November Part 1 – Antsy

Right now I am doing the hurry up and wait game with my ENT doctor.  I recently went back for my second visit and if you remember from my last update, he asked during my first visit if I have Lyme and the nurse told him I had a CDC positive Lyme test. Many of you know how that goes. Lyme can’t be long term, it is allergies. I have allergies with entirely negative allergy testing and a normal EOS. Go figure.

His original diagnosis on top of non existent allergies was laryngopharyngeal reflux.. but he kind of changed his tune during this visit. He basically really doesn’t know. Viral? Bacterial? Medical mystery once again. Go me.

He didn’t tell me to change anything. That is just one “issue” that came to mind, but there is no explanation on why I have had tonsillitis since May. I have followed his instructions perfectly. He put me on protonix, and told me to have little to no fat.

In addition to the whole no fat diet (which I personally disagree with, people need some healthy fats in their diet), I have not been eating spicy foods, acidic foods, or anything else related to reflux.

He didn’t even instruct me to do so, but this has been absolutely awful. I feel like I am breathing through a straw, my throat is closed and sore, and the lymph nodes under my chin and the sides of my neck are excruciating. Not to mention they look horrible, right now you can definitely call me Kimmie the frog.

My ENT does seem like a semi decent guy but has a massive time crunch. I kind of feel like I can’t get a word in and explain things to him. Dude! Let me tell you what is going on! Maybe that will help you figure it out!

He did an exam, and noticed I have a tongue ring. He asked how long I have had it, which to be fair is a completely valid question. I have heard some horror stories from people getting this piercing, but I have had it for 15 years. He did a little inspection (seriously? You didn’t notice it at all during my FIRST appointment?!) and said it looked completely fine.

Dave brought up new ongoing issues such as coughing in my sleep, gasping for air, and a huge increase of snoring. The only time I know any of this is happening is when I wake up gasping for air. I do know the whole reason I am gasping for air is my throat being completely swollen, but everything else I am sleeping and out like a light, so he had to fill the doctor in with this information.

The ENT doc decided to contact my sleep neurologist and go over my nighttime sleep study to see if there was sleep apnea. I had this test done nearly a year ago, I don’t think they missed anything, and the whole tonsillitis issue had developed over 6 months later. I’ll entertain it though. Why not.

So the debate with the ENT doc right now is surgery to remove my tonsils and adenoids. A lot of people call it a “T and A” surgery for short, but having a dirty mind my thoughts immediately go to having tits and ass surgery. LOL I am content enough with what I’ve got, but with my mind in the gutter, I’ll just keep it in long form, a tonsillectomy and adenoidectomy.

He is hesitant to remove any body parts so he is on the fence, as adult surgery is far more difficult in the healing process than a child. He told me it was excruciating, and would be the worst pain I’ve ever experienced. Nah Bub. Look at the shit I have been through over the years. A temporary few weeks of recovery that is probably pretty unpleasant is worth hopefully fixing my throat. It’s been a long time with no improvement. Yank those bastards out already.

Basically, I left doing the same thing, he told me the protonix wasn’t working at all but to keep on it. Okay? He then wrote down a concoction to gargle with: water, salt, baking soda, and peroxide. I tried to get a word in but rush rush rush, I wasn’t able to explain that I already do a variation of this, and off I went. “See you in 6 weeks, I need to do some research and see if there is improvement”.

Dave and I got in a little argument on the way home, as he kind of fixated on the tongue ring potentially being an issue. Were you even at the appointment?! The doctor said it was fine. Regardless, I decided to take it out. Maybe it would help?

I really don’t want to go back for my next appointment and have the doctor tell me to take it out, see what happens, and then have to do another, “See you in 6 weeks”. And then get the “I told you so!” speech from Dave, haha.  It’s been just shy of 6 weeks from when I removed it. Unfortunately it has made absolutely no difference. I guess you could say that I now have the power of the words, “I told you so!” to Dave. 😉

I had an appointment with Dr S shortly after my visit with the ENT doctor. We had previously discussed VIP spray, for shits and giggles, but both agreed it is not the right time to try it out. Reasons being – you shouldn’t use it with an active infection, it is used kind of at the end of treatment. I am not there yet. Also, spraying it in my nose is probably a really bad idea with what is going on with my throat. Maybe we will revisit that idea in the future.

We swapped out my antiviral supplements, I am now trying out Monolaurin. We talked about trying out a prescription viral medication but I am on so many prescriptions already (off the top of my head I think 9?) I felt a little more comfortable just trying out a supplement I haven’t tried before. Dr S gave me a blood work sheet with several tests and told me to wait a few weeks to go for a blood draw, to do the Monolaurin for awhile and also be on antibiotics when I take the test.

Though my basic bloodwork had a lot of high and low levels, they weren’t dramatically off. However, my WBC was high, which pretty much never happens with me. So that’s new. Of course, my immune complexes were off the charts high. Between those, my body is trying to fight something, we just don’t know what. I tested negative for EBV once again… which is good and bad I guess, as well as CMV.

The thing is, the immune complex test basically is showing something is really off, but it doesn’t tell you what. Having active EBV for years would at least be an explanation. It really could just be my active Lyme and Co infections. I’ve had all of these for over 25 years though, and my really bad lymph and throat swelling is a new issue. I got nothin’. It’s frustrating.

Dr S suggested writing a letter to the ENT doctor about me, to possibly push him along. Here’s what he came up with.

Dear Dr K,

Kimmiecakes has been a patient of mine since 9/2012. In that period of time she has had multiple evolutions of pathology including the onset of Tourrette’s. severe fatigue and disability, vertigo, neuralgia, swollen nodes, migrating polyarthralgia, severe headaches, mitochondrial myopathy, altered mental states, variable anxiety, depression, confusion, lymphadenopathy, bells palsy, POTS and more.

She is currently being evaluated by you for swollen tonsils which has been DDX as reflux and allergies. I understand that there is a presumption that Kim’s symptoms are reflux or allergy. She has normal Eos and low IgE antibody. There was been no changes w/ antacids and she has swollen nodes in other location that indicate the tonsils aren’t the only swollen site.

I am currently trying to differentiate between post lyme infectious syndrome or an active infection. The active infection may be borrelia and associated organisms or not. I am not certain.

Kim’s main diagnostic markers are high C3D circulating immune complexes (Raji cells) and high total complement and high C1Q binding.

We have done extensive testing for autoimmune disorders, lymphoma, persistent infections, cytokines, thyroid, hormone balance and more.

What I do know is that Kim has circulating immune complexes and an apparent inflammatory disorder. I am writing to request that you do infection testing on the tonsils with removal. I suspect that Kim has either a persistent infection bothering her immune system or something resembling PANDAS. (autoimmune reactions to strep or other infections that cause neuropsych disorders.) I feel that Kim would respond to Gamma globulin injections, esp to lower circulating immune complexes, but thus far Kim hasn’t met the diagnostic criteria for those injections to be covered by insurance.

The testing I am recommending

Viral culture; Ie labcorp 008573

Anaerobic and aerobic culture with gram stain: ie labcorp 008003

Fungal culture w stain: 188243

Please add more as you see appropriate ie specific mycoplasma culture w/extended aerobic culturing.

Thanks for your time. I know that these request fall out of the standard of care. Kim’s pathology certainly falls out of that standard.


Dr. S

Side note: I obviously changed our names as I always do. Also, Dr S. used careful wording as he knows the ENT doctor doesn’t believe in chronic Lyme. Hence, the “post Lyme infectious syndrome”. I also am not sure if this violates some sort of HIPAA.. HIPPA.. HIPPO.. whatever it’s called. I just sign the paper and know it is a privacy agreement. I think with the names changed and it being a letter and all it’s fine. I won’t tell if you won’t tell. Haha.

I will say, as much as I know Dr S has been frustrated at not being able to fix me, and has taken it out on me a little bit a few times, he wrote an amazing letter. He is pushing toward possibly PANS/PANDAS and IVIG treatment. If you look at my symptom and medical history, and the fact that I am considered a “strep carrier”… I am not positive as to what that means exactly, it is certainly a possibility.

Dr S showed me the letter before he sent it out asking for my thoughts and anything else I wanted to include, and then apologized knowing with everyone I basically have to facilitate my own care.

