Hello, friends and fam!
It's been over a year since I've posted an update, which means that it's been a year since I had my PICC line removed and stopped treating for Lyme disease altogether. A year!
There has been no better feeling in the world than being free of Lyme symptoms, pain, needles, IV lines, round-the-clock alarm clocks for medication reminders, appointments, lab draws, etc. etc. etc.
I just sighed the hugest sigh after finishing that last sentence. When I make myself stop and think back, it makes me lower my head, shake it, and my eyes fill with tears. What a difficult road it is, treating for Lyme and co-infections, let alone convincing everyone around you that you're battling a real disease. But I won't linger on that here (although more on that below).
I'm lingering on one year and counting of f r e e d o m. That's what it feels like. It felt like I was trapped for so long, and now I'm free.
We moved to Hawaii last August, which has afforded us time and a beautiful setting to be outdoors constantly -- walking, running, biking, swimming, etc. I haven't run and stuck with it in years, and I'm running again. The most miraculous thing is that I'm running and I don't have any pain... Not while I'm running, not after. I don't have fatigue either. I don't "pay for it" after putting in a work out. For the first time (in my entire life), I'm able to work out and feel what it's like to have more energy later. I'd always heard other people say that working out gave them energy, and doctors always told me that working out would help me and would give me more energy (nothing was farther from the truth for me, with Lyme). And for the first time in my life, it is the strangest thing to experience working out, enjoying it, and feeling good afterwards, too.
Every single day, as I head back home from my run, I look up at the sky and just say "thank you" over and over. I mentally scan every part of my body and notice how I'm pain-free and I'm strong. And every fiber of my being is filled with an unbelievable amount of gratitude.
As I pass this one year anniversary of stopping treatment and literally removing the physical attachment to illness (the PICC line), I'm full of reflection and an even greater sense of gratitude.
Wishing everyone health and love,
Kristen
-------------------------------------
Okay on another note, I'd like to chime in my two cents again on how real Lyme is, how it can be contracted anywhere, including Oregon, and how immediate, proper treatment is imperative to healing.
After 20 years of Lyme disease, six months into remission, and exactly one week before we moved to Hawaii, I contracted Lyme disease again.
I'll bring down the shock level by saying that I went to my Lyme doc immediately and got proper treatment, and we took care of it and I continue to be well. Thank the heavens.
Now let me bring the shock factor back up by saying that this isn't a guess. Lyme is one of the most controversial diseases out there, but did you know that all doctors agree upon one thing, and one thing only (regardless of what else they know or believe about Lyme)? The bulls'-eye rash is the only fool-proof identification that you've contracted Lyme. No one messes with the rash. That's the one thing, ONE THING that everyone can agree upon. I know I'm emphasizing that a lot, but the reason that's important is because you know where I was when that rash showed up this time? Beaverton, Oregon. In fact, I was sitting in our apartment when I noticed it on my wrist.
Let me also clarify that we had not been hiking, in the woods, in the brush, in tall grass, or anywhere else that the world still tells you that you have to be in order to even consider the possibility of contracting Lyme. We hadn't gone anywhere. We definitely hadn't left Oregon recently and we hadn't left Beaverton. I'd walked my dog around our neighborhood, and that's it. We were preparing to move across the ocean. I was busy finishing up lessons with my students and packing.
The other awesome part? My doctor agreed that the site of the bite looked like a spider bite. Yes, according to my Lyme-literate doctor, spiders carry Lyme disease too, and he wasn't a bit surprised. Go ahead and laugh (I see you hiding behind your screen). But I suppose regardless of which insect you think may have had to bite me, I had a standard bulls-eye rash, didn't I? And it was either from a tick in Beaverton, Oregon, if that's easier for your to believe; or it was from what appeared to be a spider bite in Beaverton, Oregon. Either way, the take-away here is a bulls-eye rash from Beaverton, Oregon.
So the next time you hear anyone say that Lyme doesn't exist in Oregon, or that they don't hike so there's no way they could have gotten it, or they've never been bitten by a tick, or they never found the tick, or any of the other dozens of excuses... Let me be very clear that I contracted it twice in Oregon, and I had the indisputable bulls-eye rash, both times, I repeat, in Oregon. So there's no arguing about that. I'm glad we've gotten that settled.
Let me also clarify that over HALF of people who contract Lyme don't get the bulls-eye rash, so don't let all this rash talk fool you into into thinking you have to have the rash to have Lyme, either. I'm just using my rashes as the one piece of agreeable evidence that Lyme exists in Oregon.
And now I'll step down off of my pedestal. Just, please know that Lyme is in Oregon. Lyme is everywhere. Don't be frightened, but don't be ignorant. :)
Saturday, February 2, 2019
Wednesday, January 3, 2018
Happy new year!
Happy new year, everyone!
It's been 6 months since my last update, and if you've been following my journey you've probably noticed that my updates have been fewer and farther between. This is a good thing! The better I feel, the less I write (apparently).
The new year always has a significant meaning to each person, usually based on circumstances. We hope that the new year will bring new or renewed opportunities, jobs, relationships, finances, friendships, health, etc... For me, for the last 5 years, I have hoped each new year that that would be the year that I became "well."
A year in review:
2017 was big for my well-being. I remember last February when Tyler and I were going to Germany, I was scared that it would be too hard on me. For the first time in years, it wasn't. I definitely still had rough days, but I was really, really amazed that I was able to handle all of the traveling/time changes/walking/exploring without too much pain or fatigue, and without paying for it later. I was finally starting to really feel like things were changing. That spring, as Lyme is known to do, it showed it's ugly side and I had some frightening old symptoms reappear, as well as some frightening new symptoms. My doctor wanted me to get another brain MRI, but since I'd had one fairly recently, we skipped that... But he insisted that we pull out the big guns and begin IV therapy.
I had been avoiding IV treatment for the last 3 years. I didn't want to pay for it and I didn't want to go through it. And to my surprise, it's been the IV treatment that kicked me into an entirely different level of well-being.
June through September of last year I was going in weekly to have an IV placed, then I would do IV treatments at home for the next couple of days, and I would remove the IV at the end of the 3rd day so that I would have 4 days off before doing the same thing again the following week (yes -- because many have asked me --this means I order needles, syringes, IV bags, IV tubing, and IV medications through a specialty compounding pharmacy, and I have learned to set it all up and hook myself up for infusions. No, I don't stick myself with the needle (!!!), which is I why I go in to the clinic to have the IV placed... I just mix the meds and prepare the tubing, hook myself up to the tubing, etc at home). We had to take a break in October, because my body pretty much started rejecting being poked every week (my veins had enough and were blowing every time they were accessed, it was harder and harder to find a usable vein, etc), and because my white blood cell count had dropped too low again. IV treatment had been working so well though, that my doctor insisted on beginning again as soon as my white blood cell counts were back up, and that it would be through the use of a PICC line, opposed to weekly IV placements.
For those that are unfamiliar, a PICC line is a Peripherally Inserted Central Catheter... It's a form of IV access that can be in place for an extended period of time (months to years), whereas peripheral IVs can only stay in place for a few days at a time. I'd been having peripheral IVs for months, which meant starting a new IV and poking to find a usable vein every week, and that's why my veins said "enough!" A PICC line is placed during a small procedure, using ultrasound and X-ray. The catheter is inserted through a vein in your upper arm, and then the catheter is guided toward the heart using ultrasound. They use X-ray to make sure it's placed properly. The picture below shows it better than I can describe. Clearly, the end of the catheter stays outside of your arm, which is where it can be accessed to hook up for treatments.
If there was anything I had been avoiding at all cost, it was a PICC line. It seemed way too invasive and expensive (for the record, insurance wouldn't touch it for me, because they knew it was for the treatment of Lyme disease, and the CDC and IDSA don't support treating Lyme disease beyond 28 DAYS and therefore the regulations in this country are just that. The letter of decline that I received informed me of how science shows that treatment doesn't work...). Anywho, I seriously didn't want a PICC line, because it felt like a defeat. It felt like a visible sign that I was sick, and I didn't want that. In fact, I was feeling so much better!
