A Lyme Disease Blog Sharing Support & Awareness

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

1/22/2021

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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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

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

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Detox Guide: ALL The Best Detox Methods Ranked (Most Gentle to Least Gentle)

7/25/2019

22 Comments

Detox Guide: ALL The Best Detox Methods Ranked (Most Gentle to Least Gentle)

There's one thing that goes hand in hand with Lyme Disease, and that's Detox. Detoxing while you are treating Lyme Disease is crucial, and it's necessary if you are in any stage of treatment.

For those of you who might be new to Lyme, let me explain a bit more. Lyme Disease is caused by the Borrelia Burgdorferi bacteria, which is a corkscrew shaped bacteria that has a habit of burrowing its way deep into the tissues of the body. When you begin to kill this bacteria with antibiotics of any sort it releases toxins as it dies. This is a strange analogy, but if you've ever encountered a stink bug you'll know that when you kill them they release an awful odor. This bacteria is much the same, but when it dies it releases a cloud of toxins into the blood stream and surrounding tissues. Your liver, kidney & lymphatic system work really hard to get these toxins out of your system, but there is often an overload of toxins which can't be cleared fast enough on its own. So what ends up happening is that these toxins build up, stick around in your body, and start to cause some pretty terrible symptoms. This is called a herxheimer reaction, and it typically feels like an extreme flare up of your symptoms or like you have a really really terrible flu. Herxheimers have landed people in the ER, and can get very severe, so detoxing is of the utmost importance.

A herxheimer is normal and par for the course of Lyme Disease treatment, because no matter how careful you are the bacteria inevitably release more toxins than your body can naturally clear. It's one of the unavoidable parts of Lyme treatment, but in a way it's good because you know that your treatment is working. Pretty much every Doctor who treats this disease tells their patients, "it will get worse before it gets better," and that can't possible be more true.

I am often asked for suggestions on detox methods: which ones are the best, which ones are the most gentle, and which ones are my favorite. So today I thought I would do a round-up of the best detox methods I have found, along with step by step info on how to use them all. Through the course of my Lyme journey I have used a ton of methods, and I've pretty much tried it all.

I'm going to group these methods into categories, and also give it a rating from Low-High on how gentle it is. Some methods are very gentle and others are more hardcore (for more intense detox). Every body is different, and at my most fragile I only tolerated very gentle detox methods. So, you know your body best and will be able to pick which feels right for you.

Burbur Detox - Very Gentle

Burbur is hands down my absolute favorite go-to detox method, and it's one I have used for years on end. I have a whole blog post about it, but for now I will summarize its method of action. Burbur is an herbal plant extract which has a unique ability to help drain the liver, kidneys and lymphatic system. The liver helps you detox by dumping out bile which contains toxins; the kidneys help flush out toxins via urine, and the lymphatic system is your system of lymph nodes whose primary job is to rid the body of waste. When you take burbur it very gently initiates each of these systems to start up and begin to work. You can feel the positive effects of burbur quite quickly, usually within 30-60 mins (sometimes less). Burbur comes in a tincture, and the instructions for use are to take approx 8-10 drops and place it into about 4oz of water. Slowly sip this over the course of 15 mins. You may do one cup every 15 minutes until you feel better. Burbur works very quickly for me, is gentle to use on an empty stomach at any time, and has always consistently provided me with relief. I can't live without it. Some people like to use Burbur along with Pinella, which is a brain/nerve detox. I use Pinella on occasion, but it can be a bit more harsh so it's not recommended if you're in a really fragile state. NutraMedix sells Pinella on its own, or in a pre-mixed Burbur/Pinella combo.

Epsom Salt Bath - Very Gentle

Epsom salt baths can be done two ways: either in a proper bath, or via foot bath. I have pretty much exclusively done foot baths due to the fact that I have heat intolerance, so a full on bath leaves me feeling pretty crummy. You get the same benefits both ways, so it's just a personal preference. Many people find a whole bath soothing because epsom salt also soothes sore muscles, but if you are intolerant to heat, don't own a bathtub, OR just want an easier method then a foot bath works the same (and uses less epsom salt). Epsom salt is essentially just magnesium flakes, but it works by stimulating the liver to dump bile. Epsom salt comes in two forms: Magnesium sulfate & magnesium chloride. Many with Lyme disease (and other chronic illnesses) have a MTHFR mutation which doesn't do well with sulfates. Therefore I always recommend using magnesium chloride flakes, which is also more pure. The method for Epsom salt baths (and the trick to it), is to add a few cups into water + add in some baking soda as well. The two react to each other and will fizz up at first then completely dissolve. What is most important though is that you use enough magnesium to your water ratio, or else it won't get into your system. The way this works is essentially via osmosis, and you need a high enough magnesium ratio in the water to create a "pressure" so to speak that pushes its way in through your skin. This is why I prefer foot baths, because they require less magnesium. If you do a full bath you will need to use much more. When doing a foot bath I do 2 cups of magnesium flakes with a sprinkle of baking soda. You will need to do the bath for about 20 minutes to get the full effect, and I generally find it very relaxing. I used to put the foot bath up on my bed and lie in bed with my feet in it. So even if you are bed-bound it's a really easy and gentle way to help your body detox.

Lemon Essential Oil/Lemon Juice - Very Gentle

Lemon and lemon essential oil have long been used to help detox, especially to help rid people of "water weight." Lemon juice works by stimulating the kidneys to work faster and therefore it helps detox via that method. This is an alternative to burbur if you don't have any on hand, but in my experience isn't great on an empty stomach (it's quite acidic). Lemon essential oil however is not acidic, rather it is alkaline, so can be used at any time, even on an empty stomach. Lemon EO works to stimulate the liver and kidneys both, and is best used by adding 1-2 drops to a glass water bottle and drinking it throughout the day. You do not need a lot of the essential oil because it is already incredibly concentrated. You must put it into a glass water bottle (not plastic), because the oil can corrode plastic and you don't want to be ingesting any of the plastic byproducts. Water and oil do tend to separate by nature, so you need to remember to shake up your bottle each time before you drink. Since you already have to drink water throughout the day, adding a drop or two of lemon EO helps make it taste better and as a bonus it will help your liver and kidneys detox as well. It's gentle, it's easy to do, and it isn't harsh by any means. Tip: Get a high quality essential oil that is food grade, NOT simply aromatic grade. Food grade means that it can be safely ingested. I recommend young living brand as I've been using it for years, and a 15ml bottle will give you about 250 drops.