Really? This situation is completely okay. I have a doctor that is advocating for me, and is really trying to help out in anyway he can. Doing this favor for me is definitely above and beyond. I am so grateful. Now, whether the ENT doc poo poos us is a whole other story. Let’s hope not.

Maybe I would benefit if this hunch is correct. Wouldn’t that be awesome?! Get my swollen tonsils out, fix my throat, try IVIG if the ENT doc goes for it, and have a lot of the neurological stuff I deal with possibly go away?!

In the meantime I have been doing treatment. Alinia, Augmentin, and Cipro. I was also taking Mepron but I ran out and don’t have the $1600 or $1800 for a bottle. I can’t remember how much but my insurance doesn’t cover it. That’s okay though. Alinia hits Babesia, and this has all been a doozy. I have done several rounds now, and some days I was rendered completely useless. Dave has even had to hold me up to bring me to the couch.

Let’s play my violins with what I have dealt with during past few months. I have been depersonalized and foggy. I have gotten lost a few times driving, trying to find landmarks and of course not freak out, even though I have lived in my little town pretty much my entire life.

My torrential sweats are back. My POTS has gotten worse. I’ve had several times that I have had to lay on the floor for a bit. I’m a little bummed though. One time, my dog Cooper came up to me and kind of put his nose on my forehead and did a circle around, then went back to Dave’s chair. He was kind of like, “Ma? You alive? Yup. K. I go to chair now”. I think Cooper has about zero potential of being a therapy or an emotional support dog. What a dinkus. At least he’s cute.

I have been having speech issues with finding words, trying to remember what I am talking about, and stuttering. Body rocking. I get the shakes and have the mysterious head pressure that makes me lose my vision. I have been nervous a few times, getting an aura that I am all too familiar with, that I could possibly have a seizure. I know the drill. Pop an Ativan and seek cover. Luckily I haven’t had one.

I still have my tics of course. One day last week I was a hot mess. I was all over the place. Body rocking, twitching, doing the thriller dance, making noises, and I really wanted to go to a local place and pick up a detox juice on the way home. It has beet, kale, carrot, apple, and ginger. I always ask them for extra ginger, it helps my nausea a lot.

I grabbed a seat and waited for for my juice while I was dealing with all these very visible neurological issues, and when I was about to head out the door, a young couple sitting a few seats down from me said to one another while glancing at me, “Did you see her?!” The least you could do is wait until I am actually out the door. Geez. Maybe it is how people are raised now, I am not really sure, but I know my parents would not have been happy with me if I pointed out someones issues and discussed it in public, or like I have experienced many times, people coming up to me and asking, “What’s wrong with you?”. I don’t really take it to heart anymore, it is just a reminder that I’m still the way I am.

Some days however, these visible issues are near nonexistent. I have accomplished a lot, from cleaning sprees, errands, and even a Rite Aid trip with no sunglasses on. I went to a birthday dinner with several friends about 45 minutes away from home, which is a long time in the car for me at a noisy busy restaurant. That is really hard on me. Too many conversations around me, it being loud, it’s hard!

Dave knew pretty quickly it was not going to be fun for me and asked me if I was okay. He knew I was getting messed up even just sitting at the table. Even though I was definitely “off”, my body ended up adjusting. I wasn’t normal but I wasn’t to the point of falling apart, passing out, or having a seizure. All these things are great!

I had a kind of cruddy story, so I will share a funny one. It’s all about balance. Yeah some parts probably sound awful, but I have a sense of humor. You have to just laugh about it. Our workman’s comp company does a little audit every year and they want you to give some information about the employees and basically an update. When I logged in to do it, I noticed there was a bunch of personal information that was incorrect in their system. Even my Dad’s name was wrong!

I hate talking on the phone. For some reason it makes me foggier and even dizzy for any extended period of time. While calling the insurance company to correct their information on file, I left a long polite, yet angry message (I had already emailed the auditor to fix these errors and my Dad had also called them about it), I ended up completely forgetting who I was talking to by the end of my message, and I am pretty sure I ended the call with, “Love you, bye!” Whoops!

After I left work that day, I had to withdraw a little bit of money at the bank atm. I stared blankly at the machine, and realized I had no idea what my pin was. The pin I have had for years, the pin I had just used that morning. I went into the bank to tell them I forgot my pin, and I was also worried I was going to be locked out of my account. I couldn’t remember how many times I tried it. The teller told me to try it again, and it would say something about it being locked out with too many attempts.

Once again, I stare at the machine and had the “Aha!” moment and remembered it. Yayyyyy! I withdraw the money I need and pop back into the bank and let her know it worked, and I that I am an idiot.

THEN, I am standing in the parking lot, and begin to get that heart flutter panic feeling. I couldn’t find my car! I was wandering around the parking lot, looking for my lime green Lyme sticker in the rear view window. Finally I realized that I didn’t have my car. I had been driving my husband’s car for the week as mine was at the shop for a repair. Oy. That is one of those days that I opted for an easy dinner and go right to sleep.

The treatment hasn’t helped my throat any, I think the Cipro might be helping the bumps on my tongue a little bit though. I can tell a bit of a difference, even just these little accomplishments which means although there has been some bad days, there has been moments of blue skies. At least I know even though treatment sucks, it is doing something.

I have noticed some of my classic Bart symptoms coming out to play. I am getting “Bart feet” every night. For those of you who aren’t familiar with what this is, imagine wearing a really uncomfortable pair of shoes all day, and then walking barefoot on chards of glass and fire. That is Bart feet. I generally can’t feel from my calves down, but when I can, this is what I deal with daily. I have also noticed a bit more paranoia and seeing things at nighttime as well as some auditory hallucinations. However, these symptoms are not remotely as bad as they once were. I will also note that one relatively common symptom of narcolepsy is seeing shit at night. So maybe that is a slight overlap.

I had an appointment with Dr S yesterday, just for an adjustment, but we chatted a little bit. The previous night I was in excruciating pain. My stomach was as hard as a rock and bloated, not like a normal looking preggo bloated. I have been having quite often this pain that travels from my stomach and almost goes up to my non-boobs. It’s weird. I guess hard to explain. I have continuously had dull but also sometimes stabbing pain on my upper left side of my abdomen and this was way worse than the usual pain. He took a looksy, I had the sneaking suspicion of what it was and I was right. My spleen is enlarged. Gah!

I have been treating Babesia and this is an issue I’ve had in the past, and it resolved in time with continuous Babs treatment. So, it could be that. But, your spleen is also involved in your lymph system. And what has been a major issue since May? Very swollen lymph and tonsillitis. Maybe connected. He also noticed when giving me an adjustment not only is my throat all messed up, I am now having swollen nodes in the back of my neck. Whyyyyyyy…. I guess I will have optimism to share this with the ENT doctor for yet another additional push.

Dr S told me to take a break from treatment for awhile. I now have the spleen issue, but my stomach has been pretty messed up as well. I have been babying it as much as possible, keeping up with my probiotics and loading up with glutamine powder and it hasn’t been helping. It’s been sore, bloaty, and lots of trips to the bathroom. Let’s just put it this way.. I went to the pharmacy the other day and there was a super old guy with a walker in front of me. OMG WHAT IS THAT SMELL??!!! Yup. That smell was some pungent poop. My stomach has been so bad the thought came to mind.. ummm.. is that him or me? False alarm guys. It was him. Phew. That’s when you know your stomach ain’t right. LOL

I hate to take a break even though I agree with Dr S. Last time I had a really messed up gut, I had to take a few month break. I don’t want to have that happen again. I ended up having to take digestive enzymes, mag citrate, pre/pro/ and phytobiotics, pretty much anything as I stopped even being able to digest my food. It would just chill in there. Let’s not have this happen again.

So, now I wait. My ENT appointment is on Monday. I am really trying to not thing and worry about it, but I am. I can’t help it. I am very antsy. I have everything sent, the letter, copies in hand, and I am going to have notes and questions prepared. That’s about all I can do. I am really hoping he will just yank my tonsils out. I am tired of waiting. In addition to this, my health insurance has gone up in cost dramatically, and I want to get it done before the new year to not have to deal with my deductible. We shall see! Wish me luck. Although you all know I am Miss Positivity, I have the feeling I will need it.

