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:

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!

*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.


August Part 1 – Busy Month

Hey everyone! It has been a really busy month, so I apologize for not giving an update!

I had a great milestone this month that I am so proud of, and of course have had my downfalls. It happens. I am looking at the silver linings though, Kimmiecakes kicked ass.

I had a visit with Dr S and it was decided that I needed to take a break on my Bartonella herbal treatments. I was told to take a week break, and use a much lower dose to start out and work myself back up.

I haven’t started back up on any Bartonella treatment. Hopefully he won’t be mad at my next appointment but I know my own body and I think I still need a rest.

I don’t know if I have bugs stirring at the moment and a pocket has come out with these nasty bugs in my head, or because I am completely overdoing it.

If you read my last post (umm, you should!), I shared that I had figured it was only an herbal that was given to me, and ended up being a mess.

I of course didn’t listen once again with my next “action plan” of the month. But I will get to that later.

Now, let’s talk about poop. Haha. Whatever, we all do it. Put your lunch down if you are continuing reading.:0

I have been dealing with the complete opposite of my past issues of running to the toilet. My legs work much better than I give credit for in this instance, although I have definitely had my share of oopsie poopsies LOL. Don’t judge. Shit happens, literally.

Sometimes it is about 3 or 4 days before I have an ummm…. movement. It is entirely normal when I do go, I am not straining in any way, I just plain don’t have to go for several days at a time. Zero cramps that are common with constipation.

I don’t really know if that is anything to worry about. I am assuming not, but Dr S is the king of poop questions so I am sure it will be brought up anyway during my next appointment.

I have noticed however, that after I eat and it doesn’t matter what it is, I often become very nauseated, have indigestion, am burpy, and by the end of the day I look like I am carrying twins.

I still have that lovely stabbing stomach pain that is slightly left and slightly upper of where my gallbladder would be.

And even grosser (I promised you all the good, the bad, the ugly, and the gross since day one of my blog LOL), I have had the WORST itchies and actually feeling crawling at bedtime on more than one occasion.

Dave’s believe and questioning on this topic is that wet farts can cause this issue and wondering if I was suffering with them. I just about died laughing.

Really Dave? I know that’s not the case at all. What the heck? Ew Dave. Just ew. Not the same thing. He also told me not to post this blog on Facebook but who are we kidding.

Also, I will clarify, I am not sitting there and scratching at it like a monkey or dragging my bum on the carpet like a dog, because that is definitely gross. And obviously uncomfortable. I just take my sleeping pills and ignore it.

From lots of research, as you know I am the Google Queen, that symptom is an extremely common sign that you are carrying parasites and I am thinking I really need to do another parasite cleanse. It has been a year.

My last one I found all sorts of critters! Let’s continue with the gross, shall we?!

There was white spaghetti of assorted sizes, some as big as 4 or 5 inches!!! I am unsure of what type of worms they were but I also had lots and lots of flukes. Flukes kind of look like white rice.

Parasites can cause an array of problems other than my embarrassing issue.

Once again, there are so many symptoms that can overlap Lyme.

And! It is very likely everyone does have parasites in their body but will never show any symptoms. When your immune system is not working properly, it might become problematic for you.

I should also note, if you are tested for parasites with a stool sample, it can be negative even though you are riddled with them, it just means none came out when you gave your sample.

Let’s get to some information about parasites!

Some of the many causes of parasites are: uncooked meats, lake water, sanitation of your food and water, fruits or veggies can carry them, cleaning your kitty box and one of the biggest tough one for me.

You can indeed get parasites from your pets. Yeah.. I’ll admit, I love kisses from my fur kids. We even have our “goodnight kiss” routine when Dave and I tell them it is bedtime.

I always say, “Gimme a kiss!” to my 3 dogs, and they will give me a smooch when we tuck them in. I wouldn’t be able to give that up realistically. I know some are so anti- dog but that is just going to be the way it is going to be.

Parasites can also infect you by walking barefoot on infected soil, tile, etc. ! So in a nutshell, everyday living.

Symptoms of having parasites include but are not limited to”
-IBS symptoms – gas, bloating, diarrhea, constipation, and any sort of digestional distress.
-Sleep issues
-Pain in muscles or joints or aching
– Fatigue, exhaustion
-Mood changes such as anxiety, paranoia, depression, hallucinations, and can lead to many other mood disorders
-Not feeling full after your meals
-Mineral deficiencies (iron is common)
-Skin irritations or rashes
-Weight loss or gain
-Vomiting or nausea
-Abdominal pain or tenderness
-Autoimmune disorders

That’s just a few things on the list. There are so many more. And don’t forget the obvious, visually seeing a worm passed in your stool.

Common parasites include: tapeworms, hook worms , flukes, pinworms, whipworms, and giardia.

I am going to quickly rattle off some naturals that help with parasites. DISCLAIMER: ALWAYS CONSULT WITH YOUR DOCTOR BEFORE TAKING ANYTHING.

Wormwood, black walnut, cloves and garlic are a couple that come to mind. There are so many different naturals that can help. Reiterating once again, seek medical advice before trying something new, even with supplements.

So, needless to say, I will be ordering a cleanse this week and get that all taken care of.. Gag. Plus, I am thinking (hoping at least) that it will help get rid of some of my bloating.

I twisted my ankle a doosy last month and it kind of put a damper on being more active for a bit. I wasn’t too worried about it other than the fact the fluid didn’t seem to want to go away. It was rather squishy. About two weeks after it happened, I did begin to worry.