Dry Skin Brushing - Very Gentle

When you aren't able to get a full lymphatic massage, dry skin brushing is the next best thing. It is, as it's name implies, the act of gently brushing your skin while dry. But, there is a specific method to it. Your lymphatic system is the main waste removal system inside of your body, and you can feel your lymph nodes swell up when it is having a hard time moving properly. Even if you don't feel enlarged lymph nodes it's incredibly helpful to get the lymphatic system moving because it can get sluggish easily when it's working around the clock. Dry skin brushing is very easy, all you need is a dry skin brush (which is very affordable), which is made of special bristles that gentle exfoliate and drag the skin. The trick to dry skin brushing is that you need to brush in the direction of the lymphatic system. An easy way to remember is to brush everything towards the heart. You will want to go the correct direction, or else it won't work (and might leave you feeling worse). I attached a graphic above that is helpful to reference, but once you do it a few times you will get the hang of it. Dry skin brushing is incredibly gentle and gets your lymphatic system moving quite rapidly. Make sure that you drink a lot of water after brushing in order to help your body flush out all the toxins that get mobilized.

Charcoal Poultice - Very Gentle

I first discovered charcoal poultice's a few years ago during a time when I was very ill and having lots of issues with my pancreas and liver. I wrote a full blog post here if you'd like to read more in depth. But for the purpose of this post I will just explain how it works & what you need to do. A poultice is by definition: a soft, moist mass of material, typically of plant material, applied as a hot medicament to the body and kept in place with a cloth. The purpose of a poultice is to draw things out from the skin, and is often used in areas of inflammation. Imagine it like a charcoal patch that sits over the liver or pancreas. Activated charcoal is a very powerful binder, they use it in ER's for people who have alcohol poisoning or have ingested some form of poison because it binds onto toxins and safely removes it from the body. For the purpose of this poultice it will be used on the outside of the body, because it has those same properties when it is driven into the skin with heat. Doctors use charcoal poultices over the liver to lower liver enzymes from an over burdened liver, or over a pancreas for an over worked pancreas. Both of these organs can really struggle during a herxheimer, and some people find themselves with high liver enzymes in the hospital if they aren't careful. I was in a similar situation when I discovered the poultice, and it's ability to pull toxins out and bring relief. I know it seems a little out there and far fetched, but you have to trust me on this. When you've tried everything else and your organs hurt, and you hurt, you will attempt anything. That's how I was, I was desperate when I tried this, and much to my sheer surprised it worked so well. My low grade pancreatitis resolved, my liver pain resolved, and I felt like my body had a huge toxic burden removed.
How to do it: You will need pure activated charcoal powder for this, and its crucial that it is pure powder without any fillers. Then you take about 1-3 tbsp charcoal powder and mix it in a small bowl with some water (go teaspoon by teaspoon), until you create a paste. You want it to be thin enough to spread, but still thick enough to stay in place where you put it on your skin. You have two options to application: either put it directly on the skin, or take a cheesecloth material and put it on your skin, and place the paste on top. I will warn you that the paste does stain the skin temporarily, but putting it directly on the skin is stronger than via the cheesecloth. The cheesecloth however is an easier clean up, so it's up to you. I always did it via cheesecloth, and I still got a great result. Then over top of the paste you will place a wet warm paper towel (enough to cover the area), then a piece of Saran Wrap to seal in the moist heat, and finally place a heating pad on top of all of that to keep it warm and drive it into the skin. Lie like this for 20-30 mins and then remove. It's as easy as that! This can be done 2x daily and is incredibly gentle yet very powerful. It will pull the toxins out and unburden your liver/pancreas.

Activated Charcoal & PectaSol - Gentle

Activated Charcoal is most commonly taken orally in a chewable tablet, pill, or powder mixed with water. Activated charcoal is a powerful binder which works by latching onto toxins and holding onto them until they make their way out of the body. This is an important step, because when the liver or lymphatic system dumps bile with toxins in it and you don't flush them out of your body quickly enough then much of it can get reabsorbed. Using a binder such as charcoal helps prevent the toxins from reabsorbing while they are on their way out. There are many different binders out there, and out of all of them Activated Charcoal is the most gentle. For starters it won't give you too powerful or quick of a detox to where it will make you sick or overburden the body more. It is not that strong in comparison to other binders, but I still marked it just as "gentle" because for some people who are in an extremely fragile state even that can be too much. In my experience I haven't ever not tolerated charcoal, but others have so it is important to note. Since charcoal is one of the most gentle binders you need to take a few tablets to get full effects. It can easily be taken on an empty stomach and won't cause any upset. Like many other binders it can cause constipation, so you want to drink plenty of water with it. I recommend at least 8oz of water per tablet you take. Another comparable binder to charcoal is pectin, which is derived from citrus fruits and also helps latch onto toxins and shuttle them out. Pectin is pretty mild in strength as well, but it can cause some stomach upset in sensitive individuals if taken on too empty of a stomach. Pectasol is a really popular brand of Modified Pectin (not just any form of pectin will work), but it's a bit pricey in comparison. You will have to find which works best for you.

Molybdenum - Gentle

There are many different toxins created in the body during a die-off or herxheimer reaction. A common one with Candida die-off and often with Lyme also a neurotoxin called acetaldehyde. This toxin accumulates in the brain, spinal cord, muscles, tissues and is difficult for the body to properly detox out. Therefore it leads to a whole host of unpleasant symptoms such as: rashes, muscle pain, joint pain, weakness, fatigue, brain fog, migraines, depression, memory loss, nausea, and the list goes on and on. This neurotoxin in particular can make you feel really crummy, and it's molybdenum (a trace mineral) which is required by the body to make several important enzymes that allow your liver to neutralize and eliminate acetaldehyde. You do take in some molybdenum from food, and some multivitamins contains it as well. However, during a die-off your body will use that up quickly, and supplementing it becomes crucial. The best form of molybdenum to use is Glycinate Chelate. There are many molybdenum products on the market, and I have tried a few, but by far the best is made by Seeking Health (Optimal Molybdenum Drops). The reason for this is that it's very concentrated, and you need such a small amount to get benefits. One single DROP contains 25mcg which is 56% of your DV. During a herx the recommended dose is 100-300mcg. It's very easy to reach that with 4-12 drops under the tongue. Other varieties of molybdenum require you to dilute it in water and you need to drink a higher overall volume. I rated this as 'Gentle' because the right brand is very gentle, but some others I tried were harsh on my stomach and not tolerated what so ever on an empty stomach. Thats why I prefer this sublingual variety because it goes around the stomach. Also, some people have reported having too fast of a detox from it, but to that I say they likely took too much. Start with 2 drops (the daily value) and see how you feel, then slowly increase. Taking a big dose all at once isn't wise with any supplement until you know how it works with your body. I found the Seeking Health variety to be very well tolerated.