Happy weekend everyone! I will try to update as soon as I can, but if I slack I hope you all have a wonderful Thanksgiving. Remember everything to be thankful for, and of course don’t forget to stuff your face with lots of good food!

October Part 2 -Hmm.

There has been a lot going on this month! Right now, I am focusing on fixing broken pieces, trying to get myself together in order to get well. It hasn’t been a good month, but I at least had a moment I was able to get out there and not be a hermit and enjoy myself for awhile. Halloween is my favorite and I pushed myself with a lot of mind over matter and a nice long nap before going out with Dave and my friends.

I had an appointment with Dr. S and there is a lot to work on. Thank god he writes notes about the appointment, I was about to crash and fall asleep so I was completely out of it.

He actually ended up telling me to head home and make another appointment, see how I do with my new supplements and skip my chiropractic adjustment for the day.

He saw my pictures of the bloat and stomach issues. I am going to give a little side note and some words of wisdom before I continue on.

SIDE NOTE: If there is something funky.. mysterious rashes, swelling, anything really……..TAKE PICTURES, ALWAYS!!!
A) It is easier to just show a picture of what has been going on if whatever it was isn’t there anymore for your appointment time.
B) They can’t help you if they don’t know what it is just by your explanation.
C) You can kinda sound like you are full of shit, especially if you are seeing a new doctor without proof.
D) Seeing is believing.

He takes my word for it either way, as I have had a good and long relationship as a patient with him… but… not exactly knowing without that picture really isn’t super helpful. Especially if you are a mumbly, stuttery blob in the chair, in my case tweaking and cringing as well.

Okay. Back to my story. No more amoxicillin for me. As you saw on my last blog entry, I am definitely bloated terribly and am having really bad stomach issues. The game plan for this week until I see him again is to work on my stomach issues. Lots of pre and probiotics, digestive enzymes, oil of oregano, GI Integrity, switching to magnesium citrate to try to get me poopin’ normally again.

Not going for several days apparently is an issue even though I am not straining and just forgetting, and I have always had issues with my liver so I guess it isn’t helpful to it and I am very toxic.

Well, nada. Zero difference. It stinks to get a bunch of stuff thrown at me but nothing seems to be working.

When I go back I am going to do further testing, to perhaps pinpoint more about the bacteria, as I already had a test that showed I had a pretty severe bacterial infection, but learning more might help with a treatment plan.

Gut health is so imperative to any sort of healing. It is worrisome that working on diet for gut infections, particularly SIBO, supplements, the probiotics etc. are not touching this. We will get it figured out. It is really important to be on track and I know I just need to be patient.

The next thing on the agenda was kind of random. But Dr. S kind of seemed baffled all of my gynecologists that I have seen in this past year showed zero concern I have not had a period in over a year. That’s a long time! I certainly haven’t missed it. Dr S. wants me to be back on track, and hormones are definitely out of whack if it has been this long.

Progesterone cream it is. I have started that but have still yet to finally get my period. I kind of feel like I am a ticking time bomb and am going to eventually blow, and possibly bleed to death as it has been so long. Haha. Only kidding.

I am only 5 days in and woke up this morning with hellacious cramps. As you know, if you have followed my story (you should, I’m awesome), I have endo and it isn’t fun at all.

I was so late for work. I was in so much pain that I was dry heaving and kept on blacking out. I looked at the clock and pushed myself as hard as I could to get my shit together and make it through the day. I actually am pretty busy with lots to do, and a dinner I need to go to tonight, ugh.

I grabbed a coffee at the gas station on my way to work, and decided to buy a box of tampies, just in case. I actually had to look at the different boxes like, “what are these? I forgot all about you guys! ” LOL Like I said, I am pretty sure it is brewing.

Sorry if that is graphic or gross to you talking about my time of the month. Or that time in well over a year. Whatever. I promised you all the good, the bad, the ugly.

My Tourette’s hasn’t been as bad, but I am still doing the cringes and hand raising and a few “bahh!!!”s at night. I can deal with that all though. It is what it is.

Fantastic news.. I have CHRONIC EBV/MONO… No, this is not just flares people get that already have it in their system and it gets reactivated. That is common with Lyme.

I have it all the time. 24/7. 365 days a year. Not a days break in between. Okay, that really isn’t fantastic news.

What to do? I have been on several antiviral herbals, but unfortunately there is no cure for mono. Rest and all that good stuff. I certainly get enough rest! Haha. I added monolaurin (spelling?) to my antivirals I am already taking. Hopefully it will finally get deactivated.

I asked the risks involved, and I guess you are at a much higher risk for cancer if you are in the situation I am in. I have so much crap going on, I am not going to even be scared about it. I just want those viruses to simmer down and go away.

Once again, reoccurring theme, I am still sleeping my life away. It keeps getting worse and worse and I don’t know what to do about it. I almost get in a panic if I can’t go fall asleep somewhere.

I had to sleep after seeing Dr S after my brief appointment to get my back cracked and we decided on further testing for stomach bacteria. (Yes, I know I had already mentioned this but I have taken forever to write an update and have been writing bits and pieces for about a week now.) I was toast.

That day was yesterday, an 18 hour of sleep day. And I will tell you, I am so exhausted today. It hasn’t made a difference. I seriously want to cry because I feel like this has taken over my life.

Giving a disclaimer to those who suffer from chronic illness can have extreme fatigue, I am not downplaying or minimizing anyone else in my post today with my personal ongoing issues. It sucks all around for everyone.

I have been through the chronic illness fatigue and I will tell you this is beyond different. Something is very wrong. I have been through hell and back with this illness, and this is honestly making me scared.

I can’t wait until I see the sleep doctor. I will obviously mention the mono issue. But everyone seems to think it is something more, most likely narcolepsy with the array of symptoms I have. I know my body, and this isn’t just a mono issue.

I hope I get some answers and help. This is seriously destroying my life and making it really hard to continue to make strides in improving.

I have been trying to do things. We were invited the other day to watch the football game with friends right down the street. Nope. Slept thru it and we didn’t make it. I have to sleep for hours before trying to go anywhere, if I am able to get out of bed at all.

3 hours for a quick dinner, several hours to make it to go to a Halloween party with friends. It is one of the very few things I look forward to every year. It was a major struggle.

I also feel like an asshole to Olive as I have to put her in her crate if I can’t leave her in our fenced in yard, it has been too cold or rainy. I hate doing that when I am home but I need to sleep. She is a troublemaker and can’t be trusted though, but I really feel mean to do that to her.

I still have my classic Babesia symptoms, not seemingly as bad, but Bartonella has come out to play. Bartonella feet hurt a lot at night. Anxiety, anger, and paranoia. I am entirely oversensitive.

Each and everyday I have moments when I freak out thinking no one cares about me, my friends hate me, Dave is annoyed by me… I make up all these scenarios. And I think it so much it becomes real.

Obviously it is not, but it is still real very to me. I need to just try to relax and know that this isn’t reality, I am putting this all in my head. It is like I need reassurance from my friends and Dave… but the thing is.. IT IS ALL IN MY HEAD!

It will pass, it always does. It seems like it comes and goes in waves. But in the meantime I hurt pretty badly purely by my imagination.

The hallucinations have calmed down a bit though… Dave at least hasn’t had to pick through my food for spiders. 😉

My happy moment was Halloween. It was hard and I paid for it dearly for several days. I was lucky, there was plenty of places to sit and it wasn’t a crazy wild party or anything. We had so much fun and I was so glad to get out. I actually did okay. There was a few moments little waves hit me but I always came to and enjoyed myself. Again though, even though I was clearly invited I felt the crazy fake scenarios in my head of paranoia, I did try to be as much of a social butterfly as I could be.

I love homemade costumes. This year just wasn’t the same for me. I am usually ready at least a month in advance, and plan forever, but this was literally the day before I put our costumes together. I think I did alright though.

A goal I need to work on is to really get back to a ritual of my daily exercises given to me by my PT, and use the bike again. Suck it up when I am all disoriented waking up, or do it first thing in the morning even if it screws me up for the rest of the day.

My massage therapist warned me that I am losing muscle in my legs. This is the first time I have been told this. Since I have been really sick and a couch potato, over 4 years ago, I still had a bit of muscle. It was likely because I was so fit and active before my body said, “when”.

