A Lyme Disease Blog Sharing Support & Awareness

5th Annual WeGo Health Activist Awards

9/27/2016

Hello hello! It's time again for the WeGo Health Activist Awards, and I really mean it when I say I feel honored and humbled that I was nominated this year by some kind individuals. Getting the email that I was a nominee for not one, but two categories was beyond touching! So, thank you! Now that the nominations are announced you can "Endorse Me" if you feel you also agree. It's a bit like a nod saying "Oh yes, I feel that way too!" You can click either of the below badges, and it simply requires your name and email to vote/endorse, and can be done without leaving this page.

If however you would like to view my full nominee page, you can do so by clicking "Here" and you can also vote there as well; whichever place is most convenient!

Thank you again to everyone who reads Lady of Lyme, and follows my journey, encourages me, educates me, and those who keep fighting along side of me. I promise to always be here and be a patient advocate until my last breath when I am old and gray.

xoxo,
Christina

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

9/19/2016

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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

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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/

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

9/12/2016

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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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5th Annual WeGo Health Activist Awards

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)

Follow Lady Of Lyme (@ladyoflyme)

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5th Annual WeGo Health Activist Awards

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)

Follow Lady Of Lyme (@ladyoflyme)

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