Milk Thistle - Gentle

Milk Thistle might have a funny name, but it's actually a plant from which a powerful herb is derived. The active ingredient in Milk Thistle, silymarin, is the star player here and what performs the difficult task of detoxing the liver. Dr. Axe explains it as, "Milk thistle benefits work by drawing toxins out of the body and protecting the liver from damage. Silymarin, which is a flavonoid derived from the milk thistle plant, has been used in traditional medicine as a natural remedy for diseases of the liver because of its potent antioxidant activity." Studies have also shown that there is an improvement in overall liver function and inflammation when people with liver disease take Milk Thistle. The compound silymarin helps to clear free radicals, lower inflammation in the liver, and in turn helps the liver to regenerate.

How much should you take? If you want to do a more powerful liver detox then 150 milligrams one to three times a day is good. But for ongoing liver support, a dose between 50-150mg daily is best. You know your body best, so adjust it based on how you feel. I recommend a lower dose liquid supplement so you can adjust it easily as needed. I also love a good Milk Thistle tea, this works just as well as a capsule supplement.

Lymphatic Massage - Medium

For starters, lets discuss what the lymphatic system is. The lymphatic system is a network of tissues and organs that help rid the body of toxins, waste and other unwanted materials. The primary function of the lymphatic system is to transport lymph, a fluid containing infection-fighting white blood cells, throughout the body. The vessels are connected to lymph nodes, where the lymph is filtered. In summary the lymph system picks up fluids and waste products from the spaces between the cells and then filters and cleans them. As you can see the lymphatic system plays a huge role in detoxing the body. When the lymph system gets backed up and sluggish its unable to do its job properly. Herbs like burbur help to drain and move the lymph fluid, but a stronger cleanse can be accomplished by a lymphatic massage.

A lymphatic massage is like a regular massage, except it is altered to be more gentle and surface level. The massage therapist will also massage in a way that moves the lymph fluid up towards the heart in the way it typically flows. This means they will work up the legs, up the arms, up the stomach and down the chest. You need to make sure that your massage therapist knows what they are doing and specialize in lymphatic massage, because someone who is uneducated in it could make things worst by using too much force. I ranked this as 'Medium' because you have to make sure you are very hydrated before hand and then stay very hydrated afterwards too so that your body can flush out the toxins that have now been mobilized. If you don't do this you may end up feeling worse. There are also some people that feel like they flare up for the first 24 hours and then get much better afterwards. Everybody is different, and you do need to be careful and start slow. I received lymphatic massages from 2 different massage therapists, and one did an amazing job that helped me while the other just made me feel worse. Sometimes it requires trial and error.

Bentonite Clay & Cholestyramine - Medium

These two are both binders (like Charcoal and Pecta-Sol), but they're a little bit stronger. If taken too much or too fast they can cause a toxin dump that only flares up symptoms, so I put them into the Medium Category.
Bentonite is a light grey colored clay that consists of volcanic ash called "Montmorillonite." Because of this it contains a high amount of minerals such as calcium, magnesium, iron, sodium, and potassium. On top of that it has the ability to absorb and remove toxins, heavy metals and impurities from the body. It comes in two forms: 1. A powder you need to mix into 8-16oz of water and drink 2. A pre-mixed ready to take liquid that you mix a tablespoon of into about 4oz of water. It comes down to preference, but they both do a great job. This is a stronger detox than charcoal, but not too strong. Just make sure you are drinking plenty of water with it and start slow. When you start to latch on to toxins its a careful balance, because if you do it too quickly your body will dump more toxins out of the tissues and into your blood stream to fill it back up. This can quickly get out of hand, so I recommend starting at about 1/4 of the dose on the bottle and working up.

Cholestyramine is a prescription powder that was originally created for those with high cholesterol. They soon realized it was also really helpful for patients after gallbladder removal by soaking up the extra bile that may irritate the stomach. During this process they noticed that it did a fantastic job of absorbing bile and holding onto all the toxins in it until its excreted. I would say Cholestyramine is the strongest binder of them all, and my favorite too. I wrote a whole post about how it works HERE. Cholestyramine is very useful for mold illness too, as it holds onto mold toxins and helps flush them out of the system better than any other binder. It is a prescription, and typically comes in packets from the pharmacy. However the trouble with those is that they contain a lot of sugar and fillers that often make patients detoxing feel worse off. It is recommended to obtain Cholestyramine only from a compounding pharmacy where it is pure and without any filler. This is what I have done, and its allowed me to use smaller amounts and achieve the same results. It's crucial to start slow with Cholestyramine because it's strong at first, but once it gets working it works amazingly well.

Coffee Enema - Medium

I gotta say, this detox method was by far the hardest for me to understand. I have of course heard of colonics and I always had mixed feelings about it because they really mess with the colon flora, the mucus lining, and electrolyte balance. I think at first I assumed that coffee enemas might also bring a similar danger, but I finally came around to doing some research and learning more about how it works. I do want to mention that if you have an IBD then this method can be a little dicey, and I don't know that I would recommend it. But that is of course a personal decision.
If you are sensitive to caffeine you might have a thought to simply use decaf coffee instead, but it won't work. Oddly enough the caffeine portion is exactly what's needed to make the whole process work. However, the coffee used for enemas isn't the same as what you would get at Starbucks. It's completely different, relies on high amounts of cafestol & palmitic acid (to open the bile ducts) and is balanced in a way that the caffeine content is just right. As always though, if you have a heart condition and are sensitive to caffeine then proceed with caution.

So, now do coffee enemas work? When you fill an enema up with coffee and start to let it flow the hemorrhoid veins absorb the caffeine. From there it goes up (very quickly) to the portal vein which carries it right up to the liver and gallbladder. Once the liver receives the caffeine and palmitic acids it immediately reacts because the caffeine is an irritant to the liver. This makes the liver open its bile ducts and start dumping bile out quickly. Since toxins are stored in the liver this process of draining the bile from the liver dumps all of it out into the stomach so it can be shuttled out of the body. For best practice drinking a binder after a coffee enema will help soak the toxins up so that they cannot be reabsorbed while its making its way through the intestines. Also, many people ask if you can just drink coffee instead and get the same results and the answer is no. It must be given via an enema because there is a direct portal to the liver and it's the only way this process works. It's also a quick process, taking less than about 20 minutes. If it's your first time I recommend a Coffee Enema Kit that will have everything you need, and also Enema Coffee which is balanced and made only for enemas. I marked this as 'Medium' because it mobilizes a lot of toxins all at once, and you have to be ready for that.

