September 7th 2012- 4 Years

The beginning of this month was my four year anniversary of the beginning of this Lyme journey. Ick. Four years?

I know there are a lot of people who have been through many more years of this struggle, but this still really stinks!

I have had Lyme and several fun coinfections for most of my life, about 25 years. Symptoms built up more and more and I really started to crash when I was in my early twenties, and at 25, I finally found my answer.

It was the day I wobbled into Dr S’s office with a bum leg that I could no longer feel. You could have probably have hacked it off with a saw and I would not have noticed. September 7th, 2012. A day I will never forget, a day that will remain imprinted in my mind.

Once I started treatment, shit hit completely hit the fan and I have not been the same ever since. My doctor asked me once, “Would you do this all again? Start treatment? Now knowing what it has done?”

Kind of a loaded question. Yes and no I suppose as I think about it now. This disease is absolutely miserable.

As I had mentioned, when you start treatment having chronic Lyme, coinfections, MCIDS, or whatever you prefer to call it, especially for so long, it is going to hit you, and HARD.

The question to myself is if I didn’t start treatment, where would I be now? Or how much worse would this be? Would it be worse? I might be better off doing exactly what I have done for this reason.

Would I have leveled out on my own and somewhat suppressed the infections like I had for all those years? Symptoms were certainly there, but I was still “me”. I’d just have to deal with the symptoms I had.

This year I definitely had my ups and downs. There has been some huge accomplishments. Going shopping on my own, not needing a babysitter for some tasks, finally getting my POTS diagnosis, walking the beach, I did very well for not being on antibiotics and taking a break. I didn’t immediately fall apart.… the list goes on.

The biggest downfall is that I reached a point that I just plain couldn’t tolerate treatment anymore. I just couldn’t do it anymore. My body began to reject the antibiotics and I ended up with a gut infection.

I slowly have begun to crash. My nasty coinfections have come back to play, my tics have returned, and I keep getting more and more exhausted. I feel like I have slept this entire year away!

I recently saw Dr S, and I have now begun working on Babesia again. A round of Coartem and a tincture. Holy crap. Yup. Clearly still an issue. I am also working on my gut still, mitochondrial and adrenal issues.

Definitely continuing on trying to control my neurological issues. I see Dr S next week again for another follow up and game plan, I will try to not be a slacker and give an update!!

Instead of giving a great big long spiel from the beginning (you can read it all from the very start of this adventure), here is my story from each year from the start of my treatment:

https://kimmiecakeskickslyme.wordpress.com/2013/09/07/september-7th-2012-one-year/

https://kimmiecakeskickslyme.wordpress.com/2014/09/07/september-7th-2012-two-years/

https://kimmiecakeskickslyme.wordpress.com/2015/09/03/august-7-2012-3-years/

Andddd a little photo montage from the start of treatment until now. A picture is worth a thousand words, right?!

 

 

 

Well. That is about all I have in me today. Almost Friday. Wishing you all a great weekend! Keep fighting. That’s all we can do. Remember to always look for those silver linings and positivity is a powerful medicine. Much love to you all!

Oh yes, and here is my Miss Olivia Newton Fartin’ Martin. She says “hi”. She put herself in  a time out about a week ago. We still can’t figure out what she did! What a goofball!
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*Disclaimer: Due to plagiarism and copyright infringement issues I am currently facing, I am formally requesting to NOT copy and paste my work as your own, please and thank you.

If you would like to share (and I encourage it!), please use my link to my blog only, or hit the “share button” on this page. Thank you so much.

 

July Part 1 – Keep Pushing

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I have been ridiculously busy lately, especially with work. I have definitely been slacking on keeping up with my updates. I have positive news though! No news is good news, right?

I had an appointment with my favorite Lyme literate naturopath a few weeks ago. We are still trying to figure out my complex puzzle, and he believes a part of my issues I am facing is drug induced mitochondrial dysfunction, which is kind of our main focus now, along with working on my gut infection, and Bartonella, which has slowly begun to rear its ugly head yet again. Super sucky.

Backtracking… What is mitochondrial dysfunction you may ask? Well, I will do my darndest to explain it correctly. Google to the rescue!

Mitochondria are a big part of your energy production. A huge part. Whole systems can fail if these cells begin to die and it can affect your entire body and its organs.

Antibiotics can cause cell death to mitochondria, and being on enough antibiotics to kill a horse for nearly 4 years, it is likely that this is could be one of the culprits as to why I am still not fully better and very much a work in progress.

Mitochondrial issues very well overlap a lot of Lyme symptoms. It is nearly impossible to know what is what, but it is certainly worth giving this a shot having it be a main focus for awhile.

It was once believed that mitochondria could not come back, but over time they can replenish. Hooray! This may take a very long time, but this is positive that I will get my little energy cells back. So, more supplements of course.

It is insane that I am not even on treatment and I take upward of 60-70 pills a day. I guess it helps me with my daily water intake 😉 Silver linings.

Honestly, right now a lot of my supplements I am suppose to take three times a day, I have been taking two times a day. I am afraid my timing is off, and the ones with food, without food… I dunno, I don’t really feel like eating anything after midnight when I go to bed. I know that probably sounds bad and non-compliant of me, but I am trying to keep up with everything on a “timely basis”.

As for the Bartonella that is creeping back, I am just using an herbal now to try to keep it at bay so I don’t have to be on antibiotics and continue to heal my stomach.

I did hear possibly the very best thing ever during my appointment. Dr S. said to me, “I think this might take a long time but I’m pretty confident we can get you much better or fixed.”

Even being under the care of one of the top LLMD’s in the country, the goal has always been 80-85% functional and that was it for me. I was told that is all there would ever be.

Realistically, I know some things might not go away completely, but in the near 4 years of treatment I’ve never heard anything like that.

