Tag: antibiotics

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CVID…. what the heck is that?

cvid-ribbonTeam KLB,

Let me back right up to where it all began…

Before I was diagnosed with Breast Cancer I had noticed that almost every time I ate, my nose would run. It didn’t matter what foods I ate, whether I was eating on the go, or whether it was spicy or not. Most meals made my nose run. I had even commented on this to Jim. I assumed this was some type of additional food intolerance.

During my time going to Bauman College (my in person classes, before I switched to distance learning), we learned about histamine and that got me thinking that this must be related to some issue with histamine. That stuck with me, but then I was diagnosed with breast cancer, so many other things got put on the back burner.

Fast forward to early 2016. At that time I had been completely done with all cancer treatments for about a year and had my last surgery in Oct. 2015. I kept waiting to get my energy back, to not have to drag myself out of bed every morning, to feel like myself. I know my body well enough to know that there was something else going on. At that time, I just didn’t know what or who to ask. In mid spring of 2016, while on instagram, I found a post by a woman with the handle @thelowhistaminechef (she has since changed her handle and can be found at Healing Histamine.) Coupling my low energy with my runny rose, I thought, THIS must be what I need to learn more about. THIS is what I have. And to top it off, she was going to be a Paleo F(x) in May. I had to go see her talk.

At Paleo F(x), she did a food demo. After the food demo, she answered some questions about her experience. (A great story, by the way, I highly recommend checking out her page). After going into anaphylactic shock while reporting for CNN in war zones, she consulted a naturopathic doctor. This eventually lead her to a diagnosis of Mast Cell Activation Syndrome (MCAS) and to a low histamine diet. She encouraged her listeners to reach out to an immunologist or a naturopathic doctor. When I came back home after the conference, I looked up MCAS and contacted my doctor for a referral to an immunologist. There are many symptoms of MCAS, but the ones that I noted were: gastrointestinal (intestinal discomfort), brain fog, headaches, migraines, general fatigue, being cold all the time, food and chemical sensitivities (including perfumes), and of course my respiratory symptoms.

I met with an immunologist just a couple of days after arriving home from Paleo F(x). Before going to the doctor appointment, Jim jokingly said, “they’re going to put you on the no food diet” since this was something I dealt with at nearly every meal. It was the most thorough doctor appointment that I have ever had with a doctor. I told her about what I thought I had and about my symptoms that aligned with MCAS. Then she went on to ask me about everything I had ever done. I told her about my my cancer diagnosis and treatment, my recurrent sinus infections, my digestive issues, chronic yeast infections, and a systemic yeast infection. I told her a story to illustrate my experiences. In Feb. of 2016, I got a common cold. That cold lasted for four weeks! And then I was well only for ONE WEEK before I started getting sick again. This is a common occurrence in my life. She then did a physical exam and told me that she didn’t believe I had MCAS because people that have it usually have skin lesions and I don’t have any of those. She did, however, suspect that there was probably something amiss with my IgA. She noted that the sinus symptoms and the bloating and digestive discomfort was like a red flag for low IgA. She asked me to have 11 vials of blood taken for testing and asked if I would get the pneumonia vaccine to help determine what I had. I decided to put off the vaccine until I knew I needed it.

Throughout the appointment I was able to convey to the doctor that I wasn’t looking for a prescription or a quick fix. I wanted to understand what is wrong with me and to do everything in my power to heal it on my own with holistic, natural, and diet/lifestyle based interventions. I know my body and I know when things are “common, but not normal” (refer to this post for more…) and when there is truly something amiss. She was awesome. She was so impressed that I knew my body so well and that I listened to it. She also understood that as a holistic nutrition consultant, I practiced what I preached.