I had a PICC line placed on November 1. I was able to get on board since I'd been responding so well to IV treatment, but also because my doctor told me that as soon as we're done with IV antibiotics, we'd begin IV "clean up," which sounds refreshing. This means that once we think I'm in remission, we'll do some major detoxing to rid of all the crap we've been putting into my system for the last few years, and to clean up all the crap that the bacteria themselves leave behind. I guess I was like a little kid being told "if you get your flu shot, you'll get a lollipop afterwards!" The thought of the "treatment after the treatment" had me running to the facility to get the PICC placed. That was something good that was easier to focus on.
So, I've continued doing IV treatments at home through my PICC line since November 1. We switched medications in December, to something that would fight on the intracellular level. I have an appointment tomorrow, at which we'll likely switch to our 3rd and (hopefully) final IV med, which will act as a cyst-buster. If you recall, Lyme disease bacteria morph and hide when they sense invasion. They create and hide in cysts, which most treatment doesn't get to. Thus, the cyst-busting medications.
I have been feeling so well for so many months. I just have some small symptoms left over. I feel like I am so close to remission I can taste it. I'm praying that one month of a cyst-busting agent will do it, and that after that we'll be done with treatment. The next phase would be the "after treatment treatment," which I don't know a whole lot about yet, but I know it's major detoxing. We have a lot of months left of IV therapy, but I'm hoping the harsh IV treatments are coming to an end soon and we'll be on to clean-up mode!
There are so many changes coming for me and Tyler in 2018... One being a move to Hawaii later this year, and we're praying that another is remission for me. I can feel it, it's coming, and I begin 2018 hopeful and ready for change.
Please send up positive thoughts, prayers, whatever you can offer for continued healing! Love and light to you all!
Side note, and this is coming from a positive place: I find it hugely ironic that for all the years I felt horrible, no one took me seriously because it's an illness that you can't see. Now, I'm feeling the best I've felt in years, but I have an IV sticking out of my arm, and when people see it they lose their minds. It's something that is a clear indicator that something is wrong with me, and people treat me completely differently when they see it. It's been a really interesting lesson.
So please remember this (I know this is often said, but hear it again): We are all fighting battles. Some are visible and most are invisible to others. Treat everyone with kindness, because you have no idea what battles they are fighting. Just love.
It's been 6 months since my last update, and if you've been following my journey you've probably noticed that my updates have been fewer and farther between. This is a good thing! The better I feel, the less I write (apparently).
The new year always has a significant meaning to each person, usually based on circumstances. We hope that the new year will bring new or renewed opportunities, jobs, relationships, finances, friendships, health, etc... For me, for the last 5 years, I have hoped each new year that that would be the year that I became "well."
A year in review:
2017 was big for my well-being. I remember last February when Tyler and I were going to Germany, I was scared that it would be too hard on me. For the first time in years, it wasn't. I definitely still had rough days, but I was really, really amazed that I was able to handle all of the traveling/time changes/walking/exploring without too much pain or fatigue, and without paying for it later. I was finally starting to really feel like things were changing. That spring, as Lyme is known to do, it showed it's ugly side and I had some frightening old symptoms reappear, as well as some frightening new symptoms. My doctor wanted me to get another brain MRI, but since I'd had one fairly recently, we skipped that... But he insisted that we pull out the big guns and begin IV therapy.
I had been avoiding IV treatment for the last 3 years. I didn't want to pay for it and I didn't want to go through it. And to my surprise, it's been the IV treatment that kicked me into an entirely different level of well-being.
June through September of last year I was going in weekly to have an IV placed, then I would do IV treatments at home for the next couple of days, and I would remove the IV at the end of the 3rd day so that I would have 4 days off before doing the same thing again the following week (yes -- because many have asked me --this means I order needles, syringes, IV bags, IV tubing, and IV medications through a specialty compounding pharmacy, and I have learned to set it all up and hook myself up for infusions. No, I don't stick myself with the needle (!!!), which is I why I go in to the clinic to have the IV placed... I just mix the meds and prepare the tubing, hook myself up to the tubing, etc at home). We had to take a break in October, because my body pretty much started rejecting being poked every week (my veins had enough and were blowing every time they were accessed, it was harder and harder to find a usable vein, etc), and because my white blood cell count had dropped too low again. IV treatment had been working so well though, that my doctor insisted on beginning again as soon as my white blood cell counts were back up, and that it would be through the use of a PICC line, opposed to weekly IV placements.
For those that are unfamiliar, a PICC line is a Peripherally Inserted Central Catheter... It's a form of IV access that can be in place for an extended period of time (months to years), whereas peripheral IVs can only stay in place for a few days at a time. I'd been having peripheral IVs for months, which meant starting a new IV and poking to find a usable vein every week, and that's why my veins said "enough!" A PICC line is placed during a small procedure, using ultrasound and X-ray. The catheter is inserted through a vein in your upper arm, and then the catheter is guided toward the heart using ultrasound. They use X-ray to make sure it's placed properly. The picture below shows it better than I can describe. Clearly, the end of the catheter stays outside of your arm, which is where it can be accessed to hook up for treatments.
If there was anything I had been avoiding at all cost, it was a PICC line. It seemed way too invasive and expensive (for the record, insurance wouldn't touch it for me, because they knew it was for the treatment of Lyme disease, and the CDC and IDSA don't support treating Lyme disease beyond 28 DAYS and therefore the regulations in this country are just that. The letter of decline that I received informed me of how science shows that treatment doesn't work...). Anywho, I seriously didn't want a PICC line, because it felt like a defeat. It felt like a visible sign that I was sick, and I didn't want that. In fact, I was feeling so much better!
I had a PICC line placed on November 1. I was able to get on board since I'd been responding so well to IV treatment, but also because my doctor told me that as soon as we're done with IV antibiotics, we'd begin IV "clean up," which sounds refreshing. This means that once we think I'm in remission, we'll do some major detoxing to rid of all the crap we've been putting into my system for the last few years, and to clean up all the crap that the bacteria themselves leave behind. I guess I was like a little kid being told "if you get your flu shot, you'll get a lollipop afterwards!" The thought of the "treatment after the treatment" had me running to the facility to get the PICC placed. That was something good that was easier to focus on.
So, I've continued doing IV treatments at home through my PICC line since November 1. We switched medications in December, to something that would fight on the intracellular level. I have an appointment tomorrow, at which we'll likely switch to our 3rd and (hopefully) final IV med, which will act as a cyst-buster. If you recall, Lyme disease bacteria morph and hide when they sense invasion. They create and hide in cysts, which most treatment doesn't get to. Thus, the cyst-busting medications.
I have been feeling so well for so many months. I just have some small symptoms left over. I feel like I am so close to remission I can taste it. I'm praying that one month of a cyst-busting agent will do it, and that after that we'll be done with treatment. The next phase would be the "after treatment treatment," which I don't know a whole lot about yet, but I know it's major detoxing. We have a lot of months left of IV therapy, but I'm hoping the harsh IV treatments are coming to an end soon and we'll be on to clean-up mode!
There are so many changes coming for me and Tyler in 2018... One being a move to Hawaii later this year, and we're praying that another is remission for me. I can feel it, it's coming, and I begin 2018 hopeful and ready for change.
Please send up positive thoughts, prayers, whatever you can offer for continued healing! Love and light to you all!
Side note, and this is coming from a positive place: I find it hugely ironic that for all the years I felt horrible, no one took me seriously because it's an illness that you can't see. Now, I'm feeling the best I've felt in years, but I have an IV sticking out of my arm, and when people see it they lose their minds. It's something that is a clear indicator that something is wrong with me, and people treat me completely differently when they see it. It's been a really interesting lesson.
So please remember this (I know this is often said, but hear it again): We are all fighting battles. Some are visible and most are invisible to others. Treat everyone with kindness, because you have no idea what battles they are fighting. Just love.
Monday, July 31, 2017
3 Years
I remember at my first Lyme appointment, my doctor told me we could have up to a two year battle ahead of us, and I remember being horrified. Two years?? That seemed so long. It is long. Here we are three years later, and I just started IV treatments. Every Lyme battle is different. There's no one-size-fits-all, cure-all approach. Considering the fact that we're battling not just Lyme, which is in and of itself a monster, but the co-infections Bartonella, Babesia, and Ehrlichia (which are also each their own monster), in addition to high viral loads, mold toxicity, biotoxin illness, genetic susceptibility and difficulty eliminating toxins... and the fact that I've had all this for 19 years, I guess it's no wonder it's been three years already!