The inside of my leg was turning very black and blue, and I began getting super attractive varicose veins. My calf was swollen over a half an inch compared to my other leg.

It was massage day, and Gayle was pretty concerned and didn’t even want to touch that leg. I have a history with clotting, I have Factor V Leiden as well as vascular issues, and DVT was a concern. She told me I really should go to the hospital, and after my appointment I headed off to the ER.

I will tell you. You are treated SO MUCH DIFFERENTLY if you do not mention Lyme. Practically having the hospital as my second home, they already had my med list handy.

The doctor asked about why I had taken so many antibiotics, and I simply told him I HAD Lyme. I really didn’t want to be in there, period, and this wasn’t really a Lyme issue, so you have to pick your battles. Sorry folks. It wasn’t really a time to advocate. That is unlike me and I know I suck but I just wanted to get er’ done and get the heck out of there.

They saw the bruising in my leg, how swollen it was, and I was running a temperature yet again of 100 (fevers can accompany DVT), and they rushed me in to get an ultrasound.

He then wanted to do an x-ray of my ankle, as it was kind of gross looking even after two weeks. Agreed?

The doctor came back in and told me my leg was okay, no DVT, and he believed it was because of my vascular issues, and the fact that I was putting so much pressure on the inside of my leg because of the sprain.

I didn’t have any fractures or breaks either! Good news! I did however tear a ligament and had tendonitis. I kind of knew that anyways, but I had a lot of piece of mind knowing there was nothing wrong with the inside of my leg.

I wore an ankle brace, and have been using an abundance of essential oils on my legs and ankle which seemed to help a lot with the swelling and bruising. I kind of made a concoction in an all natural moisturizer: frankinsence, lemon, peppermint, lavender, and clove.

A lot of my new supplements haven’t seemed to make much of a difference for me. I am kind of bummed. You can’t knock it unless you try it though. I am working on my adrenals, and trying to get any sort of energy back. Adrenal complex is supposed to be somewhat “stimulating” and also is supposed to help with POTS. I have also continued working on mitochondrial dysfunction.

One of the thoughts of my appointment with Dr S was to wean myself off of some of my neuro meds. It makes sense, even though it isn’t the number one cause of my fatigue, things that calm your nerves are going to make you less energetic and a bit more tired.

Okay. I will share this experience, I really was debating it, but I am real.

This incident happened BEFORE I even started weaning off of the Neurontin, the choice we made together. This is the very first neuro drug I was put on nearly 4 years ago to help with my severe tics.

As my followers know, I often sleep my life away. Sometimes 14-15 hours at a time. You have no friggin clue what tired is unless you have a debilitating chronic illness. Never tell me you are tired from the weather or such and such or I will want to throat punch you. Okay, back to my story.

I have driven throughout this entire journey. I am not an asshole and if I don’t feel well or have an aura of any kind, I will sit on the side of the road. I pretty much allow myself a 10-15 minute radius from my house in driving distance.

I have spent countless hours sitting in a parking lot five minutes from my house because I knew I was not safe to drive. I have had incidences in which I have forgotten where I was and ended up panicking, I have had days that I wanted to make it home so bad I threw up on myself while driving home. I just did not want to stop.

My scary moment. I was on my way home from work, out of nowhere, I fell asleep for a split second. It wasn’t like I was nodding off in exhaustion, I just had a very quick moment.

There was no cars around at that very second and I actually stayed in the right spot, but even worse, all flustered, I turned at a stop sign, not looking whatsoever and made my turn.

Nothing like this has ever happened before, but I am now I am definitely much more wary. I have been taking the time to take as much sleep as possible, and at the moment I have made sure I don’t have my keys and rely on Dave even more than I already do.

Some of my meds were a big hell no, not happening on the idea of tapering off of them. Neurontin (I will not share the dose for medical reasons for you all, once again clarifying I am not a doctor and do not offer medical advice), I have been taking a massive dose for a long time.

I had weaned myself down from my even higher dose in the past, of course very slowly. Well, this time, I rushed things, and am still paying the price.

One of the first things I noticed was my mind was not in the right place. I was feeling beyond depressed, agitated, anxious, and I have been hallucinating more and more at night . It was certainly a few very long days. My mind has been beginning to come back to a better place.

Since I have tapered down a bit, my tics have been appearing more. Honestly, I don’t care about the tics all that much. It is the head games are downright terrible. At least I knew those were temporary.

I have slammed my hands on the desk at work with my thriller dance tics I am all too familiar with. I have gotten stuttery, mumbly, more foggy and shaky, and my tics seem to go crazy at night.

At least we make light of it. My body was going crazy the other night. Hands flailing, yelling, body jerking, my cringes that look like I am holding in a sneeze.

We were watching the Olympics when my body decided to have a party I had no control over. Dave was teasing me, telling me to simmer down and he knew I was excited, and jokingly told me root for our teams a bit more quietly with a “shh” motion with his finger to his lips.

I don’t think cutting down on this med has helped in any way, shape or form. I was hoping it would make me less tired but it hasn’t done anything to help. This will be something to discuss at my next appointment.

Generally in the afternoons I have been running fevers 100-101. I am wondering if the heat is killing off the bugs. I think just about everywhere in the country was a big giant sauna for a week or so.

