A Lyme Disease Blog Sharing Support & Awareness

Please Keep Going

3/9/2022

It’s been a while since I’ve blogged, but I felt deeply compelled to come back with a post that may be my most important one yet. And I hope that this reaches through the stratosphere and finds exactly who needs to see it. I pray it does.

Some of you may be new, and some of you may have been around for a while. Whether you know my story or not, I’m going to quickly condense it to make a much larger point.

In 2006 I went to college feeling run down. What transpired from there was 5 years of struggling to get through college while my symptoms snowballed to unmanageable proportions. In 2011 I was finally diagnosed with neurological Lyme disease, and in 2012 I became fully bed bound. I don’t use “bed bound” loosely or in a cutesy sense. Oh no, I spent every waking second in bed because I was too weak to function otherwise. I would shower once a week with assistance (sometimes as a sponge bath), and if I made it down the stairs once every 3 months my family would cheer. In order to celebrate a holiday like Christmas I would have to prep for days and save up energy praying I had enough stamina to put on normal clothes and walk down the stairs for an hour, but 75% of the holidays got skipped because I couldn’t even do that. At many times during those 8 years I didn’t think I would make it. Yes, there's the punch line... this was my life for 8 years. I lived like that for 8 solid years. I was bed bound, weak, and in pain every waking second. Treatment was grueling, and many of the things I tried over the years were unsuccessful. The pain I lived in was unrelenting, and I have a hard time speaking about it now without crying. I do not know how I managed it, and still to this day years of my life feel like they occurred in a total fog of war. I was weak, I was so thin you’d think I’d break if you touched me, and each day I survived was a miracle by most doctors who believed my body wasn’t strong enough to withstand the hell I was living through. From seizures, to excruciating pain, to organs slowly failing me, there was no end in sight. Few people who saw me up close and personal during that time know just how bad it got. Trust me, it was grim. I walked through this darkness with no real hope - I had a few Doctors who tried to help, while many gave up and said there wasn’t more that they could do. Did I listen? No. I found someone else and tried again. I tried over and over against all hope, until something finally clicked. My climb out of the depth of my illness was slow, and it was hard fought every single step of the way, but I am here now.

You see, my existence was hell for so long, and I was clinging on to life each day. But today I type this as someone who is thriving - I work a full time job I love, I am active, I’m independent, and if you see me you’d consider me a totally normal person. Yes, I still have a chronic illness that I take lots of meds for, and yes I still have aches, pains, and other things I deal with. But my life has done a complete 180. To think I could have never seen this moment because the Doctor's and people around me convinced me to give up makes me shudder.

I don’t repeat my story and my message because I think I’m some kind of inspiration others should flock to and admire. No. I repeat my story because I pray you read this and choose today not to give up. I pray you can look at me, someone who was stuck in a bed for 8 years in a living nightmare, and remind yourself that you can find a way out too. Please do not ever let a Doctor, a stranger online, or even your own family convince you that you are a lost cause that should end their life. Don’t let your own thoughts convince you that you’ll never get better. When it is your time, God will take you. When it isn’t your time, He won’t. So if you’re still here reading this, then you are needed on earth. Even if everyone says you’re beyond help, keep going. Find a third, fourth, hundredth opinion if you have to. Keep going. Your life has meaning, and when you realize there are billions of people on planet earth, you’ll see that a handful of naysayers don’t speak for everyone. Someone out there can help, and all I need you to do is hang on until that arrives. Please keep going, keep fighting, and don’t ever let anyone gaslight you into feeling as though you aren’t worthy of life.

Why am I saying all of this so fervently? Because I recently watched a young woman with Lyme take her life while her friends, family & a Facebook page of 200,000 “fans” sat and watched. Her doctor said they couldn’t do anything more to help her, and she believed them. She felt all her dead ends and road blocks over the last few years were a “sign” from God that she truly can’t be helped, so she should die. And so, she did. First they took all her meds away from her, and then they removed her feeding tube, until slowly after 6 weeks she starved to death and passed. She did all of this while THOUSANDS of people cheered her on. It was like a mass psychosis, and it makes me sick to think about. If she was meant to leave this earth then it would have happened naturally. It wouldn’t have happened by withholding life force until her organs couldn’t continue on. For her to make that decision privately is one thing, but to watch it be celebrated in this community broke my heart. She left this earth thinking that just because Doctors A, B & C said she’s a lost cause then it must be true. And she sent a message to thousands of impressionable patients (young and old) who will now believe it applies to them too. The emotional mindset of someone dealing with a chronic illness is fragile at best. Depression and self-loathing runs deep in this world, and it does not take much to convince someone in that kind of unstable mental space that they too should die because it's easier that way. If I would have EVER listened to Doctors like that I would not be here today - thank God I didn’t.

If you’ve seen that particular story on social media, I pray you hear my story now and that it nullifies anything you saw or “learned” from her. Please do not give up, you are not beyond help. And if that moment ever were to come, God will decide that. Until then, no matter the pain and despair please allow me to hold hope for you that you will come out from this darkness. Allow me to remind you that out of the black of night emerges a new morning each and every day. You are worthy of life, and you are worth fighting for. I beg you to hold on, and never let "death" being glorified and craved in such a grotesque way make YOU think that you should do the same, or that you are worthless and beyond help with your illness.

Please, keep going.

xoxo,
Christina

23 Comments

A Note To My Readers...

3/22/2021

17 Comments

I never saw it coming.

Isn’t that what they always say? When an ordinary and unsuspecting day brings horrors too large to fathom, we never can see it coming. Thats what makes it all the more jarring and all the more life changing.

When you have time to prepare for inevitable pain you can choose to spread the pain out in small or large doses. You have the option to stay in denial as long as you need until you’re ready to swallow the truth of reality. I know that first hand, because much of the grief through my illness was spent in denial until I felt emotionally ready enough to accept the truth of my ailing health.

But once you feel a sudden loss, the kind that rips the rug right out from under you, you will never be whole again. That fall is so large that you shatter into a million pieces on contact. And even when you slowly begin to pick up the pieces and glue them back in place, you’ll never quite be the same.

I will never be the same.

On February 5th it was an otherwise normal day for me. I woke up, worked, made lunch, took a shower.. all the usual daily activities. You know that feeling when a moment is so mundane and boring that you feel completely comfortable? It was like that. My guard was down and I was completely at ease. I was listening to music while working on an Excel sheet when I saw my phone light up with a text from my dad. “Come down” it said, then “hurry.”

I made a mad dash downstairs thinking maybe he fell off a ladder (he was working around the house earlier), or maybe he needed help with something that was heavy. What I didn’t expect were the events that followed. I made it downstairs and saw that my dad couldn’t breathe, so I called 911 and ran to him. His breaths were hard fought and got weaker until they stopped altogether. At that point I began chest compressions while time seemed to slow down to a crawl. I spent 10 minutes fighting harder than I’ve fought for anything to try and save him. But ultimately he didn’t make it, and my entire world was shattered.

The following days and weeks were unrelenting. Every quiet moment or anytime I shut my eyes I would see the scene play out in my mind. I will be really frank and blunt when I say this - until you actually see a person die in a sudden manner you have no reference for how horrific it will be. There are movies and TV shows which reenact it in a way that seems peaceful; like they just nod off and it’s so serene. Unless someone is in a hospital or hospice that isn’t the case. The body has various reflexes to try and keep you alive. Even when you lose consciousness the brain stem activates the lungs to gasp for air (called agonal breathing). It’s shallow, yet gargled, yet it sounds so painful at the same time. The body fights like hell to cling to life and if you’re there watching it unfold it will haunt you forever.

