart water in case the Gatorade has been contributing to my nausea.</div>
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I had to put the needles in a place other than my thighs today because I have a rash all over them from last Friday's infusion. This time I chose the love-handle area and my lower back. I couldn't see to put the needles in so my mom had to do most of them. I took a nap and laid on some of the needles (they didn't hurt since they're the 6mm ones) and the one with the most pressure leaked onto my sheets. I have what looks like a water stain on my sheets and I hope it will wash out. I finally just clamped off that one site for most of the infusion since it wouldn't stop leaking. None of the other sites leaked. Although none of the needles were in my stomach area, my belly still bloated from the infusion. The needle sites aren't painful now, but I'll have to see how they are tomorrow. I hope the rash on my legs goes away soon because I really prefer my thighs....I wonder how the calves would be?</div>
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I'm doing pretty well. My pharmacist suggested that I take 20 mg of prednisone when I first eat tomorrow rather than tonight, so that might prevent the back-lash reaction that I seem to get the day after my infusion. I'm going to give that a shot...she also said I could try 10 tomorrow and 10 the next day...we'll see how tomorrow goes.</div>
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<span class="Apple-style-span" style="color: #6aa84f; font-size: large;">Update...</span><br />
<span class="Apple-style-span" style="color: #666666; font-size: x-small;">Thursday, 12/30/10</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: 12px;">I didn't have any bad reactions the next day, and I've come to the conclusion that the pharmacist was right about the Prednisone causing a backlash reaction. The Prednisone affects my mood and makes me irritable, but it's better than migraines, breathing trouble, and rashes. I felt pretty good during the week and was able to have a nice Christmas. I think we are finally on the right track! :D</span></span></div>
HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-49093895291288431602010-12-18T22:00:00.000-08:002017-02-18T22:45:31.114-08:00Bad Reaction...but to what?<br />
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I did my infusion yesterday and finished about 11:00 PM. Today I felt ok other than exhaustion and a headache...until about 2 hours ago (8:00) PM. Suddenly I started swelling all over my body and having breathing trouble. I'm afraid it's from the treatment, but hoping it was just a food reaction rather than to the treatment. I took 2 <a href="http://www.amazon.com/gp/product/B003N0FTNW/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B003N0FTNW&linkCode=as2&tag=cvtheldi-20" target="_blank">Benadryl </a>and my breathing has improved somewhat, but I'm still swollen enough that my fingers feel stiff, and still a bit short of breath. I know I probably should do the epi-pen and 911 thing, but I'm afraid that the epi-pen will trigger seizures. I keep monitoring my breathing with my peak flow meter and even with the feeling of shortness of breath, I'm blowing over 400 on it (which is good). My tongue isn't swollen either.<br />
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I didn't eat anything that unusual today, except some home-made oatmeal/coconut/chocolate cookies that my mom put some milk in. I'm allergic to milk, but have never had this kind of reaction to it before. That was the most recent thing that I ate before the reaction, and the reaction came on very suddenly. I also had some spaghetti with fresh basil on it from my mom's plant, and while that's not something I have all the time, it's still frequent enough that I didn't think twice about it. I had that about an hour before I noticed the reaction.<br />
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The only other time I've had a reaction like this to something was to shellfish, and it was similar except this time I don't feel like my tongue's swollen. I'm wondering whether there's shellfish in the cat food.<br />
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Will post more later...</div>
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<span style="color: #6aa84f; font-size: large;">False Alarm?</span></div>
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<span class="Apple-style-span" style="color: #666666; font-size: x-small;">Sunday, 11/19/10 2:00 PM</span></div>
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<span class="Apple-style-span" style="color: #999999; font-size: x-small;"></span><span class="Apple-style-span" style="font-size: 12px;">So...I ended up not going to the hospital, but took an additional 2 Benadryl and was finally able to sleep despite the fact that I was really scared. I feel a lot better this morning, and I realized that the Prednisone could have made me puffy instead of it having been an anaphylactic-type reaction. I know, I'm an idiot for not going to the hospital because they could have at least confirmed whether it was anaphylaxis or not, but I was afraid to go because I was scared I'd catch something. Silly huh?</span></div>
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I took my blood pressure when I was going through all of that and it was 140/89 which is very high for me, but it made me more comfortable to sleep because one of the danger signs of anaphylaxis is low blood pressure in addition to the other signs. It made me realize that maybe something else was going on and I calmed down. This morning I asked my mom whether I'd been puffy earlier in the day before I went to get her and she said my face was definitely puffy. That's another reason I think it was the prednisone. Also, I never felt like my throat or my tongue were swollen, and I think the prednisone explains that. </div>
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I feel like a fool for getting so scared and putting my mom through hours of worry, but it was scary and I've had the swelling thing before with my tongue and throat swollen from an allergic reaction. I should have remembered that prednisone makes my face look puffy too though and calmed down when I realized my tongue and throat weren't swollen.</div>