Inside my house though, I am covered in blankets and wearing a hoodie. It has been hard to breathe the past few days or so, I have been getting “actual heart pain”, like my heart itself hurts, air hunger, and I wake up a sweaty mess. I have been extra cautious in the shower as my POTS symptoms are getting worse and I am trying to avoid anymore falls.

Damnit. I am hoping it was just the full moon. Just another thing to mention. I absolutely need to nip Babesia in the butt. It took me two years to see improvements. That scares me. It’ll be okay, I have faith that it will get it figured out.

Now the awesome!!!

Dave took me on a beach day. We left very early in the morning so we would have the beach to ourselves. My goal of that day: walk five. And guess what? I DID!!!!!!!!

That is amazing and I am so proud of myself. Five miles, folks. There is still missing puzzle pieces, tummy healing, etc, but I am getting much better. Just look at how happy I was. I still am.

My friend has even taken me out to a bar that has a nice patio overlooking the lake. It isn’t a rave or anything there, the place is rather quiet, but even being able to do things like that now is a good feeling. It is also good to be able to not have Dave (as much as I love him) have to join to be my babysitter. Girl time. 🙂

Also, I noticed on that “On that Day” app on Facebook, there was a picture from exactly three years ago and I have my most recent picture of me. Once again, you can see as clear as day how much I have improved. Wow!!!

That brings me to my Kimmiecakes advice of the day. Set goals for yourself, no matter how big or small and put your mind to it. A little tidbit, sharing your goals with others, posting on social media, or writing them down will make it much more likely that you will meet them.

Like I said, your goals don’t have to be to run a marathon. Have your goal be to walk to your mailbox and grab the mail, cook dinner. Anything. Baby goals, baby steps. Setting goals is positive motivation.
I guess I will wrap it up, this post was a novel and I know how hard it is for a lot of us Lymies to read this much. Hope you all have a fabulous weekend!

Annnndddd… Miss Olive says, “hi”!!

July Part 1 – Keep Pushing

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!!

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.


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.

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.


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:

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.




June Part 1 – Workin’ It


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?

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.

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.

That’s my update for now! Wishing you all a happy Wednesday!

Of course, a picture of Miss Olive, sleeping with her caterpillar. 🙂

October 1 – It’s That Time of Year


Where do I begin? There was definitely some ups and downs during last week’s breaks. Mostly downs, unfortunately. I must admit this has been one of the toughest breaks that I have been going through, if not the toughest out of the entire three years of treatment.

As I sat here staring at my laptop for quite some time, I noticed my battery was just draining from it, yet there were no words on my screen. I couldn’t for the life of me remember this week, other than it being completely miserable. I haven’t had the best time, but I remember last Saturday going out to dinner with friends. Even though I wasn’t doing great, it was nice to see my friends and take my mind off of “me” for while.

The following day, I don’t know if I was getting sicker, or making up for going out to dinner, but I was pretty bad. Dave wasn’t home and off to a racing event, so I ended up going down the road to a friend’s to watch the football game. That is the sort of thing I like. Sitting on a comfy couch. LOL

I do remember everyone going nuts about the “blood moon”. I must have missed the memo that it was on Sunday night, as I went outside on Saturday night during the time it was suppose to be happening, and thought to myself, “What the f*ck is the big deal about this?” It was just a bright moon. That would be because I had Lyme brain and was off a day. I did end up watching it on Sunday though… then I understood what everyone was talking about. LOL. Ohhhh Kimmiecakes.

For the rest of this week, I had to go back and re-read old emails and Facebook messages. My mind is mush. I have had to email my friend and ask if I had ever responded, probably repeating things over and over.

I had been holding onto the thought that I was having a Babesia herx for awhile. Exhaustion (way beyond my usual exhaustion), fevers ranging from the 99’s to 102’s, chest pain, flu-like pain, abdomen tenderness, sweaty. Just out of it. But for that long? It just didn’t make sense to me.

By Tuesday, I couldn’t take it anymore. For the past few days I felt it creeping up, but woke up with a horrid sore throat, and could see my lymph nodes sticking out of my neck. My throat was closed. WAHHHHHH…..

I have heard that mono is going around, and I have never had it before. I have had EBV that can easily be reactivated with a compromised immune system, and I have tested out a sip of a friend’s gluten free drink last time I saw her, who was recently diagnosed. Hmmm.. I ended up emailing Dr S about my concerns, and he ordered up several tests, that I am still waiting for. He told me the send out tests could take a week or so. Tick tock… and so I wait.

Dave is convinced it is a Mycoplasma flare up. I totally forgot to mention that to Dr S, so Dave told me to leave a message with the clinic. Since Myco is treated with antibiotics, it is also an easier idea to speak directly with the clinic instead, as they can tell me what they want me to do for treatment if that is the case.

The flu has also been suggested to me but I haven’t had any stuffy nose or anything of that sorts. A regular lingering cold with no stuffy nose? I don’t know. Medical mystery.

On Wednesday, I figured, why not.. I already feel yucky, so I might as well start my “shortened” protocol. I still did my Flagy and bomb days, I am just trying to hoard my Daraprims at the moment. Within an hour of taking my first day of pills, I was dry heaving at work (I was told it was okay, as long as I didn’t ralph on the keyboard haha), could barely walk, and felt as high as a kite. My good old friend Bactrim was probably the culprit, and it also leaves a disgusting taste in my mouth and leaves it feeling like sandpaper, and my eyes dry completely out. I swear I can hear myself blinking whenever I take it.