That’s not good at all. I mind over matter a lot of stuff and have done amazing things throughout my Lyme journey, but I will admit lately I have been slacking on the exercise. Really truly slacking.

And it makes a big difference with POTS as well. I need to boost my circulation. It isn’t fun to have to turn the shower off and curl into a ball on the shower floor because you are going to pass out.

Yup. A goal. Well it shouldn’t be a goal. I need to dedicate time to do this, even if I often sleep 15+ hours a day now. 10-20 minutes is a heck of a lot better than nothing.

Wish me luck with everything. Told ya, I have a lot going on!

Have a great day everyone!


And of course, Miss Olive. I have no clue how the heck she got up there. My Queen of the mountain.

October Part 1 – Why Hello There!

I wish I could tell you, “No news is good news”, but things really haven’t panned out to be that way the past month. I have begun a small antibiotic and herbal regiment (well, maybe it is small, maybe not…. I am just basing it off of my massive scale of treatments that I have been on in the past.

I had an appointment with my neurologist and was kind of pushy to try to get some testing done before the end of the year as I have no idea if there is going to be a giant spike in the cost of insurance. Let’s hope not. But, better safe than sorry.

I gave him the spiel about how I have been doing, and was really hoping to get some nerve function tests to at least see if it is permanent damage from my mid calves to my feet or if there is hope for further improvements. Makes sense, right?

Of course he didn’t order a test of any sorts for that, and my notes for the appointment even said, “NUMBNESS FROM THE MID CALF DOWN TO FEET, DON’T KNOW OF THE CAUSE”. For real??!!!! Pretty sure you are the Doctor, Sir, why don’t you figure this shit out. And before January 1st. Please and thank you. Ugh!

He did however seem pretty concerned about my sleep and told me that was in his mind the first priority. I of course was a little dishonest, and didn’t tell him my incident falling asleep for that split second on my way home from work, I just couldn’t, but I let him know my general sleep schedule, and my “I actually get a day off” sleep schedule.

I am seeing a sleep specialist next month, as he really believes I either have narcolepsy or possibly sleep apnea.  I really didn’t know much about sleep apnea, other than from watching shows with really heavy people and they have to wear these masks as they sleep. He told me it can really happen to anyone, it is just a higher risk factor.

He then told me, which made a lot more sense is that if you have very bad sleep apnea you may never really reach the higher levels of sleep, and that would cause the excessive daytime sleepiness.

Of course when telling the neurologist about the hours I sleep and trying to gather as much information as possible, with Dave knowing I was going there and was going to discuss these issues, he failed to tell me until AFTER the appointment I snore very loudly and make weird throat noises in between trying to swallow, chewing and choking.  Geez, super helpful Dave.

I suppose narcolepsy is a possibility, Dr J has also mentioned it to me in the past, as there are many similarities. I once again was just thinking of the specials on TV in which people fall right to the ground randomly and it is like an every moment event. I guess that isn’t always the case, those are the most severe cases. Guess I need to stop watching TLC specials perhaps.

If absolutely nothing pops up, then I will know that I am still as sick as shit and my body is in healing mode. People tend to have one side or the other for a spectrum of treatment. No sleep, or sleep all the time. This has just been an ongoing thing for years and years and has only gotten worse.  This is also much different though, it has gone on for a very long time without treatment too.

It is awful to be so debilitated, falling asleep literally mid conversations, getting anxiety if I can’t right then and there go and take a nap, feel a wave of tiredness from laughing too much or any sort of strong emotion, confusion and completely out of it if woken up, and I sleep for up to 18 hours a day.

With it only getting worse, it has not only messed up my ability to keep trying to have my legs moving to help with POTS, I have also missed out on a lot of things. I have missed a few birthday parties this month and have been a bit of a hermit. We try to go out to dinner on Saturday nights but take-out seems to be a common theme. The few times I have gone to do anything, simple things, I have looked at the clock wanting to go home, which I hate. I love my friends. I love being a part of doing anything, and even more having an invite even if it is an empty one. This isn’t me. This all around sucks.

Dave and I went to a fair over the weekend and although I made it a little bit, I had a very hard time. I couldn’t feel my legs and had to hold Dave to walk at all, I started getting completely out of it, rocking and having my Tourrette’s scrunchy faces. We left before anything got worse and I needed a near 7 hour nap to recoup from the time at the fair. At least I got to see the bunnies. They’re my favorite 🙂

I have had some recent blood work done and my cortisol is completely normal.. not really any explanation. I guess spinal taps can show some sort of information on it but I have yet to have a spinal tap for any sort of issue so far, as well as sleep studies. Who knows, we will see what the sleep specialist says!

My start of the month was a round of Coartem and it did go better than my previous round. I had the classic Babesia symptoms: air hunger, sweats, hot flashes.. that sort of thing and was pretty emotional and drained. I hated the air hunger. I couldn’t even lay on my back or on my stomach, I had to sit upright to breathe better. You just have to try to relax your mind and try to focus on your breathing, in a relaxing sort of way and not panic. Panicking only makes it much worse.

Treatment has been making me pretty nauseas and out of it. The other day (when I say the other day it might have been several weeks ago haha) I made an oopsies, on my way home from the Doc’s office, I just plain didn’t feel like cooking and decided on Chinese. I went to the Chinese food restaurant and waited and waited for my food to pick up, and a gentleman came out and said I never called. I got in a rage and was persistent that I had called in my order, and he then asked for my phone number. Low and behold, he checked the caller ID and I did NOT call in my food there. So, I made it to the other Chinese food restaurant and my food was sitting there waiting. Oy vey.

I have been having moments of being completely overwhelmed. With work, and with life in general and have had a few mini breakdowns. Today, I had to leave work, I just couldn’t do everything I needed, but absolutely had to run a couple of errands in town. I sat in the parking lot and did my best not to cry. The bank, dropping mail in the slot, and picking up dog food seemed out of reach for me. Don’t you do it Kimmiecakes! Don’t cry. Push. You got this. And I did. I can barely keep my eyes open right now and I will be psyched as soon as I am done this to take nap numero uno for the day. I have just been slacking so badly I didn’t want you all to think I have fallen off the face of the earth.

I have had hallucinations at night, seeing my usual spiders. I made a small plate of vegan nachos the other night to take my pills, and screamed out loud, convinced there was a spider in my food. Dave had to pick through my nachos and assure me that there was no bugs in my food. Bartonella is at it again. Not to mention the paranoia, anxiety, and just plain sadness lately. I am not really sad I don’t think it explains it right, I am more just frustrated. I always focus on all the good in my life when I get like that and pull myself out of the funk I end up getting in.

Neuro issues in my feet have taken over. Last week I hopped in my car and looked down, and there was blood all over my big toe and smeared on my feet. I must have hit my foot against something. Not only that, a big blister formed on my little toe. I am kind of glad I didn’t feel it. I have the feeling it would have hurt like a MOFO.

I am now taking a break from treatment again. I have begun to have major bloating issues. I measure myself to see if I am bloated or just feel that way, and I have gained over 4 inches in my gut in less than two weeks. FOUR INCHES!! That seems like a lot in such a short time.

Something is definitely going on, so the plan until my next appointment is to see if I can get the bloating down before then, and if not that will be my main focus again. I am assuming the gut infection is back in full-swing. I am sure I will be getting some testing done next month.

Yikes! I look like I am preggers. This is after the first thing I ate for the morning. A small piece of steamed haddock. Morning fish? Yeah. I know. I work in the fish business. No breading, no gluten, not saturated in butter or fat, and very small amount. And my stomach only gets worse as the day goes on. I am grateful it is now sweater and legging season! Haha. Silver linings.

So, I will continue on with my FODMAPS diet, behave as much as possible, and load up on probiotics, prebiotics and FOS. Wish me luck on this one haha. At least at this point I am not remotely obsessing over it and hasn’t been a dent to my self esteem. It is what it is. Happy Wednesday!


Annnnnnndddd of course here is Miss Olive! Getting big! Also, notice my blue foot. LOL

Note: Feel free to share, share away! I like to think I help others relate in some small way, and educate others by writing. But, please use my link or hit the share button on FB and do not copy and paste as your own work due to recent copyright infringement issues.