Zeolite - Medium

Zeolite is a volcanic mineral, high in silica and alumina tetrahedra. What makes it a go to for detoxification is its honeycomb-like crystalline structure that traps toxins in the body. Think of Zeolite as being a molecule with many chambers inside of it. These chambers hold a negative charge, which attracts positively charged toxins as it travels through your body. You could say its a bit like a toxin magnet. The crucial aspect of Zeolite though is that you buy one which is properly cleansed. As it comes from volcanic substances, not all of the supplements are completely pure. You need pure Zeolite in order to ensure its safety. I ranked this as 'Medium' because it has also been shown to activate the immune system, which is someone in a very fragile state could lead to even more herxing. It should be used with caution and started slowly to see how the body adapts.
I prefer to use the Zeolite spray because I trust that it is pure and the nano particles absorb very well, but many people prefer a powder form that they mix themselves.

Castor Oil Pack - Medium

When you hear about Castor Oil your mind might immediately go to Ricin (a poison) and wonder how on earth this is safe. I want to reassure you that you will be using this externally on the skin, not internally. But even if it is used internally it's considered safe by the FDA up to 1 Tablespoon a day. Ricin is found in castor oil, but in very low concentrations. Pure ricin that can be a poison is extracted from the beans and put into its own pure concentration. So, no worries, you will be safe! However, as a warning you should never use this method if you are pregnant.
Next up lets discuss how this oil is used, and then I will explain the logistics of why it works. Castor Oil packs are made by taking a piece of wool cloth and coating it in castor oil. This is then placed on the abdomen (usually directly over the liver), covered with a piece of Saran Wrap, and then topped with a heating pad to drive the oil into the skin. You lie like this for about an hour to let it work and then clean it off of your skin. It's a relatively easy process, but its also a messy process. Castor oil is sticky and will stain clothes so you need to use towels underneath you and wear old clothes. The good news however is that you can re-use the castor oil pack over and over by storing it in a sealed glass container without needing to add more oil to it.
So, how does it work? When the castor oil is applied topically over the abdomen it is absorbed through the skin into the tissues. With the use of the heat it helps drive the oil even deeper so it's able to increase lymphocyte production and increase the circulation of the lymphatic system. Using it over the liver also stimulates the liver the dump bile, so you get a two in one benefit that way. I marked this as 'Medium' because it can also cause a quick detox, and if you are in a very fragile state it might be a bit too much for your body. It's not harsh by any means, but it's somewhere in the middle of the intensity scale.
Castor Oil packs come in a really handy kit that has everything you need in one place, which makes it very convenient. This is what I have and I like it because I also trust the purity of this brand to be very clean. Alternately you can also buy the items separately and make your own kit if you'd like, but the kit is pretty inexpensive. Just remember to use old towels and clothes when you do decide to do it!

Ionic Foot Bath - High Intensity

An ionic foot bath is created by using a machine with conductive arrays and placing that array into a tub of water which has sea salt in it. A patient puts their feet into the water and the machine in turned on. A direct current goes through one end of the array, through the salt water, and comes out the other end. This current creates positive and negative ions which do two things: 1. help to pull (like a magnet) the toxins out through the skin 2. latch on to cells as the current travels through the body to pull toxins out of them. During this process the water changes colors, and some people say that is direct proof of the toxins that are being pulled out. This has been disputed, but if you look past that and look at some science based results then you can see it definitely works. If you have heavy metals for instance, it does a fantastic job of detoxing the body of them. Tests have shown that by measuring patients heavy metals prior to an ionic foot bath and then testing it a few days after, they see that there is a huge dump of heavy metals in their urine after the foot bath. No one is exactly sure how this mechanism works on a cellular level, although it is hypothesized that the charged ions coax the heavy metals out of the tissues. Either way, it certainly works for many people and brings them great relief.
I rated this as 'High Intensity' you can actually feel a small shock when the machine turns on, because its sending an actual current through the body. Just like the salt water is needed for conduction with the array, our bodies are also largely made out of water and electrolytes. This provides the perfect atmosphere for the currents to travel through. I would not recommend this to someone who is very sensitive or ill. There are also some warnings about pacemakers and the such which would make you unable to use the machine.

Many clinics have foot baths which you can pay for by the session. These are typically the higher end machines. There are also some modest priced models out there which you can purchase for at home use. If you want to do these often then owning one will be a better value. A warning through, if you buy a very cheap or inexpensive unit there are risk that it might make you feel worse off. That's because the difference between a $100 model and a $1500 model are the frequencies which are produced. The right frequency should put your body into a parasympathetic state of relaxation and detoxification. The cheaper models though are no better than a 9-volt battery with some copper wires, as they often produce a frequency that stresses the body, puts it into fight or flight mode, and only shuts down detoxification. So always read reviews and be choosy with which machine you use.

Infrared Sauna - High Intensity

I will begin by saying that infrared sauna's are not for everyone. Some chronically ill patients are so sick that they can't sweat (it's more common than you think). If you are someone who can't sweat or has trouble sweating, do not try this. On the flip side, you might think that a condition like POTS would be badly triggered by the heat, but its actually a very dry heat vs a humid heat so I found it to be much more tolerable. In fact, it someone doesn't even feel nearly as hot as it is. That being said, if you have heat sensitivity approach this with caution.
Infrared Sauna's work simply by creating a kind of infrared ray that heats your body up by penetrating very deep. This deep penetrating heat goes into your tissues and gets them to dump their toxins into the blood stream. Also, as you sweat you are releasing all the toxins currently circulating in your body as well. This is a very effective detox method, but it is definitely 'High Intensity.' For starters, since it heats up your entire body it will dump toxins from your entire body out too. You need to be ready and prepared for this by staying very hydrated and making use of binders. However, if you are new to detoxing then I do not recommend this at all. You need to go slow, because a sudden dump can make you feel awful. If you tolerate an infrared sauna though then it can be a real miracle worker, and most people report feeling better about 24 hours after a session (once the toxins have cleared).
You have a few options to accessing an infrared sauna. Some gyms and spa's offer them in packages, so you can do that if you have a location nearby. You can also buy your own infrared sauna for your home because they come in two sizes: 1. Wooden Units 2. Portable Units. I had enough room in my home for a stationary wooden unit (this is the one I got), but the portable ones work just as well and do cost less. Some people prefer the portable units actually because your head is left out and they can tolerate the heat better if their head stays cool. It's all about personal preference!

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All About Hydration - What you DON'T Know About Electrolytes & Why There Is A Better Alternative!

6/19/2019

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If you have Lyme, POTS, an IBD, or really any chronic illness where you struggle with staying properly hydrated, please read this post! I have known I had POTS since way before I ever knew I had Lyme, and yet somehow this vital piece of information was something I just learned. As someone who researches so obsessively about everything (especially my medical conditions), I really couldn't believe how much information is often left out around the topic of hydration and electrolyte balance etc. This is a long post, but please trust me, if you struggle with dehydration or any of these conditions this is critical info to have.