Friday I went in for more blood work. It is funny how within a few days your blood work can completely change and be even more out of whack. Nothing was really concerning at all on Tuesday’s blood work. Friday’s on the other hand, there was a lot of different things off. I was bummed. Chinese food is usually my bomb day savior. I was incredibly nauseated, and kept a trash can handy near me at all times. Maybe it was my bomb day savior and things would have been much much worse.

I ended up sleeping on the couch that night. I was tossing and turning, couldn’t breathe, and felt as if my chest, head and stomach could possibly explode. I just wanted to sleep. It was one of the few times that I felt like crying being sick.

Saturday wasn’t a much day. I had so much work to do, I am starting to get really anxious about it actually, since the quarter just ended and I have a lot to do. I will have to do my best and try to just focus this week, no matter how I feel. I did end up getting a decent amount of work done, but I was pretty much moving at the speed of molasses. I was so foggy, I felt like a bus hit me, and my chest hurt. The nausea still hadn’t gone away, and every single thing smelled disgusting to me, even if it was all in my head.

By the time I got home, my chest pain (I would describe it as my heart itself was hurting) was so bad, and the air hunger, and pain trying to get a breath in was so bad that I contemplated having Dave take me to the emergency room. I am not going to lie, I was a little scared.

I remembered that the most important thing was to keep calm and try to not panic, as that would not help at all. Secondly, I remembered…. SH*T! I HAVE LYME! So.. the ER is quite a joke. Unless I am bleeding to death or have no knowledge that someone is taking me to the ER, then I would really prefer not to go. All they would probably do is be dinks, call me a drug addict, or give me a lactated ringer… which honestly I wouldn’t mind. I love those ringers.

I sucked it up. I noticed that laying on my side seemed to help, and I melted into the couch and slept for hours.

Dave left for awhile, which was okay, so I didn’t feel bad about sleeping. By the time I had woke up, I had soup ready for me, a brand new vacuum and of course he vacuumed, and the laundry was done. He gets a big gold star.

It has been days since I have washed my hair. Dave commented to me this morning, “You look so much better with your hair up since you never wash your hair!”. Yup. So I guess I need to wear my hair up more often. Spaghetti is never a good look on anyone.

He has helped push me this week to try to do what I could. He knows I am having a terrible time, but he has gotten me on the bike one night, and today, he had me go for a ride with him and the dogs to the dump, and parked near the bakery to pick out a gluten free treat while he went grocery shopping. He knew shopping would be too much for me today, but he at least got me out of the house.

Sometimes, I am not going to lie, it makes me want to punch him in the face, but all in all, I am grateful. I have to do things because there isn’t a choice, like go to work although just part time, but getting pushed a little harder even though I get angry, I feel better once I am done. That I can do it. I also have to keep in mind all the things he does to help me… like my soup, cleaning and laundry this week, and hundreds of other things he does, so I really should listen to him once in awhile. 🙂

I just started week two of treatment. I figured why not. I don’t have any sort of game plan yet, as I don’t have any blood work back.  Other than Dave getting me out of the house, I haven’t been very productive. He is making me dinner tonight, because he is awesome, and I am trying to rest and take in a lot of fluids. I do feel better today, as my chest pain is nowhere near as bad as it was. Breathing is nice! 🙂

So… I really don’t know what is going on. I just know that something isn’t right. Bacterial or virus, I am not sure. This isn’t a herx. It is discouraging, as just a few weeks ago I was describing moments of blue skies, doing some cleaning in the mornings, feeling much more “normal” than I have in a very long time. That I was on the right track. At least I know my body enough to know that there is something else going on, and although it may linger longer than a healthy person, it will eventually go away. I will keep pushing, and hope that this coming week is better. That is about all I can do! I will figure it out. I always do. Just a little bump in the road.

September Part 3 – The Sky is Gray


Wow. I have been slacking on my writing lately. My writing time when I was keeping up with it is now my nap time, and after I finally get up, my legs don’t really want to work and I am still out of it so I just haven’t been keeping up with it. Sorry! Today is a Saturday afternoon, and I am still awake, so I figured I would give you all an update since I last wrote.

I have been kind of surprised as to how this break is going. I chose the title “The Sky is Gray” for two reasons. I always refer to my good days as blue skies. It hasn’t been blue skies. The second being, I have “California Dreaming” stuck in my head. Haha.

After a few days, the cloudiness in my head seems to fade a bit, and the herxing calms down. I don’t really know what is going on. It has been a tough time off of treatment.

The first day or so after treatment, I was actually somewhat productive. Cleaning, working, and my favorite was that I drove Dave’s sand dragster. Even if it was just into his carport, not going to lie, I felt a little like a badass.

Here’s me! Weeeee!!!!!

We didn’t even make it to dinner that night, which is kind of our ritual, but my body said when. It was a take out and movie night. I really don’t mind doing that, but it is nice to get out of the house. It has been three years, and I know when trying to do something is just a bad idea. Bad idea as in Dave has to carry me out of wherever we are. That is always fun.

I definitely had a case of the Mondays. Foggy, I could feel like my heart was racing, my legs felt like Jello. I was out of it. Well, my first stop for work is the post office to pick up the mail. I talk with the mail lady regularly, and when I was leaving I walked straight into the trailer hitch of the only car in that area of the parking lot. I completely slammed my shin (the bruising and lump still continues!), my flip flop went flying, I almost completely ate shit on the pavement. Of course, I pulled my muscles in my thigh and lower back out again.