How fast a human being can go from being ‘fine’ to ‘limp and lifeless’ is faster than you think, but still not fast enough. It’s quick in a way that shocks you at how fast someone you love is gone, but yet slow in the 10 minutes you (and their reflexes) try to save them. It’s this oxymoron I have in my brain that has made it largely impossible to digest. It’s the trauma of the situation replaying in my mind that keeps me from having a single moment of peace. And in the flashbacks from small triggers in life that paralyze me. I’ve seen a therapist and now understand that I’m suffering from trauma and PTSD. I don’t know the way out of this, because it feels rather impossible to escape, but I trust that they do.

So why am I telling you this?

Many reasons. For one, I will be significantly less active on this blog & my social media accounts while I try to pick up the pieces of my life and learn how to function again. I’ve always made the promise that I wouldn’t abandon my blog or the patients who needed me - so it stands to reason that I needed to share more that just “sorry I’m leaving for a while” and leave it at that. Last year 6 million people stopped by this little blog of mine, and thousands emailed me. I usually devote 1-2 hours each day to respond to every last email, comment, and DM because all of you mean so much to me. I want those people who read me to understand that if it were anything else I’d still be here to help in full capacity. But right now I am so overwhelmed and spread so thin that mentally I have to step back.

I don’t know when I’ll be back or when I’ll be more active. It may be many months, I'm not sure. But until then please take care of yourself and hug the people you love. Life is short; not just your own, but the lives of those you love too. Take time to cherish them.

Until we talk again..

Xoxo,
Christina

17 Comments

What Are Multiple Chemical Sensitivities? All About MCS & How It Affects Peoples Lives

1/22/2021

3 Comments

There are so many components to chronic illness that when you are living in the thick of it, all you have time for is simply trying to survive. It's very difficult to make sense of or explain the things happening to your body, because to the average person it sounds absurd. Multiple Chemical Sensitivities is one of these absurd sounding things. I had severe MCS, to the point where absolutely nothing in the house could have fragrance or chemicals or else I would get incredibly sick. At the time I didn't have the ability to explain in-depth what MCS was, all I knew was that if anyone came around me they had to be completely free of any scent (think perfume, laundry detergent, hair products etc). So this post is dedicated to explaining what Multiple Chemical Sensitivities are, how it arises, and how it affected me (and affects others).

Lets start with the basics: What is MCS? From mcs-aware: "Multiple Chemical Sensitivity (MCS) is a chronic, physical illness affecting people of all ages and backgrounds. It causes sufferers to have allergic-type reactions to low levels of chemicals in everyday products. Put simply the immune and detoxification systems stop working properly and the body cannot process toxins efficiently." Basically the world around you becomes a very different place when you start to react to chemicals, because chemicals are present all over in every day life. When you are very ill your body can not tolerate any extra stressors or chemicals because it can not detox it out the way healthy people can. Often times mast cells and allergies play a role in this as well (see my article on mast-cells here). Either way, this is a problem that according to research from 2003 affects 12% of the US population. That's over 36.5 million people, and surely that number has risen a lot in the last 18 years.

So, the over simplified explanation is that MCS causes the body to have intense reactions to the exposure of chemicals. What happens to people who are exposed to these chemicals? Let me share what happened to me, because it is very similar to most MCS sufferers.

My symptoms/reactions:

Breathing problems
Asthma
Severe tachycardia
Dizziness
Nausea
Disorientation
Muscles locking-up
Anaphylaxis (throat closing up)
Hives/Rashes
Flushing
Fevers
Migraines
Full body tremors
Trembling
Fainting
Cold sweats

Things that triggered me:

Laundry detergent - Every single thing had to be washed in an unscented simple basic laundry detergent formula with no fabric softener or additives. Detergent was a huge trigger for me.
Any soap in the house - I'm talking hand soap, dish soap, body soap. We had to replace it all for natural soaps without any fragrance added. This went for my parents in the house too, neither of them could use any fragrant soap or else they couldn't come near me
Shampoo/Conditioner/Hair Products - All of it had to be changed to safe unscented options. No hairspray, no leave in treatments with scent. This was the most difficult because hair care products are LOADED with fragrance
Makeup/Skincare - Lotion, face wash, masks, makeup - absolutely all of this had to be changed as well for myself & my entire family. Often the chemicals in those items would also make my skin break up out in hives so I switched to all natural everything.
Nail Polish - regular nail polish is chock full of chemicals galore. I found a brand of nail polish called 100% Pure that offers "10-free" polish which is free of the 10 harmful chemicals. I found that I would not react to this, so while it had some smell if I did it in an open well ventilated place then I did not have a reaction due to the harmful chemicals being removed.
Hair Dye - This one was a huge issue for me because while I have naturally blonde hair I have always gotten highlights. Highlights and hair dye are loaded with all kinds of chemicals as evidenced by the smell. I skipped them for a while because I was just way too sick to care, but when I did try to get them it required I sit in front of a window with a full respirator mask on, and even then I would need DAYS to recover afterwards. I would do this once a year.
Candles/Room scent - this goes without saying but our home was 100% devoid of any glade plug-ins or scented candles. This was a much larger problem when I went out anywhere such as doctors offices because they would use scented carpet cleaner or room fragrance which I would react to.
Household Cleaners - We had to completely re-do how we cleaned our home because even the "unscented" items were triggering me. The chemicals in those cleaners were too much even if they didn't have a smell. We eventually landed on Norwex because that only uses water to clean with their silver infused cloths.
House Washing - Some of you may have vinyl houses and if you do then you know you need to get your house washed every year or two due to moss and build up. Well, I learned the hard way that this as a huge no-go when they came to wash our house with chlorine and I had a very severe reaction. The scent of the house-washing seeped into the entire house and I thought my heart was going to explode. We avoided it for 5 years after that incident, then when we did it next I had to sit in my car outside for 12 hours waiting for the smell to dissipate. Even then it took me 2-3 days for my nervous system to recover from the lingering chemicals in the air.
Paint - Paint, glue, varnish etc were a huge no-go. They are full of a type of chemical called "VOCs" (volatile organic compounds), and they are intense. We bought VOC-free paint for our house and could only use that.
New furniture - following up on the paint issue, new furniture also suffers from VOC issues. The glue, the dye, and various additives used on furniture make it a haven for chemicals galore. In fact, most furniture takes YEARS to "off-gas" from all the VOCs that they emit. We desperately needed a new sectional and other pieces of furniture but held off for more then 7 years because we knew my body couldn't handle that kind of toll.
New carpet - Loaded with VOCs. Usually it's in the glue for the backing or the dye. Wool carpets without any backing are the absolute best option, so we used that in many places in the house.
New anything plastic - Have you ever gotten something plastic in the mail and when you opened it the smell was just horrible? Yes, plastic often has fumes and I did not react well to that what so ever. We would have to open such items outside and leave them outside for a week or two until it was safe to bring inside the house.
Pens/Markers - yes, believe it or not, even this. Markers are notorious for omitting a harsh smell and having fumes.
Insect Repellant - huge no-go for the chemicals in it.
Anything aerosolized - the chemical used to make something aerosolized caused an instant harsh reaction. This includes hair spray & Lysol etc.
Fireworks - I'm including this only because I learned the hard way (again) that the fumes which are released from the most innocent fireworks (the kind you do at home) are a huge problem. One time the muscles in my entire body locked up and I was trembling for hours after being exposed.

The thing with MCS that I want to make clear is that it is not necessarily the smell which is the trigger, but rather the chemical which causes the smell. For example, the VOC free paint did not smell good. It smelled just like regular old paint, however it did not cause an MCS reaction because the chemicals themselves were removed. Same goes for the nail polish. It did not have the triggering chemicals so I could safely use it, even though the actual smell of it was kind of off-putting and could give me a headache just due to how harsh it was. Other times things might be completely odorless and it would still trigger me because again, it is not the smell but rather the chemical which my body revolted against. So the scent of fresh basil is okay, or the scent of pure peppermint oil is okay because these are naturally occurring substances.