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I do have a rash where the Tagaderm patches were, and that's something new. I took picture to show the doctors if they want to see them. </div>
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So confusing...too many variables...</div>
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<span class="Apple-style-span" style="color: #6aa84f; font-size: large;">Update...</span></div>
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<span class="Apple-style-span" style="color: #666666; font-size: x-small;">Monday, 12/20/2010 10:00 AM</span></div>
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I tried to call my doctor but they are out of the office until January...I guess that's the drawback of a teaching hospital. When I couldn't reach anyone there I called Accredo and spoke to both the head nurse and the pharmacist. They were both of the opinion that it probably was the prednisone causing the swelling because I didn't have a swollen throat or tongue. The pharmacist suggested that I take 20 mg the day of my infusion and then try either taking 10 mg the next day and 10 the day after that, or 20 the day of and 20 the next day. She said she's noticed a pattern to me having breathing trouble about 24 hours after the infusion and believes it to be a backlash reaction from the prednisone suppressing everything. She said missing a few weeks of my infusion wouldn't kill me if I'd rather wait to talk to my doctor. I truly think that's what it was though. </div>
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HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-21372987096950448762010-12-18T18:17:00.000-08:002017-02-18T22:17:14.783-08:007th Gammagard Infusion...An Odd...One<br />
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So I had my 7th infusion today and something very odd happened. After the needles had been in for about an hour I noticed blood under the adhesive. It wasn't a lot, but enough to soak all the way out and stain my clothes after about 10 minutes. I called my nurse to find out what to do as I'd never encountered that before. I did check the sites before starting the infusion so I knew that it wasn't in a vein.</div>
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My nurse told me to clamp off the tube and apply pressure to the site (which freaked me out a bit since that seems that it would mean pushing the needle in even further). I applied pressure directly next to the needle and after about another 20 minutes or so I could tell that the blood was starting to coagulate and look darker, I'm not sure when the bleeding actually stopped though. After about 30 minutes I unclamped the tube again and let it run.</div>
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<a href="https://www.amazon.com/dp/B003BDUBRA/ref=as_li_ss_il?&adid=1BCDTAMD8XY5FVVKB2EB&ref-refURL=&th=1&linkCode=li2&tag=littlespotted-20&linkId=17fe934c12e6726a1579972af93e55e9" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;" target="_blank"><img border="0" src="//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=B003BDUBRA&Format=_SL160_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=littlespotted-20" /></a><img alt="" border="0" height="1" src="https://ir-na.amazon-adsystem.com/e/ir?t=littlespotted-20&l=li2&o=1&a=B003BDUBRA" style="border: none !important; margin: 0px !important;" width="1" />During the infusion I had more shortness of breath and tight-chested feeling than I did the previous time. I took my inhaler a lot, and ended up getting the jitters. This time I'd taken 20mg of Prednisone and 2 extra strength <a href="http://amzn.to/2lWLdcH" target="_blank">Tylenol </a>ahead of time, but forgot to take the 50mg of <a href="http://amzn.to/2lvAjdc" target="_blank">Benadryl </a>until the infusion had been going for at least 30 minutes. I forgot to take my inhaler for about an hour.<br />
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</span> <span style="text-align: justify;">This infusion only took 6.5 hours because I made a point of paying attention to the syringe-change time. I wish I'd noted the correct time in my log so I'd know exactly how long it took, but I was very tired today (I've had trouble sleeping since Monday night), and I just absentmindedly jotted down 4:00 PM, but it may have been as late as 4:15.</span><br />
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<a href="https://www.amazon.com/Benadryl-Allergy-Ultratabs-Tablets-Count/dp/B010VE3AGA/ref=as_li_ss_il?srs=7301146011&ie=UTF8&qid=1487483014&sr=8-2&keywords=Benadryl&linkCode=li2&tag=littlespotted-20&linkId=49d65c20e2b3a5189682c41b777eb167" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;" target="_blank"><img border="0" height="200" src="//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=B010VE3AGA&Format=_SL160_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=littlespotted-20" width="110" /></a><img alt="" border="0" height="1" src="https://ir-na.amazon-adsystem.com/e/ir?t=littlespotted-20&l=li2&o=1&a=B010VE3AGA" style="border: none !important; margin: 0px !important;" width="1" /><br />
I took another 2 Tylenol about 3.5 hours into the infusion, as I felt a headache trying to start. I took another 2 Benadryl at about 11:30 (after the infusion), and I'd taken the 2nd prednisone around 9:00. The prednisone is kind of touchy, as I need to take it with food, but I'm supposed to take it 1 hour before and one hour after. Instead I take it with lunch (or whatever meal I have as I'm getting things set up), then if dinner seems too close to the start time, I have a good-sized snack later. Tonight I had 2 snacks: a bowl of uncooked oatmeal with chocolate milk (yummy...you should try it), and some leftover spaghetti about 3 hours later. It's abnormal for me to get that hungry that soon after eating something substantial, so I think the prednisone is increasing my appetite. </div>