Parked further down, a man was staring at me, and saw the whole thing. I had to look and retrieve my flip flop, my toes were all scuffed up on that foot as I caught myself with only one on so I was limping from not only that, but my back and thigh, and of course the my shin from slamming into the trailer hitch.

Then, I had to do the walk of shame past him, pretending nothing happened. It was embarrassing, and it hurt like hell. It certainly reminded me that I indeed do have legs, even though most days they are so numb I feel like I could take a chainsaw to them and not feel a thing. I am sure that probably wouldn’t be the case though. And Let’s not ever try that theory out.

Things that suck: when you are sick, you lose your brain. Apparantly, a few weeks ago, I fell for a “anti virus” computer scam. Giving a bunch of information… I don’t even remember everything, and giving them our credit card information. AHHH!!! I wouldn’t have even known, or remembered, if my Mom didn’t send me an article about the specific scam.

Luckily, our credit card didn’t have any charges on it, which is also a tell tale sign that it was fraudulent, since I had fell for the scam several weeks ago and I am pretty sure they would have taken out the cost of their “program” by now. Credit card account closed. Passwords changed. Everything I can possibly think of. I am still paranoid that every keystroke is being seen. Not much else I can do though. I am such a dumbass and cannot believe I fell for something that a half wit would have known better. Oy.

My massage therapy session I was hoping I was toxic, which would explain more of how I have been feeling. My nose wasn’t pouring, which would be a sign of toxicity, but my body was just plain sore as hell, and I needed some good cranial sacral therapy. I had spent the day stuttering, and if I wasn’t stuttering I was mumbling so no one could really understand me.

I think out of this entire week, Wednesday was the roughest. I was a fuzzy cloud, and my arms and legs felt like there was absolutely no weight to them. Like they could possibly just fly away. I was completely overwhelmed trying to get things done. The end of the quarter payroll being the biggest task. I ended up having to give up and go home. I was mad and disappointed in myself, I couldn’t run even the most basic errands on my way home. No recumbent bike. No cooking dinner. All I could do is just lay there and I kind of sulked.

I am not sure what happened yesterday but I had the same exact symptoms of POTS in the morning. At this point, I use the blood pressure cuff unless I black out or pass out to see what is going on, so I don’t hit my heart monitor button if it is just a neurological Lyme sort of issue. My blood pressure was 153/73. That is extremely high for me.. I think for a lot of people? Needless to say, I should probably cut down on my dosage of my blood pressure medication.

Today I felt a little better this morning. By the time I got to work I was really tired, but I did a bit of housework, and went to the gas station to get coffee and then the bank. I finished everything I needed to, but I could definitely take a nap. I really am hoping we will make it out to dinner though!

I am debating what to do with my next protocol. As many of my readers know, Daraprim has gone through the roof in pricing. Thanks a lot, ya big butt head greedy monster CEO.  I hear the prices will go down in the next month or so, as there was obviously a huge outrage as many people, need this drug. Cancer patients, AIDS patients, or people who are riddled with parasites (Babesia), like myself.

I will have to figure that out, and as I have the option as to when I start treatment again, I might bite the bullet and start early. But counting my pills, I am contemplating what to do. Hmmm… Pretty disgusting that anyone ill has to even try to figure out the course of treatment, or not get the best possible treatment, huh?

Anywho, that is my week. Maybe next week I will be sharing my treatment, maybe I will wait. I think my biggest concern is this has by far been the toughest break yet, and the reason why is a complete mystery to me.

Have a great weekend everyone!

August Part 4- A New Beginning


This week is the first week of a long awaited new protocol. I had been on the same treatment, with a little tweaking here and there for a very long time. It was definitely time for change, whether it be good or bad, I was happy to try something different. Another bonus, no more yellow paint! Those of you going through Babesia treatment know exactly what I am talking about. 😉

A bonus to this new protocol is that some of my medications were to be taken only once a day, so I opted for nighttime. I can’t feel any of it when I’m asleep!

My first day of treatment I was definitely having some neurological issues going on: depersonalization, foggy, just blah. Altogether though, I wouldn’t consider it too bad for the first day of my treatment. Generally, the first day always tends to whoop my butt, and I can’t think or do anything for the day. I am stuck to the couch unable to do anything. This was a positive change for me.

Weirdly, that first day I felt like I was starving. I was eating everything in site. It was to the point of being completely gross, reminding me of watching shows like “My 600 Pound Life”. My stomach felt and looked distended and it hurt full of pressure, and I stepped on the scale and gained 5 pounds.

Unfortunately, I am always really obsessed about my weight, so I was really bummed, even though it was my own fault. I think part of it is my new medication, Florinef, for my POTS treatment. I realize though, if I gain a few pounds and am way more functional again, although I still have light and sound sensitivities, it is worth it. I am sick of sitting at home and having so many limitations.

For the first time in awhile, I did not take a nap my first day of treatment. I was really excited, even feeling like a blimp, I did 20 minutes on my recumbent bike! I figured since the following day was my massage day and I had to take it easy for the rest of the day. That is definitely an accomplishment. Step by step, I hope to be active again, without facing any consequences. I know that day will come, I just need to keep working on what I can do. I am feeling really optimistic that this POTS treatment will work.

