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Health Update: Let's Talk Thyroid Hormones and Testing

10/11/2019

7 Comments

 
This is the first in a series of Health Updates I will be posting. It's been so long since I've done one of these blog posts, and I have a lot to discuss! To be honest a lot has gone on but it was difficult to make sense of because as you'll see many different issues tied into one another. When I was in the midst of it all it felt like I was working on a giant tangled ball of yarn. I kept trying to find the first loose string to pull so I could begin to unravel the problems and fix them one by one. I pulled many of the wrong strings with trial and error before I started to find my way out.

​One big long standing issue for me has been my thyroid. Many years ago I had a goiter on my thyroid and was diagnosed with cycling Hashimoto's and Graves Disease. I saw a specialist at the University of Louisville who understood complex cases and I trusted that he would know what to do. It really wasn't until a few years later that I realized this was not the case. I had my thyroid radiated (partially killed off), and was put on Synthroid (T4) but I never felt well on it. I kept telling him that I didn't feel right and he kept telling me I was fine because my lab work said I was fine. I trusted that, and told myself I guess I was wrong. This went on for quite some time until I realized the only lab marker he was drawing on me was the TSH level. He judged everything on that one number, and when it was "in range" he considered that case closed. I was furious when I realized how much had likely been missed, and not long after I fired him as my endocrinologist. As the years went on and I had more mysterious health issues (which I now know were Lyme related), my thyroid problems kind of went on the back burner. I got my levels as close to stable as possible, and even though they weren't perfect I felt like it was 'good enough' considering I had bigger fish to fry.

Fast forward in time, and within this last year my thyroid had come to the forefront yet again. My labs were very bizarre, with markers showing I was both Hypothyroid and Hyperthryoid at the exact same time. For example I had high Free T3 (showing hyperthyroid), yet also high TSH (showing hypothyroid). In fact my Free T3 was consistently elevated no matter what I did. There were other strange anomalies too with the Reverse T3 and T3 uptake. Nothing made sense, and I also felt pretty awful. I had symptoms of hypothyroid as well as symptoms of hyperthyroid, and anytime I tried to go up on my Synthroid I thought my heart might explode. No one could make any sense of it, and I was left in a limbo. Here is a sampling of some of my confusing blood work that I was dealing with.
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When you have Hashimoto's or other thyroid conditions there are certain nutrients that are necessary for the thyroid to function properly. These vitamins and minerals play a direct role in converting the T4 to useable T3 and helping the T3 to properly find its way to receptor sites. There are many different thyroid specific nutrients, but two big ones are Ferritin and Zinc. Zinc is connected to thyroid function in more than one way: if low, TSH will not be made and this will result in low levels of thyroid hormones T4 and T3. Zinc is also an essential part of an enzyme deiodinase, which converts T4 into a functional T3. If zinc is low or missing from the body, T3 cannot be made. Also, low zinc levels correlate with the increased levels of autoimmunity, as seen by high amounts of anti-thyroid antibodies (TPO and Tg) in thyroid patients - Boost thyroid. My zinc levels were very low; serum Zinc was 0.49 (range 0.66-1.0), and stayed low despite supplementing it heavily. Nothing seemed to make a dent, and I had chronically low Zinc for years on end, so I knew that was playing a big role. Moving on to Ferritin: low ferritin can cause the T3 to not get into the cells, and raise Reverse T3, can decrease deiodinase activity (slow down conversion of T4 to T3, can affect the first two or three steps of thyroid hormone synthesis by reducing the activity of the thyroid peroxidase enzyme, and can affect the body's ability to break down thyroid hormones for use. My Ferritin level was also very low; 4.9 (range 11-300). I also supplemented Iron orally and transdermally with little to no luck in raising my levels.

This is when I hit a wall. I had spent months trying to fix these 
deficiencies in hopes that it would resolve the chaos of my thyroid to no avail. Around this time I also started to become sort of intolerant to my Synthroid. When I would take my usual dose I felt awful, so I had to cut back on it. Cutting it back made me more hypothyroid, but it felt like a better alternative than the awful hyperthyroid symptoms I got when taking more Synthroid. Everything was a mess. So, when I got the opportunity to take my case to a world-renowned Endocrinologist I was elated. I felt like someone would finally take my complex case and help make sense of it. Well... that's not quite what happened. His suggestion? Remove my thyroid all together. Yup... ill spare you my thoughts on his suggestion.

So here I was, feeling pretty hopeless and lost. I got to searching far and wide for another Endocrinologist, and I knew I needed an Integrative physician who would take a look at me as whole and help me understand what to do. Finally I found one, and she helped me make sense of all of my chaotic lab work. She said that I did not have a conversion issue, meaning that the T4 is properly converting to T3, however the T3 is unable to get into my cells which is why I have such high Free T3 levels. If you recall, low Ferritin levels can create this very problem, however I couldn't raise those levels, so we tried another approach. Dr. E wanted to switch me off of Synthroid and so first I tried a desiccated thyroid, but I had an allergic reaction to that. Next we tried a pure compounded T4 and that did not agree with my body what so ever (heart palpitations, racing heart, sweats). Then we decided to go back to Synthroid and try introducing pure T3 little by little. It took a few weeks to find the right formulation of T3, but once we found it I started taking a low dose twice a day. I know it seems counter intuitive that if I have high Free T3 in circulation already, why would I want more T3 right? I asked this same question and Dr. E said that similar patients responded well to pure T3 in this form better than the T3 that had to be converted from Synthroid. So, I gave it a shot. At first it went okay, but was never able to raise my dose up to anything that would be useful, because every time I tried I would have more strange symptoms and heart trouble. I would later learn that patients with low Ferritin do not tolerate T3 only medications, and that seemed to be my problem. After a solid 5 months working with Dr. E and trying many variations of things (many I didn't even list here), we were no closer to a solution. In the mean time I was feeling worse and worse, with a TSH level so high it wasn't even able to be measured by the in house lab.

​Around this time you might be wondering why I have such stubbornly low Ferritin and Zinc. I was wondering the same thing. Where was all my Ferritin and Zinc going? How is my body using it up so quickly that I was always depleted? I had many other nutritional deficiencies with this same problem, and I didn't seem to have an answer for a long time. That is, until I learned that birth control chronically robs the body of both Ferritin and Zinc. And well, I had been on birth control for the last 11 years. I suddenly started learning about all the awful things birth control does to the body, including robbing it of B-vitamins and clogging up receptor sites on cells so that the needed T3 can't attach to them. When we sat down and mapped out all the areas that my body was struggling, birth control was the culprit in pretty much every single place. I was put on the patch (Zulane), which is a much higher dose birth control, in 2007. At the time I was given it because my periods were atrocious. I was missing work and school while in college, and I couldn't function for a week every month. I had a lot of other health problems going on too, and being put on birth control was an easy fix. It took one trouble off the table so that at least I didn't have to worry about chaotic periods. After that I just stayed on it because later on I was too sick to stop and risk going back to those horrific periods. I liked that my hormones were consistently balanced, and I didn't think too much about it.

I will have an entire separate post talking about going off of Birth control after 11 years, how that went, what it did to my body, etc. But for now, I'll just tell you that this year I finally took the plunge and stopped cold turkey. I was dreading it, because if you read about people stopping birth control after long periods of time the stories you'll find are not very uplifting. It is a rough road while the body adjusts, and its rough even for people who are otherwise totally healthy. Knowing that I had so many other things going on with my body and that it could be a complete nightmare totally freaked me out. But it freaked me out more to stay on it after I knew all the chaos it was causing in my body.

Since stopping the birth control a lot has changed, and I'll go over all my test results in detail below. Physically the edema and puffiness I've had around my face for years is slowly disappearing, my skin is less chronically dry, and I can feel the deep painful fatigue lifting a bit. I'm sure as time goes on I will notice other details that were all linked to this hormonal mess improve as well.

I share my story so in depth because what happened to me is not uncommon in the world of chronic illness. When you have a chronic illness of any kind it puts a huge strain on the body. The stress can often wear down the adrenal glands and many people don't even realize that their thyroid is taking a beating as well. Low thyroid levels can cause a laundry list of symptoms and make it much tougher for the body to recover or bounce back from day to day stress. And that's not to mention that Hashimoto's cases are on the rise as well. It is so important to check-in on your thyroid health, because truthfully a lot of Doctor's don't think to do so. I can personally attest to this, as my thyroid health was often pushed to the side and deemed as 'not super important' when in reality it was incredibly important. You have no idea just how much work the thyroid does until you realize that every single part of the body requires thyroid hormones to function. 

Thyroid Testing... What's Changed?