In July, 2014 I was re-diagnosed with Lyme. I started treatment that August. It's been a hell of a three year ride, but right now I can say that I am feeling close to remission. I'm not there, but I feel like I can see it.
Catching Up:
This last spring I had a pretty significant flare up though, with both old symptoms and some interesting (read: disturbing) new ones. It was significant enough for my doctor to say he wanted to do another brain MRI to check for MS again (I may have talked him out of this for now, since we did one last September...). He agreed that we could monitor closely for now. Most Lyme patients have flareups in the spring time anyhow. He insisted on starting IV antibiotics though (in addition to the 3 oral antibiotics and 3 herbal antibiotics). After almost three years of treatment, I should have been doing better than I was at that moment, and since I was having that significant of a flare up, he said the current protocol wasn't strong enough.
In addition, we had been and continued to do more labs, tests, etc. to check for heavy metal toxicity and anything else that could be causing overlapping symptoms and/or keeping me from getting better. I was really reluctant to start IV antibiotics for a lot of reasons, but in the end my doctor was right. We've avoided IV antibiotics for three years. It was time to do it.
IV Treatment:
I started on IV Rocephin mid-June and am currently continuing IV treatment (this will be my 8th week).
I go in to the clinic every Tuesday to get the IV placed somewhere in my hand/arm and to do a treatment as long as I'm there. The IV line stays in my arm for 3 days, so that I can do treatments by myself at home on Wednesday and Thursday. It's been an interesting learning process -- definitely things I never thought I'd have to learn. My nurse called me an IV pro the other day... That made me feel good, and also like "how did this become my life?" lol. It's really weird to connect yourself to tubing, have syringes and needles at home (FYI the needles are just for drawing the medication from the bottle it comes in, mixing it with the fluid, and then injecting it into the IV bag), to find somewhere to hang the bag and sit in your home while you infuse. It's nice to be in the comfort of your home, but also less comforting to not be in the care of medical professionals while you do it. The nurse taught me how to do everything, but thank goodness for my sister and sister-in-law (nurses) who answered so many questions for me. Jess FaceTimed with me during my first infusion to help talk me through everything again.
I go in to the clinic every Tuesday to get the IV placed somewhere in my hand/arm and to do a treatment as long as I'm there. The IV line stays in my arm for 3 days, so that I can do treatments by myself at home on Wednesday and Thursday. It's been an interesting learning process -- definitely things I never thought I'd have to learn. My nurse called me an IV pro the other day... That made me feel good, and also like "how did this become my life?" lol. It's really weird to connect yourself to tubing, have syringes and needles at home (FYI the needles are just for drawing the medication from the bottle it comes in, mixing it with the fluid, and then injecting it into the IV bag), to find somewhere to hang the bag and sit in your home while you infuse. It's nice to be in the comfort of your home, but also less comforting to not be in the care of medical professionals while you do it. The nurse taught me how to do everything, but thank goodness for my sister and sister-in-law (nurses) who answered so many questions for me. Jess FaceTimed with me during my first infusion to help talk me through everything again.
 |
| At the clinic |
 |
| At the clinic |
 |
| At home |
I was so scared to start IV meds, because I had no idea how they would make me feel. I figured it couldn't be any worse than anything else I'd been through, but IV meds seemed so much more intense to me, and I thought for sure that I'd have horrible herxes.
I am amazed that I pretty much haven't herxed at all. I am feeling so well, many of the symptoms that were bothering me before I started the IV have disappeared, and I'm probably feeling the best I've felt since starting treatment three years ago (and for the longest period of time... to me, that's a significant piece of the puzzle).
We increased the dose of the IV meds two weeks ago, and I did feel a difference (a tiny herx, with headache/neck stiffness and such), but it was tolerable compared to the past. Why am I not herxing terribly on this?? Honestly, I'm not entirely sure. I think it's a combination of things: we're 3 years into treatment, so the bacterial load is already way down; IV antibiotics are actually easier on your system since they bypass the gut; I think I'm doing a better job of detoxing and supporting kidney and liver function -- I'm pretty sure this has made a huge difference.
In any case, I am so thankful to be feeling as well as I do. In everything I do, I have thought to myself "thank you, God, for allowing me to do [this] again, pain free, or fatigue free..." Big things, like going to visit Tyler in Hawaii and not being in horrendous pain or too tired to be able to do anything; small things, like going to the grocery store, or running more than one errand back-to-back...
I definitely have a new outlook and appreciation of life and health. I know that sounds cliche, but I've never meant it more. Things can change so quickly, and I have the awareness that at any moment, Lyme could have the upper hand again. I look back at how sick I was, I read my old symptom journals or blogposts and cry tears of heartache, because I can't believe that I lived that life; and I cry tears of joy, because I am no longer living that life. I am so close, I know I am. I'm realistic in knowing that "close" could mean many more months before kicking it, but it's far more tolerable when I'm feeling mostly well. I seriously find joy in just going to the grocery store, because I am so happy to be strong enough to be able to do that; and to be able to walk my dog; and work out; and work; and NOT CRASH or be constantly trying to hide the fact that I'm in misery.
Please send love and light for me, that the IV treatment continues to work well for me and that I continue to tolerate them well. Please pray that I don't have any complications from the IV treatments, and that I continue to find renewed health and joy.
Please pray for my mama as she continues her fight against Lyme disease as well <3 She's a fighter.
Please pray for my mama as she continues her fight against Lyme disease as well <3 She's a fighter.
Monday, May 15, 2017
Are You Listening?
When interviewed in the documentary "Under Our Skin," Dr. Klinghardt of Seattle, WA says "we never had a -- in the last 5 years -- a single MS patient, a single ALS patient, a single Parkinson's patient who did not test positive for Borrelia Burgdorferi. Not a single one."
Wait, what did he just say? Rewind. "We never had a -- in the last 5 years -- a single MS patient, a single ALS patient, a single Parkinson's patient who did not test positive for Borrelia Burgdorferi. Not a single one."
What is Borrelia Burgdorferi? It's Lyme Disease. Borrelia are the bacteria that cause Lyme Disease.
What do I desperately want people to understand? Lyme Disease is called the "Great Imitator." That's quite a name to live up to. Why is it called that?
Lyme Disease mimics so many other diseases. Actually, depending on who you ask, Lyme Disease may be the cause of so many other diseases.
Watch Dr. Alan McDonald talk about how he found Borrelia Burgdorferi in 7 out of 10 Alzheimer's patients, and Dr. David Martz talk about how he had been diagnosed with ALS, given two years to live, and then when he got the diagnosis of Lyme Disease and started treatment, his ALS not only stopped progressing, but reversed.
https://www.youtube.com/watch?v=GCLwauRh2gQ
... What are they saying? That whether it's due to genetic factors, how they contracted the disease, the way the disease penetrated certain systems in their bodies, how long they had it -- whatever the case be -- that these diseases are Lyme Disease. There are thousands of similar stories in patients with the diseases listed below.
Are you listening yet?
Whether you believe or don't believe that Lyme Disease can cause the following diseases, Lyme Disease sure as hell mimics them. No one argues otherwise.
Imitated Diseases:
-Multiple Sclerosis (MS)
-ALS (Amyotrophic Lateral Sclerosis / Lou Gehrig's Disease
-Parkinson's
-Chronic Fatigue Syndrome
-Fibromyalgia
-Alzheimer's
-Rheumatoid Arthritis
-Lupus
-Autism
-Flu
Do I find it unbelievably infuriating, horrifying and fascinating that Lyme Disease mimics major neurologic diseases that we have names for but don't know what causes them? How can that be? A disease for which there is a known cause, causes all of the symptoms of other diseases for which there is no known cause...
Look at the vagueness of the definitions of the following diseases, how much they all overlap, and how all of those symptoms are symptoms of Lyme Disease as well. It's believed that Lyme affects people differently because of a number of reasons... Your genetic susceptibility, age, how you were infected, what diseases you were infected with (co-infections), how long you've been infected, etc. So essentially, the diseases below could be the same disease, presenting itself differently in different people based on a number of factors.