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.


Knowledge is Power

74970_10151251987502404_1046823006_n I cannot stress the importance of education before starting a new treatment, a new medication, or having a procedure done. One should always take the time to research on your own, as knowledge is power, and it is necessary to be your own advocate.

Throughout my journey with chronic illness, I cannot believe the amount of people I have seen that go into a situation completely blind. Believe it or not, doctors are human, and they can make mistakes and can give the wrong advice for you, whether it be a new medication (I was told to take a medication, that would give me a high risk of stroke because of a blood clotting disorder, which was completely missed). Yikes!

Anything you are putting into your body, you should have full knowledge about it. You can say no if you don’t think something is right for you.

You should know the side effects of your medications, as well as drug interactions. If there is a procedure that you will be having, learn about how it is done. If you are getting an implanted device, you should know exactly what it is and how it works.

In my experience, I have found it beneficial to get second opinions. Even if you love your doctor, it is always good to have a new set of eyes on your medical history, and how they interpret it. There is nothing wrong with going to see another medical professional to get their input on what they think is right for you.

I have outlined some things you should do to prepare for your first appointment, as well as great tools and recommendations to help you during your appointment.

– Don’t ever be afraid to ask questions! If you are unsure of something, or something isn’t clear, never be afraid to speak up.

– Bring a notepad with you. You may have questions that you already want to ask when you go to your appointment, but as soon as you walk through the door you draw a complete blank. Having questions you want answered in your hands is highly recommended.

– Ask about the medications recommended to you. Find out why, and of course as I mentioned above, learn about what you will be taking.

– Bring someone with you to your appointment if possible. This way, you can have an extra set of ears if you are missing something, and as I have experienced during appointments, I might possibly hold on to one bit of information, and the rest goes through one ear and out the other.

– Find out what your diagnosis is, if they have established it. That way, you can find out as much information as possible on the particular condition.

– Bring a recorder. Ask your doctor if you can record your session.

I should note, after any doctor visit, you should ALWAYS go to medical records, and get a copy of their notes from the appointment. If you are getting blood work done, get copies of your results in your hands. I have had past experiences with doctors being quiet with what they say to you in person, yet if you have the records, you can get a feel of what your doctor is really thinking. Having all this information in your hands gives you the ability to be able to ask specific questions and having a file with all your information is an excellent idea.

Now that your doctor’s appointment is over, you might have to have testing or a procedure done. This can all be scary, and asking the right questions will not only give you information you need, but also put your mind at ease.

– What are the possible risks and complications? What is the most common issue having procedure done?

– Have the doctor go through the procedure with you step by step. Don’t be afraid to ask for details on what is to be done.

– How long will the procedure take?

– What do I need to do to prepare for this procedure? There may be specific things your doctor will want you to wear during your appointment, if they would like you to remove all your jewelry, should you “hold it in” if you have to go to the bathroom. Commonly with many ultrasounds that I have had, they have preferred for me to come in with a full bladder. Your doctor may want you to fast for your testing or procedure.

– What are the benefits of having the testing or procedure done?

– What will the results of the procedure or test tell me? – If there is a device implanted, ask what type of device, and if there has been issues with the particular device in the past.

– If a medical tool is passed along from patient to patient, ask how it is cleaned and cared for. Some procedures, such as endoscopies, can have a risk for infection if the tools are not maintained properly. I would like to include a link with more information about this topic ..

– Ask about other options. If you do not want a test or procedure done, ask what alternative options you may have that might not be as invasive. Ask about the benefits of each option and weigh the pros and cons of each. Ask why they think the route they are taking is the best choice for you. You have now completed your testing or procedure.

There are more questions you should ask your doctor before leaving the office.

– What is the healing time? – If you get a PICC line or any IV device, make sure you feel comfortable with how to use it.

– What are my limitations and for how long?

– Ask what the results and findings were. Once again, obtain your medical records to keep on hand.

– Is there any side effects or complications you should worry about?

– When should you call your doctor if you believe there is a complication or issue? Can there be a worsening of symptoms?

If you believe there is an issue or something is worrying you, contact your doctor as soon as possible, or go to the ER if you believe there is an emergency.

I hope this helps my readers and brings awareness to you all. Please understand the importance of education and research. Be your own advocate! Wishing you all luck at your first appointment, testing, or procedure!

Things NOT to Say to Someone With a Chronic Illness

I thought of this entry because as I shared the other day, I recently heard one of my friends ran his mouth saying I pick and choose what I do, I don’t do things anymore not because I am sick, but because I am lazy. HA. I would never ever wish what I am going through on my worst enemy. Until you live a day in my shoes, zip it. I handle a lot, I think anyways. And with a smile to boot!

For myself personally, I don’t care if I am vomiting all over the place, want to cry in pain, feel as high as a kite, can’t feel my leg or feet, or see things that aren’t there, I get up, and go. I need to. For me. I need some sense of independence. It keeps me going. It keeps me from giving up. It gives me a sense of normalcy. I need to work and make money.  I need to work to feel sane. I AM NOT LAZY.

I do what I need to and overdo the things I still do and in turn my nights are usually horrible. If you know me personally, you haven’t seen me out dancing, having cocktails, or singing karaoke in a LONG time. Do I miss it… YES.

Is it because I am “lazy”? Absolutely not. I miss my life. I miss going out and doing things. I use to always do things outdoors, like wheeling, target shooting, swimming, and walking my dog. I use to waitress. Now I simply can’t.

That was a huge stab in my back. Don’t ever judge me unless you have lost complete control of your body and your mind and can’t awaken from this horrible nightmare that is Lyme and co-infections. Ever.

I have even heard from a Lymie saying if I am so sick why am I working? She said she couldn’t because she was “way worse”. Listing things off to make sure I know that she is much worse off. I roll my eyes every time, because I don’t sit and compare myself to others. I am me. You are you. I am not going to list of my gigantic list of problems and demean yours.

First of all, everyone is different. Everyone’s symptoms are different. Mentally, people handle things very different than the next person. And how dare a Lymie say such another thing about another? It is not a competition. If it was, you win! I DON’T want to be sick. If you want to be the “sicker” one, than go for it. We are all on the same team here. Advocacy. Awareness. Healing together and providing hope to one another.

It drives me insane that many of us seem to attack each other. We fight so hard to get people to listen to us and get the CDC and IDSA to believe in chronic Lyme, but it is difficult when it seems like we are not united like we should be. We all need to be together in this. Being different from one another does not mean that we are not alike. We all have a common cause even though our stories can be much different from each other.

Some might not be able to work or do anything because they can’t move or literally get out of bed. Some need more help than others. Some can no longer drive and don’t have a good support system. Some are just plain much sicker than others. Some people might look completely normal to the person next to them, but they are completely suffering on the inside.

Never judge another person’s journey. Whether it is in sickness, or in life. You just don’t know unless you are that person. It is unfair, and it is not right. 

As you can tell, I have a little bit of an angry tone. LOL Lyme Rage. It’ll get ya. Crazy Kimmie. Roar.

So the first comment  is what set me off and brought me to the idea on doing a post on things not to say to someone with chronic illness. It reminded me of every little thing that someone has said to piss me off or annoy be during the course of being sick.  It could apply to any illness really.

I hate it when people assume that Lyme is just some occasional joint pain. That is one of the reasons why I share my story. I hope to educate others about this disease and maybe they will learn the complexity of this disease.

Invisible illnesses can be extremely difficult because they are much harder for people to understand.  Lupus, Crohn’s, Fibromyalgia, personality disorders… there are so many that people suffer in silence.

My illness has been somewhat different though, as my illness for the most part has been anything but invisible. For awhile, back in winter and spring of earlier this year, I not only had my gallbladder out, I had pancreatitis for 5 months, hepatitis of an unknown origin (likely drug induced), ferritin levels off the chart, and just about anything was coming back with an issue on my bloodwork from a blood clotting disorder, to mycoplasma, to nutritional deficiencies, to heavy metal toxicity. I was a wreck. My tics were entirely worse. I had a lot of seizures. If I was well enough to really get around, I walked like I shit my pants. My weight was down to 105 pounds. I LOOKED sick. Everyone knew there was something wrong with me. No doubt about it.