After two separate blood draws (I pass out folks!) I went back to learn about my results. Here they are:

IgA  <6 mg/dL                   Normal range: 87-474 mg/dL

IgG 343 mg/dL                 Normal range: 681-1648 mg/dL

IgM 26 mg/dL                   Normal range: 48 – 312 mg/dL

IgE <2 kU/L                        Normal range: <114 kU/L

Please note those normal ranges come directly from the test results. As you can see, they are all very low, but my IgA and IgE were the lowest. Based on these test results and the fact that most of the other test results came back “normal”, she believes that I have Common Variable Immune Deficiency (CVID). However, she could not diagnose me without first giving me the pneumonia vaccine. To be able to diagnose, she had to prove that my body did not respond to the polysaccharides in the vaccine. So reluctantly I got the vaccine. Six weeks later I had my blood taken again to see if I had any presence of antibodies. When looking at the test results, side by side, you can see there are virtually no differences. To my body, it’s like I wasn’t even vaccinated, I have no antibodies built up to the pneumonia virus. So on August 4th, I was officially diagnosed with CVID.

Here’s an FAQ:

Q: What are the treatment options?

A: There are three main treatment options:

  1. Prophylactic antibiotics. Basically a prevention in case I get sick. Just in case. This option is not for me. I’m anti prophylactic antibiotics. See this post for more on why….
  2. Immunoglobulin infusions. The immunoglobulins come from healthy blood donations. They are then processed so that it’s just the immunoglobulins, not all of the blood. It is actually a clear liquid.
    1. Every four weeks, for about 4-5 hours at the infusion center at the medical center. Indefinitely.
    2. Weekly, for about two hours at home. These infusions are subcutaneous (under the skin in the abdomen region.) I would give the infusion to myself. Also indefinite.

The advantage of doing weekly infusions are: you don’t have to sit at the infusion center for 5 effing hours every month! and that your IG levels stay more stable rather than spikes and dips with monthly infusions. The disadvantage is that you have to do this each week and you have to do it yourself. Ick.

Q: How did you get this? Is it related to cancer?

A: I was born with it. The doc believes I was born without IgA and IgE, and that the rest of my immunoglobulins are low because they have been working on overdrive to compensate. Most people do not get diagnosed until they are in their 30’s or 40’s. It does not have anything to do with my having had cancer. However, a compromised immune system is more at risk for cancer. Think of it this way: the immune system is like an army. My immune system doesn’t have very many soldiers (very low IgA and IgE) and the soldiers it does have are busy fighting small battles (low IgM and IgG). So when a big battle (cancer) comes along, it can only do so much to fight the cancer.

Q: What are the infusions like?

A: They are mostly long, boring, and uneventful. Except for the first one.

I remember my doctor mentioning something to me about the fact that because I don’t make IgA, I could have antibodies built up to it. This means that I could go into anaphylactic shock. That’s where I remember the conversation ending, which left me concerned. So before I would let them give me anything, I asked how they test, prevent, or treat for this. The standard protocol is to treat with premeds (antihistamine, hydrocortisone, and Tylenol) and then to ramp up slowly. For the first half hour, the dose is very low, and every half hour they increase the dose. They also have additional meds (Benadryl) if needed. Once I felt that I understood their plan, I consented. Initially, I noticed nothing. But after the first half an hour, when they increase the dose, I noticed feeling a little flushed. Then I noticed that near the IV site, my arm felt kind of tingly. A little bit itchy, but mostly like someone had put icy hot on my arm. I told the nurses and they decided that they should flush my IV with saline. Then they gave me Benadryl and more hydrocortisone and restarted IV. My arm was still tingly and so they slowed infusion down. This did not seem to help. The doctors and nurses came to check on me and it was decided that since it was only near the IV site, and not all over my body, it was probably not an allergic reaction. We continued the infusion. Afterwards, I had a bit of a headache and felt tired from the Benadryl. The nurse emailed me the next day to say that she had talked with my doctor and that the tingly feeling was normal. The second infusion went much smoother, but I still had the tingly sensation.

Q: What differences will you notice?

A: The doctor said that is likely that I will notice feeling less tired. She didn’t seem to think But many of my other symptoms would go away. I should also get sick less often and be able to have and more robust immune system. So far I haven’t noticed much. My levels were so low that it could take a while to rebuild them to normal.

Q: You’re doing all of this for a runny nose?

A: No. It’s much more than that. It’s giving myself an immune system that actually functions. It’s preventing cancer reoccurrences. It’s regaining energy. It’s preventing a lot of hospital visits due to “non-serious” illnesses. The runny nose was my catalyst for seeking out medical help for a much bigger problem.