Parkinson's: (nervous system / movement)
"Parkinson's Disease is a progressive disorder of the nervous system that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in one hand. But while a tremor may be the most well known symptom of Parkinson's, the disorder also commonly causes stiffness or slowing of movement. In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time.
Multiple Sclerosis: (central nervous system / symptoms may get worse very quickly or come and go over time...)
Below are a list of symptoms (and this is not a complete list) of Lyme Disease, and this doesn't include each co-infection of Lyme Disease:
List of potential symptoms (I say "potential," because every single case is different):
-Joint pain and swelling
-Psychosis
-Depression
-Anxiety
-OCD
-Cardiac irregularity
-Chest pain/heart palpitations/pulse skips/heart block
-History of heart murmur or valve prolapse
-Rib soreness
-Twitching of muscles
-Unexplained weight loss/gain
-Abdominal cramping/pain
-Increased motion sickness/vertigo
-Tremors
-Irritable bladder, bladder pain, chronic urinary tract infections
-Buzzing, ear ringing, ear pain
-Fever
-Hair loss
-Double/blurry vision, floaters
-Abnormal aversion to bright light
-Unexplained fevers, sweats, chills
-Cough
-Shortness of breath
-Testicular/pelvic pain
-Neck creaks, cracks, stiffness
-Joint or back stiffness
-Muscle pain or cramps
-Insomnia, disturbed sleep (too much, too little, early awakening)
-Exaggerated symptoms or worse hangover from alcohol
-TMJ (jaw pain)
-Headaches
-Tingling or numbness
-Burning or stabbing sensations
-Poor balance
-Difficulty walking
-Dizziness
-Personality changes
-Mood swings or irritability
-Confusion
-Disorientation
-Difficulty concentrating or reading
-Gastritis
-Menstrual irregularity
-Loss of libido
-Trouble speaking
-Nausea or vomiting
-Facial twitching or Bell's Palsy
-Sore throat
-Swollen glands
-Diarrhea or constipation
What about common symptoms of infection in children?
-severe fatigue unrelieved by rest
-insomnia
-headaches
-nausea, abdominal pain
-impaired concentration
-poor short-term memory
-inability to sustain attention
-difficulty thinking and expressing thoughts
-difficulty reading and writing
-being overwhelmed by schoolwork
-difficulty making decisions
-confusion
-uncharacteristic behavior
-outburts and mood swings
-fevers/chills
-joint pain
-dizziness
-noise and light sensitivity
What about symptoms in children who may have been born with Lyme?
-frequent fevers
-increased incidence of ear and throat infections
-increased incidence of pneumonia
-irritability
-joint and body pain
-poor muscle tone
-gastroesophageal reflux
-small windpipe
-cataracts and other eye problems
-developmental delay
-learning disabilities
-psychiatric manifestations
Just in case you're thinking "well that's a lot of possible symptoms... How do you know Lyme Disease isn't actually Chronic Fatigue Syndrome, or Fibromyalgia, or something else, you crazy...?" Because those diseases, the way they're defined, are just names with a list of symptoms for which there is no known cause or cure. People with the symptoms of those diseases have later been proven to be infected with Borrelia Burgdorferi (Lyme Disease).
Wait, what did he just say? Rewind. "We never had a -- in the last 5 years -- a single MS patient, a single ALS patient, a single Parkinson's patient who did not test positive for Borrelia Burgdorferi. Not a single one."
What is Borrelia Burgdorferi? It's Lyme Disease. Borrelia are the bacteria that cause Lyme Disease.
What do I desperately want people to understand? Lyme Disease is called the "Great Imitator." That's quite a name to live up to. Why is it called that?
Lyme Disease mimics so many other diseases. Actually, depending on who you ask, Lyme Disease may be the cause of so many other diseases.
Watch Dr. Alan McDonald talk about how he found Borrelia Burgdorferi in 7 out of 10 Alzheimer's patients, and Dr. David Martz talk about how he had been diagnosed with ALS, given two years to live, and then when he got the diagnosis of Lyme Disease and started treatment, his ALS not only stopped progressing, but reversed.
https://www.youtube.com/watch?v=GCLwauRh2gQ
... What are they saying? That whether it's due to genetic factors, how they contracted the disease, the way the disease penetrated certain systems in their bodies, how long they had it -- whatever the case be -- that these diseases are Lyme Disease. There are thousands of similar stories in patients with the diseases listed below.
Are you listening yet?
Whether you believe or don't believe that Lyme Disease can cause the following diseases, Lyme Disease sure as hell mimics them. No one argues otherwise.
Imitated Diseases:
-Multiple Sclerosis (MS)
-ALS (Amyotrophic Lateral Sclerosis / Lou Gehrig's Disease
-Parkinson's
-Chronic Fatigue Syndrome
-Fibromyalgia
-Alzheimer's
-Rheumatoid Arthritis
-Lupus
-Autism
-Flu
Do I find it unbelievably infuriating, horrifying and fascinating that Lyme Disease mimics major neurologic diseases that we have names for but don't know what causes them? How can that be? A disease for which there is a known cause, causes all of the symptoms of other diseases for which there is no known cause...
Look at the vagueness of the definitions of the following diseases, how much they all overlap, and how all of those symptoms are symptoms of Lyme Disease as well. It's believed that Lyme affects people differently because of a number of reasons... Your genetic susceptibility, age, how you were infected, what diseases you were infected with (co-infections), how long you've been infected, etc. So essentially, the diseases below could be the same disease, presenting itself differently in different people based on a number of factors.
Fibromyalgia: (musculoskeletal / hallmark is pain, with other things...)
"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help."
Chronic Fatigue Syndrome: (hallmark is fatigue, with other things...)
"Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.
Chronic fatigue syndrome has eight different signs and symptoms:
-Fatigue
-Loss of memory or concentration
-Sore throat
-Enlarged lymph nodes in your neck or armpits
-Unexplained muscle pain
-Pain that moves from one joint to another without swelling or redness
-Headache of a new type, pattern, or severity
-Extreme exhaustion lasting more than 24 hours after physical or mental exercise.
The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors.
There's no single test to confirm a diagnosis of chronic fatigue syndrome. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on symptom relief."
Parkinson's: (nervous system / movement)
"Parkinson's Disease is a progressive disorder of the nervous system that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in one hand. But while a tremor may be the most well known symptom of Parkinson's, the disorder also commonly causes stiffness or slowing of movement. In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time.
Although Parkinson's disease can't be cured, medications may markedly improve your symptoms. In occasional cases, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms."
Multiple Sclerosis: (central nervous system / symptoms may get worse very quickly or come and go over time...)
"Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system).
In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged.
Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms.
There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms."
ALS: (nervous system / progressive, eventually fatal)
"Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), or ALS, is a progressive nervous system (neurological) disease that destroys nerve cells and causes disability.
ALS is often called Lou Gehrig's disease, after the famous baseball player who was diagnosed with it. ALS is a type of motor neuron disease in which nerve cells gradually break down and die.
Doctors usually don't know why ALS occurs. Some cases are inherited.
ALS often begins with muscle twitching and weakness in a limb, or slurred speech. Eventually, ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for ALS, and eventually the disease is fatal."
Can I point out that often times these diseases run in families... And they don't know why. But did you know that Lyme Disease can be passed sexually and from mother to child during birth?
