August Part 1 – Busy Month

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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
-Fogginess
-Headaches
-Allergies
-Fevers
-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?
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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.
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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”!!
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April Part 7 – Press That Button

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I usually somewhat know what to expect during treatments, since I have noticed patterns over the 2 1/2 years of treatment, but I will say I was wrong about this round of Coartem. Since I have started this part of my protocol, it is always the first day that kicks my butt, and it seems to get a little bit easier the following days. This time, it got tougher and tougher.

Could this possibly be a little payback from my heart monitor procedure? It could. Unfortunately, with so many things going on, it is nearly impossible to pinpoint what the cause of issues that come up may be.

On a positive note, I have not had any of the usual crying episodes during this part of my treatment (except when Derek died on Grey’s… but I think you all did too). On a negative note, I have been unpleasant. Swearing at the computer during work, yelling at people that have no idea how to drive, beeping my horn, giving “the look” and waving my middle finger, being snippy at Dave. It seems like I literally just blurt mean things out to him in an instant, without control or thought. Being the good husband he is, somehow he at least tolerates me and can forgive me for being an asshole. Within a few days I will be back to my normal pleasant as pie self… or at least a little but nicer, once some of the toxins go away.

The day after my protocol is buttoned up, I always do a round of juicing, and well, having Lyme brain, I completely forgot about ordering my juices, since I don’t really have the energy to do this myself, and realized how much of a difference the juicing does to help me with detox. Every little bit of my body hurts, and I am exhausted. Yesterday, I slept the entire afternoon and into the early evening. Dave wanted to take me out to dinner, but I literally could not get up off of the couch. It became a movie night, and that was 100% fine by me.

Today was the first day that I was able to take of my Tegaderm from my procedure, which was something I was beyond happy for. My skin has almost what looks like little red blisters where it sat, even though I tried to move around the bandaging every day to give it a little room to breathe. I have my ugly steri-strips on, which have a bit of blood on them where the incision site is, and I will have to wait until they come off on their own. Hopefully it won’t be too long because it is gross. I was a genius and wore a v-neck sweater today to display it though. Tonight I will have to set out something to cover it up for tomorrows clothes. I don’t want to see it, I am sure no one else wants to either 😉 .
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Dave went grocery shopping this morning so I wouldn’t have to go with him once I got out of work and could relax at home, and told me he forgot cat litter and we are all out. I offered to pick some up on the way home, and had my first “press of the button” with my monitor.

It is frustrating still struggling to even pick up one item at a tiny grocery store. I began to feel really dizzy and lightheaded, and my legs turned into jello. Luckily there was no line at the register, so I could get in and out of there, and I sat in my car for a bit before heading home.

While sitting in my car, I had remembered that I needed to call the cardiology department, even though they would see I pressed the monitor, they just would like a reminder… or something like that. No one was in the office, just an on call doctor, so we shall see if anything pops up. The difficult thing with the monitor is that they set it with what they consider to be high or low pulse rates (they can adjust them), but unless you tell them there is an episode, the results that do not show up will be wiped out within a day. So that means it is really important to call and use the remote. Is it my blood pressure or my heart causing an issue? Not sure yet. All I know is that I am planning on starting Midodrine tomorrow and seeing if there is any improvements. I am hoping the herxing will be gone, or at least lighter by then.

I guess it is time for me to try to pick at some household chores. I just want to curl into a ball, but I can hear Dave doing yard work, so I feel bad not doing anything to help inside. Then, I am looking forward to nap time. Happy Sunday everyone!

March Part 2 – Trying New Things

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I am about a week and a half into my break from treatment. I had been feeling the prior few days of going out to dinner and doing a big clean up of my drawers and closet. I was pretty happy I did really well doing these things, even though they seem rather basic, so I feel like it was worth it. I have been exhausted, but for several days after my recouping I was doing better for the most part.

I have been dealing with some effects from my Lupron shot. Although my edema in my thigh and calf have improved, my legs are still really uncomfortable at night, and I am definitely having a lot of circulation problems. My hands and feet feel like they are burning in the shower, I guess best described as if you hop into the shower after a long day out in the cold and snow.

During this week, I have been pretty worried. Not only had I started peeing blood clots, I ended up a few days later starting my period, which is still kicking around. That is NOT suppose to happen when you are on Lupron. One of the points of the shot is you kind of go into a menopausal state.

I decided enough was enough, between the rapid weight gain, the edema, the blood clots, and starting my period and it was time to call the gynecologist. She was not in for the day, so I left a detailed message. I was also curious if I was suppose to take my testosterone cream or not, so I added it to my laundry list of questions and concerns.

I received a call the next day, and my only answer was to stop taking the testosterone. I haven’t been taking it, so that was a completely useless answer as to what is going on. It is discouraging, but I know one of the major issues with individual doctors is that I know I am a complex case, and it really leaves them absolutely clueless.