Q: What are the risks associated with CVID?

A: Getting sick, a lot. Many people with CVID end up getting very sick from things like pneumonia. Or are just chronically sick.

Here is a link to learn more about CVID.

Thanks for reading this, it was a lengthy one!

XOXO,

Katie

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96% Done

Hi there #teamklb,

I have completed 24 of 25 days of radiation so far. I am 96% percent done and will finish tomorrow 3/16. I’m super excited to be finished with this final cancer killing step. First: poison, second: slash, and last: burn (thanks Lilani for that apt description). For the past week and a half, my skin has been IRRITATED. The physical radiation burn has my skin red and hot (no surprise there) and my underarm is really angry. No shaving for a little while, so I’ll be a bit stinky :-(.

My left breast (no cancer, no radiation in that breast) had a small red dot on it two weeks ago. I’m hyper vigilant now, so when it was still there the next morning, I called my plastic surgeon. They had me come in that day just to check. He said to me, “was it your bra?” I almost laughed. First, I don’t need to wear a bra, so why would I? For the first time in about 20 years I haven’t needed a bra, so I’m NOT wearing a bra. Second, I’m going through radiation and therefore I’m avoiding all things that would irritate my skin any further. Third, I would have thought of that, I’m not your average idiot patient. The  plastic surgeon said it would be extremely unlikely for cancer to regrow in the skin of the non-cancer breast. He said to watch it and he would check on it during my regularly scheduled post radiation appointment at the end of the month. He asked for my surgeon to be available at that time as well in case they need to biopsy it (not an exciting prospect, as the initial biopsy was one of the more painful part of this whole cancer bullshit). He also suggested that I have my radiation oncologist look at it during our weekly appointment. He looked at it this week and thought it was nothing to be concerned about (it was almost gone by the time I saw him). So it appears it was just a skin lesion. Phew.

There was a woman in my Living Strong Living Well class that just recently lost her battle to lymphoma. On our first session we simply went around the room and introduced ourselves. I thought, I’m good, I’m not going to cry when say my name, my kind of cancer, and what I value about myself. I was good. Until Paulina spoke. She was fairly young, probably near 40. She said that she had lymphoma and was looking for a bone marrow transplant, but wasn’t having any luck finding someone. That’s when I remembered that I was lucky to have had Breast Cancer (sounds weird, I know) and that’s when it got me. She continued talking and mentioned that she used to be Zumba instructor. That really got me. When I was diagnosed, most people mentioned something about the fact that they couldn’t believe I had gotten Cancer because I was so healthy. Clearly Paulina was a really healthy and active person too. Cancer doesn’t discriminate. Then it was my turn and of course, the composure that I had, was gone. I quickly took my turn and through a choked up voice said that I valued my positive attitude (…irony…). We didn’t see Paulina too much through the weeks of the living strong living well classes. But she was undergoing treatment still, so people have missed classes here and there. I didn’t think too much of it. Then on Monday, our trainers informed us of her passing, and said it was a few weeks prior. That was the last time that I remember seeing her, was a few weeks ago. It hit me harder than expected, since I really didn’t know her. That night I made a donation in her name to the leukemia and lymphoma society. It got me thinking, when she signed up for this class, I’m sure she didn’t know that she would be dying part way through the class. I’m sure that, like me, she thought that this would be a good way to regain the strength that she lost during cancer treatment. I can’t imagine what those last weeks were like for her and her family. And although I don’t know her family, I’m sending healing thoughts and love their way.

This has also got me thinking about those first dark days after my diagnosis. Before I knew exactly what I was dealing with (stage, whether it had spread, how long I had to live, etc.) I had decided in my mind what I would do if the news wasn’t so great (lucky for me I got significantly better news). Many of you know of my goal to see all fifty states before I turn fifty. Well, I decided that if I was going to die soon, I was going to sell off all my stocks and cash in my investments, and Jim and I were going to road trip across the country so that I could see all fifty states before I died. Obviously we didn’t need take that plan of action. I’m very thankful for that.