Below are a list of symptoms (and this is not a complete list) of Lyme Disease, and this doesn't include each co-infection of Lyme Disease:
-Joint pain and swelling
-Psychosis
-Depression
-Anxiety
-OCD
-Cardiac irregularity
-Chest pain/heart palpitations/pulse skips/heart block
-History of heart murmur or valve prolapse
-Rib soreness
-Twitching of muscles
-Unexplained weight loss/gain
-Abdominal cramping/pain
-Increased motion sickness/vertigo
-Tremors
-Irritable bladder, bladder pain, chronic urinary tract infections
-Buzzing, ear ringing, ear pain
-Fever
-Hair loss
-Double/blurry vision, floaters
-Abnormal aversion to bright light
-Unexplained fevers, sweats, chills
-Cough
-Shortness of breath
-Testicular/pelvic pain
-Neck creaks, cracks, stiffness
-Joint or back stiffness
-Muscle pain or cramps
-Insomnia, disturbed sleep (too much, too little, early awakening)
-Exaggerated symptoms or worse hangover from alcohol
-TMJ (jaw pain)
-Headaches
-Tingling or numbness
-Burning or stabbing sensations
-Poor balance
-Difficulty walking
-Dizziness
-Personality changes
-Mood swings or irritability
-Confusion
-Disorientation
-Difficulty concentrating or reading
-Gastritis
-Menstrual irregularity
-Loss of libido
-Trouble speaking
-Nausea or vomiting
-Facial twitching or Bell's Palsy
-Sore throat
-Swollen glands
-Diarrhea or constipation
What about common symptoms of infection in children?
-severe fatigue unrelieved by rest
-insomnia
-headaches
-nausea, abdominal pain
-impaired concentration
-poor short-term memory
-inability to sustain attention
-difficulty thinking and expressing thoughts
-difficulty reading and writing
-being overwhelmed by schoolwork
-difficulty making decisions
-confusion
-uncharacteristic behavior
-outburts and mood swings
-fevers/chills
-joint pain
-dizziness
-noise and light sensitivity
What about symptoms in children who may have been born with Lyme?
-frequent fevers
-increased incidence of ear and throat infections
-increased incidence of pneumonia
-irritability
-joint and body pain
-poor muscle tone
-gastroesophageal reflux
-small windpipe
-cataracts and other eye problems
-developmental delay
-learning disabilities
-psychiatric manifestations
Just in case you're thinking "well that's a lot of possible symptoms... How do you know Lyme Disease isn't actually Chronic Fatigue Syndrome, or Fibromyalgia, or something else, you crazy...?" Because those diseases, the way they're defined, are just names with a list of symptoms for which there is no known cause or cure. People with the symptoms of those diseases have later been proven to be infected with Borrelia Burgdorferi (Lyme Disease).
Are you listening?
Saturday, February 25, 2017
Still Moving Along...
And just like that it's been another 4.5 months since my last post. Things continually change and I continually wait for more test results or appointments before writing again... Fall and winter have been overall up and down, but still overall up!
Treatment has been continuous, but eased off of and hit hard again a few times throughout the season for a couple of reasons:
Surgery:
If you recall, I had an MRI done last fall to basically make sure we weren't dealing with a neurodegenerative disease on top of Lyme and co-infections. Thankfully that was ruled out, but we found mold toxicity in my brain and cysts in my sinuses. We're still working on figuring out the mold toxicity, but I did meet with an ENT to go over the MRI results and get his perspective on the cysts and whether or not they were dangerous. Turns out we decided to leave the cysts alone, because they would've had to scrape the edges of my sinuses to get them entirely (owww...), which would leave scar tissue, and they often times grow back anyway. It wasn't worth it to me if they weren't thought to be harmful... But unexpectedly to me, and unrelated to Lyme, we also determined just how bad my deviated septum was, and that I had concha bullosa and bone spurs that were also blocking my airway. Now I know why it's been so hard to breathe out of my nose for so many years!
Although these weren't the things that sent me to the ENT to begin with, it was good to find some answers to my breathing woes. After talking it over with my Lyme doctor, I decided to go ahead and have the surgery to excise the concha bullosa and bone spurs, and repair the septum, because you know, breathing is important. The surgery was successful in that my airway is clear for what feels like the first time in 10-15 years! Apparently it'll still be healing for the next 6 months or so, but the difference is already awesome. I'm thankful that the surgery didn't set off any major Lyme flare, which was a concern.
In regards to treatment during this... I started Rifampin at the beginning of December, which I'm familiar with because I took it for a long time with my previous doctor. The goal was to start this before surgery in order to simultaneously fight Lyme and co-infections, as well as the MARCoNS infection that we'd recently found out that I had in my nasal passages. We wanted to get that under control before surgery on December 20th and Rifampin is one of the only things that can knock that out.
I did ease off of my other antibiotics during December (Flagyl, Alinia and Malarone) because I didn't want to be having a severe herx reaction and dealing with the aftermath of surgery at the same time.
When I started back up on Flagyl in January I had a pretty good herx reaction (and by "good" I mean terrible) with headaches, chills, migrating pain, zapped energy, heart palpitations and internal tremors so bad it brought me to tears. I'm glad I eased off during surgery. That would've been awful.
When I started back up on Flagyl in January I had a pretty good herx reaction (and by "good" I mean terrible) with headaches, chills, migrating pain, zapped energy, heart palpitations and internal tremors so bad it brought me to tears. I'm glad I eased off during surgery. That would've been awful.
Europe:
Due to January's herx, I decided to take it easy again and cut back on treatment while Tyler and I traveled to Europe at the beginning of February. I didn't want to be in severe pain or not have any energy to keep up due to herxing. It was actually pretty amazing, and we feel as though that trip was a testament to how much I've improved overall. I didn't experience horrible neck, back, or hip pain on the 10 hour flight to Amsterdam, or the flight to Munich, or the two hour bus ride to Garmisch (just some pretty bad, but short-lived neurologic hand and arm pain), which you have to understand is the most shocking thing in the world. Often times it's hard to sit in a car for 30 minutes. My joints and muscles usually can't handle it. Somehow they handled our trip like a champ, and I was able to walk and walk and enjoy all the sights without being in pain or fatigued. I wondered if pushing so hard would catch up with me, but it didn't seem to much (at least not like I expected it to).
Now:
I started back up on my full protocol on the 16th, and so far I haven't had the kind of herx reaction that I expected... I've had an increase in internal tremors again, but I haven't had the severe head/neck/jaw pain that usually accompanies my Flagyl herxes. I'm thankful for that.
My next appointment is at the beginning of March and I'm curious to see what our plan of action will be at that point. At my last appointment, we'd discussed taking an antibiotic break soon-- maybe in March or April-- to both give my body a break from them, and to trick any hiding bugs into thinking we've stopped treating so that they come out of the woodwork... Then we'll hit them hard again... Positive thoughts for the possible upcoming antibiotic vacation. Coming off of treatment is always scary as we wait for a possible relapse.
Overall I feel like I'm starting to feel more like a normal self again... I say "a normal self" and not "my normal self" because "my normal" has been so abnormal for so many years. I think I'm gaining a new baseline. I'm realizing lately that I'm having some moments of feeling so well that I'm shocked because I never thought I could feel like this... Like realizing that my hips don't click and hurt when I walk anymore... Like, at all. They used to never NOT click... For about 18 years... I knew it was from Lyme, but I guess it was something that I thought would never go away. And it has. My biggest, most consistent and long-time symptom has gone away. That is incredible. Reminders like that have given me a different sense of hope. That feels really good.
On we go.
Wednesday, September 28, 2016
Moving Along
Yikes, it has been quite a while... Things were changing so much and I was continually waiting for more test results before I posted again, and now 4.5 months have passed!
Things we've been working on:
At my June appointment, my doctor found that my white blood cell counts were really low. He speculated a couple of possible reasons: that we were pushing too hard with treatment and my body needed a break to catch up, or that there was a problem with my bone barrow. I was concerned about the latter because my old doctor would tell me at every appointment "your white blood cell counts are on the low-end, but nothing I'm too worried about yet. Just something to keep an eye on..." And my new doctor had been saying the exact same thing to me since I started seeing him last December. Every month it was "something to keep an eye on," and every month I wondered if they remembered that they'd told me that for the last two years. My doctor said the low count was likely from treating too hard, so we didn't really have an option but to stop treating for a little while-- that way we could give my body a break and a chance to build my white blood cell count back up, and then re-check my counts to make sure they started climbing again. If they didn't go back up after stopping treatment, we'd know we need to do more testing and look at my bone marrow.
Stopping treatment was rough. My doctor told me to stop for as long as I could without relapsing. He told me to start treating again at the first sign of relapse.
