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.

Thanks,

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!

December Part 1 – It’s Complicated

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Hey everyone! I have been waiting for an array of tests to come back before I wrote again. Annnnd… I am still waiting on even more blood work to come back. I figured I would check in in the meantime!

It has been a pretty frustrating month to say the least. I feel like I am falling apart and am growing really impatient trying to find out all the answers.

I finally did the SIBO test and it came out negative. I ended up doing a poo test which I hate and was holding off on.

There was a bacteria, as well as candida and another fungus, so that would explain the bloatedness, inability to go to the bathroom (even though I have doubled the dose of magnesium citrate).

The neat thing about the test is that it showed what treatments were most beneficial to me, and ones that I am resistant to.

I am actually resistant to Diflucan, which I have been taking forever. The bad news is the things that are supposed to work for me I have been taking for months and nada. I guess it will take time and I will continue on with a clean diet and hope that it all begins to resolve.

The sleep has been absolutely ridiculous. I managed to be okay to make it to a friend’s baby shower but I absolutely need to have a few hours nap to go anywhere or it just isn’t happening. I have had to nap to do anything, I have napped at work, and even planning on going to my sister in law’s for Thanksgiving, I napped before we left, the half hour drive, and when I was there I had a quick snooze before dinner, and as soon as I got home.

I have been missing out on things like an invite to watch a football game, going out to dinner, and visiting friends. I am a pretty social person, even though I am a bit socially awkward, and to not be able to get out much is a big bummer. It really truly sucks.

During my first appointment since I last wrote with Dr. Steve (I must be a VIP patient by now LOL) , he did a little check out and low and behold I had an ear infection.

There was actually some blood coming out of my right ear. It doesn’t seem to bother me and was kind of new news to me.

He is a blood work kind of guy, which I love, so I had a full list of tests to get done. I didn’t have to get as many tubes drawn as anticipated, a lot of the tests could go in the same vial. I also got a Minion band-aid. Win!

With those blood tests, it showed my hormones are way off. The biggest issue is Progesterone being extremely low. I was surprised at this, even though I knew something was off, as I have progesterone injections and use progesterone cream. Hmm.

There was a test that was an AHA! moment. It is called immune complexes, and another that shows extremely better white blood cell information than your basic panel.

It showed that I had off the charts inflammation, and my body is indeed attacking itself.  The problem is, we aren’t positive as to why and what.

As a side note that I can’t figure out where to copy and paste it (brain fart), no one wants to have something bad on their tests. I will admit though I was happy as a pig in shit that something showed up. Finally. I was beginning to feel like I am friggin crazy, as I am sick. Very sick and nothing was showing up. These tests

The biggest possibility we are looking into is vasculitis of the brain. It is very rare, and my spellcheck even doesn’t recognize the disease hahaha. Joy. We are looking into an angiogram of the brain to confirm this guess, and trying to get as much information gathered as possible for insurance to cover IVIG treatment which could be really beneficial to me.

Another option we discussed was going on prednisone. Yes, I know it is a freak out no-no topic among the Lyme community, but you really need to outweigh the good and bad, and it can actually be life saving to those with conditions such as Addison’s, etc.

I wanted to look into this, as I know there are so many possible side effects, and I am learning that this is likely not a good option for me as I have Factor V Leiden. It can cause some extremely severe side effects even in a very short period of time. Surgery required bad things. Yup.

So I am continuing to get information together before my next appointment, and am wondering if we could make a case for the insurance that prednisone could possibly cause massive side effects.

Unfortunately, there is no way I can afford trying out the IVIG if it isn’t covered. I know also that it can kind of be a crap shoot. For some people it seems to be great, others it seems to do way more harm than good. If it is covered I think it would be worth trying.

We are going to run another blood test coming up that tests for more things that would maybe give a few clues to neurological issues that is more specialized than something Labcorp or similar companies offer.

A few new issues have come up. I usually haven’t dealt with a massive amount of pain for the most part with this disease as I am nearly all neurological, but my calves and back of my legs have been extremely swollen and excruciatingly painful.

They are not hot to the touch, but when they get like that, veins even begin to bulge out. Sexy I know. I have forced myself to use my bike a bit as maybe it is a circulation issue.

Underneath my jaw (maybe lymph node) has also become swollen. It reminds me of a frog when they puff out. You know what I am talking about, right? It is really painful and I am not sure what to do about it.