Way to go Dr S. for making sure I still have my butterflies, rainbows, and unicorns mentality! Yesssss!

I am still babying my stomach. It hasn’t been perfect, but it is certainly improving. I have been doing well with my diet and the bloated look is definitely beginning to improve. Every once in awhile, I break my own rules and eat something I know I shouldn’t, example, I stuffed my face with Chinese food last night. All the bad stuff that even on IVs I wouldn’t eat.

It was friggin delicious and sometimes I feel like you have to break the rules for the sake of sanity, but I can tell a huge difference in my energy level, my head hurts, and I am just plain foggy. Needless to say, tonight will be a salad and vegan chicken night. Time to jump back on the horse and get back on track.

Bartonella as I had mentioned has also been one of my issues lately. It generally messes with my head in a lot of ways. Paranoia, hallucinations, anxiety, OCD, and oh gosh do my feet hurt at night.

Dave, my wonderful husband, is a trooper and uses his knuckles full force on the soles of my feet to get the knots out at night.

Dr S gave me an herbal tincture called Houttunia, and I think it is infused with something (Samento perhaps?) Well, anywho, I completely underestimated this tincture.

I was told to take one drop, and slowly work myself up to 15 drops a day. Yeah. I made the assumption that starting at one drop was the “I’m a pussy” dose, and started with five-ish. I say five-ish because I kind of just squirted a guesstimate of five drops in my mouth.

Word of the wise: listen to your doctor. LOL

I ended up with stabbing stomach pain, all my Bartonella symptoms flared, I was completely wiped out. It quickly brought back all the the days I am so used to. Sitting in my car at the bank or grocery store parking lot, and having to drive home because there is just no way I would be able to get out of my car. Needless to say, I took a few day break and started SLOWLY, and I haven’t had any issues since. I am still flaring, but it is tolerable.

Clumsy me, I fell again and ended up with a big ol’ bruise on my leg. My house is a single story ranch, and our back porch has one step and another single step further back, of course when I went down I hit the one of two steps then tumbled. Oy vey.
It is super annoying when my legs just give out. I feel as if they are like “just kidding!”, and I go down like a sack of taters.

I had an appointment with my dermatologist for my heart scar. It turns out it is a keloid. It sounds like it isn’t worth a surgery as it can easily come back and worse. Plus I could have to cut everything out, so I would be left with a bigger even grosser scar. It kind of felt like he wanted to line his pockets with money, as I did a little research and found out many plastic surgeons would not cut it out for this very reason. Of course, it isn’t covered by insurance anyway.

Scars I personally feel are pretty badass and tell a story about you, but this one is kind of “icky”. Haha. I will just live with it.

He also offered steroid injections, but I don’t really think that is warranted either.

I know you aren’t suppose to take steroids with Lyme disease, but sometimes in certain cases you have to outweigh the good and bad in particular situations, and this certainly isn’t one of them. Totally not worth it.

Now onto the good.  🙂

I have had some great days. As I had mentioned, I have worked much more. A lot more. I kind of haven’t had a choice as things needed to be done, but have done really well on staying focused, with the small exception of a few days I had to leave out of frustration or pick and choose what I absolutely needed to get done for the day.

Those are the kind of days I swear at the quarterly government reports because I have a total brain fart and once I get frusterated, I get all flustered and I need to leave and come back to it later. I have done the same reports for going on 10 years, they used to be so easy peasy for me. They are, if I am not in a foggy trance.

I would consider myself much more normal at least visibly. My friends had a small barbeque, and you wouldn’t likely be able to tell I am sick in any way. I even did a little dancing!

I have been moving around more, using the pool for exercising. This made me quickly learn that not only my legs are out of shape, I have also lost all muscle strength in my arms. It’ll come back to me. The more I try to do, the more it will come back and I am hoping that I will be more functional.

I even made it to Home Depot the other day!! Not only is it a big store, the lighting is terrible for someone with a lot of light sensitivity.

After awhile I began to get really fuzzy and dizzy, but I did a lot of walking and dream shopping since there is just no way I can afford anything in there. Haha. I was able to stay until Dave got everything he needed and there was no emergency rush out to his truck. Phew.

Last time we went to a Lowe’s, Dave literally threw me on one of those rolling pallet things and took me out to his truck. I had completely collapsed. I must have been a sight for sore eyes as he wheeled me out of the store, while I was a hot mess laying on the pallet.

I conquered the trip this time, and I was there much longer. Things are never going to change unless I start getting back out there into the world. I would rather fail a few times (or a lot of times) and say I tried at least.

I did a big grocery shopping trip with Dave! We usually stick to the tiny store in our town, but we ventured out of town. I did great. No having to leave, no dizziness. We didn’t have to rush. It was awesome.

It wiped me out by the time I got home so I took a nap but look at what I am accomplishing! There is no doubt I am moving around much more.

This comes to an important point with all of this. Kimmiecakes rant of the day. I know some will probably take offense, and believe me I have been through hell and back, and it has kept me going and fighting.

Keep pushing. It may be hard, but doing just a little extra is great for the mind, and your body.

If you think about it, I have had years and years of doing absolutely nothing. A vegetable at one point, a wheelchair, not moving around at all. Muscles are definitely toast. Everything is weak and depleted.

I know it might come across as an asshole thing to say, but mind over matter it. Do something every single day. One little thing. Anything.

Even if it is sitting outside for awhile. Just an extra push. I have talked to sooo many Lyme patients over the years, and I can tell when there is night and day differences in attitudes it plays out in a link to their health.

It is kind of bizarre, but many a time, I see those who let this terrible disease consume them, eat them alive, and let it define them not heal. These are the people who just don’t see the silver linings in anything. There is ALWAYS silver linings.