The first week off was difficult and I thought "there's no way I can stay off." But I pushed through and things started to calm down for a little bit, so I went with it. Over the next few weeks, I felt pretty well overall, but started to slowly have old symptoms pop up-- mostly pain. I find that there are certain types of pain that I tend to try to push through more than others. There's the pain that I've had since I was a kid, which I think I push through just because I'm so freaking used to it. And then there's the more neurological stuff that just plain freaks me out.
When it's joint pain or something that I've experienced since I was a kid, I get this feeling again of "this isn't that big of a deal, I'm fine, I'm FINE." It's complete denial. I should know now, after having had those symptoms disappear for a while, that they're not normal. It feels so normal that I trick myself into thinking nothing's wrong. I'd be running and in pretty severe pain but would push harder, thinking "you can't stop me from being strong anymore. I'm fine, I can push through this." And I mostly pushed through that pain (not to be misread that overcoming Lyme is a matter of will-power. That's absolutely not true, clearly). But then Lyme pushed back at me harder and started giving me other types of pain that I know are a really bad sign when I get them.
Sharp, stabbing, sudden, shooting pains that literally bring me to my knees. At one point I was standing at the kitchen counter and one of those episodes struck and I wailed and held onto the counter and then slid my way down to the floor. They were quick stabs, like I was literally being repeatedly stabbed with a knife. It would hit me and be excruciating, then stop for a moment, then hit me harder, then stop for a few moments, then hit me again. Tears were streaming down my face and I would slowly stand up, wondering if it was going to happen again or if the episode was over. Fun.
After enough of those episodes I snapped out of my denial and thought "well this definitely isn't a good sign..."
I was off treatment for just over a month. My bloodwork showed that my white blood cell counts did increase again when I stopped treating-- thank the heavens! We know that my low counts are from overtaxing those cells. At my last appointment in July, shortly after I'd started treating again, my bloodwork showed that my white blood cell counts went back down. Ugh. So we have this battle...
My doctor didn't like the sound of my relapse and said "we still have our work cut out for us..." I despise those words because I know he's right. I'm tired, but the battle is far from over. These little jerks are hiding, and we need to dig even deeper. That being said, I am unbelievably thankful for how far I've come in in the last two years. Thinking back to how I was doing two summers ago, it literally brings me to tears. I don't know how I lived like that. I was in extreme pain, 24 hours a day, and had such extreme fatigue and weakness that I had to sit down in the shower and sit down after walking about 15 feet. And no one could tell me what was wrong. In fact, I was told nothing was wrong. Right now I'm running again, and working out pretty hard. It feels so good.
So we continue moving forward, delicately balancing what my body needs in order to keep my white blood cell counts up and my body fighting a good fight, and what it needs to continue moving forward fighting Lyme and co-infections, without losing the ground we've made there.
Speaking of co-infections:
We also ran a new test, which tests for Lyme, as well as a number of the co-infections (I'd shown positive for Lyme Disease, but had never had tests done to check what co-infections I had). My doctor told me that after treating for 2 years, he would hope that I'd be in remission, so there's something we're missing, something that's keeping me from getting well... Co-infections are one of those things. We'd treated for Bartonella, and even for Babesia a little bit just based on the fact that I had symptoms for those infections, but he wanted to know exactly what we were dealing with so we could move forward attacking those things more effectively.
My results were positive for two strains of Lyme, Bartonella, Babesia, and Ehrlichia. Woof.
In addition:
I had a pretty terrible episode at the beginning of August, which felt like it came out of nowhere. I'd been doing mostly fine, and then one evening when Ty and I were at his parents' house for dinner, I was like "hmm, suddenly my back hurts terribly... Must be from carrying my nephew around all morning..." And within 30 minutes I looked at Tyler and said "I really don't feel good." This was a pretty good indication of what was to come, because I never tell anyone I don't feel good unless something is very, very wrong.
I could feel this episode coming on, and it felt awful. My skin started to hurt-- my entire body-- just hurt, in the weirdest and most uncomfortable way. This wasn't my usual joint pain or sharp/stabbing/shooting pains, it was general pain of my skin... Like underneath my skin was lined with something painful.. Almost like electricity? (electric sensations are not uncommon for me, this is just a quite severe case)... It was so bad that by the time we got home, even trying to respond to Tyler's questions was painful. Talking was painful. Breathing was painful. Any movement of my body whatsoever was excruciating. It lasted all night and thank God when I woke up the next day it was gone.
Not just Lyme & Co-Infections:
Sooo, at my next appointment I just briefly mentioned this episode in a manner that was like "well, I did have this weird evening that was really bad, but it was that isolated incident and I've been mostly well the entire rest of the month, so, I'm doing well.." Turned out my doctor didn't like the sounds of that episode at all (...shocking). He actually told me he was worried about MS or another neurodegenerative disease (Lyme can turn into these other diseases...), which shocked me that he admitted those things to me so bluntly. He ordered a brain MRI with a neuroquant analysis (extra imaging-- more on this later) to rule out these possibilities, but also to determine the level of likely inflammation in the brain and the cause(s). Like I mentioned before, my doctor keeps saying "you've been treating long enough, there's something else that's keeping you from getting completely into remission." So we've been working on figuring out what those other things are... Knowing what co-infetions we're fighting was one thing. The MRI would shed some more light on what we're missing.
I had an appointment and got those results this morning. Drumroll please... My MRI showed no abnormalities (no lesions or anything indicative of MS..). Hallelujah! What was really fascinating to me was the neuroquant analysis. These results showed abnormal sizes of certain parts of my brain. He said this is common with Lyme and mold toxicity... Specifically from biotoxins from each of these, which cause swelling of the brain. My neuroquant analysis shows that I have swelling and inflammation from both Lyme and mold, mostly mold! If you don't know much about mold toxicity, this isn't the best news. My doctor is sending the results to another doctor so the neuroquant results can be more thoroughly analyzed, so we can figure out exactly how to proceed.
The MRI did show cysts in my sinuses, which my doctor wants me to follow up with an ENT about. I had an MRI about 10 years ago after a strange episode, and it showed the same thing back then... And I did see an ENT in college when I got my tonsils out, but I don't recall going over my old MRI results. It's on the agenda.
The MRI yielded great information... We ruled out MS and degenerative diseases, and found swelling and inflammation from not just Lyme, but mold toxicity. Now we know mold toxicity is one other thing that's keeping me from getting into remission.
We're also re-testing my viral loads, because we haven't checked them for over 2 years, and 2 years ago my viral loads were off the charts. This is also a huge contributor to not getting better.
So, we continue to chip away the pieces. I'm continuing to treat Lyme, Bartonella, and Ehrlichia with Azithromycin and Bactrim, and pulse in Alinia for two weeks on, two weeks off, and am doing a trial pulse of Flagyl for the two weeks I'm not on Alinia; and I pulse in Malarone for 4 days every two weeks to treat Babesia when I'm not taking the Alinia (got that?... Ugh).
I feel good that we've discovered new things in the last few months that are aiding in the effectiveness of my treatment. Remission is out there.
Things we've been working on:
At my June appointment, my doctor found that my white blood cell counts were really low. He speculated a couple of possible reasons: that we were pushing too hard with treatment and my body needed a break to catch up, or that there was a problem with my bone barrow. I was concerned about the latter because my old doctor would tell me at every appointment "your white blood cell counts are on the low-end, but nothing I'm too worried about yet. Just something to keep an eye on..." And my new doctor had been saying the exact same thing to me since I started seeing him last December. Every month it was "something to keep an eye on," and every month I wondered if they remembered that they'd told me that for the last two years. My doctor said the low count was likely from treating too hard, so we didn't really have an option but to stop treating for a little while-- that way we could give my body a break and a chance to build my white blood cell count back up, and then re-check my counts to make sure they started climbing again. If they didn't go back up after stopping treatment, we'd know we need to do more testing and look at my bone marrow.
Stopping treatment was rough. My doctor told me to stop for as long as I could without relapsing. He told me to start treating again at the first sign of relapse.
The first week off was difficult and I thought "there's no way I can stay off." But I pushed through and things started to calm down for a little bit, so I went with it. Over the next few weeks, I felt pretty well overall, but started to slowly have old symptoms pop up-- mostly pain. I find that there are certain types of pain that I tend to try to push through more than others. There's the pain that I've had since I was a kid, which I think I push through just because I'm so freaking used to it. And then there's the more neurological stuff that just plain freaks me out.