My throat isn’t sore, and although my lymph nodes on the side of my neck are swollen as they always are, they don’t appear to be quite as bad. Or maybe they don’t look that bad with this massive thing going on below my jaw. Haha.

Lately my head seems to have massive pressure… it doesn’t hurt at all but it literally feels like I can feel my brains being squished into my skull. Like my head is full. When this happens, I almost feel a giant wave come over me. I feel completely totally out of it, am oblivious to my surroundings and unaware. I can’t even talk. Nada. It passes quickly, as I said it is like a wave. Very bizarre. Maybe yet another type of seizure? I don’t know.

Even more nerve wracking, I am not sure what is going on with my eyes. All of a sudden, I can’t see. It lasts more than a few blinks, maybe 15 seconds or so? Just a guess. You don’t really keep track of time when you instantly lose your sight. It isn’t total blackness. It is beyond blurry, as I can’t see a friggin thing, like I am looking though the thickest piece of the type of glass that a shower has that you can’t see through, and a shade of grey.

I went to the eye doctors, and tis the season, I do have a tendency to have dry eyes in the winter and a little inflammation and thought maybe this was the case but there is nothing wrong with my eyes. My eye doctor doesn’t think I am crazy about Lyme and takes me pretty seriously, and really took the time with me to see if he could find anything that could be causing this issue. His only explanation is that it had to be neurological. Gah.

I did finally have my appointment with the sleep neurologist. The day before my appointment, there was a questionnaire for Dave to fill out, since he does see my sleep patterns and knows my sleep habits and lifestyle. He was out for the evening and of course I had to look at his answers. In a question about snoring and to describe this sleep behavior in more detail Dave’s response was, “More than 75% of the time loud snoring and other loud disgusting noises with her mouth.” Thanks hun.

Although she did call it, “Lymes” (pet peeve LOL), there was a little positivity, as I am actually having some testing done. I will be doing an overnight sleep study as well as a daytime one. I’ll call it a mini vacation?

Included in that will be an EEG, maybe there will be some sort of revelations in that as well. I just want some answers. Something isn’t right. And she agreed with me that something is going on. We just don’t know what.

She really believes that it very well could be narcolepsy as I fit right into the category or sleep apnea. She had mentioned a type of sleep apnea that is a little different, one that your brain basically tells you to stop breathing. Not like an airway sort of issue.

I had some pretty great accomplishments this past month. It sounds pretty lame for those who aren’t dealing with this all, but I am happy. It has been over two years since I walked in a Walmart. I walked all the way to the electronic section with Dave, and also the pet section to get our fur kiddos their food.

I didn’t get into a complete state of panic as I do in situations I know are going to be a struggle, my feet had no feeling, and I had to hold onto the cart to have some extra support.  The lights made me dizzy and I went into a complete fog. I made it though!

I had a day I went grocery shopping by myself, after 3 hours of work I should add, then continued on pushing myself to do some cleaning around the house. I really wanted to just lay down, but it was a huge boost mentally to do this.

In a few weeks I will be trying something called electro-magnetic therapy. It is supposed to help boost circulation and get rid of waste.  I haven’t done a lot of research on it, which is pretty surprising as you know I am the Google Queen, but for more information, it is called PEMF Therapy.

I am going to leave this on an uplifting note. It seems that this time of year is especially hard for the Lyme community, and we have lost too many people in the last several weeks.  It is heartbreaking.

I am exhausted and am mad and sad at what has been going on with me. I have kind of felt like I have been breaking down piece by piece in frustration. Why does everything have to not be cut and dry?

I do have days that I feel like an absolute rock star for getting some things done like like I have shared and not making a zillion rainchecks to Dave for him having to do everything.

But… that is doing the basics that I had once been able to do months ago. Even years ago. I am grateful to be doing anything at all as it is still an improvement from when I first started over 4 years ago. I will admit though, backtracking isn’t fun at all.

For every bad day I am really trying to go to bed with the mentality that tomorrow will be a brand new day. I will keep going, keep fighting. I really don’t have a choice. What is it that Dory says? “Keep on swimming?” Well, I guess I will do just that. Wishing you all a great day, and to continue being strong. We will get through this together.
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Can’t forget my Olive girl! Introducing Miss Olive Loo Who! Haha. She looks pretty pissed. Someone was not in the Christmas spirit.

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!

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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!

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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.
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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!

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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.

 

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 ..  http://www.recallcenter.com/endoscope-superbug-infection/

– 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!