I am considering doing another parasite cleanse when I am on my next treatment break after putting some thought into it. There was definitely some interesting things ummmmm coming out, so it would probably be worth it to do it again. Dave even said he would do it with me!  I guess that’s what happens when you have become a boring old couple… you do parasite cleanses together. 🙂

When visiting my massage therapist, I never know exactly what is bothering me. I think I do in general, but she always seems to find something that is terribly painful. She has explained to me a lot of muscles go up your body, such as your lower back to your hips and thigh. My upper back and connective tissue were excruciating. She is usually pretty gentle with me, but that day, it was a “press as hard as hell with your elbow” sort of day. She told my my circulation and temperature was much better, another reason why I think my new treatment is working. Can you tell I am optimistic?

It was also another day of not napping in the evening. Hmmm… this is quite a change for me. It would be really nice if I didn’t crash by the early evening, not stay up until nearly 1:00 in the morning, and go to bed at a reasonable time.

The second day of taking all sorts of fun medications, it REALLY hit me. “There it isssss”, I thought to myself. I knew it would kick in sooner or later! I was stuttery, my legs were numb making me completely off balance, my hands kept raising (a common tic of mine), and I felt like bugs were crawling all over me. I have vitiligo, and it was really prevalent in my legs. I kind of looked like a leopard. The veins were popping out of my wrists.

Septra (Bactrim) has a tendency to make my mouth and eyes completely dry out like a raisin. It was a terrible combination to try to stay hydrated, as the Florinef leaves a really salty taste in my mouth. It felt like I was completely dehydrated yet just had a mouthful of ocean water. It made everything taste disgusting.

That day mostly consisted of me covering my face and resting my head on the table at work. Trying to do any task took me forever. I had had to ask my coworker to check my math on everything, and I kept having to stop while we were checking our orders of the day, because my eyes kept getting blurred.

I did absolutely nothing for the rest of the day. I was toast. I ended up sleeping for most of the afternoon and the evening. When I finally woke up, Dave pushed me to at least do a little bit on the bike. It was probably a good idea, since I had spent so much time on the couch to get my legs moving and blood circulating again.

Flagyl day one. Ugh. This is my least favorite and feared drug. The metallic flavored devil. During the entire day, I had that awful feeling in your throat that you could puke at any given moment. Or have to run to the toilet. You just never know. LOL

Of course, I had an appointment with my other gynecologist to have an exam and receive my Depo shot. Even though it is not a very long drive, it is a hard thing for me to do. The sun beaming between the trees, causing flashing light, and staring at my speedometer to make sure I wasn’t going 10 mph under the speed limit and holding on to the wheel with all my might.

It was one of those days that the receptionist, gynecologist, and even the mail lady at the post office said to me, “You look really tired.” Yup. I pretty much don’t remember most of our conversations, it was almost like listening to the adults on “Peanuts”. All I know is that my pap smear which I was due for was excruciatingly painful. Maybe it was just her, but I don’t remember it being that bad.

Unfortunately, after my pharmacist doing some investigating for me, it doesn’t look too promising to get my Lupron shot at the discount I was hoping for. I just might be shit out of luck on that one. I am going to continue to try, and make the step of calling the company directly before I give up. I just can’t spend nearly 3 grand on another shot. I am bummed, as it seemed to help. Now everything seems to be coming back.

Yesterday was my bomb day. If you have been following me (you should be, I am awesome), you know it is the day that I take everything under the sun. It is an extremely aggressive day. I took all my pills for the early morning, 20 to be precise (and this is just round one!!) , needing about a bottle and a half of water to get them down, and headed to the hospital to get my blood drawn. I have about an hour until the bomb from bomb day kicks my ass, and it happened while I was sitting in the waiting room waiting for my turn. It was completely full of people, not an empty seat.

My neurologist once told me that after a year of consecutively having tics, a diagnosis of Tourette’s syndrome is given. I use to tell strangers that I had Tourette’s, as people for some reason felt the need to come up to me and ask what is wrong with me.

I know however, that I do not have Tourette’s. I guess technically I do if you want to nitpick, as it has been about three years of this particular symptom never fully going away, but it is Bartonella induced, as I have been told my my LLND and LLMD.

Anyway, as I was saying… the bomb went off. I can best describe it as holding in a sneeze. You can just sneeze and get it over with, or you can try to hold it in, even though you feel like you are going to explode. Trying to hold in that sneeze tends to be a bad idea, as that little explosive feeling takes over, and you have a humungous sneeze. And that is precisely what happened.

I held in that sneeze. Hand raising, doing my thriller dance, and my face kept grimacing. It was one of those situations that I could tell people were trying not to be rude and stare, but  knew all eyes were on me. Damnit. Why did I hold in that sneeze?

Getting my blood drawn was a pain in the ass. My favorite phlebotomist is no longer working there, and it seems that only a very select few that work there actually believe me when I reiterate to them, “I am not going to be easy. Use a butterfly needle.” After a few pokes in my arm, wiggling that needle around. Ackkkk!!! I never look at that one, even though I am not squeamish, but the feeling just disgusts me. After finally realizing that I am indeed a difficult patient to get a draw, she managed to get it from my hand. The blood ran so slow to fill my vials, I at least didn’t have a giant draw, I think 5 this time, so once again, the wiggling of the needle.

That was fun. But, I was still feeling pretty good for the day, at least mentally. I got my coffee and $3 scratch ticket, and won $20 (woohooo!) and bomb day = Chinese food. After sitting at work and taking my time, I stopped ticking, and although I was a little loopy and shaky, I was doing much better. The bomb was starting to subside. I made it to the store to pick up a big bag of dog food and man handled that! I wasn’t dizzy or lightheaded. My heart didn’t feel like it was going to beat out of my chest. I was okay. It was a success. I am trying to keep track of all these things, hoping I will improve and finally get better.