One of the most frustrating things about thyroid problems is that it requires a ton of lab work and a ton of blood draws. When I was first diagnosed with Hashimoto's and we were trying to find the right dose of Synthroid I had to get my blood drawn every other week. Then it changed to monthly, then bi-monthly. But I have never gone longer than that in between testing. This last year with all the hoopla going on I had to get even more frequent testing. It's really important to see the changes happening with thyroid levels and to monitor it over time. Having it charted is also very useful, and can help provide a clearer picture. Furthermore, if you are changing things up (new meds, new dose, new supplements etc), its even more crucial to keep an eye on what that is doing to the thyroid markers. Even though its necessary my veins do not love it. 

I recently learned about a company called Paloma Health who specializes in all things thyroid, and they offer at home thryoid testing via a finger prick. I was obviously very intrigued right off the bat, because the thought of not having to go through all the work of getting blood drawn was music to my ears. Furthermore I thought it would be useful for others who read my blog that might be in the same boat. So I decided to test it out for myself and document it all in case anyone else is interested. The kit tests TSH, Free T4, Free T4, and TPO antibodies (to check for Hashimoto's). They also offer a Doctor consultation via video for $9 more, so if you want to have a board-certified Doctor on board to review your results, create a custom treatment plan, ask questions to, and prescribe you medication they can do all of that! Thats what, in my opinion, really sets them apart. It's all very impressive, and at a $90 price point it's also incredibly affordable. I easily pay that much (even with insurance), each time I get my blood drawn at the lab. Furthermore, you can also still turn this into your insurance for reimbursement, and it is HSA/FSA eligible. All of the labs who handle the testing for Paloma are CLIA-certified and accredited or enrolled with the College of American Pathologists. Their results have been thoroughly tested to have >95-99% correlation, so this is a company you can trust for accuracy. Those were all really important details to me, so I also wanted to make sure and highlight it. You can get a kit in 46 states (NY, NJ, Maryland, & Rhode Island aren't 
included due to state laws). 

I asked Paloma for a coupon code to share with you all and they gave me one for 50% off - ladyoflyme4paloma (case sensitive). I don't get anything if you use that code, meaning I don't make any money, it's not an affiliate code, I don't get money off my own kits etc. It's purely a 50% off code given generously by Paloma Health for you or anyone you know if you decide to try it out. 

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The kit arrived on a Thursday and I did my test that same day. I opened up the box, and everything I needed was inside. It came with two finger lancets, gauze, bandaids, alcohol wipes, instructions, and the test pad. The process was incredibly simple and took me a total of 5 minutes. I pricked my finger and collected blood inside the 5 circles on the white pad. After that I popped it in the pre-paid envelope and sent it off the next day. I thought back to all the times I sat in a phlebotomy room getting stuck 5-6 times while they tried to find a vein, all to test these exact same markers. And boy oh boy did I wish Paloma Health existed back then because wow. The ease of it honestly already had me sold. My results were back exactly one week from the time I sent it off, and I sent it off on a Friday. It probably would have been even quicker if I didn't ship it on a weekend, but that is still an incredibly fast turn around time. My results are below.
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As you can see my TSH, Free T3, Free T4 have all normalized since being off of my birth control for quite a few months, which is consistent with my past lab work. The only thing that hasn't improved is my TPO, which is pretty elevated. My autoimmune conditions have been on the fritz lately, and that includes the Hashimoto's. I love that their dashboard explains your results, what they mean, and how it affects body etc. That is incredibly helpful, since most standard lab results only give you a number and call it a day. Since Paloma has board-certified physicians who order and review each test I received a phone call the next day to discuss my elevated TPO. This was a really nice unexpected touch, and it was a much more personal experience than I've ever had from thyroid testing before. I could tell that they really cared and wanted to offer help or guidance. They are more than just a basic at home testing company, they really are an end-to-end online medical practice with specialized thyroid doctors and nutritionists on board to assist every step of the way. They even have a nutritionist who can help you manage your thyroid health via diet and lifestyle changes. I wish they existed back when I was diagnosed and had some pretty awful experiences with Endocrinologists, but I'm glad I found them now! 

​I actually had some lab work done yesterday (checking other things), and I requested that my thyroid markers be checked as well for the purpose of this post. I wanted to show you all how they match up for anyone who might be curious. 
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That's all for Part 1 of this Health Update, I will have the next parts in the coming weeks. I can safely say that for the first time I feel like I'm headed in the right direction with my thyroid, and it's been such a huge relief. My next steps will be working on lowering that TPO (Thyroperoxidase) number, because it's just recently became an issue for me after years of it staying in the normal range. I'll keep this blog posted on how things change with that as well!

If you want to read Part 2 of my update on hormones, continue reading here

xoxo,
​Christina
7 Comments

Let's Talk About Autoimmune Disorders: The Innate vs Adaptive Immune System + How Lyme Disease Affects It All

1/2/2018

2 Comments

 
2017 was an interesting saga in this journey we call life. I'd say if I had to characterize it, it would be the year when I realized just how discombobulated my immune system truly was. Lyme disease has a reputation for messing with the immune system and subsequently creating autoimmune conditions in people. An autoimmune condition is characterized by the immune system inappropriately attacking healthy organs/tissues in the body which it misidentifies as an invader. A similar activity can also occur with foods and environmental allergens. An interesting tidbit about autoimmune conditions is that they tend to travel in packs. If a person has 1 autoimmune condition, it drastically raises the likelihood that they will develop others. The reason being that the misfiring immune system which might first attack the thyroid glands will then start to wreak havoc on another organ or its next target.

For those of you following this blog you know I spent many long months trying to understand what was happening to my body when I developed new unrelenting severe stomach pain. After ~
5 months of tests I had my answer: Crohn's disease. The cause of Crohn's is not well understood, but the treatments are essentially all either: 1. Steroids (to suppress the immune system), 2. Biologics (which also inhibit the immune system), and 3. Other varieties of drugs which make the immune system non-existent. The damage and pain of Crohn's comes from high levels of inflammation due to immune system over reacting and attacking tissue in the mucus membranes. The trouble is, I can't take the commonly prescribed immune-suppressive medications because I also have Lyme disease. If I overly suppress my immune system I will allow the infections to flourish, and it would be a hot mess.

Without getting too much into it, the immune system has two tiers: the innate system & the adaptive system. With autoimmune conditions one part is over reacting & at the same time the other part can still be under reacting. So a person with let's say Psoriatic Arthritis can have an active autoimmune condition damaging their joints, but they can also easily catch every cold and virus going around. It's two pronged, and that's why this is so difficult. The common autoimmune medications suppress the entire immune system, opening the door to severe & sometimes fatal infections. Even the "healthiest" person who takes a biologic like Humira can get the flu and wind up in intensive care. It's not great. And since I have Lyme disease it would be a disaster if I suppressed my entire immune system. Because truthfully, I need a stronger immune system as far as Lyme goes & a less aggressive immune system as far as Crohn's goes. I know I know, how absurd!

After learning I had Crohn's we did further testing which confirmed that my immune system was pretty much off the rails in terms of body wide autoimmune cascades, and was now attacking almost all the food I put into my body. I had so many food intolerances & allergies that I hardly had but 5 safe foods I ate without excruciating pain. In between living on a liquid diet & curling up in a ball
24/7 from unrelenting pain, I felt pretty confused and very stressed out. We knew I had to reel in my immune system, but it had to be done delicately and in a way which balanced my immune system vs suppressed it. I was given a few options, did a lot of research & then made a leap of faith.

Around July I began immunotherapy, and boy has it been a rollercoaster ride. I have learned that once you poke the beast (the beast being the immune system), the reactions can and will be sudden & unexpected. I started out on too high of a dose & that initially set me back about 8 weeks, and my next try was again too high which was a second set back. I am slowly finding my footing with it now, and getting closer to the right dose. I will need about 6-12 months of consistent treatment (at the right level) to be able to feel the full effects. I don't want to talk too much about it yet, because it's still very new and too early to judge. But I did want to fill in those of you following along as to what is happening.

I have had some bright spots since I began this treatment, with bursts of time where some symptoms temporarily improved. Those moments were hopeful for me because it tells me that once the pendulum isn't swinging so violently up and down and I can get my immune system leveled, there is hope for feeling more human. Although there have been more flare ups of symptoms than there have been "good" days thus far, I know that this is how it all works. The immune system itself is so delicate and finding that perfect balance between the innate & adaptive sides is a balancing act all its own.

So, that's what has been going on in my neck of the woods. I hope to be able to provide a more in depth review of things as everything progresses. But until then, I wish you a happy and healthy New Year!

Cheers to 2018!

xoxo,
Christina
2 Comments

2017 WeGo Health Awards: Best In Show - Blog

8/17/2017

2 Comments

 
I am excited to announce that I have been nominated for the WEGO Health "Best In Show: Blog"
in the 6th Annual WEGO Health Awards!

WEGO Health is a mission-driven company connecting healthcare with the experience, skills,
and insights of patient leaders. They are the world’s largest network of patient leaders,
working across virtually all health conditions and topics. Click here to learn more about their Patient Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission
of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health
Awards are the only awards across all conditions and platforms, that recognize the over 100
thousand inspiring Patient Leaders who raise awareness, share information, and support their
communities, but often without recognition.