You all have the power to do one little thing that will change your day. No matter how big or small, it is still an accomplishment. Give yourself credit with what you CAN do and focus on that. Push. Fight. Kick some ass!

Granted, this disease is ridiculously complex so there is so many things to consider, but I have seen those people are often the ones who stay sick.

Hell, I am a medical mystery as dubbed by all of my doctors, but just look, after over 25 years of infection I am finally starting to see some improvements. I got told some amazing news and I have such high hopes that this is not going to be forever. I think my body is beginning to want to heal itself. Turtles pace, but in the right direction.

Your mind is an important part of healing. Do not let this define you. I am a firm believer in that.

End rant. Or motivational speech? I don’t know, but it has been on my mind lately upon speaking with some current patients and it makes me cringe. We are all allowed a bad day or two, to be angry at the world, but I got into it trying to help someone look at the world in a new perspective and she just wasn’t feeling it. Oh well.

I hope it serves at least a few of you well! It is hot as Hades outside now, but have a seat in the shade, read a book, walk to your mailbox, sit at a table and prepare dinner (I did this for years!), take a bath, anything! We are all effected in different ways, so what you are able to do is likely different compared to someone else. Just do it J

P.S. I will give another update hopefully soon! I had yet another visit with Dr S and will have much more to share! I’m a little behind the times 😛  Happy Sunday.

Ahh! Miss Olive! I almost forgot about you. She is doing great, I even left her out for the first time to take a shower and she surrounded herself with toys.. caused no trouble! She’s 50 pounds now!!
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June Part 2 – A Reminder

This past month has been kind of bittersweet. It marked the three year anniversary being treated by one of the top LLMDs in the country. There was a tremendous amount of hope beginning this new step in my journey, yet the path has been less than easy.

I am nearly four years into treatment, and this path still isn’t easy (LOL), it has certainly taught me that patience is a virtue. Pshhh. Darn life lessons.

Anywho, my TimeHop on Facebook reminded me of the video I posted when I first started my blog exactly three years ago. It definitely left me reminiscing about the past.

Disclaimer: I am having a hell of a time figuring out the right words today. Google has been trying to lend a hand but I don’t know if it is working out so well or not. So, just bare with me and I am sure you can figure out what the hell I am saying haha.

Please check out my “About” video on the top of my page. You will see exactly where I started. Well, not where I started, as I had already been through about 8 or 9 months of treatment, but the starting point with this LLMD. * This is when you check out the video*

Once again, this will all make sense if you watch the video. Or I just sound like I am rambling. I sort of am. That’s okay though. It happens.

Without the help of my amazing doctors, I would not be where I am today. After discussing with Dr S, I was lead toward the diagnosis of Tourettes syndrome, as his research really brought out the flaws of my current neurologist. It was brought out from being sick, and can also be genetic, but it is so much better than it was and we have found my main “triggers”. The IV treatment and neurological medications have helped lessen this tremendously.

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My other photo for that day was one evening that a best friend and Dave pushed me in my wheelchair so I could be a part of hanging out. Thumbs up, of course!!!!

I no longer need my chair or a lot of assistance, I still need to hold onto Dave once in awhile, or unless it is a super long walk with bright lights.

I have had since then had 11 months of aggressive IV and oral treatment after 5 months of IVs and a few months of orals alone with no success.

There has been so many bumps in the road (ok big ass potholes), but look how far I’ve come!

I know it is still a very long road, and now it is most of the time my struggles are invisible to others. Watching this video was a sombering reminder of how great I am versus how used to be.

All I can say and my piece of advice is, 
don’t ever forget those silver linings if you are in a similar boat. Look for anything positive, big or small, in your life or what your can do or accomplished.

I still love my life, and everyone who has been a part of it who loves and supports me has certainly made it so much easier.

Now we are back to 2016 and how life has been…

For awhile, I was really anxiety ridden. Even though it wasn’t really my deal, I get all flustered doing anything out of the ordinary. One of my best friends got married, and I was a bridesmaid. Dr S jokingly said to me, “what was she thinking?!” So, yeah. I was a bit worried.

The morning of, I did poorly. I was having unintentional blank stares and ticking while trying to get my hair and makeup all done. It was enough for one of the bridemaids and the bride to ask and make sure I was okay. What was I suppose to say? “Umm no, I am feeling like I need to curl up in a little ball on the floor?!” LOL Another bridemaid snuck into town and got me a protein drink as well. I have kind people in my life.

I pushed through, and someway, somehow pulled out of it. I did REALLY well!! It was really hard to stand there and take pictures, it was also hotter than Hades out, but I made it. I EVEN DANCED!!!!!

That is absolutely huge for me. That day was also the longest I have been on my feet in years. I am so proud of myself.

This really shows how things can really change from one part of the day to another having a chronic illness. I am so glad things turned out the way they did.

It was a beautiful day. I might have cried a bit during their ceremony, but at least it wasn’t an “ugly cry”. Haha. Tears of joy.
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I’m on the very left side. Dave is on the very right side. Shows you how one can look perfectly normal and be sick, huh? We are all a great looking bunch. Never ever prettier than the bride though!
I did spend the next few days making up for it. Of course, I needed to catch up on my sleep, and a lot of my body kind of decided to hate me.

My calf muscles have been painful, and I keep getting edema in my feet and ankles. Making sure I stay hydrated and elevating my feet seems to help and it never stays, so I am not quite sure why.

The endometriosis pain is back. This time however, there has been some spotting. I almost forget girls get their periods. It’s been 8 months. 8 months that I haven’t missed.

For the past few weeks, Dave has gone grocery shopping alone a few times. That is usually our time to get me out of the house and get some exercise. A lot of times I try to go, and I make it most of the way, but I get the “time to go out to the car” from Dave, he hands me the keys and I wait until he is finished.