How did it impact my life:

I couldn't go anywhere without needing to wear an N99 mask or I would risk having a reaction. The outside world has chemicals EVERYWHERE. People I would interact with would wear heavy perfumes, or smell like cigarettes, or smell like body lotion or shampoos etc. This doesn't include the fact that many places I went would use harsh cleaners or have air fresheners plugged in. The outside world was an exhausting place to go.
Hotels or Airbnb's were absolutely daunting - most places used household cleaners, scented detergents and scented plug-ins. Nothing was safe or tolerable, and even with calling ahead and getting accommodations it was often still not enough.
The smallest misstep of using a chemical inside the house or around me (one time it was a wasp spray) could send me into such a severe reaction I would be scrambling to find an epi-pen. It was scary, it was very serious, and it would take me days or weeks to fully recover.
I lived on Benadryl. I had to take Benadryl before any possible exposure to any small scent that would set me off. Although my house was a temple sometimes these things came in on packages, or with visitors, or even on my nurses.
Absolutely every single small thing that could have any kind of scent or perfume had to be vetted, and many items we needed we could not purchase for the home.
My parents had to be cautious who they were around if they went outside the house because they might bring home some scents to me on their clothes. Every single day was a struggle.

I had to live my life in such isolation due to MCS. Every single thing in my life had to be meticulously thought out and planned. Absolutely nothing could be done on "on a whim" without first seeing if it had any repercussions. I had to plan, medicate, and pray I would be okay anytime I left the house to go to the doctor or the hospital. I said that same prayer every day when came into contact with things which could trigger me. It was exhausting, and this was just ONE extra syndrome I had on top of my actual illness. All of the things I discussed above kept me in a state of fear and isolation. I could never fully relax. And it was like that from 2012- 2020. It was only in January 2020 that I realized how much my MCS had improved and how much more I could tolerate that I could not tolerate before.

Unfortunately there is no real cure for MCS. Often times the body itself has to get stronger or heal from the underlying illness, and then the chemical sensitivities will slowly lessen. I personally have stuck to chemical free items in my personal care and household items. Once you get used to not being assaulted by chemicals 24/7 I promise you do not want to go back to it! I certainly don't miss it, and I feel much better making clean choices for my home and body. I will probably always take care to be as natural as possible in terms of what I buy. Not only do I feel better using those products, but I don't risk adding an irritant to my environment which might create unnecessary inflammation in my body.

My threshold for what I can tolerate now has risen greatly, and it's rare that I find myself having a reaction unless it's to hair dye which is still a bit of a problem. But overall I believe that once the body can heal and get out of the fight or flight stage 24/7 then other issues will follow suite. My only one big recommendation is a Cambridge Mask N99 Mask, because that thing is an absolute life saver. It uses military grade filters and you can hardly smell anything with it on. It blocks fumes incredibly well, and while it isn't 100% it has been my best defense for combatting MCS triggers.

What Did I Try

Low Dose Allergen Immunotherapy - This is similar to an allergy shot but done at a very low dose, almost a bit like homeopathy. The idea is that less is more. You do not want to trigger yourself to flare, you only want to reprogram your immune system to accept environmental toxins in a better way. I did LDA for various indoor and outdoor irritants, but you can get very specific with things like perfume, paint, etc. It simply tells your body not to overreact when it's faced with these things. I did have some moderate success with this but did not stick with it long enough to see the long term benefits
Modulating my Mast Cell Activation Disorder - A lot of chronic illness patients have underlying issues that trigger other things such as chemical sensitivities. For myself I had something called mast cell activation disorder (MCAS). You can read more about how I got diagnosed here, but that kept my immune system on high alert for anything it deemed to be an "invader." Every small thing my body came into contact with would somehow trigger me. Getting this diagnosis and working to manage MCAS was also a helpful step because it trickled down to improving my chemical sensitivities as well.

I hope this post was informative & could help paint a picture of what life is like with Multiple Chemical Sensitivities. It's a struggle, and one that most people do silently and alone. The world often doesn't understand how those with chronic illnesses have to live, because there are so many layers to it. It's not just pain or various symptoms that we have to fight. Often times it's also co-conditions such as MCS which complicate the picture greatly and make recovery quite the up-hill battle. But I went from being incredibly sensitive to doing quite well now, so I wanted to share my story and provide some hope for anyone out there who feels stuck.

xoxo,
Christina

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Give, Risk, Live - Some 2018 Thoughts From My Drafts

12/16/2020

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I wrote this blog post in May 2018 but I never published it, until now. Sometimes I would have a stream of consciousness that poured out onto paper, but it didn't feel "good enough" to publish so I kept it as a draft. Today I want to share this 'imperfect' post, not just for myself but for anyone else who might need it. I speak a lot on this blog about having a blind faith, and mine comes from God. It doesn't mean I didn't suffer mentally with the toll of fighting an illness 24/7 for years and years on end. You'll see all of that in the post below..

It’s amazing to me how life can feel like it's simultaneously going so slow, and yet it passes by so quickly.

I saw a quote recently that said, “it never occurred to me that one day I’d wake up sick and never get better.” It stopped me in my tracks because of the poignant sadness, truth & heartbreak that it held in those words. Healthy me never could have imagined that anything would last longer than a week-long virus/flu. Growing up every illness I ever had went away with a little rest, Dayquil & some TLC. It certainly never occurred to me that one day I would wake up with a “summertime flu,” (what we now know was Lyme) and never get better. However, I want to add an addendum to the word “never.” The word never for me means right now, in this moment, as I type these words. But the word "never" has taken many forms for me throughout the course of my illness, from diagnosis to present moment.

Let's take a trip down memory lane to the time when I was diagnosed with Lyme disease. I spent approximately the next 4 months in deep denial. Although I was educating myself by reading a lot & watching the documentary ‘Under Our Skin,’ I wasn’t willing to admit that what was wrong with me might not be a quick fix. I tried to live by myself hours away from my family & continue on with everyday life. Finally I was so weak, emaciated and sick that I begrudgingly moved home in January 2012 to get full time care and begin treatment. But here’s the kicker... at that time I left 90% of my things in my apartment and only took winter clothes home with me. Why? Because I was sure I’d be all better and back to normal by summertime. I can’t tell you how DEEPLY I believed that to be true. When summer rolled around and not only was I not better but I was actually doing worse, I conceded that I might need some summer clothes (even though I never left the house). And while my sweet dad drove 3 hours each way to pick up my summer clothes which I would never wear, the rest of my stuff still stayed put. I still paid rent, I still had the majority of my belongings there, and I was stuck in denial. I think it was maybe a year after I left that I finally got the rest of my stuff out, but honestly it could have been even longer. All I know is that at some point I crossed over from “I’ll be well soon” into “wait, will I EVER be well?” This phase happened right around the time when I experienced depression for the first time in my life. Suddenly I felt this feeling of panic that my life might be forever changed, and my gut reaction was to fight back. There is a control freak in me that refuses to rest until I feel like I’ve tried everything. I went through a period of many years where I read and researched endlessly in an effort to save myself. I had plenty of Doctor’s working with me, but I had to know all the cutting edge research for myself to feel like I traveled every possible avenue.

And here I am years later with that same gut reaction, although slightly altered. I don’t want to believe, accept, or allow into my mind the thought that I won’t heal. And by heal I mean fully and deeply have my life back. Not a halfway life where my battery is always halfway empty, and one small misstep or skipped supplement sets me into a flare. But while I wish to put that thought out of my mind, it’s always lingering just out of reach of my consciousness. Some days I wake up, look around, and think “this might be as good as it’s gonna get.” And while the selfish part of my brain demands more, the rational part of my brain reminds me that it’s also been much worse. There is a war going on in my mind on any given day throwing me from sadness, to anger, to determination, and lastly, understanding.