For me personally, it means everything to be nominated. I love to advocate, I love to share my life with this community, and I love to help others in any small way. THANK YOU truly for those who nominated me this year, it is genuinely an honor.

I’m now looking to my incredibly supportive network to help endorse me for this award. There
are two easy ways to endorse that only take seconds of your time!
1) You can click on my endorsement badge below:

2) Click HERE to be taken to my WEGO Health Awards profile where you can click “Endorse”
under my nominee photo

If I have ever supported you, made you laugh, or inspired you to keep fighting, please consider endorsing me for this award.

Xoxo,
Christina

2 Comments

Let's Talk About Crohn's Disease.. And What This Diagnosis Means

6/6/2017

21 Comments

 
I wrote this post in early May, when I got my news. However, I didn't post it then because I didn't want this to take attention away from Lyme Awareness Month. Since it's writing some things have changed; I continued more testing, more investigation & will write a follow up soon as my body allows.
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Well, here we are. It's been a couple of days since I finally got my answer, and yet it all still feels really fresh. I had hoped a few days time would give me some clarity to write this post, but right now I'm not there yet. I find myself bouncing around between a feeling of relief and understanding & back to a feeling of frustration and anger. At first I thought I would hold off on writing this post until the dust settled, but truthfully I'm not sure when that will be. I can't rush my feelings, but I also don't want to. I don't want to write some kind of clean and polished post which is void of my honest feelings. So, here we are. If you need to get caught up, I blogged about new symptoms I began having HERE and HERE.

I kind of chuckled when I sat down at my computer, because I remember writing my last post a week ago. When I was typing it out I distinctly remember myself omitting a line at the end where I said, "I just really hope it's not this 'one' disease." At the time I deleted it because I thought I might somehow jinx myself by putting it out there. But looking back now I realize that a part of my intuition knew it would be the answer, and I deleted it out of a sense of denial. It takes me a couple of days to write a post (I typically do it in segments), so by the time I was hitting "Post" a few test results had came in. As with most test results, when you look at them as a stand alone number it doesn't mean too much. But when you start combining it with other results the picture begins to form. I was aware that it was just as likely to be something minor like an unknown allergy as it was to be something more sinister. The tables could turn either direction, and I refused to believe it could be anything BUT just some simple little allergy.

There was just one pending test which stood between myself & this make believe land I was living in. I really truly believed it would come back negative & I could go on my merry little way and begin the gamut of allergy testing. It's almost like I actually thought if I believed it enough then it would happen. As if I could will my ideal future into existence. Quick spoiler alert, it turns out I could not.

The results came in, and right there in black and white were the words: Crohn's Disease. My first thought was "no way, no way, there is no way." But soon reality settled in and I realized that it made so much sense. It was indisputable; every single test result pointed in that direction and every single symptom fit. All my pain finally made sense. The severe stomach pain, the cramping, nausea, fatigue, loss of appetite, sensitivity to most all food, etc. Crohn's causes widespread inflammation (and ulcerations) which can affect your entire GI tract from the mouth to the colon, as well as the eyes, joints & skin. I had began having some eye ulcers & tongue/mouth ulcers a while ago, and now those weird symptoms finally had a home as well.

Crohn's Disease is chronic inflammatory bowel disease (IBD) characterized by inflammation of the GI tract. It is believed to be autoimmune in nature, where the mucus membranes essentially attack themselves. There is no "cure," and it varies between periods when disease is active or flaring, and when it is in remission (less/fewer symptoms). Crohn's varies person to person, and flares can get very serious if not handled properly. It can bring fun things like bowel obstruction, fistulas, fissures, malnutrition, and toxic megacolon among many other things. So keeping a keen eye on the body during a flare, and reducing the inflammation as soon as possible is very important. Also, both IBD's (Crohn's and Ulcerative Colitis) increase the chance of colon cancer by a great deal, so from now on I will need to be proactive about routine testing for that.

Alright, so now all the fun facts are out of the way, how do I feel? Well, where to begin.. I feel partially relieved. I was shooting in the dark for so long without an answer to my pain. I knew in my gut that this was something different.. this was something new. Getting an answer has allowed me to do things like completely re-haul my diet. Those with Crohn's have set diets during a flare (typically low residue) and then another diet they follow rather continuously to prevent a flare and keep the stomach relatively calm. So having this information now gives me the ability to hope for less painful meals & that gives me some peace. Getting answers has also allowed me to start reading as much as I can about Crohn's and has given me the hope of getting things under control.

On the flip side I feel overwhelmed. This is a whole new disease which I have to come to terms with. It's a whole new beast I have to work my way through to understand. Everything about this is brand new to me. A few years ago I was very green around the gills about Lyme Disease information, but through life experiences and research I was able to learn a lot. With Crohn's I am at the starting line. I feel like I hardly know anything, and it will take a lot of trial and error to find what does or doesn't work for my body. I also feel angry. I guess anger has been my primary emotion, and it's just this feeling of, "Seriously?!" Those of you following along know how HARD I have fought for my health to reclaim it from the grips of Lyme Disease. You also know that last year I got some great news about my bacterial loads & progress I made there. We went through mold remediation & I saw the light at the end of the tunnel. The specialized visual/brain therapy was all set to go, and I thought this was finally soon going to be "it" for me. I just so desperately wanted to be rid of all that plagued me, and on the path to getting pieces of my life back. I have struggled with IBS from 10+ years, and when things got more severe with my stomach in December I thought I could breeze through it and resume normalcy soon enough. It just never occurred to me that what I thought was routine IBS was actually Crohn's forming in my body. To be honest, this has likely been a part of my life for longer than I realized, but December was a particularly stressful time in my life which brought about the flare.

So what now? Well, traditional Crohn's treatment calls for steroids and biologics, both of which are HUGE no no's for those with Lyme Disease. They bring down the immune system and create the perfect environment for the Lyme (and other infectious bacteria) to come back out and relapse. It is imperative that I keep my immune function up in the places where it needs to stay up, so that traditional route will not be for me. Crohn's and Lyme Disease are on polar opposite ends of the treatment approach spectrum and that complicates matters. It will take work with Doctors & trial and error to find the right direction to go. I'm sure I will be able to navigate it, but right now it feels so much bigger than me.

And lastly, the question I'm sure many people are asking (because I know I did), how did this happen? The exact cause of Crohn's is unknown, but its a combination of genetics, the immune system & the environment. I know now (through testing) that I do indeed have the genetics for Crohn's. Check. I also know that Lyme Disease has caused disastrous turmoil to my immune system, creating the dysfunction, which is item number 2 on the list, so.. Check. And I have been in a state of almost constant stress, so my environment was prime for the picking. Check.

When I look at my family tree everyone is honestly SO healthy. Like, they could not be a healthier group of people. I am the only odd man out from the whole bunch. No close relatives on either side of my parents have an IBD like Crohn's. So genetics alone would not have activated this disease. However, what I did have (which none of my other ancestors or family had) is Lyme Disease. Lyme Disease eviscerates the immune system, and demolishes every piece of regularity it has. Lyme is known to create so many autoimmune conditions due to it's ability to get the immune system to improperly attack itself. Since my Lyme diagnosis I have became allergic to almost everything; foods, chemicals, you name it. The wrong shampoo gives me a migraine & inhaling the wrong chemical sends my heart into a tachycardia attack. My immune system has been dysfunctional for a long time due to Lyme, and in this case it coupled with my genetics, my environment, and created Crohn's. Bing, bang, boom.

I guess for now, this is all I have to say on the topic. I'm still digesting it and navigating through the complex web of information. I know that there is a reason for everything in life. I know God has a purpose for this in some way I can't yet see. But right now that does not bring me comfort, because I'm not to that stage just yet. On a rational level I can understand that, but on an emotional level I'm still lagging. However, I do feel unbelievably thankful to have gotten an answer now vs a few months down the road. This diagnosis also came just in time for Lyme Disease Awareness month, because boy oh boy, if there ever was a time that I loathed Lyme disease most, it would be now. If there was ever a time that I was motivated to spare even just 1 person from going through this, it would be now. The longer the Lyme bacteria goes unchecked before being properly diagnosed (5 years for myself), the more time it has to create deep destruction. Some of which won't even rear its ugly head until years later when you least expect it. My passion to stop this madness and advocate for a real lasting cure has been reignited 100 times over.

Heres the thing many of you know about me by now: I don't take no for an answer. I refuse to be pulled into this trap where I talk myself into believing I'm stuck with Crohn's for life. In the little time I've had to process this I've read about so many people in remission for years, living free and clear of Crohn's symptoms for 5,10,15+ years. Mark my words, I will be one of those people. I'm determined to reverse this process; to find a way to get to the root cause.