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The infusion ended at about 10:30 PM, and it's now nearly 3:30 AM. I'm tired and I hope that I'll be able to sleep through the night. That's doubtful though since I drank over 100 Oz of fluids today and will probably wake up for the bathroom a lot.</div>
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HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-50382138591485053912010-12-17T18:14:00.000-08:002017-02-18T22:45:49.145-08:00Sixth Gammagard Infusion<span class="Apple-style-span" style="font-family: "arial" , "helvetica" , sans-serif; font-size: 12px;">I've had kind of a rough week, so I'm behind on writing about this. It's actually exactly a week later and I'm doing my 7th infusion right now, but I'll post about this one separately.</span><br />
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My 6th infusion went very smoothly. The whole thing took 7 hours, but I made it through the infusion with only 50mg of <a href="http://www.amazon.com/gp/product/B003N0FTNW/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B003N0FTNW&linkCode=as2&tag=cvtheldi-20" target="_blank">Benadryl </a>as well as the 20 mg Prednisone, inhaler, and Tylenol. As usual I had insomnia after the infusion. I'm still not sure whether the insomnia is caused by the infusion itself or the steroids or both. I know steroids can cause it, but I think the infusion itself does too. I took 20 more mg of Prednisone towards the end of the infusion too.<br />
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I noticed a slight headache (if I remember correctly) towards the end of the infusion, so I took some extra Tylenol later. The next day (Saturday) I woke up feeling tired and weak, but not to the point that I've come to expect. It was much milder overall, and I was actually able to have a weekend where I felt almost like a normal person!</div>
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HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0tag:blogger.com,1999:blog-9058745245832142720.post-3824766748463491042010-12-08T00:46:00.001-08:002013-10-14T08:03:13.007-07:00Appointment with Immunologist<br />
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Last week I saw Dr. Lewis at Stanford again and he gave me the results of all the tests that they ran last time. IMy IgA was undetectable, IgM was up, and IgG is now over 1500! They said they don't want it to go higher. I responded well to Diptheria, Tetanus, Pertussis, and had normal results for Tuberculosis.</div>
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Dr Nelson, the Fellow who works with me most, said that they might run the IgA antibody test on me, at least, I think that's what she said. At first I thought she meant they'd run a test on me to see if I'm allergic to IgG, which she said I could be since I'm having so many reactions to my treatments, so I'm really not certain what test they mean to run.</div>
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Dr Lewis recommended various specialists for me who at least know him, and hopefully are familiar with CVID too.</div>
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We discussed ways to deal with my treatments, and for now we're going to continue as is with taking my asthma medicine regularly, taking my rescue inhaler 20 minutes before treatment and again 4 hours later, taking 2 prednisone, 2 Tylenol, and 2 Benadryl. I get exhausted just writing about it. ;) He also recommended that I start pushing hydration, even harder than I normally would for an infusion, starting the day before and continuing for 2 days afterward.</div>
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If those suggestions don't work, then they will add in using my nebulizer before/during treatment, and that would mean I'd also have to take Clonazepam to stave off seizures. What fun! I'm hoping and praying that it won't come to that. If that doesn't work, then they'll move on to about 20ml treatments / day probably for 5 days of the week. If I still have problems with that, then they will take me off of Ig therapy and put me on prophylactic antibiotics.</div>
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So, now that I know all the possibilities, I'm more coming to terms with my fears over the worst case scenario. Dr Lewis thinks that I should adapt to the current treatment and that the realistic worst it will be for me is to add in the nebulizer. That's much more acceptable to me than trying to wing it with antibiotics.</div>
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Here are some of the questions I asked while I was there:</div>
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Question: Can I eat sushi safely?</div>
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Answer: Yes, although eating exclusively saltwater sushi is safest, and salmon is the most dangerous.</div>
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Question: What wording should I use on my medic-alert bracelet?</div>
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Answer: IgA deficient with CVID</div>
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Question: What is IgM?</div>
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Answer: IgM is the body's first line of defense against infection, but IgG covers for it.</div>
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Question: IgA is for protecting our eyes, mouths, and mucus membranes from bacteria/viruses, do I need to be extra cautious of infection in those places due to not having IgA?</div>
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Answer: IgG will protect those places also</div>
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Dr Lewis told me that many of his CVID patients get daily migraines, and also migraines that precipitate IVIG. He recommended a drug called Diamox, but when I mentioned it to my neurologist the neurologist said that Diamox is for brain swelling, and gave me Verapamil instead. Apparently Verapamil is good for neurologic migraines.</div>HealthPleasehttp://www.blogger.com/profile/10923240339626976693noreply@blogger.com0