So, a bit of a back story about me. It took me 5 years of misdiagnosis to finally learn that I had Lyme disease as the underlying condition for all of my struggles. During that 5 year journey I met a lot of Doctors who were trying to uncover the link to all of my symptoms, and one of these Doctors led me to a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome). I won't go into the condition in-depth, but you can read more about it here. This condition is a "Syndrome" and that means that it is a presentation of symptoms caused by something, but the cause is unknown. So it wasn't really an end-all be-all diagnosis per se, but rather a clue about what was going on in my body. It was however a very helpful piece of information for me, because there are some medications you can take to control POTS. My goal at the time was symptom relief, because life had become very grueling while I was in college. POTS is a dysfunction of the autonomic nervous system, which is what controls your heart and how it pumps blood throughout the body. For example, when I stood up I always felt faint and had to pause to catch my breath and my heart was constantly racing trying to keep me up right, etc. There is a lot more to POTS, but for the basis of this post I will keep it very surface level.

Many of the things one can do to ease the symptoms of POTS are: drinking more water, eating more salt to raise sodium levels, wearing compression stockings, strengthening the legs so it pumps blood to the heart more efficiently, and prescription medications such as Midodrine (which was a life saver for me at the time). I did everything imaginable that one can do to help POTS. I upped my water intake big time, I salted everything heavily, I got prescription compression socks, I got prescription medications, and I enrolled into an up and coming study at the time for POTS patients. I saw Doctors who specialize in POTS in Kentucky, and also all the way across the country in California. I really believed if I just found the best of the best to help me then I would somehow be fixed. While I found experts in this field (at the time POTS was a very niche diagnosis and not very well known), I still got the same general advice as listed above about staying hydrated, except one Doctor suggested I drink electrolytes too. Still, nothing really solved all my problems, and I was receiving IV's to try and pick me back up when dehydration was constantly creeping in. In fact, I have needed hundreds of such IV's over the years due to POTS which was later complicated by a Crohn's disease diagnosis.

My past history is relevant because I feel like those who are diagnosed with POTS get the most tips about hydration, but in my opinion it is still very lacking. Even with Lyme Disease, your body uses up a lot of magnesium & potassium and yet there’s minor information highlighting the importance of drinking electrolytes. In comparison, with Crohn's disease there is even less information or open discussion surrounding dehydration. I don't think I have had one conversation about that topic with any medical expert regarding Crohn's disease and that truly baffles me considering an active Crohn's flare depletes a lot of electrolytes and fluid. With all the conditions I have been told I had, the only one that got any emphasis on "staying properly hydrated" was POTS and even that was lacking. For one, not all electrolytes are created equally, and furthermore drinking your run of the mill electrolytes is not enough when you are losing lots of fluids day in and day out for long periods of time. I would say the topic of fluid loss is perhaps most relevant for those with IBD's or IBS, but it also goes for patients going through cancer treatment, or any other chronic illness where loss of fluids is applicable. For me, the fact that I had underlying Lyme/POTS complicated the issue tenfold. Not only was I already someone who struggled to stay hydrated without Crohn's, but once that came into the picture it left me incredibly reliant on IV hydration and my veins were taking a beating.

Now I have seen my fair share of advertising on social media about various electrolyte brands who promise to be the very best on the market. And I have done a lot of research looking for electrolytes that aren't full of fillers, corn syrup, corn glucose, or loads of sugar. Time and time again I have only landed upon a few which fit the bill, and I used to think they were the best I could get. I should note that while I drank electrolytes daily for years on end, my potassium, magnesium and chloride were always at the rock bottom of the scale. I could not understand how on earth that was possible, but I chalked it up to a common POTS problem and quite frankly I never though that much about it.

It wasn't until recently that I had been in the worst and longest Crohn's flare to date that no matter how much I drank my electrolytes, I was still showing symptoms of dehydration. With each passing day of my flare I was going further and further down the rabbit hole. I could not understand how I was drinking two liters (or more) of water and electrolytes and yet I still felt very dizzy when I stood up, my heart was acting up, I would tremble if I exerted myself too much, my hands were ice cold all the time, and I could barely stand for 2 minute without almost fainting. Those symptoms lasted for weeks and were growing worse with each passing day. I was really starting to worry, and I thought I had something seriously wrong. Remember, I was drinking loads of electrolytes every day, so it did not dawn on me that I could actually be dehydrated even though my symptoms all seemed to fit.

Everything came to a head recently when I had what I consider one of the most terrifying nights of my life. For about 48 hours prior I developed a lower pulse, a thudding heart, shortness of breath, chest pain/tightness, and when I stood up (even very slowly) my heart felt like it would explode out of my chest. I thought maybe I was developing pericarditis again, so I tried not to worry too much because my pulse ox looked okay. Fast forward to the night in question and things started to deteriorate quickly. My heart rate did this thing where it was very low (50's, which is super low for me), and then shoot up to the 120+ range and then drop back down again. This would happen very quickly, within 2 minutes total. Then, it happened again, and again, and again, finally hitting over 135 while lying down and climbing higher. My pulse ox meter got so high it couldn't even go any higher. I reached the top threshold that it was able to measure so I can't even tell you what the highest number was that I got to. When I put my hand on my wrist to feel my pulse it was going to fast I couldn't even count the beats. Listen, I understand that to someone out there these numbers might be no big deal, but for my body and for what my heart rate and blood pressure typically is, it was astronomical. Not just that, but the actual bodily sensation of my heart beating this fast was the scariest thing I have ever felt. My head was cloudy, I could barely speak, parts of my body felt numb, and I genuinely thought my heart might stop all together. No I am not being dramatic, when this happened I was alone and I could barely grab my phone to call my mom so I did not know what to do, which way to turn, and I've never felt anything like that in my life.

At that point we sprung into action because it was obvious something is seriously wrong. I will spare you all the step by step details here, but the crucial things like a blood clot were the first to be ruled out (thank God). Judging by my CBC it looked like I was dehydrated, but I couldn't grasp how that was possible. This my friends, is when I learned the lesson that I have finally came here to share to you all today: Volume depletion and dehydration are two totally separate things.

One more time: Volume depletion and dehydration are two totally separate things.