And there will be comments. It is inevitable. Whether to your face or behind your back. That is life. But what do we find OFFENSIVE in conversation? Or just plain ANNOYING?

I saw a few entries from others but would like to incorporate it with my own thoughts and feelings. The other entries were great! And of course I will site them so you can check out the links for yourself. Please add my list of your “peeves” if you would like! 🙂 Sometimes it is good to vent.

Well, you could tell my above things were two things I was upset. They were just plain mean. Intentionally mean. I don’t do mean. I don’t like mean.  I think people that are intentionally mean are really unhappy people themselves. Therefore, they feel the need to say stupid things and feed off of negative energy to make themselves feel better. Off my chest. Phew. Once again, roar.  Other things not to say to someone with a chronic illness: 

To me, the greatest one is, “But you look great!” – I have gotten this a lot since I have put a lot of the weight I had lost back on. I no longer look like I am on the brink of death. Once some issues I was having were addressed, I had more color in my face. I just look better, healthier.

But there are MANY of you that don’t look or have never looked sick at all. Doesn’t mean you aren’t suffering inside, hating every little bit of what you are going through. I think when people say this, they are trying to make you feel better, but in turn, I take it as minimizing how you are feeling. If you look good, you must FEEL good too, right?!

“I get tired too. Especially when the weather is like this.” – Ugh! No.. you don’t understand. Don’t try that empathy bullshit with me. Almost all Lyme patients have a sleep disorder of one form of another. Many of us either don’t or have a hard time getting to the non-REM level of sleep, the level that makes you and your body feel rejuvinated and restored, compared to a healthy person.

The same goes for the “I get achy too, especially with this weather” -No.. you don’t. Empathy with good intentions once again. Gosh, it is always the weather! But you really have no idea unless you are suffering from a debilitating disease. So once again, stop it. Or I will waddle my Lyme riddled ass over to you and punch you in the face.

“How are you feeling, how are you feeling, how are you feeling!!!????” – Ok now, STOP IT. It is annoying. Sometimes we don’t like to talk about how we are doing constantly. A chronic disease is CHRONIC for a reason. Chronic Illness = persistent for a long time, or constantly reoccurring. You’re answer is probably always going to be the same. “Okay”. “Sore and tired”. “Miserable”. When people phrase it right like they often do with myself, “How’s it going?!” My answer is always the same. “It’s going.”

I want to hear about your day is going. What is new with you. The latest gossip. I don’t want to sit and talk about how I feel. I want to forget about it for at least a little while, as it has consumed my life.

“Well if you do this, then you will get better!” -Your remedies on how to make me feel better, like it is an easy fix. CHRONIC. Not an easy fix. And no, you are not my fucking doctor, you can shut your mouth now. Unless I ask you for doctorly advise, keep it to yourself. I have a bunch of antibiotics, supplements, etc. that I take. I don’t need your additional two cents. I trust my amazing, knowledgable naturopath, and one of the world’s leading Lyme doctors. Thanks but no thanks.

“So and so has Lyme (or whatever chronic illness) too, and he/she acts fine. He/she did this and they are all better!” – Kind of goes along with my  doctor pet peeve. Well, good for them. Everyone is different. What worked for John and Jane Doe, the person down the street, your second cousin, your dog, is going to be different than me. I obviously have no control over my brain causing me to do what it does. Or my organs. Or my joints.

“Call me if I can do anything to help!” – I am not going to call you. I don’t really want you doing things for me. Also, that is like one of those annoying empty things to say, because if you really wanted to help, you would just help.

If you really want to help, show up like my best friends and take me out of the house to do something simple. Do something specific. Bring me something that you know I can’t get myself, like cookies for Dave, apples, or a pumpkin for my front steps. Drop off dinner. Dinner that I can eat of course! LOL Grab me a coffee because you know I am feeling terrible and don’t want to drive the two minutes down the road to get one. Just come over and start cleaning. I always tell my friend who cleans to stop, but I know at nearly 6 feet tall ( I am 5’4″), she could stomp me to the ground. In turn, I get my dishes done, my house swept and vacuumed. A little less stress. Some people I just don’t want cleaning my house though. So just don’t.  If you have doubts, you probably aren’t one of those people. Lucky for those people, you don’t get the pleasure of sorting Dave and I’s undies.

“I wish I had the time to relax like you do and have more free time..” Umm what? I am not relaxed. I am stressed out of my mind, scared, hurting inside and out. I do what I can for work, then I sit on the couch. Missing life. It has been over a year since my treatment. And I have spent the majority of it on my couch. Or in bed. I don’t get out much and do anything. My close friends have been more than accommodating and doing things that they know I can participate in, like going to dinner. A bon fire which involves sitting. A movie. Even sometimes though, we have to make it right in town, and we generally play it by year, in case I am not up to even getting dinner or anything, really.

“You are having a good day! You must be getting all better!” – People with chronic illness have good days and bad. It by no means that we are all better. Just because I could go to the pharmacy, the bank and the post office after I go to work, does not mean I am healed. I always pay for it afterward, but I still do it! Sometimes I also don’t look like complete dog doo. If I am feeling okay, I will wash my hair and go the extra few steps. Take more time to take care of myself. So of course I am going to look better.

For me, my good days are not becoming necessarily more frequent, but when I have them, they are MUCH better than they use to be. I use to have some sort of functionality, best from 10-1. Now I function best from 10 to 2, rest, then can do a little more from around 4-6. That is huge for me. I can cook dinner. I can sweep and vacuum, if I am not taking a longer nap. But I am literally jumping for joy over the simple milestones.

That is another thing. When I am proud of a minuscule accomplishment, be proud with me, even though it sounds completely stupid. I made it through the airport without a wheelchair. That is amazing to me. I almost cried once I got home as I realized that I have come such a long way to make that milestone. It may sound stupid but it is a huge deal to me. Do not ruin it by telling me how you are doing something simply amazing, that I could not even remotely do. Or how you got a good deal on a pair of jeans.

“It should be fine if you go and do this with us!” – No.. it probably won’t be. I know what I can and can’t do. It is great to have an offer to go out and do something, but if you know I can’t go out dancing, then don’t ask. It makes me sad. If you really want to hang out, then come see me. We can sit and watch a movie together. To me, it is an empty invite.

It is also annoying if I do go out and do anything, acting like I am all better. I went out for an hour. Whoopedy doo. I spent the next two days getting well because I feel terrible afterward. But sometimes it is worth it with the right people.

An example is going to a restaurant with some friends that I wanted to really see a few towns over. I hardly ever leave town. Dave obviously drove. I had a seizure in the parking lot, again once I got home, and slept for 14 hours straight, and woke up feeling like I was hit by a train and like I had never went to sleep. It was just too much for me that day.

This annoyance also applies to things like overstaying your welcome. Unless you are my best friend that I don’t feel like I have to entertain, don’t. Sometimes I just want to be left alone. No one wants to have company when they feel like they are on the brink of death. They want peace and quiet. If you can see I am having a hard time, go home. I never know how I am going to be doing two days from now, so it is best to check. And please be understanding if I cancel plans last minute. It is not you. It is sometimes just exhausting having company.

Not trying to be a double standard in the means of canceling plans, at least for me I ALWAYS let a person know beforehand how I think I am going to do and if I might not be able to make it, but don’t say you are going to come over if you don’t plan on showing up. That is an asshole move. For someone sick or healthy.

For those of us on the couch and someone offers company and we are well enough for company, then come! Doing absolutely nothing makes you really look forward to the little things, and it is crushing when you look at the clock and no call, no text, no show because you found something more “fun” to do. It has happened to me. I bet it has happened to you.

“It could be worse!” – Yes, it could. It could always be worse. But you just told me what is going on with me isn’t really all that bad, right? After all, “it could be worse!”  For Lymies, I have gotten the comment that drives me insane.. “At least it’s not cancer!”. Yes. Cancer is terrible. But in my defense I will say, cancer is a recognizable disease, and everyone agrees upon it. Treatment is pretty cut and dry for options to be used to heal. For Lyme disease, there is so many disagreements about treatment, many are left without a doctor that is willing to treat them, and so many doctors are not treating the patients in a way that will be effective for the patient. Many do not realize the severity that Lyme and co infections can actually be, and yes, they can be deadly.