I have had a lot of days that I have been really cloudy and ticking. Days that I want to run some errands, and I sit in my car trying to collect myself and have enough oomph, and I end up going straight home. I just can’t do it, and it wouldn’t be safe.

There has also been a few night time scares. For those who do not regularly follow me (you should, I am awesome), I have POTS. Dave has no longer been babysitting me while I take a shower for awhile now, and I am now having some dizzy spells again. My body cannot regulate temperature whatsoever, and I think that doesn’t help any. I have had days in the past that Dave would help me out in the tub, he would tell me the water was incredibly hot, yet my body temperature would go down to the high 95’s, I would turn blue and he would have to warm me back up. Dr’s still don’t know why this happens to me.

I can feel it coming, well… most of the time, and I quickly turn the shower off and seek cover. Even if it is laying in the tub, on the bathroom floor, anything. I would prefer to not go down like a sack of potatoes.

I have also had some good moments though. Running errands, being on my feet more, doing some pool exercises, just trying to keep going.

I know I had Dave do some shopping and I have had some unsuccessful trips at the grocery store, but there has been days that I went all by myself, to two stores to get everything we needed! Dave and I even went to motorcycle week so I could get my Dad his early Father’s Day present, a tee shirt. It was busy and I did a decent amount of walking. Get those legs going!

I focus on the good. It keeps you going. No use in moping and wrapping your head with all the bad. It really isn’t a great motivator for healing.

I had mentioned and posted a picture of my Bartonella streak last time I wrote, and I am thinking I am having a flair. I am only like this is Bartonella is having a party in my brain…..

Okay. I have a confession to make. I had a super Lyme rage moment, I was not my finest ladylike self. This woman probably thought I was what is wrong with America today and I am an awful troubled youth. Oy.

I was sitting in the grocery store parking lot. Of course I was! I have to recoup from as much as picking up peppers and onions.

She swung car door open, hit my car, and began to walk away like she had done absolutely nothing wrong. I WAS IN THE CAR AND SAW HER!!!! It’s cool right? No. Not cool.

I then backed up my car and blocked her in the parking lot and had some words with her. It began with how disrespectful that was as I was sitting right there, and if I wasn’t around she should have left a note to every single cuss word, c bombs and f bombs flying for about a solid five minutes. Just imagine five minutes of being reamed at by some crazy girl with every swear and name calling in the book.

She simply said in the midst of my yelling, that I was near the white line (THE PARKING LOT WAS NEARLY EMPTY, PARK SOMEWHERE ELSE! I WASN’T BY THE WAY, AND THAT REALLY ISN’T RELEVANT WHEN YOU SLAM INTO SOMEONE’S CAR!!!)

All the while, when I was completely flipping out, calling her names, just having complete word vomit all over this idiotic woman.

Did I overreact? Perhaps. As you can see it is still a touchy subject. Haha.

But who the hell does that? I know I sure wouldn’t. By the way, my car was absolutely fine, I had her license plate written down in case, but there was a massive amount of navy blue paint on my passenger side rear door. Take that!
Here is a link that discusses Lyme rage in full:

https://kimmiecakeskickslyme.wordpress.com/2013/09/29/lyme-rage/

You can read all about my jerkface moments, as this has not been the first, and I am sure it will not be the last. It will probably help a lot of you relate, and a great read for family members to understand this isn’t always “you” when these episodes happen.

I have some of my recent lab results back, and also had some tests done. I had my Vit B levels checked, and they were over 5,000/ Normal levels 200-900? Dr S said too much can cause adverse reactions. I want to be retested though to see if it was a fluke. I have been making sure my supplements don’t contain Vit B and I will mention getting the test redone at my next doctors appointment.

I have the feeling everything is just floating around and not being expelled nor absorbed. Hmmm..

I had to get a mammogram done, and t turns out I have some very fibrous tissue, and they found a small mass. They wanted to be safe, as I have a family history of breast cancer at a very young age, do I had an ultrasound done. Turns out, I have a fluid filled cyst, and a few smaller cysts in my breast, and that is what is causing the pain.

Of course, Miss Research right here, a lot of information contradicts itself. When to worry, what size is too big or too small, and it appears I am at the borderline range. Most of the time these go away on their own, and I have decided to wait it out a few months, see if there is still pain, and go from there. I believe they will just insert a tiny needle and get the fluid out. Easy peasy.

I will cross that road when I have to. It is nice to not have one more thing to add to my list of falling apart, although I was not entirely worried to begin with, as you don’t know until you have the results right in front of you, there is no point in freaking out.

On a good note, they also will have these images to compare to if I ever have another issue arise, and it will be a lot easier for the radiologist to distinguish any changes.

Well, that is about it everyone! Wishing you all a happy Friday!

Almost forgot, here is my routine picture of Olive, my precious sleeping beauty.

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June Part 1 – Workin’ It

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I’m here! Just slacking once again on my writing. Hmmm… I have written notes throughout this past half month to try to remember everything, so I wouldn’t bullshit you all. 🙂 I have had an appointment with my neurologist finally, and an appointment with Dr S today.

There has been some fairly decent days (for me anyways), ones that I have accomplished a few errands and helped Dave grocery shop. I have been trying to work on getting stronger, and have been starting to use my parents pool for a little physical therapy. Boy, I will tell ya.. I have always been focusing on my legs as the primary issue, but have totally forgotten about my arms. I have zero muscle left. Needless to say, I stayed in the kiddie end of the pool to get some exercise.

I do pay for trying to push myself badly. It generally takes a couple days to recover. I get beyond exhausted, foggy, and my tics come back. I still have to go back to the car and sit and wait, or go straight home even if I need something at the store. Oh, and my beautiful face come back. Lookin’ sexy, kinda?
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No, probably not. Haha. I really need to do this though, I won’t get any strength back by sleeping my life away on the couch or curled in a ball covered in blankets watching TV. Gotta start somewhere! Even for this much, I am really proud of myself. The other day I even went to the store, picked out flowers at a farm, and planted them. Go me!