You can be drinking plenty of water and not be technically 'dehydrated' by the definition, but you can be severely volume depleted and have very similar symptoms. Volume depletion, or extracellular fluid volume contraction (ECF) occurs as a result of a loss of sodium. It comes from your typical suspects such as diarrhea, vomiting, excessive sweating, diuretics, kidney failure etc. Because water crosses plasma membranes in the body via something called 'passive osmosis,' a loss of sodium quickly results in water loss in your cells (extracellularly). Basically, a loss of sodium always causes a loss of water in the body, especially on a cellular level. This is why POTS patients are told to eat so much salt, with the theory that more sodium means more water in the body. The main gist here is that every cell in your body needs water to survive, and when you lose sodium the water gets sucked out of those cellular spaces and your overall circulating volume decreases. When you simply drink water it takes a lot of time and work for that water to actually get INTO your cells. It first has to go into your stomach, and using osmosis it must be taken up and distributed into your cells. But not all of the water gets soaked up (ill explain more on that later), which is why when you drink a lot of water at once you will usually have to pee really soon after. Most of it passes right through you. That's why severely dehydrated patients are given an IV because that goes directly into the blood and into the cells that desperately need it.

Volume depletion is referring to the water that is actively in the cells. You can drink loads of water orally and yet if it can't get into the cells you will still be volume depleted. How is that possible? I'm glad you asked. If you look at any electrolyte drink on the market today you will notice that they all contain sodium and then some kind of sugar (glucose). In the past I actually wanted completely sugar free electrolytes, and honestly those are as good as useless and I'll explain why. Glucose is needed to increase the absorption of sodium in your intestines. This discovery that sodium transport and glucose transport come together in the small intestine to accelerate the absorption of water was a huge discovery that changed the way we rehydrate the human body. However, this balance of sodium and glucose is very specific. Just having any ole amount of sodium and glucose in an electrolyte drink is not going to be enough. In fact many drinks like Gatorade that are loaded with sugar will only dehydrate a person more, because your body doesn't know what to do with all that sugar and the gut can't absorb electrolytes if there is too much sugar. This is a very crucial balance.

From rehydrate.org
"Glucose enhances sodium, and secondarily, water transport across the mucosa of the upper intestine. For optimal absorption, the composition of the rehydration solution is critical. The amount of fluid absorbed depends on three factors: the concentration of sodium, the concentration of glucose and the osmolarity of the luminal fluid. Maximal water uptake occurs with a sodium concentration from 40 to 90 mmol/L, a glucose concentration from 110 to 140 mmol/L (2.0 to 2.5 g/100 mL) and an osmolarity of about 290 mOsm/L, the osmolarity of body fluids. Increasing the sodium beyond 90 mmol/L may result in hypernatremia; increasing the glucose concentration beyond 200 mOsm/L, by increasing the osmolarity of the solution, may result in a net loss of water. CHO to Na ratio should not exceed 2:1 in these solutions."

Basic electrolyte drinks do not follow these standards or have these properties. They simply do not. So it is questionable how much of the actual electrolytes in the drink are even being properly absorbed. This is when I was led to information on Oral Rehydration Solutions (or ORS for short). ORS is a solution that was discovered and is used by the World Health Organization and the Military to rehydrate people who do not have access to an IV but are severely depleted. They use them in developing countries which face diseases like cholera or dysentery or out in combat zones because they are able to rehydrate as well as an IV. There are strict guidelines for what kinds of drinks can call themselves an ORS, because it must have a specific osmolality and sodium to glucose ratio (as discussed above). Do not be fooled by some brands who call themselves "Oral Electrolyte Solutions" to try and sound similar, because that is not the same thing. Oral Rehydration Solutions must meet certain criteria to get that qualification. These solutions force the electrolytes like sodium, potassium, magnesium, chloride to all be absorbed in the stomach along with the water itself which can then get into the cells that desperately need them. Remember, if the sodium can not get into the cells then the water can not get into the cells, period. This is why you can be drinking loads of the wrong electrolytes and loads of water and still have issues with volume depletion and be symptomatic.

When I got my hands on an Oral Rehydration Solution, the difference was shocking. When I would typically drink my electrolytes/water it all went straight through me, but when I drank a liter of ORS I didn't go to the bathroom for hours and hours. That's because it actually got absorbed, and the change was incredibly noticeable. I used two packets in 16oz of water per day, and by day 2 I felt like a different human being. Drinking an ORS feels genuinely comparable to when I would get a lactated ringer IV in the past. I can't help but think how many veins I could have saved had I known this information sooner. While yes, there were still some times when I couldn't physically get water down and I needed an IV (and might still need that), there were other times when I needed an IV because my standard electrolytes just weren't quite enough.

You might ask yourself why standard electrolyte brands don't just fix their ratios and get the official ORS qualification. And the answer to that comes down to money. It's pricey to create these solutions that are perfectly balanced and pass the test to become ORS. You are looking at about $2.50 per packet of ORS compared to maybe $0.50 a stick of basic electrolyte powders. Other times companies don't want to go through the work because for most average people a simple electrolyte works just fine. It's really a much smaller population who have medical conditions that force them to seek out a more potent form of hydration. You will need this more potent ORS if you are someone with a chronic illness that warrants it, someone who loses a lot of fluid and electrolytes on a regular basis due to a medical condition, or the elderly who fall into the trap of dehydration very easily. The scope of where ORS was primarily used and focused was in developing countries or in the military and other places that it was a necessity. That left the market for ORS in the United States pretty small, and thus very few people actually know it exists, where to get it, or why it is superior.

I know this has been long, but theres a bit more info that is really important. I want to quickly discuss the two types of ORS on the market, and some of the studies showing which of the two are superior and why. I also want to recommend two brands (after excessive trial and error), so if you made it this far stick with me a bit longer!

The WHO and Red Cross use a very standard Oral Rehydration Mix which comes in a packet and tastes pretty bland. It gets the job done in developing countries, but as I was reading about the WHO brand of ORS I came across some journals and studies discussing the differences between Polymer based ORS and basic ORS, and which was superior. Polymer based ORS are those who have a base such as rice, or another short chain polymer. These studies were looking to see if a short chain polymer would increase the rate of absorption in the intestines. Specifically, they were looking to see if they could make absorption noticeable better. This study by the NIH looked at 4,284 participants and compared those who used P-ORS and those who used standard ORS, and came to the conclusion that Polymer based ORS was superior. Another study echoed those sentiments by saying that Polymer based ORS had a better recovery rate by day 3, shorter duration of diarrhea, less ORS solution use, less stool output, and better rehydration.