I’ve been back to work for the past three weeks now, still working 50% (from 7:45-11:30 every day). It has been, well, a lot of things. 1) Great. I’ve enjoyed working again and I like my class a lot. It was supposed to be a year a challenging behaviors, but some of those kids have moved. Not going to lie: super stoked about that. I like staying busy and teaching and so that part has been really great. 2) Exhausting. I go straight from work to radiation and then come home and nearly always take a nap or rest. In hindsight, I probably should have stayed out through radiation (Jim is enjoying telling me that he told me so). My Breast Cancer friend, Liz, says that’s it’s kind of strange because even though it doesn’t seem like you’re doing much to your body when you are going through radiation, you really are. Liz is very wise. 3) Very strange. It’s kind of like I’ve been in a time warp for the past 8 1/2 months. I know the world carried on without me, but no place is it more apparent than at work. In some cases, like the garden club, it just continued right along (yay!). In other cases, like volleyball, it wasn’t going to happen if I didn’t come back right at this time. No blame or judgement, it’s just an observation and a twilight zone kind of feeling. All these things that happened while I wasn’t around and normally I am around for all of it, it just feels strange. 4) Challenging. While my long term sub did the best he could, and I appreciate him very much, he had to start the year off for me without knowing how I normally do things. In a more perfect world, a long term sub takes over the year for you when you already have your procedures and routines in place. Then the kids can help out by letting him or her know how you do things and the structures are already in place. So having to reteach all of this and sort of undo things is frustrating because I would like to be teaching. 5) Appreciated. Everyone has been so kind and caring in welcoming me back. My Braly family really is the best.

I’m still going to my Nutrition school and in the past few classes, cancer has been covered. This has me thinking about the causes of my cancer even more. Here are my main thoughts: Obviously the BRCA1 mutation puts me at a huge risk for Breast Cancer. The gene is on my fathers side of the family (he was one of 11 and there are tons of cousins, the exact number I’m not sure of). I’m the youngest grandchild on that side, so for me to be the first person to find that gene, makes me think that other lifestyle factors caused the cancer to happen so early in my life.

From 8/2013-12/2013 I was taking Hormone Replacement Therapy. (Backstory: my migraines happen much more frequently during my menstrual cycle, like everyday, so they are clearly tied to the fluctuations in my hormones, so my neurologist had me wearing a hormone patch during the week of my period for that time frame). The estrogen in the patch, estradiol, is linked to Breast cancer (straight from my lectures in school). Even though my cancer was hormone negative, I believe there is still a link.

I was also on the birth control pill for the better part of a decade. One in eight women get breast cancer in our society and how many of them have been on birth control for lengthy periods of time? If I were to have a daughter, I would not want her to take birth control ever. Wrap it up. I know, it feels different, but so does cancer. My point being that prescriptions have side effects and the FDA isn’t looking out for us. Big pharma creates a drug and then designs a study to prove its effectiveness and safety to submit to the FDA. Does that seem backwards to anyone else? I sure hope so.

Moving along. Antibiotics. How many courses of antibiotics have you been on in your lifetime? If you’re like me, it’s more than you can count. If you’re like my friend Sarah, it is one time, in her wholelife. (That really got me questioning the amount of antibiotics that I’ve been on.) I’ve been on them at least once or twice per year since I was about 18. Also, when I was 17ish I went to my dermatologist for acne. She put me on amoxicillin. I was on it for well over a year, but I think it was more than two years. I literally wiped out the colony of bacteria in my digestive system. That colony of bacteria is your first line of defense for everything. I’m not saying antibiotics caused my cancer, but I do think they contributed to my body’s inability to fight the cancer. Obviously, these are my opinions and I’m not a doctor. Duh. But my point is that I think western medicine and doctors played a large role in my cancer.

If I could go back and change my actions to avoid getting cancer, I would do it in a heartbeat. I can’t do that, but maybe I can influence you to think twice before doing some of these things too. [steps off soapbox]

Since my birthday is on Wednesday and I finish cancer treatment on Monday, I will be in a very celebratory mood this week. Just nine months ago, this is a birthday that I wasn’t sure I would get to celebrate. I’m pretty stoked that I get a thirty-second year of life. Feel free to wear pink tomorrow on the last day of radiation.

XOXOXO,

Katie