When it's joint pain or something that I've experienced since I was a kid, I get this feeling again of "this isn't that big of a deal, I'm fine, I'm FINE." It's complete denial. I should know now, after having had those symptoms disappear for a while, that they're not normal. It feels so normal that I trick myself into thinking nothing's wrong. I'd be running and in pretty severe pain but would push harder, thinking "you can't stop me from being strong anymore. I'm fine, I can push through this." And I mostly pushed through that pain (not to be misread that overcoming Lyme is a matter of will-power. That's absolutely not true, clearly). But then Lyme pushed back at me harder and started giving me other types of pain that I know are a really bad sign when I get them.
Sharp, stabbing, sudden, shooting pains that literally bring me to my knees. At one point I was standing at the kitchen counter and one of those episodes struck and I wailed and held onto the counter and then slid my way down to the floor. They were quick stabs, like I was literally being repeatedly stabbed with a knife. It would hit me and be excruciating, then stop for a moment, then hit me harder, then stop for a few moments, then hit me again. Tears were streaming down my face and I would slowly stand up, wondering if it was going to happen again or if the episode was over. Fun.
After enough of those episodes I snapped out of my denial and thought "well this definitely isn't a good sign..."
I was off treatment for just over a month. My bloodwork showed that my white blood cell counts did increase again when I stopped treating-- thank the heavens! We know that my low counts are from overtaxing those cells. At my last appointment in July, shortly after I'd started treating again, my bloodwork showed that my white blood cell counts went back down. Ugh. So we have this battle...
My doctor didn't like the sound of my relapse and said "we still have our work cut out for us..." I despise those words because I know he's right. I'm tired, but the battle is far from over. These little jerks are hiding, and we need to dig even deeper. That being said, I am unbelievably thankful for how far I've come in in the last two years. Thinking back to how I was doing two summers ago, it literally brings me to tears. I don't know how I lived like that. I was in extreme pain, 24 hours a day, and had such extreme fatigue and weakness that I had to sit down in the shower and sit down after walking about 15 feet. And no one could tell me what was wrong. In fact, I was told nothing was wrong. Right now I'm running again, and working out pretty hard. It feels so good.
So we continue moving forward, delicately balancing what my body needs in order to keep my white blood cell counts up and my body fighting a good fight, and what it needs to continue moving forward fighting Lyme and co-infections, without losing the ground we've made there.
Speaking of co-infections:
We also ran a new test, which tests for Lyme, as well as a number of the co-infections (I'd shown positive for Lyme Disease, but had never had tests done to check what co-infections I had). My doctor told me that after treating for 2 years, he would hope that I'd be in remission, so there's something we're missing, something that's keeping me from getting well... Co-infections are one of those things. We'd treated for Bartonella, and even for Babesia a little bit just based on the fact that I had symptoms for those infections, but he wanted to know exactly what we were dealing with so we could move forward attacking those things more effectively.
My results were positive for two strains of Lyme, Bartonella, Babesia, and Ehrlichia. Woof.
In addition:
I had a pretty terrible episode at the beginning of August, which felt like it came out of nowhere. I'd been doing mostly fine, and then one evening when Ty and I were at his parents' house for dinner, I was like "hmm, suddenly my back hurts terribly... Must be from carrying my nephew around all morning..." And within 30 minutes I looked at Tyler and said "I really don't feel good." This was a pretty good indication of what was to come, because I never tell anyone I don't feel good unless something is very, very wrong.
I could feel this episode coming on, and it felt awful. My skin started to hurt-- my entire body-- just hurt, in the weirdest and most uncomfortable way. This wasn't my usual joint pain or sharp/stabbing/shooting pains, it was general pain of my skin... Like underneath my skin was lined with something painful.. Almost like electricity? (electric sensations are not uncommon for me, this is just a quite severe case)... It was so bad that by the time we got home, even trying to respond to Tyler's questions was painful. Talking was painful. Breathing was painful. Any movement of my body whatsoever was excruciating. It lasted all night and thank God when I woke up the next day it was gone.
Not just Lyme & Co-Infections:
Sooo, at my next appointment I just briefly mentioned this episode in a manner that was like "well, I did have this weird evening that was really bad, but it was that isolated incident and I've been mostly well the entire rest of the month, so, I'm doing well.." Turned out my doctor didn't like the sounds of that episode at all (...shocking). He actually told me he was worried about MS or another neurodegenerative disease (Lyme can turn into these other diseases...), which shocked me that he admitted those things to me so bluntly. He ordered a brain MRI with a neuroquant analysis (extra imaging-- more on this later) to rule out these possibilities, but also to determine the level of likely inflammation in the brain and the cause(s). Like I mentioned before, my doctor keeps saying "you've been treating long enough, there's something else that's keeping you from getting completely into remission." So we've been working on figuring out what those other things are... Knowing what co-infetions we're fighting was one thing. The MRI would shed some more light on what we're missing.
I had an appointment and got those results this morning. Drumroll please... My MRI showed no abnormalities (no lesions or anything indicative of MS..). Hallelujah! What was really fascinating to me was the neuroquant analysis. These results showed abnormal sizes of certain parts of my brain. He said this is common with Lyme and mold toxicity... Specifically from biotoxins from each of these, which cause swelling of the brain. My neuroquant analysis shows that I have swelling and inflammation from both Lyme and mold, mostly mold! If you don't know much about mold toxicity, this isn't the best news. My doctor is sending the results to another doctor so the neuroquant results can be more thoroughly analyzed, so we can figure out exactly how to proceed.
The MRI did show cysts in my sinuses, which my doctor wants me to follow up with an ENT about. I had an MRI about 10 years ago after a strange episode, and it showed the same thing back then... And I did see an ENT in college when I got my tonsils out, but I don't recall going over my old MRI results. It's on the agenda.
The MRI yielded great information... We ruled out MS and degenerative diseases, and found swelling and inflammation from not just Lyme, but mold toxicity. Now we know mold toxicity is one other thing that's keeping me from getting into remission.
We're also re-testing my viral loads, because we haven't checked them for over 2 years, and 2 years ago my viral loads were off the charts. This is also a huge contributor to not getting better.
So, we continue to chip away the pieces. I'm continuing to treat Lyme, Bartonella, and Ehrlichia with Azithromycin and Bactrim, and pulse in Alinia for two weeks on, two weeks off, and am doing a trial pulse of Flagyl for the two weeks I'm not on Alinia; and I pulse in Malarone for 4 days every two weeks to treat Babesia when I'm not taking the Alinia (got that?... Ugh).
I feel good that we've discovered new things in the last few months that are aiding in the effectiveness of my treatment. Remission is out there.
Thursday, May 19, 2016
I'm Not Alone
If there is one reason I started this blog, it's for the sheer purpose of spreading awareness. How many of you had heard of Lyme Disease before you started reading this? How many of you know someone who had/has Lyme Disease other than me? Probably not very many of you... But not for the reason you think...
The more I blog, the more I get the sense that I have a lot of people who are reading my blog. Excellent. First mission accomplished! Awareness is clearly spreading and that is the number one goal.
The more I blog, the more I get the sense that other people are seeing me as one isolated case; one random, poor girl who has a rare disease that no one knows anything about; one person that you should feel bad for.
If there's one thing I have become desperate for people to understand, it's that I am none of those things. None of them. I am not an isolated case. The disease I have isn't rare, and doesn't only affect me.
The Center for Disease Control says that in the United States there are 300,000 new Lyme diagnoses per year. Do you know how hard it is to get a Lyme Diagnosis?? Especially according to CDC standards (they're outrageously high. Most people who have Lyme test negative by CDC standards...)?? It took me 17 years to get re-diagnosed after my initial infection at age 10. 17 YEARS! There are 300,000 confirmed new cases of Lyme Disease per year according to the CDC, with outrageous standards. That's quite a few people. Now think about all the people who are walking around with it and have no idea they have it yet. We are talking about hundreds of thousands of people in the U.S. alone. Lyme is present on every continent, including Antarctica now (recent finding). There are over 300 strains of Lyme Disease worldwide and 100 strains present in the United States. Do you know how many strains they test for? Take a guess...