Now what I’m about to say is going to make sense to some of you, and will seem very out there to the rest of you, but I’ve (mostly) made peace with whatever outcome I get. And that’s because I believe in a God who has a purpose for my life even when all I see and feel in the moment is suffering. I know that God can see the big picture of my entire life, and somehow in some way there is a reason for what I am going through. That reason may not be crystal clear to me now (or ever), and it might be multi-faceted. But He has a purpose for my life and I believe that to be true whether things are going good or things are going bad. I think that God uses circumstances to grow us and grow the people around us, and some of the biggest change comes from the hardest moments. So while my determined and hard working spirit refuses to believe the textbook definition of "never," I also know that if that happens to be God's will for my life then He knows better than I do. But it doesn't mean I stop trying, and it certainly doesn't mean that I will resign my life to an acceptance of a reality that I do not yet know to be true.

So as I lay here in my bed too weak to even walk down the stairs by myself, I keep fighting... for a semblance of a life. And if I get it I promise to never take it for granted. Not for a single second. Life is so short and so precious, there is no time to waste living in any other way than what is authentic to you. The world tries to make us fearful to be honest with one another or to chase our dreams. I bought into that lie for much too long, and I know I never will fall into that trap again.

I watch humans worry so much about what others think about them. I watch them withhold love from people out of fear of rejection. Why? For what? If I could give one message to anyone out there who is healthy, it's this: Love others, be bold, live in a way that takes risks. Put your heart on the line again and again, even if someone tries to convince you to lock it up. Give, risk, live. Because I promise that if it all got taken away from you right now, you'd spend a lifetime wishing you could do it over.

xoxo,
Christina

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What I Did For Postural Orthostatic Tachycardia Syndrome (POTS) - An Out Of The Box Treatment

9/27/2020

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I am assuming that if you're here reading this then you are familiar with what POTS is, so I am not going to get deep into the "what" and "how" of it in this post. However, if you'd like to know more I would suggest reading about it here.

POTS was one of the first conditions I was ever diagnosed with before I knew I had Lyme. POTS stands for Postural Orthostatic Tachycardia Syndrome. This is a syndrome, meaning it is more like a collection of symptoms vs an actual disease with a treatment plan. Basically, it is a thing that is happening to your body, but you must find the root cause of why it's happening. POTS is merely a clue, but it's not the whole answer.

However, back when I was diagnosed in 2010 it did greatly benefit me to know I had POTS because I was able to get on medication (Midodrine), drink a lot more water, and purchase prescription compression stockings. All of those things made my life more bearable at the time and prevented me from passing out every time I stood up, or fainting due to a high heart rate when I was vertical. The trouble was, those things were merely a band-aid. As the years went on and I became more ill with Lyme disease, the symptoms of POTS got louder and louder. By the time I had moved home for treatment I had a heart rate of 140+ from merely standing in one spot.

In 2012 I became completely bed-bound and had to stop taking Midodrine because you are only able to take that if you are up and active. This left me with only compression stockings and fluids to help propel me anytime I needed to stand. And truthfully those were of very little help in the big scheme of things. I would drink endless amounts of Vega Electrolytes and water, salt everything to oblivion, and yet I still found myself chronically dehydrated with very low blood pressure. For many years this continued on, but the issue of POTS went onto the back burner because 1. I had more severe issues to handle/deal with, and 2. I hoped that treating the Lyme would fix everything. I now know that the dysfunction the Lyme caused on my autonomic nervous system couldn't be reversed as quickly and easily as I thought by just killing the bacteria, and I would need to go back and repair the damage it left behind. But, more on that later!

The thing about POTS which a lot of people don't quite realize is that it can be much more severe than just feeling lightheaded when you stand. When your heart is not able to adequately pump blood upwards the consequences are far reaching. For example, if I were to eat something and then I would go sit on a couch where my legs weren't elevated I would get awful stomach aches and have trouble digesting my food. Why? Because my body couldn't get as much needed blood to my stomach and thus digestion suffered, and thus I had horrendous stomach aches. Other times, the pure fatigue caused by my heart working overtime to keep me halfway upright sitting on the couch was too much to bear. Yes, you heard me right... I would get exhausted just by sitting on the couch, and it took huge effort.

So, what did POTS look like for me? I had:
1. Fatigue
2. Nausea/Digestion issues
3. Low blood volume
4. Low blood pressure
5. Chronic dehydration
6. Heart palpitations
7. Lightheadedness & dizziness
8. Headaches/migraines
9. Exercise intolerance
10. Fainting when standing
11. Cold hands and feet
12. Shortness of breath
13. Purple/spotted legs when standing

I'm sure I'm forgetting something, but as you can see POTS was far reaching. Sometimes it would get triggered just from sitting up in my bed (when it was at its most severe state), other times it would get triggered from things like sitting on a couch, attempting to take a walk, or simply standing. My sympathetic/parasympathetic nervous system was an absolute mess, and it did a poor job of controlling my autonomic nervous system to work how it should. Most people don't think twice about standing up because they know their heart will do what's needed to keep them upright. For those with POTS the task of simply standing in one spot is often met with promptly fainting.

I had tried many treatments throughout the years, including being enrolled in a clinical trial in 2011. A wonderful Doctor at the University of Kentucky Cardiology Clinic told me about a trial being done on POTS patients which would require me to do specific strength exercises which kept my heart-rate in a certain range for specific amounts of time. Ultimately I did not get to finish the trial because when I went to a physical therapy clinic to help me do the program (it must be supervised due to risk of injury), I was turned away due to not looking "sick enough" for them to help me. I then tried to take the program to a personal trainer, but that went horribly and I had to bow out. The premise of the clinical trial however was to focus on strengthening the leg muscles so that they can more efficiently pump blood up to the heart. Seems easy enough, right? Wrong. The tricky part of exercising with POTS is that all exercises must be done recumbent or in the water (zero gravity), otherwise it could make things worse. So while strengthening the legs is key, it must be done in a lying down position, and the heart rate must be carefully watched so it doesn't backfire. While I wasn't able to finish the clinical trial myself I did reach out to my Doctor later on to get the results of it. It showed that a huge percentage of patients saw their quality of life improve and symptoms decrease by the end of their program. This always stayed with me because I knew the key would lie in circulation within the legs, and I tucked away that piece of information.

What Helped The Most

1. Discovering ORS drinks
I'm going to get into how I stumbled upon an accidental treatment, but let me first lay the ground work here by discussing two other key details to improvement. Hydration is absolutely crucial here, and will likely continue to be crucial for anyone with POTS no matter what. But what you need to know is that all electrolyte drinks are not made the same. I urge you to read this in-depth blog post I wrote about hydration and what it means to be volume depleted. Most electrolytes on the market today (many of which are sugar free) are doing almost nothing for you. When you have POTS you need to raise your blood volume and you need the sodium to get into your cells. They make a kind of drink called "Oral Rehydration Solutions" and this is used in third world countries where access to IVs are non-existant. These drinks work as well as IV fluids, but you need to get the right kind. My blog post is explains this in much more specific terms than I have room for in this post. So if you haven't yet, please go read.