I have been sticking to my strict diet and working on my gut infection and my neuro stabilizing supplements. They were working a lot in the beginning, I have lost a few pounds and am much less bloaty, but it hasn’t improved any further. Dealing with the gut is a tough thing that takes time. I just gotta keep at it.
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So weird. I wonder if Babs is acting up? This is the only picture I actually took, but I keep getting streaks on my tummy too. Those are almost more like straight red stretch marks. They go away within a day though. And, little blue veins poking out of my thighs.

I have been having a lot of anxiety at night. Paranoia. Every little thing on my mind eats away at me, and anything negative from the past replays in my mind over and over. Things that haven’t even happened yet play in my mind. I am in a wedding this weekend and I have anxiety about how I am going to feel, and I wish that I was more involved in helping out. Meds to help with sleep and essential oils aren’t doing the trick. It is really hindering a restorative sleep, and I am beginning to have nightmares and moving around a lot in my sleep. A few weeks ago, I was asleep, punching my headboard to my bed. I have been all over the place, tossing and turning. It would probably help to get to a better place with sleep again and I would not feel so yucky.

I had my neurology appointment last week. I had to joke as soon as I got into the office. It is bright as hell in there, which is kind of a neurologically impaired person’s nightmare. Really? Dim those suckers down. I can’t be the only person with light sensitivity that comes through that door. Oy. The good in that (I will put a positive spin on it), is that they will see exactly what those lights do to you. It is one of those things, generally when you walk into a doctors office to discuss a problem or symptom, it just disappears. Poof! When you get home, it is right back. And you just look like an idiot or a faker.

I suppose he probably isn’t reading this, so I will be honest with you. I will say, he is REALLY a nice guy, and I do like him. There is a BUT though. I will put it this way. He was probably the very bottom of his graduating class and snuck by. I saw him a few years back, not noticing anything because at that point I was petty much a vegetable. A twitchy, yelling vegetable. I had no idea what the hell was going on around me.

Example one. He referred to his notes from my previous appointment, and of course he remembered me. I am kind of one of those people that is hard to forget. Obnoxiously yelling, flailing my arms, finger snapping, clapping like a friggin harbor seal. Yup. Not too hard to forget. He had mentioned Tourrette’s, even though he understood the cause was likely my tick borne infections, and said that because I was not swearing it wasn’t quite but very close to Tourrette’s, or borderline?

I can’t remember the exact wording… I do know that an extremely small percentage of Tourrette’s patients actually do swear, so I kind of bit my tongue. This is not correct information for a diagnosis based on guidelines, and telling Dr S this, he was kind of disappointed because sometimes in these situations it is good to actually get something down on paper by the neurologist.

Example two. I had several notes prepared walking, well, waddling though the door, with everything I wanted to discuss. My foot and leg numbness was a big priority. What is permanent damage? Does he think there is permanent damage? Just something I have to deal with or something he thinks will get better? Any thoughts?

He gave me an exam. Not ONCE did he test the bottom of my feet for any response, the sides of my feet, reflexes in my feet. I even suggested it. DO ITTTTT.  I would think, common sense, if this is the number one complaint of the patient, it would be done. The only thing that was done in relative to my feet was he used something that kind of looked like a golf tee so it was kind of sharp at the end, made sure I was unable to see what he was doing, and told me to tell him when I could feel it. He did it a few times. Every time I answered, “right there!” or “now!”, it was midway up my calf. I really thought that he was starting out there and going downward. Nope. Upward. There was a whole lot of nada until halfway up my calf.

At the end, he did tell me that he wanted to follow up with me in a few months, and wanted some of my blood work to be redone. The big positive: it sounds like he is going to set up an electrical conductivity test to see how my feet and legs do. Which was huge. Another positive was that he was willing to refill my lamictal, which I cannot get here. One less thing to think about.

He also changed the wording on my lamictal as it stated that I have epilepsy, which I do not. He said that it was kind of a red flag, so changing it is better. Driving and whatnot. I told him the truth that I do drive, even though I am limited, like a 10-15 minute radios each way and that is my maximum. I was worried he was going to pull my license when he saw my list of meds. He didn’t though, thank god. I already feel like I have lost enough independence with this disease.

I was hoping for the epilepsy testing though, to see if the drugs I am taking are the right choice for me as it would give me that answer. I guess I can’t get everything I want. At least it sounds like I will be getting that nerve test done and my lamictal refilled, which were kind of the top priorities.

I had my appointment with Dr S today. It was a really easy, straight to the point appointment, really. We decided it was still best to not be on antibiotics. They really serve no benefit to me at the moment, and my stomach really isn’t fully healed.

He was really happy and encouraging that I am working on getting stronger. He wants to control the neurological issues more, and have that be my primary focus. Inflammation and more neurological stabilizing supplements! Also, working on the liver to make all these things work better and I absorb everything better.

I have been procrastinating for some time now on an issue, and Dave has gotten pretty mad and pushing me to call. I have about a dime-ish sized lump in my breast. It really near your armpits where your lymph nodes would be, but it is uncomfortable. I guess I need to take it more seriously. I honestly just hate dealing with doctors. In my family history, my grandmother died a very young death, before 30 of breast cancer. I am nearly positive it isn’t the issue, but a mammogram appointment has been set up for me.

Photo on 6-1-16 at 2.34 PM #2

Also, I guess it is NOT normal for your heart implant removal scar (I had it removed in January) to have a keloid looking scar and certainly not normal to have black specks in the rest of my scar, and the left side not looking like it closed all the way. It did, but it kind of looks like there is a hole. Sorry for the super crappy picture, it is really hard to take a picture of your chest with a full sized macbook. Haha. Just to give a very basic idea.