This information is important, because if you go out onto the great worldwide web and look for classic Oral Rehydration Solutions you will find a few. The trouble I found with 90% of them is that they contain either corn based glucose, maltodextrin (also from corn) or Sucralose instead of just classic cane sugar glucose. I only found one that was very pure and only used cane sugar, lime juice powder, and the needed sodium, potassium, magnesium etc and it's called Hydrant. Right off the jump this was my pick, and it is genuinely great. I would recommend Hydrant in a heartbeat if you want a classic ORS that will work great and not be full of useless junk. But, as I learned about polymer based ORS I realized that I was still missing out on having the best of the best and I was on a mission to get it. And let me tell you, it is not easy to find it online. It took a lot of digging to finally find the one single company that sells to average consumers. Polymer based ORS is not something you just find floating around out there, and I actually found 2 others who only sell to healthcare facilities strictly.

Before I go any further you should know I am not sponsored by any of the companies I have discussed. I am not being paid by them to write this, and I never got anything for free or in return for doing a write up. I researched all of this information by myself tirelessly, and bought everything with my own money.

The only company I found who creates polymer (rice) based ORS is called Cera, and they are actually the official supplier of ORS for the United States Air Force. In the early 2000's their Ceralyte 70 drink was put to the test by the Uniformed Services University and the researchers at Ft Detrick, Maryland. This P-ORS worked so well, and is so effective, that in 2005 the US Air Force Surgeon General testified before Congress to the efficacy and effectiveness of it, calling for its use. It was put into all United States Air Force IFAKs and pilot SERE kits shortly after. Thankfully Cera decided to create a product that the public can use as well, and this is how I discovered them. Cera has 3 levels of ORS depending on your needs. Their Ceralyte-50 is a lower potency then their Ceralyte-70, but they are both incredible. Then they have the Ceralyte-90 which is for severe cases and only to be used for short periods of time in severe situations. Their formula uses rice as the polymer, and the ingredients are very pure. For example their Lemon Ceralyte-70 bottles contain: water, rice syrup, (sodium, potassium etc), citric acid, citrus flavor, and stevia. Their drinks come in individual sticks as well as pre-cartoned beverages. I prefer the pre-cartoned beverage because it has the best taste and packs a punch in a small container. The Ceralyte-70 has 404mg Sodium and 200mg Potassium per 8oz, compared to two of my favorite old go-to electrolyte drinks which only had 55mg and 100mg of sodium respectively. Not to mention, neither of my old electrolytes had any glucose source. NONE. They only had Stevia. So it didn't matter how much potassium, magnesium or zinc was in either of them, because very little likely ever made its way to cells as evidenced in years of blood work that showed I was depleted.

I honestly can't believe how long it took me to learn about volume depletion, and how long it took me to learn about ORS. It is so superior to standard electrolytes, and it feels like some kind of hush hush underground secret that very few patients actually know about. I had to sit down and write this post immediately when I learned all this info and saw how it worked in my own body, because I wish I learned it sooner. I wish I didn't have to go through what I went through to lead me down this path of knowledge, but I'm just grateful I got here. I am not saying that if you are someone who depends on IV's and has a port or PICC line that this can replace your daily saline IV's just because it is "as effective as an IV." I do not know your situation or needs personally to be able to say anything that radical. Sometimes the IV's are needed to flush toxins out of the body, or to be used if one can't take in fluids orally etc. They are still incredibly vital. But I am saying that it is very possible that if more patients knew about the option of ORS and were able to give it a chance (especially those with POTS), that perhaps it could have spared them a more permanent port to begin with, or at the very least a few less trips to the ER. At a bare minimum I would guarantee it would spare a lot of veins and a lot of unnecessary needle sticks.

Okay, that's finally the end! Sorry for the length, but I really sincerely hope that this was informative for those of you who are in the same bus as I am. If you have any further questions please leave them in the comments below, and I will do my best to help! I currently drink both Ceralyte 70 in the cartons and also Hydrant. I add the Hydrant packets to my 16oz water bottle every day because I find that I drink much more fluid in general when it has the ORS in it because I love the taste. Then I also drink an 8oz carton of Cera. Some days if I am having trouble drinking enough (due to tummy troubles) I'll only do the Cera because thats my non negotiable drink, but most days I will do both! Thus far I have been able to keep up and stay well hydrated while in the midst of a Crohn's flare.

xoxo,
Christina

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

1/2/2018

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

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

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

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

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

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

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

Cheers to 2018!

xoxo,
Christina

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Lyme Diseases: Is It Curable & What Does That Mean?

10/23/2016

12 Comments

I recently had an discussion about the word "incurable" being used when discussing Lyme Disease. This friend disliked that sentiment because she felt like it paints a negative light since many people do recover, and for someone close to her that word was upsetting hear (in association with his illness). We had a back and forth discussion about this very topic, which I wanted to expand upon here. It got the wheels in my mind turning as to what exactly goes into getting well from Lyme Disease, and what the word "cure" means to me.

The reason that Lyme disease is such a tangled web is because each and every patient is different. If you talk to an LLMD they will tell you that one treatment approach will not get all of their patients well. Treatment has to be tailored, and that's everything from the meds they use, to the kinds of supplements, to the kinds of support care, and even what needs repaired in the body. It's so complex, mostly due to the variables like co-infections, how long a person has been ill, how long it's been untreated, how far it's spread, etc. Each patient is an onion that needs to be peeled back and treated according to their needs specifically.

So what's the trouble with this model?

The way that Lyme Disease treatment is now is essentially survival of those who have the means, the money, and the access to the right Doctors. I can't even begin to estimate the out of pocket expenses incurred since I began my quest to wellness. If my parents didn't fork up money for hundreds of different trial medicines, supplements, etc then I truly believe I would not be here today. I have a body type that is highly sensitive, and very highly reactive. I have a Doctor who works with my sensitivities and has taken an approach to healing that is gentle and tailor made for me. This Doctor spends hundreds of hours a year at different conferences constantly furthering his education to help his patients with cutting edge treatment. This Doctor is also 100% out of pocket, because my insurance (and most insurance) does not cover his care. He is one of the best but his care comes at a large cost, not to mention an almost year long wait list.

I know people suffering, I know families suffering, and I know that it isn't fair to those left out in the cold. Just because I have the money, resources, or perhaps good fortune to find the Doctor or Doctors who will help find what works for me, and put me back piece by piece, it doesn't mean others have that same luxury. This is where the topic of finding a "cure" comes into play, because as of now healing from Lyme Disease is trial and error. It is trial and error in finding the right Doctor, and hoping he/she is close enough to get to them. It is trial and error in finding the Western/Eastern medicine to use that works with a patients body chemistry. It's trial and error in so many ways, that YES you can get well, but it takes a village and lots of research and many moving pieces to get there. And we have to acknowledge that not every patient has these luxuries. I see so many campaigns by people raising money for treatment because they can't afford the cost of what they need to save their life. It is utterly heartbreaking.