Let me just say that prior to discovering ORS drinks I could not go even 1 month without needing to have an IV line placed. And when I got IV ports placed I had it in for 4-5 days and received around the clock fluids, lactated ringers, and electrolytes. I felt my best after I had the IVs, and I did my absolute best to keep up with hydration myself so I wouldn't need it again. But no matter how hard I tried I couldn't do it, and inevitably I would be back to needing another IV within a few weeks. However, since finding ORS drinks and drinking them religiously every single day I have not needed an IV placed for hydration in ONE YEAR. That is huge for me! Especially because I have Crohn's disease as well, and that by itself can lead to massive fluid loss. In the past a Crohn's flare would immediately land me in bed with an IV no matter what. Now a days I can sail straight through a flare with ORS drinks, and having a flare doesn't mess with or worsen my POTS. I recommend either Ceralyte 70 or Hydrant ORS drinks, as they are the very best.

2. Recumbent leg exercises
I touched on this briefly above, but I used to do things like bicycle kicks while I laid in bed. Of course, when I was very ill I was unable to do it, so this only came into the picture later on down the line when I had the ability to do so. This is not a requirement, but I wanted to mention it in case anyone else out there finds themselves bed-bound and wondering if they can do anything to strength their legs. I would do sets of 10 bicycle kicks while lying flat, and I started off by doing just 10 every other day. I worked my way up to doing 3 sets of 10 every day. Then 3 sets of 10 twice a day. I would also vary it by sometimes swinging/kicking my legs out of the side instead. I have no way of telling if this actually helped with the POTS, but I do know it helped combat muscle wasting and atrophy that I had from being bed-bound for so long. If anything it stopped the progression of muscle weakness and built back up what was lost from being unable to move for such a long period of time.

Accidental Treatment

I know that most of you are here for the good stuff, so I promise I won't leave you in suspense much longer! I will quickly just give you a backstory on how I got to this place. So, it was late 2018 and I began dealing with severe restless leg syndrome. When I say severe I mean that the crawling/jerking feeling was so intense that I would spend all day shaking my legs around, and it even spread up into my thighs and arms. I could barely sleep, I could hardly function, it was so uncomfortable that it felt almost painful. I had a non-stop buzzing sensation in my feet & calves that would drive me insane. It felt like an itch you can't scratch that went deep into my muscles. I wanted to claw my skin off, and I spent so much time aggressively massaging my calves that I had bruises all up and down everywhere.

I tried everything imaginable for the RLS. I even bought this machine that would squeeze my calves so hard that my legs almost went numb because that felt better than the deep itch from RLS. It gave me moderate relief when on but nothing sustainable. I bought this other contraption called Restiffic which put pressure onto certain spots on the ball of the foot, and that could take it down a single notch, but again, not sustainable. I did foot baths, I used essential oil rubs, I used weighted blankets, and I tried every supplement known to man for RLS as well. You name it, I did it. I was a desperate person living on 4 hours of sleep a night, and this went on from September of 2018 until I found my accidental treatment around January of 2019.

My poor bruised legs

A collection of things I tried

Leg squeezing contraption

When I tell you that I was exhausted and desperate for relief you have no idea how much I mean that. I would have tried anything on planet earth. This is when my mom stumbled upon a study for RLS which showed that using near infrared light therapy helped ease RLS in a large number of patients. This had to do with how it helped micro-circulation in a way that no other treatment could. Immediately I knew I had to try this because all the other avenues had failed me so I began to research. The study itself had patients do three 30-minute treatments on their lower calves per week, for 4 weeks. This meant I would need something which could provide continuous near-infrared light to my calves. I went on the hunt and realized this was going to be much tougher than I thought because all the devices I found were medical grade. Therefore they were 1. Very expensive, and 2. Could only be purchased by a physician. It turns out that these devices are usually bought and used in a clinical setting where patients come in to use it X amount of times per week, much like infrared saunas or ionic foot baths. I found myself in a bit of a predicament living in a small town without access to anything of the sort. However I was determined, so after consulting with my Doctor who would oversee the treatment we decided to invest in a HealthLight system and do it at home. This was not cheap, and in most cases you could just go to a clinic nearby to get this treatment done. But for the situation I was in at the time it was really my only option. In all honesty I'm glad I own it because I did need it for much longer than the 4 weeks due to the fact that it ended up being hugely useful for the POTS. You can actually buy it online now, if you're interested the link is here (I get zero commission).

So now it's January of 2019 and I finally got my hands on a HealthLight system. As you can see it's basically worn like a boot which curves up and around your calves. You simply hit "start" and let it do its thing. I did it every other day for 4 weeks initially, and it did in fact help with the RLS. I would do it when the RLS symptoms were the worst because the heat and infrared lights felt incredibly soothing to my calves. I kept it up after the 4 week mark because it was working, and while I had made some headway I still had a long way to go. I did another 12 weeks still doing it every other day, and it made an even more marked improvement on RLS symptoms. But do you know what else I realized? It inadvertently helped the POTS as well! My legs weren't as purple when I was standing, my heart rate wasn't through the roof when I was just standing so I was able to cook and bake in the kitchen for longer periods of times, and I wasn't nearly as lightheaded when I stood up. On top of that things like my digestion improved when I was seated, and I didn't feel nearly as tired from being out of bed in general. I was honestly shocked because that was not the intended purpose of the light therapy, but it was unbelievably useful.

Near Infrared Light Therapy

Near infrared lights work for patients with RLS because it affects the micro-circulation within the legs. If I had to guess I'd say it was also incredibly useful for my POTS for a similar reason. I do not have any kind of scientific information on this, although I wish I did. I couldn't find any kind of published info on using HealthLight for POTS or near-infrared light therapy for POTS. I did find some info via study on how NIR light stimulated the release of an endothelium dependent vasodilator and rescues vascular dysfunction in some patients. I found another research paper discussing how NIR helps microcirculation as well, but again not targeted to POTS.

All I can tell you is that during that time I did absolutely nothing else new other than the HealthLight system. That's it. I didn't even discover the ORS drinks until June-ish, but adding that into the mix made my improvement skyrocket. After the first 16 weeks of using it every other day I went down to 1-2x a week and kept up with that for several months. Since then I would say my POTS symptoms are only about 25% of what they used to be, and I attribute that to the HealthLight and the ORS together in tandem.

The results are sustainable, but I'm unsure yet if they are permanent. I stopped using it around late July 2019 and still felt like the results of it were kept much the same. I used it again around the end of October at 3x a week for another month when I felt some more racing heart/fatigue pop up and it nipped that in the bud. Since then I will pulse it in here and there even if I feel okay just to keep up progress. It certainly can't hurt, and I own it so why not?

Since I don't know the science behind it I don't know exactly how often/how long a patient would need to use this for it to make a difference in their POTS. However, if you have a Doctor who is willing to oblige you, and you've tried everything else to no avail, then I would highly recommend it at 3-4 times a week for at least 20 minutes. If you could commit to 12 weeks that would give you enough time to see if it will make a difference for you. I believe that you can email HealthLight directly to ask them for a referral or directory of providers who use their system if you wanted to find someone that way. Oh, and definitely get your hands on some ORS solution in tandem!

This light therapy system popped up unexpectedly in my life and made such a massive difference for my symptoms that sometimes I'm still shocked that more research isn't being done on it. I want to be clear again that during that time I was doing no other treatment for POTS, I wasn't taking any new supplements, and nothing else changed. AND the results were sustained and also improved further when I added in the ORS along with it. Since circulation is such a huge part of POTS I suspect that by improving the microcirculation within the legs it allows the blood to pump/flow better.

Okay, shew this was long! I hope that this information could be useful to someone else in need. I apologize for the length, but I always like to be thorough. If you have any questions please leave them below and I will get back to you. Alternatively you can also email me at cskova01@ladyoflyme.com if you want to speak more directly.

xoxo,
Christina

17 Comments

Keep Going.