I will keep this blog updated as I navigate the world of Crohn's and try to climb out of the current flare which I am currently in. I will have further testing to try and tweak things in my diet/environment which might be contributing to the flare, so there is still lots of work to be done! I might be less responsive in the coming month or two, so if there's a lag in replying to emails etc then this is why. Thank you to those of you following along, and thank you for all the prayers. I feel them on every level.

xoxo,
Christina

21 Comments

The Chronicles of Tummy Troubles: Why Does It Take So Long To Get Answers?

4/26/2017

4 Comments

 
I'm going to do things a bit differently for this post. I really want to highlight just how long it takes in this medical system to get an issue/new symptom resolved. With turn around time, wait times, and appointments to discuss next steps, it can (and usually does) take months to resolve a new issue. So, for this purpose my post will be an update, however it will be done in Chronological order. I will breeze through Dec/Jan/Feb because I have a whole detailed post on that here, but for the rest I will be more specific.
December: Mid December I begin to get a new pain in my stomach. At first it comes and goes, and often my entire stomach hurts. I brush this off as a transient symptom, and try to trudge through.

January: Things during this month only amplify. The pain becomes much more severe and much more difficult to predict or control. It's all complicated because I find I am fighting C.Diff, so a lot of the pain gets pawned off as being placed under the column of "probably from C. Diff." I knew however that there had to be more to it. Often it was hard to point to just one area of pain, because so many things hurt in so many different ways. I have had C.Diff in the past, and it's never hurt quite like this before. This felt like a very new thing to me.

February: Around this time I have blood testing done & it seems to look like some of the pain is due to Sphincter of Oddi dysfunction. This again is something I had dealt with in the past on a few occasions since I no longer have a gallbladder. In a way it felt familiar but, this time it was SO much more severe, and the location of the pain epi-center moved. I began to eat a liquid diet, and then a low fat diet which wouldn't trigger the attacks. This however did not seem to be the smoking gun. At the end of February I had an ultrasound done. The ultrasound was inconclusive. The only thing it showed was a more dilated common bile duct. This can be larger when you have Sphincter of Oddi, or have a removed gallbladder, so while it answered some suspicions it did not really give a solid answer. I did not quite fit into the box of this being primarily SOD, or just SOD.

March: I know how absurd this can sound to an outsider reading this post. How hard is it for me to point to a source of pain and figure it out? I ask myself the same thing all the time, but it simply is not that easy. I had (have) pain absolutely everywhere (remember C.Diff). Then I had an epicenter of pain which covered a quadrant, and it was large enough that I could not tell where it was coming from: my pancreas, my large intestine (transverse), my small intestine, or my stomach. I have a very tiny frame, and it is all packed in there. Often times it felt like multiple things were spasming or hurting at once. On any given day my "guess" of what was hurting would change. I absolutely did not know, and guessing was just driving me mad.

So, finally, around the edge of March I was approved for an abdominal X-Ray. However, after the X-Ray it took some time to get the proper radiologist to read it and give his report. I would say there was about 10 days while I was waiting to get some answers. This was probably the most helpful scan of them all, because it visibly showed three issues in the area where I had my most pain. The most notable takeaways were that a portion of my transverse colon was tightly spasming, not only causing pain but also not allowing things to move through that area properly. A little bit below that was an area in my small intestine which looked to show some bowel wall thickening. So, what the heck is going on? I mean, I got some answers, but the X-Ray can only show so much, and a more detailed scan was needed to find the cause and link

April: It's now April. I am still in a lot of pain, my large intestine feels inflamed and raw almost 24/7, and with each passing week/month I can eat less and less food. Eating too much solid food too many days in a row will bring pain, because once it reaches that tight portion of my large intestine it has difficulty passing through. So I begin to alternate liquid diets in between actual food. Because of this I often feel like I am starving. Also, not only has solid food become problematic, but a lot of my usual safe foods are causing me extreme pain. I would eat what should be an okay food, only to have about 2 days of stomach pain in so severe I can hardly move. It's getting more important than ever to get answers to rule out something more sinister. At this point I am not against exploratory surgery because the pain is that unpredictable and that bad.

Finally, we move on to the next step, which is a CT scan. Due to my MCS I am allergic to the contrast solution, so I received an abdominal CT without contrast. We were aware that this might prove to be less than ideal without contrast, but the plan was to start here and repeat with contrast (and steroids) if necessary. I got the CT scan done, and surprise surprise, it was inconclusive. The lack of contrast not being able to highlight certain areas made a set diagnosis impossible.

We are now almost to May, and we have to change directions a bit. All of these tests I have had ran (many which I did not even list) are very expensive. Insurance is not only slow, but also notorious for denying claims. Due to financial costs another CT is not in the cards. For now it is on the back burner as we start to pursue answers from a different avenue. Although still extremely costly, we began with a laundry list of blood work, specialized panels and cultures, as well as CSA's from a few different companies. A large portion of this is out of pocket, and just to give an example the CDSA 2.0 test is $700 out of pocket, the Geneva Labs CSA with Parasitology is $500 out of pocket, my MRT intolerance test was $700 out of pocket, and the Array 10 is $1,300. Out of pocket... all of it. I know I have said this before but it is legitimately survival of those who can afford it. And in my case I have had to choose wisely and also spread tests out, because its an impossible cost burden all at once. But, if I need answers, how else can I get them? How else can anyone get them? I also got a lot of blood-work done through insurance, which will have co-pays and deductibles, and I can hardly wait to receive that bill in the mail and promptly faint (ha).

Now: Waiting. Waiting for results, waiting for more test kits, and waiting to be able to order other tests I need. In the mean time I am fighting this pain which waxes and wanes in intensity on any given day. I am diligently keeping a food diary to find triggers, and I am hoping beyond hope that some conclusive answers come.. soon. In the mean time I only found one thing which takes the edge off and it's called Bentyl. My friend Hannah calls it "tummy valium" and I laugh because that is so spot on! The side effects of Bentyl however are not great, including feeling woozy, dizzy, sometimes nauseous etc. So, I reserve it for times of great need. It helps to calm that tense spasm in my large intestine, and any tiny bit of relief helps.

In the mean time I am really trying to enjoy my good moments, and my better days. When I have a chance to find some joy in my day I really focus on it. I don't want to let this sink me or take my spirit. It's almost May and I feel just as baffled today as I did back in December. The health care system moves so slow, and I am sometimes baffled as to how many months of my life can go by in a flash while desperately investigating. Keep in mind, I am actually a "lucky case" because my mother is a physician who can help fast track some things. Yes, THIS is what it looks like to have things fast tracked. I suspect, judging on what tests are still to come, their turn around time etc that I still have at least a month or two ahead of me before I will have more clarity. It is a waiting game, and a coping game. I try my best to put my attention elsewhere, especially on bad days. I know I have pretty much retreated from the people around me recently, but it feels impossible to connect sometimes through the pain. But, alas, I'm trying.

If you made it this far, thank you for reading! I hope this post provided a small amount of insight into navigating the medical system, the kinds of costs incurred, and why it takes so long to get answers. I hope to have a better grasp on this soon, and of course when I do I will absolutely share.

xoxo,
Christina

4 Comments

Life Update: Ups/Downs, Sphincter of Oddi & Visual Therapy on Pause

3/14/2017

5 Comments

 
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What's that saying? "Man plans, God laughs." Ahh yes, this could not be more true, and how often I forget it. In my last blog post I had wrote about staring a vigorous visual therapy program. I began this program & completed about 3+ weeks before having to stop due to other health issues which arose and became a priority. I was burning the candle at both ends & something had to give, so the visual therapy was put on pause. It was a tough decision, one not made in jest, but ultimately the right thing to do.

What happened? Oh boy, where do I start! Around the middle of December I started to have some pretty tough stomach aches. They were in my mid-line stomach area & would wax & wane in severity. Because so many of my symptoms cycle through I tried to tough it out thinking it was going to leave soon.. it didn't. Things got worse & by early/mid January we discovered I was fighting C. Diff. The area of my colon most affected was the transverse & descending, but honestly the pain wasn't the same as when I had C. Diff in the past, which is why I missed it for so long. In some ways it was, but in other ways it was another kind of ache I couldn't quite put my finger on. Therefore it really eluded me for a long time to check for it. But alas I had an answer & could get started on treatment for it asap. I believed this would be the answer to all my stomach woes. In fact I soldiered through visual therapy this entire time, which if you've ever had C.Diff you will understand what an accomplishment that actually was. However the C. Diff, I would find out, was just the tip of the iceberg. 