When I say I want a "Cure" for Lyme Disease, it's a cure that works for every patient, every time. A great example is looking at cancer. Even though many people survive cancer and live full healthy lives it is not regarded as a curable illness. The "cure for cancer" runs and fundraisers are widespread, and rightfully so. Until they can find a treatment that works for every patient and rids the word of cancer, making it an easily beatable condition, it will be seen an needing a "cure." This is how I view my quest as well, and I fight to find a cure that doesn't let anyone slip between the cracks.

I understood my friend's viewpoint that saying Lyme disease is "incurable" can be a tough word choice, because by most that word is reserved for things like AIDS, which is truly not curable. And I understand that in contrast many Lyme patients do go on to live full lives and feel well. So the word "incurable" can be tricky.. but there is a middle ground between "incurable" and "having a cure." That mid-ground is what so many large organizations are fighting for, such as Lyme Alliance. They are working to fund research to have a "Lyme Free World." Yolanda Foster often references finding "A cure affordable for all." This is the tone that many people have when discussing the sentiment of finding a cure for Lyme Disease, myself included.

Will some people still say it is incurable, and use that word to describe it? Yes, probably. But I don't believe the tone behind that is to be negative or deceptive. I've been asked before, "When will you be cured?" And this question is always a bit difficult to answer.

Which leads me to my second point..

What do I mean when I say "Cure?" What is my definition of a patient who is indeed cured of Lyme Disease? From what we understand about Borrelia, it can hide in biofilm, or cysts, or deep in tissue, that means that extreme care needs to go into staying on top of it. If the immune system drops down then it can thrive again, and that's how many people relapse. To me, a "Cure" means that it's gone forever. It mean's that there would be a treatment that would kill every last bacteria in every form in every part of the body so there is no worry or question of it EVER coming back. THAT is a cure. In a broader term it means accurate testing to catch the disease as soon as the patient gets ill, and it means better recognition with insurance so that all treatment is covered.

The thing here is that I speak to way too many patients for me to have a singular opinion. I can't pretend that just because I could hypothetically find a way to get well, that suddenly it's curable and fine. I have spoke to many patient's who were well and seemingly "cured" for years. And then divorce happened, or a large surgery happened, and boom they hit a full on relapse. We can't pretend that does not occur, because it does, and those people are a perfect example of why I will always fight to fund research for a CURE. Because we all deserve a LASTING cure, and a REAL cure.

In summary, I understand why the word "incurable" can be a hot button word for some, and disliked when it's used in relation to Lyme Disease. But in other ways I do feel that we don't live in a world which has a cure (by my above definition) for this disease. Right now, as I write this in 2016 it doesn't exist. Are there people who have recovered and stayed well for 10-20+ years? Yes. But those people are not the majority, and realistically it's not simple to get there. Those who did get there did so with lots of hard work, determination, means, and trial of MANY modalities. And until there are people who are left behind or left struggling, it won't be good enough. Even though I don't personally like to use the word incurable, I can understand why some do. To those who are in the thick of the battle field fighting each day without resources or help, it does feel like every definition of the word "incurable."

So until we have a cure I will continue to advocate for patients, and I will keep trying different therapies and treatments myself to help me heal and reach a state of remission where I am living a full life again. Each and every person who fights this disease is a survivor and a warrior in every sense of the word. And I believe deeply in my healing and your healing as well. But a desire for an ultimate cure will never end, and I won't give that up until that day comes... for everyone.

xoxo,
Christina

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

9/19/2016

20 Comments

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

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

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

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

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

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

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

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

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

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

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

xoxo,

Christina

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

9/15/2016

4 Comments

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

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

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

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

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

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

Respiratory
-congestion, coughing, wheezing

Vision/Eyes
-ocular discomfort, conjunctivitis

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

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

This shows the role of Histamine in body-wide symptoms. Just 1 of the many things excreted by Mast Cells

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

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

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

xoxo,
Christina

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

4 Comments

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

9/12/2016

1 Comment

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

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

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

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

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

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

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

Examples (these are NOT my results, just examples): Below you will see the Florescent DNA stain on the left. That milky blob in the middle is biofilm, and the arrows pointing to the lit up dots labeled "A" are showing the Protomyxzoa inside of it. On the right you see a May-Grünwald blood smear, and as you can see the purple blobs are what should not be there, and they signify various lymphocytes, neutrophils, and bacteria. Again, these are not my tests, but just a visual of what you receive with the Fry testing.

Florescent DNA Stain - Fry Labs

May-Grunwald Smear - Fry Labs

In summary I'm still dealing with the co infection Protomyxzoa Rheumatica, which is a blood borne parasite that has qualities of malaria & also qualities of a fungal nature. Protomyxzoa is a complex infection, and the reason I have yet to treat it by hitting it hard directly is because when I was diagnosed in 2011 there was no good treatment for it. It was trial & error, and patients simply were not getting better. I took my fair share of anti-parasitic meds through the years, and although it might have helped some, it was way too harsh on my body to be sustainable. (My post on proto is here). Protomyxzoa is an evasive and tricky infection, and in the past 5 years a lot has been learned. However, although treatment approaches now have better success, it's still sub par at best. The plan was always to save this infection for last, and now that we had this 1 piece of the puzzle concluded it was time to run more tests to continue uncovering what else is going on in my body. Many of my worst symptoms could not be attributed to just Protomyxzoa, so further digging was needed to see else is lurking ...

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

Here you can read Part 2, and Part 3.

xoxo,
Christina

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

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

Why Can Sun Exposure Make You Feel So Terrible?

Detox Guide: ALL The Best Detox Methods Ranked (Most Gentle to Least Gentle)

Burbur Detox - Very Gentle

Epsom Salt Bath - Very Gentle

Lemon Essential Oil/Lemon Juice - Very Gentle

Dry Skin Brushing - Very Gentle

Charcoal Poultice - Very Gentle

Activated Charcoal & PectaSol - Gentle

Molybdenum - Gentle

Milk Thistle - Gentle

Lymphatic Massage - Medium

Bentonite Clay & Cholestyramine - Medium

Coffee Enema - Medium

Zeolite - Medium

Castor Oil Pack - Medium

Ionic Foot Bath - High Intensity

Infrared Sauna - High Intensity

All About Hydration - What you DON'T Know About Electrolytes & Why There Is A Better Alternative!

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

Lyme Diseases: Is It Curable & What Does That Mean?

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

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

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

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Burbur Detox - Very Gentle

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Dry Skin Brushing - Very Gentle

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Activated Charcoal & PectaSol - Gentle

Molybdenum - Gentle

Milk Thistle - Gentle

Lymphatic Massage - Medium

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