7/14/2020

15 Comments

I can't tell you how often I look around now and think to myself, "thank God I didn't give up, thank God I kept going." Many times it felt downright impossible. Many times I was past the point of exhaustion, and way past the point of countless disappointments. I couldn't take another letdown, another flare, another loss. The pain was too much, the trauma was overwhelming. In those moments the thought of a life lived without level 10 pain seemed as real as a fairytale. It's taken 8 long and arduous years for me to get to this point where I look back on the hell that I endured and feel a sense of gratitude that I survived.

All of this is to say if you're reading this right now and you are in the trenches of darkness, keep going. You might be in the middle of the longest and darkest tunnel without an end in sight. Keep going. You might feel like you've given years of your life to fighting and it can't possibly improve. Keep going. I spent the greater part of 8 years completely bed-bound, often too weak to wash my own hair or even chew food. I thought this disease would surely kill me by slowly sucking the life out of me year by year. I know how never-ending things can feel, and how very real that sensation of despair is. Trust me when I tell you that I wanted a way out many times, and only now am I eternally grateful I didn't get it. You will prevail, you will overcome. Don't let this darkness squash your hope or dim the light on your dreams. Keep taking each step, one by one, no matter how small.

Please hear me... there is a way through. Keep going.

xoxo,
Christina

15 Comments

Why Can Sun Exposure Make You Feel So Terrible?

6/1/2020

12 Comments

If you find yourself feeling drained, feverish, or down-right sick after spending any amount of time in the sun, this post will help shed some light on why that occurs. It's not as easy as saying it's just the heat, because the core issue with sun exposure goes much deeper. While this can happen to anyone, I'm going to be focusing more so on why those with chronic illnesses seem to have trouble with the sun/UV rays.

There are so many "strange" things that come along with chronic illnesses. I say strange, because they are things you wouldn't think apply to the issue at hand, but somehow they do. One of those things is a sensitivity to the sun, or a sun/heat intolerance, which I often see in Lyme patients. I myself have always been someone who loves spending time in the sun, and prior to being diagnosed I had a very tough time at the beach on family vacations. I would spend minimal time in the sun, but every time I did (even if it wasn't even that hot), I had flu-like symptoms hit afterwards. It didn't seem to matter if I spent all my time in the pool never feeling hot at all, the after effects of the sun would be there for the rest of the day irregardless of how I tried to mitigate the heat aspect. This was all prior to being diagnosed, and during a time when I was still able to function relatively normally.

As you can imagine, the sicker I got the lower my tolerance became to the sun. At first I tried to bypass the issue by only getting sun exposure on cool days. But even then the issues arose. I could go outside on a day when it was 55 degrees but the UV index was 8, and even if I spent even 15 minutes outside shivering I would still go inside and develop all the classic flu like symptoms. Basically, this happened devoid of all heat. Heat, or my body overheating, was not the culprit and I knew it. In fact, my hypothesis was further proven when I tried to get my necessary sun exposure via a UV light lamp. I diligently used UV lights, and do you know what happened? Over the course of months I diligently used the UV lights (meant for tanning), and I never got a tan no matter what I did. But the one thing that always happened was the presence of flu-like symptoms.

I started reading about nutritional deficiencies or other things which would prevent someone's skin from tanning. It was the most bizarre thing I had ever experienced in my life, and I knew it tied into my issues with the sun somehow. As the months and years passed I kept pushing myself to try and spend time in the sun because my Vitamin D levels were abysmal. I couldn't raise them with oral supplementation, and it was becoming a big problem in terms of my treatment. I needed optimal Vitamin D levels to have success with the immunotherapy I was doing. So I soldiered through many days of sun exposure, and even with natural sunlight I could still only burn and never tan. And yes, I always felt miserable afterwards.

Well, after years of this madness I finally got some answers! I want to preface this by saying that if you have heat intolerance then just know that this is an entirely different thing. It's also not a sun allergy, so if you have a proper sun allergy then it's also an entirely different thing from that.

So what's happening?

First, let's talk about what cytokines are. If you've been keeping up with the Covid-19 news, you have likely heard of cytokine storms. Many of the sickest Covid-19 patients have high levels of cytokines in their blood, and they tend to massively peak in the evenings, often causing a sudden crash due to a surge of cytokines in what's known as a cytokine storm. Cytokine storms are incredibly dangerous and often fatal. Now, the thing here is that cytokines in and of themselves are good. They are compounds which activate immune cells, and they do good work in small amounts. The trouble arises when they go haywire and start to overproduce. You see this on a smaller scale in autoimmune conditions, where the immune cells are abundant and misfiring so they begin to attack the body. Crohn's is a great example, because in that the immune system becomes over activated and starts to attack the lining of the colon. The same happens with Hashimoto's which attacks the thyroid, and RA which attacks the joints.

Cytokines are great in small doses and where they are needed. But, cytokines also equal inflammation. From WebMD, "A cytokine is a signaling molecule that is secreted from immune cells and certain other cell types that promotes inflammation. Inflammatory cytokines are predominantly produced by T helper cells (Th) and macrophages and involved in the up regulation of inflammatory reactions." Basically, the very mechanism of cytokines comes along with massive inflammation. This is why cytokine storms are so dangerous and can prove to be fatal when they get started. The amount of inflammation that they create is far too much for the body to handle.

Now, going back to the sun. As beautiful as a tan looks it is actually a response to damage being done to the skin. When you go out into the sun your body forms thymine dimers, which damage the DNA in your skin cells. This damage is what can lead to skin cancer if it goes unchecked, but in most cases your body is able to repair the damage itself. When the UV rays hit your skin it triggers cells to create melanocytes to produce melanin. Melanin is the brown pigment which creates the look of a tan, and it is the body's way of protecting the skin from burning/further damage. Basically, the UV rays damage the DNA in your skin cells, therefore your skin is actively making melanin to prevent further damage from occurring.

So, how does the skin repair the damage to the DNA that happened in the first place? It does so by releasing cytokines en masse to start the repair process by telling other cells it's damaged. Basically the cytokines (inflammatory compounds) are released and begin calling on helper cells to come fix the damage that's been done. Now imagine this process happening all over your body which was exposed to the sun. The flood of cytokines is what makes most regular people feel so tired after sun exposure, but for someone with an underlying chronic illness it is much more severe.

You see, on a day to day basis most Lyme patients (and other chronic illness patients) are already dealing with too much inflammation in their body. The mass amounts of inflammation already present on a day to day basis is higher than it should be, and it sets the threshold for extra inflammation quite low. I'll use myself as an example. Although Lyme disease is the main component, it led to several autoimmune conditions as well as mast cell issues. Both of these can come with added inflammation which is a battle to bring down on a daily basis. For myself, and others in a similar situation, it is very easy to set off a cytokine reaction that goes haywire. If I eat a food which I have an intolerance to my body creates so many mast cells and inflammatory agents that I will not only have a stomach ache, but I will also have a migraine and a fever. This is because the inflammatory process in my body has a quick trigger, and a small push can create huge body wide problems. I cover this in length in another post here, but when you already have underlying inflammation issues the threshold to push it over the top is very low. With these patients, when the body calls for cytokines it can't just send a few, it has to send a whole army. It's a bit like barely putting your foot on the gas pedal but being shot out at 100mph.

This is much the same with the sun exposure. The DNA damage calls for cytokines to repair it, but 1. too many cytokines get released at once, and 2. It adds to the burden of inflammation already present, and together this can push it over the edge. And what are some symptoms of body-wide inflammation in the body from too many circulating cytokines? You guessed it, it's pretty similar to how you feel during a flu. Aches, chills, malaise, fatigue, headaches, loss of appetite, fever, etc. In fact, once I learned about this I tried taking Advil (an anti-inflammatory) after sun exposure, and it did actually mitigate the symptoms some.