One. One strain. There are one HUNDRED strains in the U.S. And couldn't it be possible that some people living in the U.S. contracted their disease while abroad? They test for one strain. If you don't test positive, apparently you "don't have Lyme Disease." Okay, NOW imagine that 300,000 people happen to get CDC positive tests results in a year based off of a test for ONE strain. There are 100 strains. And those 300,000 people with positive blood tests are the lucky ones who even got to the point of taking a blood test (see my 17 year waiting period above)!
Is this starting to sink in?
Now add the co-infections. When you're initially infected (likely by a tick bite, but not in all cases), it's a lottery as to what combination of diseases you'll get. Perhaps that tick was carrying just Lyme Disease. Perhaps it had Lyme and Babesia. Perhaps it had Lyme, Babesia, Bartonella, and Erlichiosis... Perhaps it was carrying one of the other infections and not Lyme at all. The initial tests for Lyme Disease test for just that-- Lyme Disease. And the initial tests are laughably inaccurate and miss HALF of the cases who are chronically ill. And what about the hundreds of thousands of people who have any one of the other 99 strains than the one tested for, or any one of the other co-infections without Lyme Disease?? Their tests come up negative and they are left in limbo, untreated.
If you do happen to get a positive test, any doctor will treat you for Lyme... For a maximum of one month. "There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the U.S. and
European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed."
My point is that Lyme Disease is still hugely misunderstood, even the medical community. When I say this, I want it to be crystal clear that I have never and will never mean this as an attack on any particular medical professional. My sister is a nurse, my sister-in-law is a nurse, my grandmother was a nurse, my father is a doctor of chiropractic, I have two cousins who are physician's assistants, another who works in a surgical office, an uncle who's a surgeon, countless friends who are doctors and nurses, students who are doctors and nurses... And I love and respect them all. There is a serious flaw at the very core of our medical system regarding this disease, which is none of their faults. The flaw is that the IDSA (Infectious Diseases Society of America) writes the regulations and guidelines for both diagnosing and treating Lyme Disease, and those guidelines are TERRIBLY wrong, ineffective, and outdated, as are the blood tests. This is why there are medical and naturopathic professionals who have studied Lyme Disease extensively, are ILADS certified (International Lyme and Associated Diseases Society) and are specifically "Lyme Literate." They can accurately and effectively diagnose and treat Lyme and co-infections, and treat for long enough to get the patient into remission. This is why it is imperative that someone who is suspicious they have Lyme Disease see an ILADS certified doctor to either get properly diagnosed with Lyme, or to properly rule it out as a possible cause of illness.
Please feel free to reach out with any questions.
Thank you, thank you, thank you for listening!
References:
-http://www.cdc.gov/lyme/faq/index.html
-http://www.ilads.org/lyme/about-lyme.php
-http://www.ilads.org/lyme/lyme-quickfacts.php
-http://lymediseasechallenge.org/the-facts/
-http://lymediseasechallenge.org/testing/
-https://www.envita.com/lyme-disease/lyme-disease-testing-a-difficult-diagnosis-contributes-can-lead-to-problems
-https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
The more I blog, the more I get the sense that I have a lot of people who are reading my blog. Excellent. First mission accomplished! Awareness is clearly spreading and that is the number one goal.
The more I blog, the more I get the sense that other people are seeing me as one isolated case; one random, poor girl who has a rare disease that no one knows anything about; one person that you should feel bad for.
If there's one thing I have become desperate for people to understand, it's that I am none of those things. None of them. I am not an isolated case. The disease I have isn't rare, and doesn't only affect me.
The Center for Disease Control says that in the United States there are 300,000 new Lyme diagnoses per year. Do you know how hard it is to get a Lyme Diagnosis?? Especially according to CDC standards (they're outrageously high. Most people who have Lyme test negative by CDC standards...)?? It took me 17 years to get re-diagnosed after my initial infection at age 10. 17 YEARS! There are 300,000 confirmed new cases of Lyme Disease per year according to the CDC, with outrageous standards. That's quite a few people. Now think about all the people who are walking around with it and have no idea they have it yet. We are talking about hundreds of thousands of people in the U.S. alone. Lyme is present on every continent, including Antarctica now (recent finding). There are over 300 strains of Lyme Disease worldwide and 100 strains present in the United States. Do you know how many strains they test for? Take a guess...
One. One strain. There are one HUNDRED strains in the U.S. And couldn't it be possible that some people living in the U.S. contracted their disease while abroad? They test for one strain. If you don't test positive, apparently you "don't have Lyme Disease." Okay, NOW imagine that 300,000 people happen to get CDC positive tests results in a year based off of a test for ONE strain. There are 100 strains. And those 300,000 people with positive blood tests are the lucky ones who even got to the point of taking a blood test (see my 17 year waiting period above)!
"The CDC has taken an alarmingly restrictive position on Lyme testing, transforming criteria that was developed for surveillance purposes, into diagnostic mandates. The two-tier testing paradigm for Lyme Disease recommended by the CDC misses approximately half of actual cases... According to CDC criteria, you must first test positive using a highly unreliable antibody screen. Next, the CDC requires a highly criticized combination of two IgM bands (that they only recognize in the first 4-6 weeks of infection) or five IgG bands.
In a March 2015 study, Johns Hopkins’ researchers found that 39% of patients with physician diagnosed erythema migrans rashes (which alone is diagnostic for Lyme Disease) remained seronegative on a Western Blot. Even more tellingly, the majority of seropositive individuals on both acute and convalescent serology had a negative IgG western blot, demonstrating that IgG seroconversion on western blot was very infrequent.
Is this starting to sink in?
Now add the co-infections. When you're initially infected (likely by a tick bite, but not in all cases), it's a lottery as to what combination of diseases you'll get. Perhaps that tick was carrying just Lyme Disease. Perhaps it had Lyme and Babesia. Perhaps it had Lyme, Babesia, Bartonella, and Erlichiosis... Perhaps it was carrying one of the other infections and not Lyme at all. The initial tests for Lyme Disease test for just that-- Lyme Disease. And the initial tests are laughably inaccurate and miss HALF of the cases who are chronically ill. And what about the hundreds of thousands of people who have any one of the other 99 strains than the one tested for, or any one of the other co-infections without Lyme Disease?? Their tests come up negative and they are left in limbo, untreated.
If you do happen to get a positive test, any doctor will treat you for Lyme... For a maximum of one month. "There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the U.S. and
European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed."
My point is that Lyme Disease is still hugely misunderstood, even the medical community. When I say this, I want it to be crystal clear that I have never and will never mean this as an attack on any particular medical professional. My sister is a nurse, my sister-in-law is a nurse, my grandmother was a nurse, my father is a doctor of chiropractic, I have two cousins who are physician's assistants, another who works in a surgical office, an uncle who's a surgeon, countless friends who are doctors and nurses, students who are doctors and nurses... And I love and respect them all. There is a serious flaw at the very core of our medical system regarding this disease, which is none of their faults. The flaw is that the IDSA (Infectious Diseases Society of America) writes the regulations and guidelines for both diagnosing and treating Lyme Disease, and those guidelines are TERRIBLY wrong, ineffective, and outdated, as are the blood tests. This is why there are medical and naturopathic professionals who have studied Lyme Disease extensively, are ILADS certified (International Lyme and Associated Diseases Society) and are specifically "Lyme Literate." They can accurately and effectively diagnose and treat Lyme and co-infections, and treat for long enough to get the patient into remission. This is why it is imperative that someone who is suspicious they have Lyme Disease see an ILADS certified doctor to either get properly diagnosed with Lyme, or to properly rule it out as a possible cause of illness.
Please feel free to reach out with any questions.
Thank you, thank you, thank you for listening!
References:
-http://www.cdc.gov/lyme/faq/index.html
-http://www.ilads.org/lyme/about-lyme.php
-http://www.ilads.org/lyme/lyme-quickfacts.php
-http://lymediseasechallenge.org/the-facts/
-http://lymediseasechallenge.org/testing/
-https://www.envita.com/lyme-disease/lyme-disease-testing-a-difficult-diagnosis-contributes-can-lead-to-problems
-https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
Subscribe to:
Posts (Atom)