I should note that a lot of what I have said IS in fact, with good intentions. But those words coming out of your mouth most of the time make me feel like what I am going through really isn’t all that bad. You have no idea what I am going through. And I don’t know what you are going through. Plain and simple.

“It is all in your head.” – The annoyances and wrong things to say from your doctor. This is the worst thing to hear from your doctor. If you have a controversial illness, like Lyme, or they just can’t figure out what is wrong with you, it is in your head. You are depressed. You have anxiety. You have fibromyalgia ( I am convinced fibromyalgia IS Lyme disease.. another post for the fibro forums one day..).  Some of you have been to dozens of doctors to finally get someone to listen and believe you, that is is indeed NOT in your head.

Other than being misdiagnosed with other ailments, I have been told my the medical community that “I am doing this for attention” . A nurse told my husband this when he told her I have Lyme as he brought me into the hospital from a really bad seizure. Trust me, I could get attention in a lot better ways than having a chest port that in turn I have not taken a shower like the rest of the world for OVER A YEAR. Not my cup of tea. A low cut top with a push up bra would have been the easier choice for some attention. haha.

Getting treated like a drug addict. Once I said my list of medications at the hospital, I was treated like an addict. I use to not as much as take a Tylenol. I don’t like pills. But I need them to control my seizures and tics. I take my dozens upon dozens of pills and IVs every day to keep my immune system going, to keep me from having constant seizures, to try to control my verbal and physical tics, to help my heart beat normally, to sleep, to kill Lyme and co-infections to reach a level of remission one day. I am not a drug addict.

My last one that really bothers the crap out of me that many do… LYMES disease. You have no right to talk about LYME disease if you do not even know how to say it right.

This is my negative nancy post. LOL I just needed a vent session. As I  am writing this, as you can tell,  I am not so positive. No butterflies, rainbows, and unicorns today. Sorry folks. I still love all my readers, though!

I will do a follow up on positive things that we will appreciate and the right things to say will follow sooner or later, if my brain fogged mind reminds me to 🙂 . And what we can do to help ourselves deal with having a chronic illness.

Some great links below, I will also probably incorporate some of this info into my other future postings 😉,;,,      << I can’t remember or find the right words now… yay!

Common Abnormalities Found in People With Lyme Disease

Many of the more severe or chronic cases of Lyme disease seem to have a lot of similar physiological abnormalities. I remember having some of the blood work forms in hand, thinking, why the hell is Dr. S testing for that? What a weirdo.  I thought to myself, I have Lyme, and that’s that! End of story. Fix me please. But now, I can see why he as well as DC have chosen some of the tests that would not necessarily be on the normal blood test and would have to be sent out to LabCorp, Quest, or whatever company your hospital sends special tests to. Some were normal blood tests but I had no idea why they were important to test for.  Well… that is usually not the case. So, not a weirdo… just good doctors who can see the whole picture.

Another term for having several abnormalities, given by one of the world’s most renowned Lyme doctors is called Multiple Chronic Infectious Disease Syndrome, or MCIDS. I prefer to tell people instead of using this fancy term, “I have a laundry list of shit wrong with me”. You say potato, I say potato. Tomatoes, tomatoes. 🙂

So, there are some abnormalities that people should consider when having Lyme disease. These abnormalities are important to look into because they could be hindering your path to getting well:

Bacteria, parasitic, viral, and fungal infections and diseases – These would be tick co-infections, mycoplasma, chlamydia, giardiasis, pinworms, EBV, HHV-6, HHV-8, West Nile, viral encephalopathies among others. For myself personally, I only tested positive for anaplasmosis, but am going on a babesia treatment soon and have and will be on a bartonella treatment yet again. Once again, good doctor = clinical diagnosis.  Candida, or yeast is a VERY common issue. Antibiotics cause fungal issues. There are supplements to help aid in getting rid of yeast as well as over the counter products. I know I have fungal issues, due to my tinea versicolor yeast rash. Head and shoulders shampoo as a body wash and foot fungus cream works pissah. I tested positive for mycoplasma and HHV-6 as well. What a great start to my “laundry list of shit wrong with me.”

Immune dysfunction –  As most of you already know, Lyme seems to make everything not work the way it should. Without a properly working immune system, it makes it awful hard to kill those little buggers as it slows your bodies ability to fight infection.  It is also important do to a CBC panel to check how your blood cells are doing along the way. A lot of dysfunctions or disorders could mean your body is making too much or too little of something. Some immune dysfunctions to look out for include several other autoimmune disorders such as lupus, hemolytic anemia,  and thyroid issues. Fortunately, I have had several thyroid tests and a neck ultrasound and even though there was something that was slightly off, I can’t remember for the life of me and I believe I had some anemia issues, but everything in this department seemed ok! Yay!

Inflammation –  Inflammation. No shit, right? Think of all the joint pains and everything that hurts in your body.  A WBC test is a good way and a simple blood test that can test your levels to see how you are fighting infection or if there is inflammation or infection in your body. When I was taking rocephin and after my surgery and complications from it, my levels were high, but I guess that is to be expected. There are several natural approaches to help fight inflammation. Great diet choices are an easy way to fight inflammation. Here is an illustration that can help you make some good choices 😉


Toxicity – Toxicity is an important issue among many Lymies. People who aren’t sick are able to get rid of the toxins more easily and people with Lyme tend to struggle at eliminating these toxins from their body.

I have heard a LOT of people commonly have mold toxicity with this disease. Mold toxicity can cause several types of infections that can hurt your eyes, skin, lungs, or other organs. If you suspect mold toxicity, you should take a test to see if their body has antibodies for mold exposure or take what is called a RAST test to see if you are allergic to any mold substances. Then, go from there… figure out if there is something in your home that would be causing the issues.

There has also been a lot of people with Lyme that have lead, aluminum, or mercury poisoning. Mercury, is actually the number one leading heavy metal responsible for hindering healing from Lyme. It is an immunosuppressant. I was very surprised at my results when I took a heavy metals test. I told Dr. S. about my hobby of target shooting and Dr. S, who I don’t peg as a gun toting guy whatsoever, said I bet you have lead poisoning.

I was kind of p’oed to be honest with you. It’s not like I lick the bullets or anything. What ev’ ,Dr. S!  I was offended, as I thought he kind of thought of me as a crazy, hillbilly bumpkin and was judging me. Well, he was right when I got the tests back….. damnit. I kind of wanted to rub it in his face that he was wrong. But that very rarely ever happens.

Same with mercury. What? It’s not like I ate a thermometer when I was a kid. I have read in a book, “The Top 10 Lyme Disease Treatments”  that when Lyme dies off, it releases mercury. I personally think that part of my issues were my past apartment, that I lived at for two years. I actually had to sign a waiver about the paint and windows having things that are no longer legal  because they had dangerous chemicals. I didn’t eat the paint chips, but maybe that or the water made the difference. Like I said I lived there for two years. Who knows.. add it to my “list of shit wrong with me.”

Another suggestion to see if there are any other toxicities and prevent them in your home is to get your water tested! A basic water test only shows certain things, like iron, but there could be more toxic things in your water. My friend’s parents opted for the more expensive water test when they bought their home and they had extremely high levels of arsenic. Yikes!

These toxicities are just one more reason why detox is so important. There is also a process, called the chelation process, that you can take to aid in removing the bad toxins. You take some pills, and the heavy metals will attach and you will essentially pee out the bad stuff. It is important to monitor this process, however, as it can also remove GOOD chemicals in your body. Something to discuss with your LLMD.

Food, Environmental, or other Allergies – Most of us Lymies know that gluten and a ton of sugar is a no no, but there are many other types of foods that can affect our system. Some foods, you might not even know you have an allergy to. A lot of doctors offer what is called an Alcat test, which will help determine some of these allergies, that you might have not even known you had! Check out for more information. This test can also determine chemical sensitivities as well.