Dermatologist appointment in the works. Super duper. I didn’t even bring this issue up, he saw it and said I really should get it looked at and possibly biopsied. Especially having black dots in it. Who knows, maybe they will cut it all out and I will have an even more badass scar. Woot woot! Just another thing to put in my calendar.

My electrophysiologist called for a follow up appointment as well. The prescription he gave me, the tweaked dosage, and his game plan of the recumbent bike, lots of water, salt and simple leg exercises seems to have helped, so I kind of put it on the back burner for now. It is so busy with work for my Dad and Dave, who would be the ones who would have to give me a ride.

My birthday was on Friday. 29! I plan on being 29 for the next few years. We didn’t really celebrate, the weekend before however, Dave did take me to the ocean for lunch, and I was having a bad day, but still was able to do a small walk on the beach. I wish I could have done more, but I wouldn’t have made it back lol. I always feel like a new person and completely relaxed after spending some time at my favorite beach in Wells, Maine.
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That’s my update for now! Wishing you all a happy Wednesday!

Of course, a picture of Miss Olive, sleeping with her caterpillar. 🙂
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April Part 2 -And So I Wait..

It has been a rough week or so. I’m going to do my best to not be all over the place and make sense in my writing today. This is about as good as it is going to get.

The day before my appointment with Dr S I had a mini meltdown. Okay, it was a big meltdown but I was able to keep most of it inside.

It all started with getting the IV process going. Vitamin C, Glutathione, ringers, Myer’s cocktails. It would have been a great thing to add to my regiments and it was recommended to incorporate these treatments for me.

I had the thumbs up and good to go to do them at home, then within about three hours, I got a phone call that they changed their minds and got a big fat “no”.

I asked for an explanation and they simply told me they decided to not do it for me. I had explained I had done some of these treatments at home before, and I was told they won’t do it. I was told they changed their mind. What the fudge?!

I investigated further.The true reasoning? Aha! This particular doctor that was all thumbs up, ready to go, and let’s help get this girl better “communicated” with Dr. N, another naturopath that I used to see in conjunction with Dr S and my neurologist when I had my 5 months of rocephin IVs. I guess she still has hard feelings for me leaving her as a patient.

So, she took it upon herself to butt in to make sure I did not get these treatments by communicating with some of the other holistic and naturopathic doctors in the area as well to make sure they would not help me.

I am basically on the “do not fly” list for help at the moment. Once again, thanks for being mature, Dr N .*Rolls eyes*.

She is pretty egotistical, and even has a little webpage (well, at least she did at one point), basically sharing how she is the Lyme guru, the hero, and has saved a lot of patients.

She wanted my case to be a part of her story. That she could “cure” me. Let’s be honest, I am a bit of a challenge and would have looked pretty great on her resume.

Do you remember Dr N ??! You should read my whole story. J It will help you out a lot if you are trying to get your ducks in a row, or are dealing with a very careless doctor. EXTREMELY careless to the point of being dangerous.

At that point I was too sick to even advocate for myself, I am glad others intervened, including Dave as well.

At that point in treatment, if Dr S didn’t step in, as well as my neurologist, Dave, I am convinced I would be dead. I am very lucky with what I have been through that I am alive.

Right now things are extremely hard, but I am not dying. Just dysfunctional and certainly not having the time of my life. Like I said, read my story. J

Anywho, she was absolutely furious when I decided to see Dr J. I had never seen a doctor do this, but over the phone she literally threw a temper tantrum like a child, yelling at me and telling me she was the best. Haha. Okay. If your doctor does this, I would advise you to run.

I have a really hard time driving any sort of distance, and I needed to get to the clinic where I get my Depo shot every 3 months. It is about a 15 minute drive, but it wears me out.

I got to the clinic and apparently the only doctor working there quit, and no one called and told me there was no one there who could administer the shot.

The secretary is the only one working there, which doesn’t help a heck of a lot. She made sure I got squeezed in with another local gynecologist, one whom I have seen before. Phew.

I was feeling completely overwhelmed, and I hadn’t even seen Dr S yet. Part of it was pure exhaustion I believe.
I have also started to become very paranoid and anxiety ridden lately. Depression is beginning to set in. I am beginning to feel depersonalized, generally during the day.

This is basically like you are watching yourself from above… hmm.. it is kind of hard for me to explain right now. You are just a puppet and don’t really know what you are saying or anything. You are just “there”, I suppose.

I am not at that Cipro horrible level I once was, but still my mindset isn’t so great right now, even though I am trying to hold onto optimism that this is all bumps in the road on this crazy journey, and as they say, “this to shall pass”. I know it will… but in the meantime it definitely sucks.

Between feeling like I am getting sicker, the fog, the not feeling limbs, having Bartonella feet, and feeling complete exhaustion (I haven’t even been using my recumbent bike which makes me angry because it is right in front of me in the living room), I am just falling the frig apart.

The mind games in my head are so terrible. I always wonder if those are worse than being debilitated. At this point I think a sound mind would be a lot better, even if I can do less and less. Ugh.

That evening, I cried myself to sleep. That hasn’t happened to me in a lonnnnng time. I am almost thinking teenage heartbreaks when this had happened?

Before I fell asleep I asked Dave, “Is everything going to be okay?” You could tell he was a bit heartbroken in his eyes with me asking this, and he isn’t really a show emotions kind of guy, and he told me, yes, it will be okay. He left and took the dogs on an adventure, so I could sleep in peace.

The following day, I had a visit with my favoritest naturopath ever, Dr S. We went over some of my recent testing. The conversation went as follows…

All my neurotransmitters in my brain are shot and as well as my adrenals. He recommended for me to push for epilepsy study when I go back to my neurologist.