This is why it's the sun exposure itself, and not the heat, which can cause problems for patients with underlying chronic illnesses. The sun exposure, which in turn creates DNA damage is to blame for the influx of symptoms from UV rays. While it's fair to say that heat intolerance may play a role in some instances and may add to the problems overall, it isn't the main underlying issue if you have problems with the sun specifically.

Some of you may be wondering if I ever figured out why I could only burn (and not tan) from the UV rays. Short answer: not really. It seems like there was some kind of deficiency which was preventing my body from making melanin, and instead I just burned. A burn is simply inflammation, and once the inflammation itself went away I was left with non-tanned skin underneath. As I have gotten better this has improved for me. I tolerate the sun much better now, and I am able to tan. I don't know exactly which specific deficiency caused it, and I wish I knew. But my ability to produce melanin did correlate with how sick I was, so that's pretty interesting to me.

I hope this blog post has been informative to someone out there. I know that being out in the sun is difficult for many patients due to the heat aspect. But sometimes even in the spring or fall time when there isn't as much heat there can still be issues for many people. This should hopefully explain why that's occurring, and bring some clarity surrounding the issue.

xoxo,
Christina

12 Comments

When Parody Becomes Reality

4/17/2020

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I think I was in the 6th grade when The Truman Show came out, and as an adult I sometimes still stop and ask myself if perhaps I am living in my very own version of the Truman Show. Of course I know that life is often just comical in its timing, but I have my moments where I throw my hands up and yell, "come on!"

We're living in a time where parody is becoming increasingly difficult to distinguish from reality. If I created a quiz with half made up headlines and half real headlines and asked you to pick out which is which, I bet most of you would fail. And I'll tell you what... I did not imagine that after everything I've survived and fought through that at somehow I would be sitting here in 2020 fearful that a rouge virus from halfway across the world might be my demise. Truly, I find this current turn of events to be utterly baffling. If this blog post seems like I'm writing it while I'm a bit frazzled then good, because I hope my tone is coming through via my words. Even though its been weeks since this new normal has descended onto the world, I have yet to wrap my mind around how nuts it all is. I cycle between feeling 1 of 100 different emotions on a daily basis, but they all circle back around to disbelief.

I think I share my sentiments with many of you who are reading this now. If you have any kind of chronic illness then you've likely lost a lot over the years: time, friendships, jobs, opportunities, etc. You've likely also had to fight through grueling treatments, isolation, and countless sleepless nights battling pain. Lord knows I have been through the depths of hell over the years, and the one thing that always kept me going was hope of a renewed life. Otherwise, why do we do it? We get up each day and face the hardships because we think perhaps this will be the day that things turn around and we can get back pieces of what we lost.

And I'll be honest, I'm the kind of person who always plays through various worst case scenarios in my brain because I like to be prepared. 99.9% of the time the worst case never happens, but at least I feel ready for whatever curveball life might throw my way. Trust me, I have thought about every nightmare situation that could pop up and derail my path to success. I've thought about what life might be like under a million random circumstances. However, the one thing I most certainly did not plan for was a global pandemic with a highly virulent virus that plays Russian Roulette with its victims. When I hear about even healthy robust adults who are dropping like flies (and no one knows why) it sends a chill down my spine. I'm no fan of viruses, but I am significantly less of a fan of unpredictable viruses with no known cure.

I want to bring my sarcasm back around to some seriousness here. For most healthy Americans there is a light at the end of the tunnel. In the coming months the economy will open back up, and life will slowly resume again. But for those of us who are high risk, we are put on pause. Until... until when? Until a vaccine is developed in 2021? But who knows if it will even be safe for those who are much more susceptible to serious side-effects from vaccines. Okay, so then until a treatment is proven to be safe and effective for all, and enough doses are manufactured to be a viable option? And what happens until then, we stay locked in our homes living in fear of touching anything from the outside? Not to mention some people will lose their jobs because they can’t go in to the office safely. The only other option is to risk it and go back out into the world, but then we would quite literally be flipping a coin on our lives. I bet even a year ago a headline describing this very scenario would have been deemed parody, but yet here we are. It's a situation straight out of a poorly written movie script, but we're living it in real time.

If you can't tell, I'm frustrated. I'm frustrated because I can't believe I am in this position where I fought endlessly for the very life I have today, but all of it is hanging in the balance due to a mysterious virus we barely understand. No one can agree upon where it originated from, how it might mutate, how to treat it, do ventilators help or hurt, do certain drugs help or hurt, do genetics play a role, etc, etc ad nauseam.

I'm going to end this by saying that if you feel incredibly frustrated by the lack of answers for those of us with preexisting conditions then you're not alone. The very things most of us need to manage our illnesses such as blood work, scans, tests, nurses, home health, etc. are also the things which put us the most at risk. Walking into a hospital for any of the above or even having a nurse come to our home (after they have been in other patients homes), is terrifying. So many people will go without care, or tests, or answers, and that will stay paused for a length of time that is unknown. Many people will get sicker, have flares, and be left self managing their own care. This will go on until it's unsustainable, and at that point it becomes a high risk game of "do I try to stick it out, or do I go to the hospital and chance it?" Unsurprisingly, neither of those options sound particularly appealing to me.

I know this post has been sassier than usual, but my patience has run clear out. Whatever well I had used prior to sustain my level headed calm has been sucked bone dry, and now I'm just alternating between feeling mad and complete denial. The best part of my day is the first 2 minutes after I wake up when I'm not quite alert enough to remember the pandemic going on. Ahh yes, those sweet sweet 2 minutes of blissful naivety, how I cherish them so.

But let's end on a more hopeful note, shall we? When I'm feeling exceptionally bummed out I like to remind myself that just like this virus took us by surprise and upended all of our lives, it's also possible that it exits the same way. There could be an extremely successful treatment for everyone just around the corner that will stop this nightmare in its tracks. And that my friends is how I manage to sleep at night. I remind myself that in February I was living my day to day life blissfully unaware of what was to come in March or April. And so now I try to live blissfully aware of what might be in the pipeline this summer. Fingers and toes crossed. Until then...

xoxo,
Christina

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This Is What Long Term Birth Control REALLY Does To Your Body..

11/4/2019

3 Comments

If you read my last update post about my Thyroid issues you probably heard me briefly discuss how I recently got off of my hormonal birth control. I was using the Xulane (previously Ortho Evra) patch for 11 years at the time when I stopped it cold turkey. I was initially put on birth control during the period of time when I was not yet diagnosed with Lyme but I was very symptomatic. I was in college full time and working 20 hours a week and was I having horrible periods that made me miss school and work every single month. I had so much on my plate at that time that I needed a quick fix. I couldn't handle periods from hell on top of everything else I had going on, so I was put on birth control. I first tried oral birth control but my stomach was not having it, so I went with the patch. It helped tremendously and made my quality of life a lot better... at first.

When I started birth control I went into it thinking it would be a short term thing. Breast cancer runs in my family and estrogen based birth control increases that risk big time, so I was very aware of the need for this to be a temporary solution. What I didn't know at that time though was that my health would continue to decline and I would need the stability of birth control long term. That's exactly how I got to the place where 11 years later I was still on the patch. I always had so many chaotic things going on with my health that I felt like I was barely keeping my head above water. I wasn't prepared then to go through the transition off of birth control (more on that later), and I definitely wasn't prepared physically to go back to those old torturous periods of years past.