As January lumbered on the pain did not get better, and in fact it just got worse. The mid-line pain radiated to my back and my shoulders & would come on in strong uncontrollable attacks. I no longer have a gallbladder, but the pain was reminiscent of when I struggled with that except much more severe. So we started investigating in that direction and realized the pain was coming from my pancreas. And the reason it hurt much like my old gallbladder pain (often affecting my liver too), was due to the Sphincter of Oddi. I hope to write up a comprehensive post all about SOD soon, because it's a fascinating little valve which is small but mighty. When the SOD spasms it wreaks absolute havoc on the pancreas and liver. More so, it wreaks enormous pain.
Both your bile and your pancreatic juices flow to your small intestine through a common duct that is opened and closed by a round valve. The valve is a muscle called the sphincter of Oddi. Sometimes the sphincter of Oddi goes into spasm; It clamps shut and cannot relax. This is called sphincter of Oddi dysfunction (SOD). The condition causes intense belly pain. Your digestive juices back up into your pancreas and into the bile ducts of your liver. This can causes inflammation of the liver and pancreas, and in some cases pancreatitis. It is most common in individuals without a gallbladder.
I can only describe a Sphincter of Oddi attack as a gallbladder attack on steroids. In January/February I was having them almost daily because I kept eating and not realizing I was triggering it over and over. That might sound silly but the effects aren't instant. So, the eating brings on the attack much later .. often many many hours later. It's not uncommon for me to have an attack 8 hours post meal, and then deal with mini attacks and painful pancreas inflammation for days following. Before I understood what was happening I was at a complete loss. I also struggle with a LOT of stomach issues, and having this pancreas/liver pain on TOP of C. Difficile was kind of my personal nightmare. The two together felt like someone chewed me up and spit me out. Everything hurt, and pinpointing what exactly hurt was hard to say. Once we realized what was happening I immediately went on a liquid diet. I lived on shakes & occasional crackers for 3 weeks while trying to allow my digestive system & organs to get a break. I was so weak, so exhausted, and battling a lot of pain. Every inch of my body hurt and was depleted. I laid in a ball and drank shakes and just tried to survive this period of time, because it was a lot.. mentally, physically, you name it. 

How do I feel now? On the mend, but not quite there. Managing SOD isn't easy. I've struggled with it in years past, and it always came on just as mysteriously as it went away. As far as this occasion, I really can't say for sure what the trigger was. Why it flared up now out of the blue is eluding me, but I have a theory which I'm working to confirm now. All I do know is that in this process I discovered castor oil packs, and I LOVE them. They are the only thing which offer some soothing relief since any kind of pain medicine is a big no-no with SOD. Pain medicine actually makes SOD worse, so that makes the condition trickier to manage.

For now I'm still fighting the C Diff & juggling the anti-microbials which make me herx, but are necessary. It's a fine balance to find a mix which will kill the pathogen but spare my body/liver (especially with mine being in a more fragile state). I'm also playing an up and down game with my SOD pain & digestive difficulties. So it's a little like two steps forward, one step back. I'm making progress, slowly but surely. Some periods thing's get worse (like high stress situations), and then I feel like I get thrown down into the trenches again, living on a liquid diet and getting IV fluids until my pancreas calms down. I have good stretches and tougher stretches, but I am determined to find a lasting solution. When I'm back on my feet and more stable I will have to start from the beginning with visual therapy, which is a little disheartening. However, I've come to peace with it. Sometimes life throws a wrench in your plans, and although I don't know why it occurred I'm just trusting in the process. I can only take one day at a time & adjust as needed. So for now, I'm adjusting to this & will keep taking steps. Thank you to everyone who takes a genuine interest in how I am progressing, and how things are going. The prayers and the support are deeply felt.

xoxo,
Christina


5 Comments

2017: What's To Come? Visual & Vestibular Therapy + How Brain Damage From Lyme Disease Has Affected Me

1/2/2017

11 Comments

 
Over the course of the years I have dealt with a lot of symptoms. However, out of all the issues I have dealt with, the most frustrating and life limiting have been my neurological visual issues. I have spoke about this on my blog in the past, but not so much recently. The reason for this was a feeling of uncertainty. No doctor could tell me exactly why this was all happening to me. I knew I had some internal brain damage, but there was no solution presented to me short of: treat the infections and hope it resolves. I did have an incredible visual therapist & optometrist who found two visuals isues I struggled with: Convergence Insufficiency & Binocular Fusion Disorder. I did visual therapy for both, and it improved on the tests, but did not translate a whole lot into my every day life. In some ways it did, but the results did not last. I attributed this to the fact that I still had infections which were affecting my brain. I just kept hoping and praying that as I rid my body of infections that everything else would just fall into place, and the visual issues would improve as well.
So what do I mean by visual issues? Well, I have quite a list of issues and symptoms, and I wanted to begin by listing them all...At least all which I can recall. Granted, a lot of the things listed below are problematic for more reasons than just visual things; I have other health issues which prevent me from doing them, but for the purpose of this I am just listing how it affects me from a visual perspective. I have had these issues for years (progressing with time), so this is a comprehensive list of ways I am affected.

Things which bother me visually:
  • Any kind of scanning. This was most obvious to me in grocery stores or places where I had to scan and look around a lot. I can not remember how many times I ran out of Kroger because my visual senses were so overwhelmed from the scanning & lights that I got in my car and was practically hyperventilating. This also translates to things in my home, but I will cover those more below.
  • Reading. Reading also requires scanning. I lose my place constantly, the words get jumbled together, and I have to use my finger as a guide. This also makes me feel so sick to my stomach, makes my eyes hurt, and gives me headaches. Magazines were the worst. I have an inability to flip through pages of a magazine. I get 1/4 of the way through and I am dizzy and nauseated and struggling.
  • Writing. Also falling in the scanning category, writing is particularly difficult. Copying text is the toughest though, so addressing Christmas cards felt like an impossible task. Having to look at an address and then back at my envelope to write (and going back and forth) is too much. Also included in writing is using my computer to write. Every blog post you see is written in pieces. I do often do audio recordings if I have a thought I want to put on paper, and transfer over. I can't remember the last time I was able to write a blog post in one go.
  • Scrolling. This includes scrolling on my phone or computer. Scrolling through webpages make me so sick.
  • Watching movement on TV. You know those TV shows or movies which have that shakey camera? That's 100% a no for me. Also difficult is action scenes, scenes which show any kind of drastic movement, or ones which pan the camera in crazy ways (such as Dancing With The Stars). The worst is 3D movies. I saw Avatar in 3D many years ago and even though I had my eyes shut half the time I had never felt more miserable. It was tough! Sports can be difficult too, particularly basketball which is fast paced.
  • Playing video games. I used to have a Wii and my sweet brother bought me an Xbox for entertainment purposes, but I never could use it. That kind of movement made me sick in 2 minutes flat.
  • Looking around, specifically in open spaces. I never understood why taking a walk felt like it left me worse off. When I would be outside walking I often felt faint and dizzy. A combination of the light (even on the cloudiest days), and scanning in such a large open space (in comparison to my usual view of my room) is a lot for my eyes. Looking around large areas leaves me overwhelmed and fatigued.
  • Coordination issues. I used to always just think I was clumsy, but now I know it's more than that. I struggle with catching a ball because I have no spacial awareness. I often bump or run into things, and I have cut myself (or come close) while opening a box with a box cutter because of this spacial awarenss issue.
  • Balance issues. When I am standing I am always wobbling around. If someone tells me to just stand up straight and still I will start tilting left and right and have a lack of balance. If I put on heels then forget about it! I will wobble endlessly, and cant find my balance no matter how hard I try. Standing on one foot to balance (say while putting on a sock or shoe) is physically impossible. Closing my eyes to pray in church was always an impossible task. Thank goodness for the pew!
  • Seeing movement. An example would be watching the movement of water. I feel like I will throw up in 2 seconds watching waves of water, even if I am not myself on a boat. Watching a merry-go-round or a train passing by is sickness inducing, and all other things which fall into that category. A flight simulator or those virtual reality goggles would be my own personal hell. If I see motion on TV while I am standing I get so dizzy I almost fall over and can't hold my balance.
  • Escalators and Elevators are an absolute NO. When I would ride an elevator I felt every drop and movement, and when I got off I was dizzy. Escalators are much the same, when I got off I was dizzy and struggling. I would take the stairs 9 times out of 10 just to avoid them. This also goes for ellipticals and treadmills. Anything which moves under me leaves me dizzy and overwhelmed and nauseated.
  • Sensitivity to light. Grocery store lights are the worst, but UV lights are tough, and some other artificial lights as well. It can vary from light to light, and I tolerate some better than others. Darkness is defintiely my friend.
  • Turning my head. This includes flipping my head over, or just turning to the left or right too quickly. I get SO dizzy and feel a pressure on my head. I absolutely can not spin in a circle under any circumstances (even rather slowly), and shaking my head is also a no-go. The dizziness is extreme. This also comes into play when I am in the kitchen and say I am turning from the microwave to the counter, or looking cupboard to cupboard. Any activity where I am doing something other than looking straight ahead is hard. Turning my head back to drink even makes me dizzy.
  • Crowded places. I did not understand this until recently, but prior to moving home I really had an issue with crowded places. I went to the mall to go shopping and had to run out of the store because I thought I was having an anxiety attack. The store was PACKED and the sights, sounds, and crowds made me much too sick. Attending basketball games became impossible, and I remember the last one I went to left me with a throbbing migraine and nausea. The lights, crowds, open spaces and scanning were a lot. Crowds at bars were unbearable and overwhelming. In fact, I stopped going out at all in my last few months living alone. Sometimes I could still manage to make it to dinner, but if we went to a super packed restaurant that would be very tough.
  • Car rides. This was a symptom which came on slowly but absolutely perplexed me. I first realized I couldnt tolerate riding in the back of the car and needed to be a passenger. This helped for a while until I couldn't be a passenger on busy roads such as interstates. Then I couldn't be a passenger at all and HAD to be driving to handle it. Then driving on interstates became too much, and I had to take back roads and drive slower. Then even in town driving was problematic. Then I couldnt go more than a mile without getting sick. Driving was the absolute worst of them all for me. It was more than just nausea. I felt dizzy, I got clammy, I got nauseous, and if I pushed it too far it would lead to a seizure. It was terrifying. I had to medicate with anti-seizure meds to tolerate even 1 mile of driving. I would be trembling and be overwhelmed and afterwards felt sick for DAYS.
  • Air, boat, train travel. Along with car rides any of the other methods of travel are even worse and not possible.
  • Bending over. Bending over to open a box or tie my shoe made me dizzy, especially when coming back up. When bending over to pick something up from the floor I always have to hold onto something for support and do it very slowly because I feel like I am off balance and will fall forward. This includes emptying a dishwasher, or anything else where I have to bend forward.
  • Dancing. For obvious reasons, the movement of anything of dancing is just a big big no.