I made a visit to Dr S’s office to make a chiropractic adjustment appointment with him, order a supplement, and make an appointment with him to get his thoughts as to what is going on. Even though Dr S is my first doctor and I have now made the voyage to my LLMD in DC, I still highly value his opinion on everything, and he is nearly always right. I feel like there is a lot less mysteries when I have a visit with him, and he also has great knowledge about hormones, and I have a feeling the shot has made everything completely out of whack.

This has been a napping week. All I have wanted to do is sleep. I hate my evening naps, as it keeps me up a lot later at night. The other night was a nightmare, as I had already taken my sleeping pills, and was ready to pass out. Cooper, our little guy, got out of bed and during that moment you are about to drift off to sleep, I heard the terrible noise of him peeing in the house. Dave rushed to let him out and cleaned up the mess, and then let Cooper in. It got worse. Cooper must have been relieving some pressure of having to “go” in the house, and his feet were COVERED in doggie diarrhea. Running around the house, jumping up on the bed. Ohhhhhh nooooooo!!! Out of it, I had to find a new set of sheets, a clean comforter, and help change the bed. Dave had to clean the floors in nearly every room of our house, and give Cooper a wash. At 2:00 in the morning. Needless to say, this added to the exhaustion. That was a fun night.

Work has been stressing me out. I have been wanting to accomplish some extra things to get ahead, but I keep on having to go home early. Mental exhaustion can bring on the symptoms and flares with Lyme and coinfections.

Yesterday I had an appointment to get my hair done, and it ended up being a fail. I have been coloring my hair since my late years of elementary school without any issues, and this time my foils got extremely hot. My friend had to do a foil, wash it out in a few minutes, do a foil, wash it out another few minutes later… over and over again. She thinks that maybe the toxins were pulling out through my hair, and that is why I had the reaction that I did. At least she is a miracle worker, and having to improvise I not only have all my hair still, it came out great as usual.

Symptom wise, I went from doing okay to very not okay. My hands felt asleep, but painful to the touch, and I couldn’t feel my feet. I became really out of it and depersonalized. Being the good friend that she is, she gave Dave a call to let him know I wasn’t doing well, and to make sure I got home okay. I had several errands I wanted to run, but headed straight home and to the couch, fell asleep, and stayed there for the rest of the night.

I think I have the answer to why I had the reaction that I did this very first time. I have decided that since it is my antibiotic break, I would do a parasite cleanse. This specific cleanse has a lot of different herbs, and I have begun to see some umm.. things. I am on this cleanse for 10 days, and I am hoping it will be really beneficial to me. After doing a lot of research, you can herx from the die-off of these bugs, and I think that was what was going on. That and perhaps the full moon. Damn you full moon.

I have been talking to my Dad a lot about different treatments and what else I can be doing, other than the parasite cleanse, and he actually ordered me a rife machine to try again. I have used one in the past, but for a very limited time as it was not my machine and had to give it back. I will be interested to see if anything happens.

My next step that I have decided to take into my own hands is starting to drink a mushroom tea. Chagga maybe? I will be starting to have it today, so I will have to give an update if I notice any changes in how I feel or if there is any sort of herx. I figure why not? These are natural treatments, and I want to get better. Like yesterday. Or two and a half years ago. What is there to lose?

Here goes nothing on those. I just want to get back to my old self. I don’t think those things could hurt any, so why not give it a try?

It was a rather interesting morning. Not only did I have a mini temper tantrum trying to change one of my ear piercing jewelry, then yelling at the sink because it ate the ball that screws on the jewelry, I also caught a man trying to break into my car. Stupid me, I left my wallet on the front seat, and my window was rolled down a tiny bit because of my hot flashes.

He was wearing a hoodie, and had it so tight and pulled over that it was covering most of his face. He was trying to open the passenger side of my car, then the driver side, and sticking his fingers in the gap where my window was open and trying to push. Luckily, I always lock my car. Lucky me, I can scare the bejesus out of anyone with my Lyme rages.

I got right behind him in full on tough gangster Kimmiecakes mode and yelled, “Hey! How about you get the f*ck away from my car! My f*cking car!” He sort of mumbled that he thought it was his car, while I was standing there contemplating punching him in the face and there was probably steam coming from my ears. He then scrambled off to what was his car… a rusted old POS that wasn’t even the same color as mine. When he was getting to his car, I continued to yell my choice words, that I will not say, but will tell you that for some reason, I become some sort of biggot hate monger when I have my rages. Trust me, I am really not, but for some reason these are my angry Tourettsy bursts that come out when I am in a full on rage.

Well, at least he didn’t shank me or anything, and at least he didn’t get into my car. He would have been sorely disappointed however, since I have absolutely no cash and he wouldn’t have gotten very far at all with my cards. The joys of Lyme… spending all your money on lame things like antibiotics, supplements, and traveling to your doctor.

I didn’t do anything about it. I just wanted to get to work. It left me rattled and shaky. I learned a lesson though. Make sure my window is all the way up, not even cracked open, and do not leave my wallet in plain sight. I also learned that I really can scare the crap out of people.

I got all my work done, and rented a movie, and am doing a simple dinner staying in tonight. This works for me just fine tonight. Wish me luck on the rest of my cleanse, and that my new tea helps too! Have a great weekend everyone!