I was given a zillion tests for blood work, and I am waiting to hear back on some of the results. There was a lot of things checkered off, so we will see if there is any interpretations on my blood work.

I haven’t been ignoring my writing, but I felt like it was good to at least wait to see some of my results to share with you. What they mean, I am not too sure as of the moment.

Unfortunately from the results that are ready at the moment, some things I believe are “off”, although yet again they aren’t “too off”. One being, I was tested for diabetes.

I am grateful it appears I am okay, but Dr S emailed me stating it is likely I am having crashes during the day, which obviously doesn’t help anything. My iron was high, which was no surprise, and a lot of things like I said were borderline or fine.

I hate this. It is one of those situations you obviously don’t want to have another issue, but you find yourself needing some sort of explanation.

On another note for you all.. SO IMPORTANT!!!!!! When you get handed a blood work slip, ALWAYS research the tests given (or get any test results in your hands). I love Dr S, but sometimes there might be something in a doctor’s mind that they are not sharing with you. Learn this information.

Look up the diagnostic codes. There should be a few numbers/letters with a decimal point. Look them up on google. See what they are truly looking for.

Don’t be in the dark about everything. This is a part of advocating for yourself, and you should have all this information. See what they might be thinking or suspicious of that they haven’t told you.

It is nice to have those questions you may have that they do not share with you right in your hands. Advice for the day. 😉

The game plan at the moment is to treat the antibiotic resistant infections in my tummy and intestines (Hey! At least there is one explanation.. one very big explanation!) .

It is time to make my tummy and low functioning liver happy again. Detox detox detox!I am now on an even stricter diet, which is called the FODMAPS diet. It is meant to not feed the bad bacteria in your stomach and intestines. I eat pretty healthy, but even fruits and veggies among other things are actually poor choices at the moment.

Dr S thought it was a good idea to have the nutritional IV support… but due to my previously mentioned issues, it probably not going to be in the cards for me right now. I might continue exploring this avenue. Right now though, I am just tired and don’t feel like getting frustrated making phone calls.

So right now, I am in a hard place. I am currently too sick to treat Lyme etc. I have to fix the gut infection before I start up anything. And so I wait… Thus far, I think it has been five or six weeks off of antibiotics.

The bad news : not everything is Lyme, Bartonella, Babesia and more, but this is the damage.

After nearly 4 years of treatment for me, the infections are still very much there unfortunately, but there is a lot more to the story. We will put our fingers on it, I am sure. Making my gut happy is so important though to even get started with anything.

Dr S told me that I might get a lot worse again. To the point I could possibly backtrack to my IV progress. I have so much toxins and crap in me that are just stuck there, and of course there is the fun herx reactions trying to get rid of it. Major son of a bitch. Thousands upon thousands down the drain if this happens. I am not going to worry about it. As for right now, I am not well, but I seem to have plateaued in my downfall.

The great news of the day, “I STILL BELIEVE THERE IS A LOT OF HOPE FOR YOU. AND A LOT OF THIS CAN BE FIXED.”

Let’s hold onto this thought. Butterflies, rainbows and unicorns, this storm will pass. I still have faith.

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This is my daily fun stuff. As you can see, this all isn’t good lol. And sadly I forgot to put a lot of things out. I leave pills scattered around the house in order to remember when to take them, and I also have my B12 injections.

I’m putting on my boxing gloves and I’m ready to fight.

On Saturday I slept for 17 hours. SEVENTEEN HOURS! Now, some of you who don’t “get it” say snarky comments… I have gotten it more than a time or two… “I would be that tired if I overslept that much”. Eff off.

Clearly, my body is beyond exhausted and sometimes I don’t find this a terrible thing, as it is allowing my body to heal and is obviously much needed The downside, I feel a bit useless.

The hours I was awake weren’t fun. I was so dizzy with my POTS symptoms, I couldn’t feel my legs, I was completely light sensitive (I made sure my Dad unscrewed the light bulb in the office so my side was dark), and a scary one, my vision became very blurry. I definitely needed this sleep.

During my one Sunday off a month, Dave and I did breakfast, sticking with the FODMAPS diet, trying to remain vegan, and having food intolerances makes it rather difficult to stick to a diet. I know I am going to probably end up adding at least chicken or eggs again. I need as much protein as possible.

The rest of the week has been about the same. Like I said, I haven’t fallen apart anymore, but there have been days I have sat in the parking lot not being able to walk into the store, walk into the post office. Days of unwashed hair, a little extra deodorant.

There was one day that I just needed to go to sleep, so I had to put Olive in the crate since I wouldn’t be watching her. I cried. I never do anything like that and I felt like a piece of crap for leaving her in there for a few hours when I was home.

All I can say is I am doing my best, and it is really hard even though I am trying to hold onto the optimism and keep on kicking ass, my mind really hates me. Wishing you all the very best weekend!

And of course, Miss Olive says, “Hi!!”

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March Part 1 – Big Decisions

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Once again, I apologize, I have been slacking on updating you all. I have some negative news, some very positive news, and I have made a very big decision about my future course of treatment.
Where I left off, for those who do not follow me, (you should, because I am awesome), I started my “bomb day” in the morning, and then heading off to biomagnetic therapy in the early afternoon.
When it was time to leave for my appointment, I was in a little ball on the couch, and having my Dad help make sure I got into his truck. I still need rides going to any place that is past my 15 minute radius, which really stinks as I hate relying on other people. Ugh.
Back on topic… I could barely keep my eyes open, and all I could see was black purple and blue squiggly lines. I had a barf bag in hand…it was not a pretty afternoon.
Most people would probably be terrified on these days, but I am so used to them that it doesn’t even phase me. This too shall pass? I don’t know.