Once I had finished my Chinese food, I took a long nap, and woke up like I had never napped, had stomach pain, nausea, and felt really weak. I skipped the bike that night. I feel bad and almost guilty, but I have been really good. I can always get back on it today!

Today I am tired, but feel alright. I got a little bit of housework done, went to work, and I think Dave and I are going to attempt to go out to dinner. He wants to go to an auto part store, but after my Lowe’s experience, I think I will sit in the truck. Especially knowing him and his truck and toy parts, he could talk forever with the employees.

Wish me luck, I only have a one day break before I get a beating for the next several days. I think I will do well. Both drugs I am familiar with, so I might be just fine. Let’s hope so.

Happy weekend everyone!!!!

July Part 7 – The End of an Era


After my last post as you know, I had good intentions of cleaning and cooking a nice dinner. Well, I lied. I ended up passing right out after I hit the “post” button and was asleep for the rest of the afternoon.

Dave finally woke me up a little after 5:00 and told me the dishes were done, he switched the laundry over for me, AND cooked dinner. Gold star to him! I am either a lucky girl or he is sick of always running out of clean underwear. Either way.

Monday was my second day of treatment. Holy herx! I can’t remember if I took a shower or not, and I definitely didn’t wash my hair. I suppose that really isn’t anything new though..

I decided to get my routine blood work done to get it out of the way. I was completely bummed out, the woman who always has awesome luck getting a blood draw from me with just one prick was working her last day before she will start another job at a doctor’s office. I will be looking forward to the future multiple jabs and wiggling of the needle in my arm. Ick.

At least everyone knows I am a pain in the ass so they take caution, use a butterfly needle, and really try to look for a good vein. This was a huge benefit of having my Powerline, I never had to deal with needles, the nurses could just draw what they needed from the line.

Walking back out to my car, I had to laugh at myself. There was a very old lady, like ancient old, using her walker, and she passed me in the parking lot. Wow, it was definitely one of those days I was walking at the speed of molasses. Some days are much better than others. This just wasn’t one of those days.

I then headed off to the post office for work. I realized when I was on the road, that I not only forgot to take my blood pressure medication, I most importantly forgot to take two of my seizure medications. Oy.

At the post office, my feet were blue and purple (guess I really do need that blood pressure medication!) standing there waiting for a package to be scanned. I was so dizzy, and felt like my heart was pounding out of my chest. I hit my heart monitor button and in the car checked my blood pressure. Sure enough, it was 80/65, so connecting the dots, I am positive my blood pressure dropped very quickly causing the issues.

It kind of seems Captain Obvious to me, but then again, I am not a doctor. I feel like anyone that has been dealing with a chronic illness for a long time that does their research and through their experience should be handed some sort of medical degree though! It seems like I know a hell of a lot more than a lot of doctors.

Sometimes I get lucky, instead of big egos, the doctors are interested to learn something new. My GP, who was a dinkus and called to tell me they wanted the drug test results too, saw my feet and how the skin was peeling away and my toes had some little blisters on them, had no idea what it was, and I explained to him about ACA (the herx rash), and he wrote it down to do a little research on it. That is something, right?

I just sent in my full download of the event, so I will have to reiterate that I forgot my Midodrine. I was having a brain fart and forgot to tell the woman that key part. Haha. The other day I had another episode, with my medication taken, with the same exact symptoms.

I am not really sure why their only response to my LLMD’s thoughts and prescribing my medication are that, “It certainly could be POTS, but that is really hard to treat.” Oh wait. It was because I was a drug addict. Haha. I am really hoping the electrophysiologist will actually listen and be able to further help me with this issue.

By the time I got all these things done.. okay that is really not a lot of tasks, I was fried. The bossman called me and asked how I was, and the only word I could think of was “wonky”. He laughed, as I guess that is kind of a weird description. But I was just that. “Wonky”. I told him about forgetting some of my medications, and he told me to go just go home.

I just couldn’t do that, as I had stuff to do, so I tried to get as much done as possible. My Mom came stopped into the office, and also told me to finish up and go home. I did a lot the few days before, fortunately. I wasn’t there for more than two hours, and I told her I still had errands to run. I was instructed to go home and take my medications before I did anything. Home it is.

I never really know how I look on my bad days, well I do sometimes, especially when I was ticking terribly, but I was assuming it was obvious I was “off” that day. I was told it certainly looked like I needed help.

It was a long drive home. I took my medications and laid down for awhile. I felt a little bit better, then decided to tackle my errands. As soon as I got to the parking lot, I had to sit there with my head down for several minutes. I needed the gusto to get up and finish out my day. I survived, and headed straight home.

After laying down for an hour or two, I was able to clean up my bathroom a bit, and cooked dinner. I was fighting taking a nap really hard, but I already left work early, so I kind of felt like a useless turd. I know I can’t help it and it is just something I have to cope with for the time being.

I crashed right after dinner, and slept until after 9:00. Dave kept trying to wake me so I wouldn’t be up all night with no success. I would just groan and mumble at him, roll over, and fall right back asleep.

I paid for it as I was up all hours of the night, but that nap sure did feel good.

Tuesday is my massage day. My circulation was really off, and I had the classic Bartonella feet. Tightened right up. As I had mentioned, I had another heart event. My blood pressure dropped significantly again, even taking my medication, and up went my heart rate.