I have not personally been tested, but have figured out on my own to cut gluten, even before I discovered I had Lyme, as I have more energy without it, have always had issues with sugar and dyes (red in particular), processed foods such as deli meat, and dairy. For awhile, potatoes and corn bothered me when I first started treatment as well… my lymph would swell so bad I had a hard time breathing. Awhile back, I was sneaking some gluten foods, like a breakfast sandwich from dunks and cosmic brownies, and it was amazing how friggin horrible my stomach felt after I ate. Not like I had to poo or anything LOL but really bad cramping. My tummy says NO to gluten!

Environmental and regular allergies will also hinder your ability to get well. Dust mites, pollen, mildew, dust among others. All can be tested for as well. A lot of Lymies keep a filtration system of sorts in their homes. I don’t have the money right now, but I would invest in one to help keep the pet dander and dust at bay.

Nutritional and enzyme deficiences – I could write a ton of these down. Oh my lanta, the list could literally go on forever. Lyme affects EVERYTHING in your body.  Common nutritional deficiencies include: zinc, vitamin b, vitamin d, magnesium, manganese, iron, and many more. One VERY common deficiency among Lymies is magnesium, I am not really sure why, but this one is very common. I keep having low magnesium tests, but have finally gotten a normal number. I take magnesium glycinate, but there are other types of magnesium supplements you can take, such as malate, citreate, or taurate. Another thing to talk to your doctor about. Some types of magnesium will make you POOP! Levels me out though, my heart med makes me not go and the magnesium makes me go, so now, my stomach hasn’t been better for MONTHS! 😉 yay for that TMI info 🙂 I was also short on vitamin D, potassium, and l-carnatine. L-carnitine is common if you do not eat red meat anymore. All can be easily treated with supplements, most right over the counter.

Some enzymes that are commonly deficient in Lyme are CoQ10, amylase and lipase, used to check liver and pancreas issues, among others. It is important to figure out if you have high or low enzymes as systematically too high or too levels of some of these can once again cause an array of symptoms. There are many types of enzymes that work together in your body and have been proven beneficial to fight inflammation, improve digestion, pain issues and improve energy levels. A genetic test I would like to mention, is methylenetetrahydrofolate reductas, or MTHFR, or “the mother fucker gene” as I like to call it. This gene in your body provides interactions for this enzyme to process amino acids, glutathione, and vitamins. When this process doesn’t work, it can also make you sick. There are a lot of people with Lyme that seem to have this issue as well. MTHFR causes many issues from birth defects, to tiredness, to mental illness, to cardiovascular disease… lots of issues.

Almost all of these deficiences can be done easily on a regular blood test. A few need to be sent out but once again, important to monitor. Sometimes deficiencies and Lyme symptoms are so similar it really makes a difference to keep track of everything.

Psychiatric Abnormalities – Well, that explains a lot! They don’t call me “Crazy Kimmie” for nothin’! Lyme is closest related to syphilis, which is known for it’s neurological manifestations, and  Lyme is closest related, so we shouldn’t have really expected different. Lyme can cause complete personality changes and other cognitive issues. Some of these include: learning disabilities, dementia, mood swings, anxiety, depression, obsessive behavior, sudden rage, and hallucinations. Personally, I feel like my main issue is rage. Talk to your doctor if you have felt any changes in your behavior.

Endocrine Abnormalities – There can be a lot of abnormalities as the endocrine system is a large system in the body. These are your glands that work together to make your body function properly. This is your thyroid, pancreas, pineal, thymus, ovaries, testes, adrenals, and parathyroid. All of these secrete hormones into your body, and all serve a specific purpose. Having too much or too little of these hormones, your body isn’t working the way it should.

It is very common for women to have ovarian cysts with Lyme. I was recommended to take a birth control to stop periods, or lessen them. Since I have Factor 5 Leiden, a blood clotting disorder, I was told to never take anything with estrogen, so regular birth control wasn’t an option for me. I went with depo provera, a shot that is progesterone based that I have to get done every 3 months. Super easy! No keeping track of more pills, I got enough of them already.  I haven’t had any new ultrasounds to see if it has helped any but no more periods! Another reason to consider birth control is women tend to herx worse when they are ovulating. No ovulation = less herxing. Makes sense, right?

I would also highly recommend a Cortisol test. Too much or too little can cause too much stress and not allow you to sleep, or make you completely exhausted and sluggish.

Here is a nifty chart that shows symptoms of endocrine issues. I know a lot of symptoms can also be Lyme, but it could be something in your body not working quite right.


Autonomic Nervous System Dysfunction –  This system controls your involuntary movements, such as your heart beating, blood pressure, breathing and swallowing, or erectile disfunction in men.  Some people with Lyme or co-infections end up with heart issues. I don’t know for sure, but I attribute my supra ventricular tarchycardia to Lyme. Parkinson’s can be common in people with Lyme disease. I actually know of someone from my town that had a very bad, very serious time dealing with Lyme disease and now sees a specialist out of state for Parkinson’s. Once again, Lyme affects everything!  If it makes you feel any better, guys with ahem, “issues”, us ladies tend to have a terrible loss of sex drive. At least the birds and the bee’s isn’t the first thing on your mind when you are doing your best to hold it together and just be able to get through the day.

Mitochondrial Dysfunction – This type of disfunction affects your organs, motor function, and the nervous system. Mitochondria is found in every cell in the body, except red blood cells and is responsible for 90% of energy needed by the body to support growth and sustain life.  Your entire body can be affected if not working properly. Common symptoms of mitochondrial dysfunction include seizures, loss of motor control, myoclonus, visual and hearing problems, liver and cardiovascular disease, and for kids, developmental delays.  I got the fun part, seizures and tics (which DC believes is seizures of my motor/sensory system). I was already legally blind before all of this and have been for years, but my family all is eyeglass wearers. If you notice something different, check with your doctor. Keep up with eye exams. Get a hearing test. Have a neurologist and cardiologist check up.

Stress – Stress doesn’t help anything. Being sick doesn’t help stress. At all. But Lyme seems to like stress an awful lot! Try to take a minute to relax and try some relaxation techniques such as meditation or a basic yoga (nothing too crazy, you don’t want to hurt yourself!). It might help you. I personally find writing to be a great outlet to get out some of the stress that I have built up inside.

Sleep Problems – I think this one is a given. Your body needs rest to get better. Get some rest. Nuff said. Of course, you can probably get a sleep aid of sorts from your Doctor to help you sleep but there are many natural supplements such as melatonin that can help you get to sleep. Other suggestions are valerian, chamomile, and kava.

Gastrointestinal Issues – Probiotics, probiotics, probiotics! A lot of us have IBS or some other tummy issue. I know I sure do!  When I was first seeing doctors I had my super fun colonoscopy. It’s not the actual colonoscopy that sucks, as you are asleep and can’t feel anything, it’s the day before when you prepare. At least it was a quick 5 pound weight loss! 😉 Dr. S. also gave me a natural powder, called glutamine, that helps a lot with those stomach issues. It helps protect the lining. This is a tough one because most of us tend to have stomach issues to begin with, then oral antibiotics tear up your stomach even more. I highly recommend using these products.  It will help. Not all supplements are created equal, either. A GOOD probiotic belongs in the fridge, not something you can pick up in the aisle of Rite Aid.

So, I think it is safe to say there are a lot of other things that paint a whole picture. For those of you who follow my posts and don’t have Lyme, consider some of these tests to ask your doctor if you aren’t feeling your best, especially the Alcat. Something as simple as a blood test or mouth swab might make you find out you have an allergy you never knew you had and you can go the next step. You might not feel as sluggish or tired! Nutritional deficiencies are also something to look into. Many people have several types based on diet or the way you process chemicals. A simple vitamin regimen might help you and fix the problem. Who knows?! Something to discuss with your practitioner.   🙂

A lot of these dysfunctions can also mimic a lot of the symptoms that Lyme can cause as well. A good LLMD should be testing you for these issues. But if they haven’t, you can always ask! It isn’t like it costs the Doctor anything to order the tests, you or your insurance is paying, so tell your Dr. to check off the damn boxes. You might even be able to teach him or her something new by telling them facts. It is always good to be your own advocate!  Either way, you should  address these issues in order for your treatment to be as effective as it can be. A big part of treatment and keeping the little bastards at bay is keeping your body happy 🙂 🙂 🙂


(Sources : Beyond Lyme Disease – Connie Strasheim (great book, read it!) ,,,,,,,,, mayoclinic,,,,,