 It is what it is.
The biomagnetic therapy seemed to help. I felt a lot better after my session, and was even able to pick up take out for dinner on my way home.
I had a “blue sky” day on my first day of Coartem. I started the day off by going out to breakfast with Dave’s family. It was really loud and busy in there, so my head got jumbled up and I get very “fuzzy”, but I was fine. I then went with Dave to two stores on our way home. That is pretty miraculous for me. AND THEN!!!, I got a decent amount of cleaning done when I got home. This was a very good day for me.
Of course, there seems to always be a punishment for having any sort of a better day. I have fallen once (luckily not a bad one), I have had a lot of foggy days.
My first, someone said, “good morning” to me, and instead of saying it back I replied, “good night!” To be fair, it was a Monday. I have definitely been out of focus. Needless to say, I haven’t gotten a whole lot done at work. Sorry boss if you are reading this…
At night, and throughout the past week or so, I have had some tics. These aren’t quite as bad, I guess I would describe it as cringing, and I had a few good yells at night.
I have taken a few evening naps, but I still seem to be doing really well on staying on a “normal” schedule. I think trying to get out there and do things is completely exhausting and overwhelming on my body.
That is okay though, I still have a very rewarding and accomplished feeling pushing though and doing what once seemed completely impossible and off the table for anything I would ever be able to do again.

 

I had another blue sky day since I last wrote! Two blue sky days. Wow. I made two quick trips to the grocery store, a coffee stop, went to the bank and pharmacy, swept vacuumed, did some some dishes, cleaned the tub and washed some of our wall trim.. all while dealing with the neediest high maintenance brat puppy ever. Seriously. Wow.
Afterward, my legs felt like complete jello, and everything to me seemed dark, so I knew it was time to rest. I really wanted to use my recumbent bike that evening, but that was a nap day, and I really did a lot. I didn’t feel all that guilty for taking the rest of the evening off.
I don’t know if it is my treatment, methylcobalin shots again, or my new biomagnetic therapy but something is starting to work.

 

This truly shows having this disease.. well any chronic illness, you can have significant improvements in a day, then completely fall apart. I just hold onto those good moments, keep positive more will come, and you need to just live day by day. It will make you crazy thinking of the future.

 

Dave and I are trying a new diet plan. We have actually been eating vegan. I thought Dave wouldn’t make it a week, but he has been so good, I am really proud of him. I think having a partner in trying a new diet, workout, or anything of the sort helps. It makes you more accountable.

 

I have lost 6 pounds (losing weight wasn’t the goal but I am not hurt by this at all 😉 ). I am way less bloaty, and I no longer have horrific stabbing stomach pains.
I still haven’t mastered the art of tofu, haha. I am realizing that there are so many options for meals. Our favorite is a meal is almost like spaghetti, only it is filled with veggies, you don’t even need more miss pasta, so it is a lot healthier and lighter.

 

Now the big decision. I have decided that I am no longer going to go to my LLMD in DC. This was a huge and hard decision for me. My mind was all over the place, and a big part of it was a mental thing that I would be leaving “THE” Lyme doctor. If that makes sense.

 

I haven’t taken this decision lightly, but a piece of me knows that the clinic has done everything they can for me. I have not been happy and very frusterated for a long time for a number of reasons that I will not get into. I do not want to and will not bash them in any way, I really did need them very badly when I was at my worst. It was life changing for me during that point in time.

 

I do owe them so much, as I am no longer in the place I was at, basically completely useless, needing Dave to push me around in a wheelchair, bathe me… the list goes on. I have so much appreciation and gratitude towards them.

 

With that being said, I have altered some protocols on my own, lessening them as needed, and I just have a negative frame of mind now, and I have a positive outlook and better vibes with my local naturopath that has helped me along the way throughout so far, a 3 ½ year journey.
As of right now, it has been nearly two years without significant changes. I have had a few blue sky days, but it really isn’t determined what it is from. My tweaked protocols, the biomagnetic therapy? My immune system working better? There are so many factors.

 

I will tell you, with and having Lyme, I see so many people give up very quickly with doctors when they do not see immediate results. With this illness, all I can say is patience is a virtue. You need to have faith in your doctor and give it time. Do not give up. Give your doctor a chance. This is not a sprint, it is a long frickin marathon.

 

For me unfortunately, after this amount of time (YEARS), I think it is just time to move on. Something is still missing, I am sure of it, and I like I mentioned, I personally believe I have gotten all I can out of the clinic.

 

I am not giving up, folks I promise you, but as Einstein once said said, “Insanity is doing the same thing over and over again and expecting different results.”

 

My recent appointment with Dr S got me feeling more positive, and honestly I think it will be a trial and error for my treatment, which is okay. I really think he will find the right combination that will work for me.

 

He truly listens and takes his time, putting great thought into what he thinks will be best. I am not shy around him, and he doesn’t beat around the bush with telling me the truth. I am also optimistic about my biomagnetic therapy treatments.
His concern as of right now, looking at several of my blood work papers, he wants to figure out what my liver is doing wrong. It is functioning poorly.
A test suggested is a urine test that tells you about nutrients, liver function, energy production, brain chemistry, and gut infections. On point, Dr S, let’s get this all figured out.

 

This is still a scary moment for me, I will not lie. I still have not picked up the phone to cancel my appointment. I need to, and I think that phone call will be today.
This is a big step, I need to do this for me, I need to be brave, and transition to what may be completely life altering for the better (I am hoping for some level of remission for me), or for the worst.

 

I really truly believe this is the right path for me. Say a prayer, wish me luck. I am officially starting a brand new path on my road to recovery.

And of course, you get a picture of Miss Olive, snuggling with her Mumma.  🙂 12801672_10153493275242404_4837392389664443509_n