Although it wasn’t as rough of a day physically as it had been, I was having an emotional day. I was pretty drained. I was pissed off at the world, every little thing annoyed me, and I spent most of the day in tears. I wasn’t so much having a pity party day, I just noticed things that are bothering me, such as my recent notes from the office (I swear they aren’t even mine?), hurt feelings, pet peeves that everyone has of their spouse, money and the fact I have none, worrying about prescriptions, several appointments I have next month.. anything came to my mind.

That night was certainly a fun one. At about 4:00 in the morning, I woke up to a puddle of pee. Yes, I am that 28 year old that wet the bed. This has happened a few times throughout treatment, but I never made it past the pajama bottoms before getting to the bathroom. Nope. Not this time.

Seriously? I woke Dave up since I didn’t have my glasses on and asked him how bad it was, and he looked at me and chuckled. “Were you swimming in your dream or did you just decide you had to tinkle?” Hahaha. I can only laugh.

I have no idea what happened. I only had a sip of water before bed for my meds, and definitely went to bed with an empty bladder. I use to have issues controlling my bowels prior to treatment, and have had this issue a few times on IVs before. Maybe it is just a muscle or nerve sort of thing. Like I said, I have no idea.

What was worse, it that Dave came trotting into the bedroom with the “dog kit”. The dog kit is a spray bottle of Lysol, paper towels, and a plastic grocery bag. Our kit for dog pukeys and Cooper tinkles. Both of the dogs were looking at me like “I didn’t do it” and that would be correct. I needed the dog kit.

You may ask why we didn’t change the sheets. I asked Dave and he was like it is 4:00 in the morning. I could barely stand as it was, so he gave it a few sprays and wiped the spot with paper towels, I changed my bottoms, climbed back into bed and fell right asleep. Whatev. Screw it.

We could have always done this instead:

We joked the next day that I might just need those diapers advertised on TV with the annoying women twisting around dancing. Tanna? I don’t know. Everytime that commercial comes on, Dave ALWAYS tells me how much he hates them all. Maybe I could be one of them?

My blood work came in the following morning. A lot of tests were on the fence. If there was a range of 0-1.0, mine would be a 1.0. Sometimes in some strange way I wish it was higher or lower, even if just a teensy bit. There was some things to look out for as I am use to, potassium, and sodium both being on the low side. My kidney, red blood cells, and width were exactly on the dot for the high range. My haptoglobin was normal this time however! I am thinking it is because my liver and spleen are no longer enlarged. I’ll take it!

It was another emotional day. A really emotional day. Treatment was taking its toll on me, and I was really stressed out. It wasn’t my favorite thing pissing the bed the night before to begin with, knowing I would have to clean and change the bed, and wash the comforter, which is a daunting task for me. I was still feeling down from the other day, and what set it off was searching for a medication I will need for my next round of treatment.

I felt so sick. I was rocking back and forth in my office chair to my heartbeat, and I could not stop crying. I just needed a breather from this all. Chronic illness, especially such a controversial disease is such a bitch. And that is just what my family and Dave are giving me.

My parents decided they would watch the little monsters for me, and Dave and I are going to have a little getaway to my favorite place on earth. The ocean. I think it is finally showing that I am slowly breaking. I am still hopeful and trying positive, but things are really getting to me at the moment. I needed this more than anything. I am very grateful.

Realistically, I won’t be able to walk the full 5 1/2 miles of the beach like I once did when I first finished up IVs and was making great progress and doing so much better than I am now. Right before I slid right backward. That is okay though. I will walk the beach as much as I can, look for sand dollars, and just sit and breathe the ocean air. This makes me really happy.

Today is my week two bomb day. Along with my umpteen other antibiotics, tinctures, and antimalarials, the second week of treatment I am given the option. Diflucan or Flagyl. I took the pussy way out and went for the Diflucan. I still feel yucky, maybe not as much as if I went with the devil’s drug. I have been really exhausted, foggy, dizzy, and my legs feel like jello. I am looking forward to my evening nap.

I keep losing my train of thought and was stuttery talking on the phone. I ran into my Uncle at the bank to put some money in my medical account, and he was chit chatting away with me. I eventually had to tell him I needed to go, even though I sounded rude I am assuming, but I began to feel a wave come over me, and I knew my time was coming that I would collapse if I kept standing there. Sorry Uncle, we will catch up next time.

I am home, relaxing. Although it is another bomb day, we still won’t be getting Chinese food to save a few bucks. The ocean trip is a huge treat, and any way to save is totally worth it. Greasy, non gluten free breaded popcorn shrimp it is. It isn’t egg rolls but it will have to do. This will be the very last time I will be doing this gosh darn protocol. It has been a very long time. It is the end of an era, and I am ready to start something new. So unbelievably ready.

Wish me luck!


It is my two year anniversary of getting my Powerline placed. It seems like it wasn’t that long ago. I was excited and so full of hope, as you can see in the picture. And the IVs did completely begin to change things around for me. Although they were such a pain in the butt, between being hooked up for daily infusions, sometimes for 5+ hours a day, having an even harder time with bathing, the skin issues and all, I do kind of miss them. I miss the progress I made. I miss the lactated ringers for detox. I really miss those ringers.

Would I do it all again? I am not really sure. All I know is even when time seems to have stood still, it really hasn’t. Coming right around the corner will be year three of my treatment. Yikes.