All of these listed things are difficult or impossible for me. They make me feel nauseated, dizzy, and fatigued. I get eye pain, clammy hands, hot flashes, pallor, lightheadedness, and feel seizurey. I often say I feel "flustered" and like I want to "jump out of my skin." My anxiety spikes and I liken it to being in a room with a million strobe lights flashing while desperately trying to get out of there. These symptoms are overwhelming and all consuming. I ball up and tremble while having paralyzing anxiety and nausea with a queasy stomach while fighting dizziness. Light, sound, smell.. it all becomes too much. It's like someone plugged my nervous system into an outlet. Every single thing feels overwhelming to a degree that I can't properly put into words. I often cry because it is the only release I have, or otherwise I feel like I might explode from how overwhelming it feels. All I can do to stop it is lie in a dark room and just ride it out. It eventually eases, but sometimes it takes hours, and other times I feel the effects for days.

My world feels really small right now. Getting out of bed and taking a walk outside is really intense. The wide open space, the scanning, and the light leave me feeling very overwhelmed by it all. In the house even things like baking or decorating a tree or other housework would cause me to get sick to get visually overwhelmed. I can't flip my head too fast, I can't get on exercise machines, and I live my life moving very carefully. Everything is done carefully so I don't get dizzy, so I don't move too fast, or scan too much. My world feels much too small, and much too constraining. I do very little and feel like I am instantly fatigued and sick from it. Everything I do is limited by these symptoms, and I have to stop and rest and regroup multiple times a day. I have spent years of my life searching for the answers. I primarily consulted online groups for people with Lyme Disease because I thought I might find a kindred spirit there. I didnt. I have always felt very alone in this. Even after seeing endless amounts of Doctors, not one has ever said to me, "Yes I understand this, here is what you have." The best I got was my current LLMD who suspected it was caused by infections and we had hoped it would resolve and other things resolved. That was the best I had. It was the only real hope I had.

This kind of visual sickness was not the typical motion sickness. It was not coming from the inner ear, and Dramamine did not help. Through my ocular-neurologist we discovered an area of brain damage which we suspect was caused internally (by the Borrelia). This Doctor told me that likely was the cause of my symptoms. He said my motion sickness came from a disconnect in my brain between the eye and ear. There was some kind of damage there, and the two did not connect and work properly, leaving me with these visual issues. Again, the hope was just all being held in it maybe just going away one day.

Well, here I stand in January 2017 and I am now embarking on a new visual & vestibular therapy which prayerfully will heal the problem areas of my brain. As with anything, there is no guarantee. There is just a well trained Doctor who heard my plight and really felt like my issues line up with other patients he has seen, and therefore there is hope. Much of what I have accomplished so far has been built on blind faith. This is much the same, because although I check pretty much every box for this condition, the one big factor which sets me apart is the brain damage happening from an internal cause. All the other patients either inherited it or had damage from something external such as an accident. For me it was something which occured suddenly (starting slowly in 2009 and progressing), with no family history, and no outer trauma. So I am a new kind of patient in that regard, and also a new test subject without that same level of guarantee attached to it.

Many patients who have this condition notice that after a while their body starts to compensate to help them. For example the brain will shut off one eye, or create tunnel vision, or other conditions such as that. It is a survival mechanism because motion is too difficult to bare. The body slowly closes the patients world down by reducing motion as much as possible on it's own. I believe this is why I also developed Convergence Insufficiency (which I was diagnosed with a couple years ago). Convergence Insufficiency is when the two eyes can't work together and the brain shuts down one eye to compensate. These patients have spacial issues, often bumping into objects or not understanding how close things are to them in the world. This was and is a huge problem for me, which I now strongly suspect developed as a defense mechanism. It is also why it improved a bit with CI specific visual therapy, but then worsened when I stopped. The root cause itself was not solved yet.

The most interesting part of all of this (at least for me), was how it affects the autonomic nervous system. This condition keeps the body in a constant flight or fight mode. The autonomic nervous sytem becomes revved up, and stays revved up, and it puts a huge strain on the body. If you have read my blog for a while you know how much trouble I have with my autonomic nervous system and how my body stays in overdrive and I am very overly sympathetic dominant. With therapy, this has improved for people, and I am prayerful and hopeful that will be the case here as well.

I will begin daily extensive visual therapy for this condition. It will be hard. It will be uncomfortable. I will likely be blogging on here much less, and be much less present so I can devote myself to it 100%. Some patients get worse before they get better. Most all patients feel terrible during the visual therapy, and I fully understand and accept that it will be tough, but I am determined. And I pray that this will help. All that I can do is try. I plan to live in the moment and take each phase step by step. I will be blogging all my experiences on a separate sub blog, which I will make public when I am further along/finished. I havent decided just yet when I will put it out there, mostly because I want to be sure of what I conclude before I make it public. It will be more of a tool for me to look back and see how things do or don't progress. I will also write more about this condition on that blog, but for now I don't want to invite too many questions (there is very little about it on the internet), by calling it by name. Mostly because I do not know if it will work, and I would hate for someone to find my blog by it's name and either 1. get unrealistic hope, or 2. get discouraged. I hope to be able to share more with you all on it's "official name" and diagnosis in the future.

For now I will sign off and wish everyone a very happy 2017. I will blog and be on social media as often as I can, but if I don't reply to your emails etc then this is why. I also ask for prayers in every which way. Prayer that its successful, prayer that it's tolerable, and prayer that this is what I have been so desperately searching for.

Much love to everyone

xoxo,
Christina
11 Comments

Health Update: Genetics, Neurotoxins, and Mold (Part 3)

9/19/2016

20 Comments

 
Welcome to Part 3. If you are still following along with me, then thank you. If you'd like to get caught up you can read Part 1 and Part 2 first. At this point we knew we were heading in the right direction. It was obvious that my autoimmune system was on overdrive triggering my MCAS, and now the hunt was on to figure out what the culprit could be.

Life works in really unexpected and wonderful ways, and this next part of the story was no exception. Through a friend I had been guided to a M.D who is an Integrative Doctor and also works with Lyme patients. I really felt like it was time for a pair of fresh eyes to take a look at me as a whole. I had been feeling like this for a while, and it's not because my current Doctor isn't incredible (because he is), but because I believe in trusting your gut & my gut said this was right. It was truly serendipitous how I met this Doctor (I'll call her Dr. A), and it was a series of perfect moments that got me there. She shared my same vision and values & I admired her "never say never" mentality. If you ever feel discouraged or healing feels out of reach, she's the kind of person you would want in your corner reminding you that the words "no" and "never" don't exist in her vocabulary. If there is a will there is a way. To top it off her wealth of knowledge is incredible (especially with taking genetics into account).

During my first appointment Dr. A she took a look at my medical files and genetics, took my history, and asked many questions. First things first she got me started on some supplements to help my methylation & cell detox. I have some genetic mutations which make things a bit tougher in terms of detox & getting the right supplements that work with my body. If anyone is familiar with HLA, MTHFR & COMT mutations, they are tricky and tedious formulations to work with. Each of the 3 play off of one another and it's essentially like solving a giant Rubix Cube. In fact I have tried and failed with a few "genetic experts" in finding a good balance for cell detox etc. Dr. A had complete ease decoding it all, and that my friends was a blessing. The other thing she suspected was that I was dealing with a neurotoxin and strongly suspected it to be mold.

