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.
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.
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
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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