So, what changed? Well, throughout the years I was in my many situations with Doctors who told me that many of my problems wouldn't be able to be fixed until I'm off of birth control. And that's because birth control does so much more to the body than women are led to believe. For starters, a lot of people don't realize that birth control works by tricking your body into thinking it's pregnant. Now imagine that you are on it for years, that's years that your body is stuck thinking it's pregnant. Why is that a problem? Because when the body thinks it is pregnant it uses up and depletes certain minerals, vitamins and nutrients to critical levels. Think about prenatal vitamins and why they are important for women to take during pregnancy. Furthermore, the body is not made to be stuck in a state of false pregnancy, and thats where you run into issues with something called Estrogen Dominance. This happens when the hormonal ratio of Estrogen is off balance in proportion to Progesterone, and it comes with a whole slew of health problems. You already know that birth control comes with the inherent risk of breast cancer due to the large amounts of estrogen it puts into the body; but when it's done long term it can create complete havoc. Not to mention, estrogen is hard to detox from the body and gets stored in fat. So the excess of it doesn't just get magically removed from your body each month. It builds up.

Here's a sampling of symptoms/issues that Estrogen Dominance causes:

Uterine Fibroids
Endometriosis
Allergies
Fatigue
Fibrocystic breasts
Infertility
Irritability
Breast cancer
Uterine cancer
Ovarian cancer
Cervical Dysplasia
Thyroid dysfunction
PMS/PMDD
Ovarian cysts
Autoimmune Disorders
Increased blood clotting
Acceleration of aging

So, as you can see, not a great list. Estrogen Dominance was just one of the issues I was dealing with due to long term birth control. On top of that I had a lot of really troublesome thyroid issues that were unable to be resolved, and I talk more in depth about it here. Tied into that were vitamin deficiencies that I could not fix no matter how much I tried to supplement. I was dangerously low in zinc, ferritin, magnesium and some B-vitamins, and all of those get robbed by birth control. Therefore no matter how much I was trying to replenish my body with those nutrients they got used up instantaneously and I stayed stuck in the red. Ferritin and zinc are also critical nutrients for the thyroid to function properly so it was a vicious cycle. I tried to fix my thyroid in so many other ways, but nothing ever worked and I was being thrown back and forth between Hypothyroid and Hyperthyroid symptoms. It became abundantly obvious that if I didn't get off of birth control I would never be able to properly fix my chronically low Ferritin, Zinc, B-vitamins, magnesium and more. I saw chronically low because these levels have been rock bottom for years.

As if that wasn't enough I also learned a really sobering statistic about birth control while reading a study. It has a high correlation for causing Crohn's disease. You know, the fun disease I was diagnosed with a little over 2 years ago... neat. The study says, "Estrogen based contraceptives have been associated with an increased risk of Crohn's disease since the 1970's." No one knows exactly why contraceptives trigger IBD's but researchers think its due to an out of whack immune system, increased leaky gut, and imbalanced gut bacteria, all of which happen because of birth control. That would have been fantastic information to have had before I was put on birth control, but these are the pieces of information that women aren't being given. Progesterone only birth control does not have the same risk of causing Crohn's disease, nor does it come with the risks of deep vein thrombosis or increased breast cancer. Yet, this was never presented to me as an option. There is a culture of just throwing birth control at women for every single ailment without looking into if its a good fit or what kind of long term problems it can cause.

Circling back to some points I made above, I mentioned that birth control completely wreaks havoc on gut bacteria and leads to leaky gut. On top of that it can also cause SIBO, and chronic Candida problems. That's all because birth control inherently messes with gut bacteria, and gut bacteria not being in check is the root cause of all the other issues listed above. Several studies discuss this, and they have found that for whatever reason hormonal birth control just naturally depletes the good bacteria needed to have balanced homeostasis. This also would have been fantastic information to have before starting birth control considering I have had chronic stomach problems even prior to developing Crohn's disease. Many women battle candida that is persistent and resistant to treatment, or long standing SIBO and leaky gut that won't resolve properly only to later find out it was all tied to their birth control. It's unavoidable that birth control will affect your gut health, and it played a role fro me in years and years of trying and failing to properly solve a lot of my G.I issues.

So, to recap: I was on birth control for 11 years, I had many nutritional deficiencies because of it, I had serious thyroid trouble that was not resolving because of it, it contributed to my long term G.I issues, and I had developed estrogen dominance which was causing a whole host of symptoms and imbalances in my body. Oh, and it may have led to developing Crohn's disease.

What now? Well, most of you would say, "Why don't you just stop it then?" The thing is, I had been trying to come off of my birth control for almost a year before I finally stopped, and I was discussing stopping it at least 2 years before that. The reason I couldn't do it sooner, even when I desperately wanted to, is because stopping long term birth control is a struggle on the body. I don't just mean a minor inconvenience either, I mean it causes full on chaos. If you google "coming off of long term birth control" you will find article after article from otherwise healthy individuals describing what kind of hell they went through. The body suddenly has to fend for itself after having hormones regulated for years on end. This is called "Post Birth Control Syndrome" and it lasts 4-6 months. Here's a sampling of symptoms:

Amenorrhea (loss of menstruation)
Heavy, painful periods
Acne, cystic acne, rosacea
Migraines
Hair loss
Depression
Blood sugar dysregulation
Anxiety
Depression
Mood Swings
Leaky gut
Gut dysbiosis
Inflammation and other immune imbalances
Hair Loss
Nausea & vomiting
Rebound symptoms

If you're wondering, yes, this is a case of "you're damned if you do, you're damned if you don't." I'm well aware that those symptoms sound awfully similar to that of Estrogen Dominance. This is exactly why I am writing this blog, because very little information is given to women about what happens to their body when they are given birth control long term. And even less information is given about how hard it can be to then stop. I made the mistake of trying to prepare myself by reading blog posts and articles of what other women went through when they stopped their birth control. I read stories about women who had months of heavy bleeding and cramps that were so bad they missed weeks of work, or migraines that completely put them out of commission. Then in the end many of them couldn't take it any longer and they went back on birth control to make it stop. Mind you, these stories are coming from otherwise healthy women, not women who have an underlying chronic illness.

Because of my chronic illnesses my body already doesn't handle any kind of minor hormonal shifts well at all. My body is so unbelievably sensitive to hormonal changes that in the past if I changed my birth control patch even 12 hours late it would create hormonal problems most people wouldn't feel, but I would get days of migraines, severe nausea, loss of appetite and a mast cell flare up. Any kind of hormonal shift in my body would be so much more intense than a normal healthy person, and therefore I had the fear of God put into me after reading various blog posts.

This is why it took me so long to take the plunge. I needed to be stable enough to handle the 4-6 months of possible chaos that would come. In fact, I first tried a method where every 2-3 months I would cut off a small sliver of my patch in order to slowly wean me off. This was a horrible idea, and I do not recommend it. Every time I cut off a small piece the hormonal changes took me 2-3 months to adjust to, and each time it was awful. Also, once I got to about 60% of my patch being cut off I was creating more problems for myself with breakthrough bleeding, sore breasts, and non stop PMS symptoms. I finally got the courage to stop once and for all, and that was in early July of 2019.

In order to keep this post from being too long I'm going to end this here. In the next post (coming in a few days) I will detail in depth what happened when I stopped birth control cold turkey, and where I'm at now in November 2019. Don't worry it's won't be a terrifying post like the one I read prior. I learned a ton along the way, and I have a lot of tips to share on how to make the transition as smooth as possible.

As a closing thought I want to add that I understand why some women need to stay on birth control long term. Many women have endometriosis or PCOS that makes it imperative. Other women might be like me and are stuck on birth control because they aren't stable enough health wise to come off of it. There is 0 shame in that, and I'm not trying to change anyones mind about birth control in general. I just wanted to share the info that I was never given but wish I had. I want to share my story in case someone else is in the same boat and needs a life raft to safely get off. I've been through it, I understand, and I want to help.

Until next time,
Christina

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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.

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.

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.

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.

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

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Health Update: Let's Talk Thyroid Hormones and Testing

Thyroid Testing... What's Changed?

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