Mold... I don't even know where to start on this topic. I have avoided exploring the idea of mold exposure with great resistance because I had a terrible experience with black mold in my work place (circa 2008) that was intense. The fact that I have the HLA mutation means that genetically I can't detox out mold biotoxins the way most people can. These biotoxins stay, they linger, and they mess with the body. The idea of thinking or accepting that my home could have mold, and the thought of what that would mean for me was just too much. My first knee jerk reaction was "No, absolutely not. It's not possible!" But once I took a real assessment of my symptoms and where I was at, my rational side kicked in and I knew I had to at least explore the hypothesis.

So much has changed in the world of biotoxin illness testing in the last 5 years. There are now really accurate markers in blood work that can point toward the presence of biotoxins and mold. It used to be limited to a urine test that detected a few mold mycotoxins, which was often unreliable. But now thanks to the pioneering research of some incredible Doctors they can get very specific. I first had a VCS eye test done, and boy did I fail that. I'm talking, complete big ole capital F. The VCS (Visual Contrast Sensitivity test) is a very specific test for mold, because the toxins they create mess with a specific part of the brain which will make this test impossible to pass. It's a great first line indicator if there is an issue, and I'm not going to lie, it wasn't too reassuring to fail it. Next up was blood work. MSH, C4a, Veg-F, TGF Beta 1, and MMP-9 to name a few. Each of these are specific markers in the blood which will either be suppressed or elevated at the presence of mold biotoxins.

The results started to roll in and one by one each test came back abnormal. Some markers can tell you if it's a chronic (long term or old) exposure, and those came back first. So this told us that yes I am dealing with biotoxins and have been for a long time. However the tests which would tell us if it's a current issue were still pending. These took the longest, and we waited with baited breath. When they came back and my TGF Beta 1 was at 14,000 (the highest range is 2300) my heart sank. I didn't know what to feel, it was such a jumble of emotions. I think it took 2 weeks to really process and accept what the lab work said. I've learned that I can't rush my feelings, and I need to feel the fear, disappointment & uncertainty in order to gather my strength and move into the action stage.

Dr. A said that with my test results being what they were, it's an absolute wonder that I am still functioning as well as I am. Looking solely at the blood work you'd think I was a character on the Walking Dead (ha). Truly, that gave me pause. In that moment I realized how much I under-appreciate my body. I am guilty of feeling like my body fails me, but truthfully it's pushing and fighting through SO much each day, and through this I was reminded of my strength. Every ounce of me is a fighter & as much as I knew that before, I certainly know it now.

Circling back to what I said about God putting people in my life at the right moments, He knew it was the right moment to uncover this missing piece. In all my years on this journey I had never once investigated the possibility of mold exposure or what role biotoxins might play. I say that now was the right time because I finally have this incredibly wise Doctor with a wealth of knowledge on the topic, and from that perspective the timing could not have been better. I mention timing for a second reason as well, because even 3 years ago there was only 1 option for mold. You have to practically tear your house apart to find the source (we have 0 visible mold), and remediation is grueling. You have to evacuate the home for months, they use toxic chemicals & you lose most everything due to mycotoxin exposure. It is an absolute nightmare to even fathom. Dr. A had a mold issue herself recently and recommended an all natural gentle remediation that uses a natural enzyme (not harsh chemicals) to treat the home. They can get into the walls and do not require any demolition (unless you have to do re-piping due to an existing leak etc), it take 4-5 hours to fully treat & you can go back to your house the same day. This will all take place in the coming weeks and I will do a detailed post on how it worked out.

We did ERMI testing & found elevated values of mold on the first 2 floors and very high values in our finished basement. The scale is -10 up to 20. For someone like myself with low MSH levels I need a 0 to -2 range to be able to recover from biotoxin illness. The basement was an 11, and that's incredibly high in the ERMI world. And that's with ZERO visible mold. At this point we don't even know where it's coming from, and until the home inspection it will remain a mystery. Our home is relatively newly built, it hasn't had any major water damage, and it looks pristine. I will say that I have read a plethora of statistics about mold in homes, and many of them echo the same statistic that about 50% of homes in America have enough mold to produce symptoms. If that blows your mind trust me you are not alone.

So, through the many many months we have ended up here with a very clear answer. Although these last 3 posts were way more detailed than my usual update posts there were many reasons for me disclosing so much information. For one, it's important to see just how much time and effort goes into developing a treatment plan and making steps. For us to land on the conclusion of mold illness it took about 5 months total. From all the blood work, the waiting, the tests, more waiting, the Doctor's appointments, and even more waiting, it really adds up. 2016 has fully been spent healing from C. Diff and figuring out this next piece of my puzzle. With a chronic illness people sometimes wonder where all the time goes. It's a totally valid question, and I hope that although this was just a taste, perhaps it could be a useful explanation. I also wanted this 3 part series to encourage those who feel they hit a plateau or don't quite know where to go next. This was my blueprint, and yours may look very different, but never stop looking and searching until you feel well. It might take months, and it might lead you to many dead ends before you hit the finish line, but ultimately it is all worth it.

The plan going forward is to first remediate the home, and then get started on a comprehensive mold and biotoxin rehabilitation. I will talk more about this as they occur and I can share details. Thank you for following along on my health update, and it is my hope that in the coming months and year I will have more uplifting health updates making great strides.

xoxo,

Christina
20 Comments

Health Update: MCAS, Histamines, and Inflammation (Part 2)

9/15/2016

4 Comments

 
Okay, so now that we got the Fry testing out of the way for co-infections (in Part 1) you might be wondering, "What else could you possibly have?" Well, this is where a plethora of other things come into the picture. Things like viral loads, parasites, autoimmune disorders, neurotoxin syndromes such as CIRS, heavy metal toxicity, things like Candida, and so much more. Oh yes, the layers of Lyme Disease have deeper roots than what meets the eye, and it's also why it's such tangled web to unweave and heal. Essentially when the body gets hit with something like Lyme Disease which compromises the immune system so deeply, it gives way for other things to take hold in the body (such as viruses, such as autoimmune conditions etc). That's not to say it's impossible, but just that it is a process which you have to take step by step and check off the boxes as you go along. Each of the items listed above can produce a handful of debilitating symptoms, so just because they are talked about along side of Lyme Disease, it doesn't make them less serious in nature. They all deserve the utmost attention and proper protocols.

As I had mentioned in my post from May, I was dealing with a lot of crazy heart symptoms which came to the surface, along with a flare of neurological symptoms, feeling exceptionally run down, feverish, exhausted, and battling migraines (among other things). I did a CSA and got a newly updated MRT food intolerance test done. These helped take the burden off of my body by not eating things that would cause more inflammation and pain in my system.

The next avenue of investigation for me based off of my symptoms was testing for MCAS. MCAS is short for Mast Cell Activation Syndrome. MCAS is an immunological condition in which mast cells inappropriately and excessively release inflammatory mediators, resulting in a range of body-wide symptoms. Primary symptoms include cardiovascular, gastrointestinal, neurological and respiratory problems. Patients with MCAS have a normal number of mast cells, but these mast cells do not function properly and are defined as "hyperresponsive." I would describe the mast cells as being trigger happy.. they explode and release in overwhelming quantities from the smallest (and sometimes even no) stimuli. Mast cells are a type of white blood cell which are found in various parts of the body and are part of the immune and neuroimmune system. Their role is to be protective agents, and when they are triggered they rapidly release vast amounts of histamine and other inflammatory agents. In low or normal levels this is okay. In someone with seasonal allergies the reason they are sneezing so much is due to mast cells releasing histamine, which in turn they take "anti-histamines" for. In the case of MCAS the mast cells in the entire body (not just the nasal passageway) are releasing inflammatory substances at a very high rate from the tiniest triggers. Symptoms include (but are not limited to):

Cardiovascular
-lightheadedness, dizziness, presyncope, syncope
-tachycardia, palpitations,
-hypertension

Gastrointestinal
-diarrhea, cramping, intestinal discomfort
-nausea, vomiting
-inflamed spleen & spleen pain

Psychological & Neurological
-brain fog, short term memory dysfunction, difficulty with recalling words
-headaches, migraines

Respiratory
-congestion, coughing, wheezing

Vision/Eyes
-ocular discomfort, conjunctivitis

Constitutional
-general fatigue and malaise
-food, drug, and chemical intolerances (especially fragrances)
-sense of being cold all the time

This seemed like the right next step because I had pretty much every single symptom listed above, and then some. I lived on Benadryl, various antihistamines, my inhaler, and anti-inflammatories. Even with all of that I was still struggling. One big thing that became necessary was to re-home our cat. This was one of the toughest things for me to do, but it had to be done. I have been allergic to cats since I was 5, but as long as Cali kept a bit of distance I used to tolerate her dander okay. But as things changed and my mast cells became an obvious issue I knew I would never get better with her around. Re-homing her was the right choice, but it gave me great sadness that it had to come to that. My health is priority #1, and I feel lucky that a friend was able to take her and has given her the moving loving home. So, among the sadness I am thankful for that.

Picture
This shows the role of Histamine in body-wide symptoms. Just 1 of the many things excreted by Mast Cells
So, back to MCAS. There are specific blood and urine tests which can be ran to diagnose this disorder. Since Mast Cells release the substances histamine, prostaglandin and leukotriene, these can be readily measured via a 24hr urine sample. PGD2, PGF2a and n-methylhistamine can also be checked via urine. In some cases if these show an elevation and the symptoms match up it will be a good first indicator. However, you have to go further with some blood work. Tests include: serum chromogranin A, plasma histamine, chilled plasma PGD2, and stat chilled plasma heparin. Shew, what a mouthful. Needless to say I had another month full of many prokes and prodes and tests galore. And what did we determine? I definitely have an issue with my mast cells, histamines, and an over abundance of inflammation throughout my body.

Now that we knew this was an issue, the next question was why it was happening. What is the cause, and what can be done about it? Unfortunately there isn't a ton of great info out there on the interweb about this topic. The consensus is that there are various supplements that can be tried, but ultimately its important to find the root cause to fix it. Otherwise it will just be like a band-aid holding up the dam and eventually it will become useless as the body adjusts. There are many different schools of thought on what the root cause could be. Some say genetic mutations are the underlying issue, others say infections or parasites are the cause, and the majority agree that it varies greatly by person but its likely a mix of a few different things.

Here I was, now knowing I had another clue, but not necessarily an answer. So guess what? It was back back to more testing, and more digging to continue to pin-point the root of my troubles. For now I will end Part 2 here and continue on with Part 3 in the next post.

xoxo,
Christina

Sources:
1. http://www.mastattack.org/2014/10/mast-cell-mediators-recommended-testing-for-mcas-diagnosis/
2. https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome
3.http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/

4 Comments

An Overdue Health Update: CD 57 Levels, Fry Labs Testing & More (Part 1)

9/12/2016

1 Comment

 
I just realized how long it's been since I've wrote a health/life update.. And boy it's been a while. I think it's because I've been in limbo for quite some time, then everything piled up and writing this post felt daunting. I wrote a post back in April talking about my heart and circulation issues (here), but that was just the tip of the iceberg of investigative work that has been going on for months. This might be a bit long so I'll break it up into a few posts, but if you're interested then read on below... Ready? Okay, let's jump in!

Last year in July 2015 I contracted C. difficile for a second time, which I battled until March of this year. It was long, it was exhausting, and it held me back from being able to pursue any other kind of treatment or plan. C. difficile is an insidious infection, and with my low body weight & lowered immune system I had to quite literally give all my bodily resources to fight it. Nothing can scare me quite like C. diff can, especially because it felt like I had one of the most resistant strains. Things that really should have worked (with 90% success rates) were tried numerous times and I was still not able to kick it. So that was priority #1, and once I managed to test negative (by the grace of God), and the smoke cleared, it was time to get back to business.

CD-57 and Fry Labs Testing
So here I was in late March and I knew it was time to start answering some important questions. I needed to know how things were progressing and what still remained to be dealt with. I've made great strides, but at the same time I'm still quite symptomatic & have work to do. Some questions we had were: How were my CD57 levels? How does my Fry smear look like now more than 4 years later? What other infections might I still be dealing with?

This is where we began, and they were the most important questions to have answered right off the bat. As many of you know, these specialized tests each require many tubes of blood & also have a longer turn around time (ordering kit, drawing blood, getting results) of 2-3 weeks. I had to break up the blood draws into two sessions about a week apart, and with great impatience the results began to roll in by the end April. The good news? My CD-57 levels have reached 124!! I began at a rock bottom 16 (you can read my post on cd57 here), and have made incredible progress. I cried the happiest tears & I'm still amazed at how far I've come with that. It also confirmed my suspicions that my relapse was due to co-infections, not Borrelia (but more on that later.) I received a piece of great news with that & then braced myself for the Fry results, which truthfully was something I've put off for a long time out of fear. I knew I couldn't live in a world of limbo, and I needed to know what else was lurking in my body.

Via Fry Labs I had a couple of different panels ran, and it was very extensive. There were 3 separate types of tests & it was in order to cross every "T" and dot every "I." We first did an comprehensive DNA sequencing panel. Basically this looks for the DNA snips of various infections in the blood. DNA sequencing is quite pricey, but also quite reliable. It doesn't rely on antibodies, it won't miss anything just because it's in biofilm, and it's pretty cut and dry. Yes as with anything there is room for error, but it's far better than many co-infection tests on the market today. DNA sequencing did not find any of the usual suspects in the co-infection world. It did find some fungal DNA suspected to be Protomyxzoa Rheumatica because of its 97% DNA match. I knew I had this blood borne parasite (a close cousin of Malaria) since 2011, so this news wasn't too surprising.

Secondly, I had standard iGg and iGm antibody testing done also through Fry. This looks for the antibodies the body creates for specific infections. This is less accurate because it only looks for certain strains (which makes it limiting) & it's more possible to have false negatives, but it's a good second line of testing to have regardless. Most of the usual suspects came back negative for both iGg & iGm, but 2 tests came back faulty, which we're also presumed to be negative. In short, Babesia & Erhlicia both showed up as iGm positive but iGg negative, which is not possible. iGm is the antibody made for acute infections that the body is newly exposed to. iGg is the long term antibody made very soon after initial infection that shows the infection was there at some point in history. iGg antibodies get made after a few days and stay forever. For example If you ever had mono you will forever have iGg antibodies show up on your panels for mono even when you are healthy. Therefore, for me to presumably have a NEW infection of Babesia & Erhlicia that is iGm positive it absolutely had to have made the counterpart iGg antibodies too. This usually signals a faulty positive. Also, I would absolutely know if I was somehow brand-newly infected with those 2 infections. Those are absolutely debilitating when acute & I was feeling was too "normal" for it to be plausible. Coupled with the non detection in DNA I felt certain, but we had yet another line of testing which could explain more.

The third Fry test I had done was the Florescent DNA stain & the May-Grünwald Geimsa blood smears. These apply special stains to the blood or DNA and look at it under a microscope. Fry labs provides a photo of both of these which they sent me so I could see visually what my blood looks like under a microscope. I was looking most forward to this because I had it done in 2011 and wanted to compare the two. My 2011 picture looked pretty terrible... It was full of biofilm, Protomyxzoa Rheumatica & Bartonella. It was one messy picture, and that was my starting point. In comparison, my current smear from 2016 looks incredible! Sitting side by side it's night and day. My red blood cells look healthier and clearer, and while I do still have some biofilm with Protomyxzoa in it, it's MUCH less in volume. The amount of biofilm as a whole was greatly less, and this news is huge because biofilm is a big impediment for healing. I was thrilled that the quantity was lowered. I wasn't looking for perfection here, I was looking for improvement. Again, no finding of other co-infections in the smear, so that's 3 for 3 non defected. I am going to take that as a good sign. There is always the possibility that something could have been missed, or I have a particular strain of an infection which wasn't included in this testing panel. But for now, this is the most extensive testing that I could have possibly had and I like my odds. I'm pleased with this result.

Examples (these are NOT my results, just examples): Below you will see the Florescent DNA stain on the left. That milky blob in the middle is biofilm, and the arrows pointing to the lit up dots labeled "A" are showing the Protomyxzoa inside of it. On the right you see a May-Grünwald blood smear, and as you can see the purple blobs are what should not be there, and they signify various lymphocytes, neutrophils, and bacteria. Again, these are not my tests, but just a visual of what you receive with the Fry testing.
Florescent DNA Stain - Fry Labs
May-Grunwald Smear - Fry Labs
In summary I'm still dealing with the co infection Protomyxzoa Rheumatica, which is a blood borne parasite that has qualities of malaria & also qualities of a fungal nature. Protomyxzoa is a complex infection, and the reason I have yet to treat it by hitting it hard directly is because when I was diagnosed in 2011 there was no good treatment for it. It was trial & error, and patients simply were not getting better. I took my fair share of anti-parasitic meds through the years, and although it might have helped some, it was way too harsh on my body to be sustainable. (My post on proto is here). Protomyxzoa is an evasive and tricky infection, and in the past 5 years a lot has been learned. However, although treatment approaches now have better success, it's still sub par at best. The plan was always to save this infection for last, and now that we had this 1 piece of the puzzle concluded it was time to run more tests to continue uncovering what else is going on in my body. Many of my  worst symptoms could not be attributed to just Protomyxzoa, so further digging was needed to see else is lurking ...

In an effort to keep these posts refined and not too long I'm going to end this here for now with Part 1, and continue Part 2 in the next post.

Here you can read Part 2, and Part 3.

xoxo,
Christina

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