August 2018 – And So I Wait…

Well, sometimes no news is good news. Most people making great strides in recovering from Lyme, improving daily, and finally reaching that glorious word, “remission” fall off the face of the Earth when it comes to Lyme groups, updates, basically anything with the word Lyme in it. They are no longer sitting on Facebook looking for advice, sharing advice, giving moral support and virtual hugs.

They are out living their lives. Catching up on sometimes years and years of time that has slipped away. I can’t say I blame them though. Of course, there is the continued advocates, but a lot of people just want to leave this crappy chunk of their lives in the past.

Then, there are those with the whole no news bit, which means the news isn’t looking that great. Unfortunately, that’s about where I’m at right now.

As you know, I had a pretty big break in my treatment due to my arm. I had gone without any treatment from the beginning of April until mid June. That has to be one of my longest breaks.

I have had a couple breaks that were long throughout my treatment, but all of those consisted of other elements of treatment. Restoring the gut, fixing a big fungal infection that is linked to eating unwashed grapes (go figure, only me LOL), as well as giving my poor ol’ angry organs a rest.

My only reasons for the break were first and foremost solely working on my arm to avoid any surgery, as well as the fear of explaining to doctors WHY I am taking the humongous CVS receipt sized medication list. Then having a pissing match with said doctor.

Or have that agree to disagree argument that I am here for x,y and z, yet their opinion of you went right in the shitter, so you know exactly how the rest of your appointment will go. Yeah. No thanks.

I finally started my new treatment protocol after my appointment with Dr S. My poisons of the month were mino, clarithromycin, and plaquenel.

In my mind, compared to what I have done for protocols in the past, this was gravy. Only 3 things? Easy peasy. Right? Wrong!!! I certainly misjudged that one!

I got a laugh during my appointment about the Plaquenel. I have been on Plaquenel in the past, but if you are not familiar with the drug, It is really important to get your eyes checked when on this medication.

He told me that thin, small women are at the highest risk of developing retina problems on this drug. I was waiting for the, “So, at least you have nothing to worry about”. LOL I guess I am still considered petite, even though lately may mind has reverted to my past, worrying about my weight.

I’ll give a disclaimer, I am not actually repeating my past, but once you have lived with years of having an eating disorder, I would assume those thoughts will always be on your mind here and there. It is probably the same as someone who has overcome an addiction, whether it is alcohol or drugs. The difference is if you act upon it.

The problem is, in my mind I am much bigger than I actually am (even though I know I’m by no means overweight), and I obsessively check the scale. I have found myself looking at boxes and looking up calories for everything. Even though this is the complete opposite, I sometimes eat and eat late at night, I just pig out. Then I feel absolutely disgusted with myself. All the while, I am looking at those calories while I am doing it, yet I am unable to stop.

I am not really sure what is considered normal, if other people feel that way? That sense of guilt? I will literally think about it for the entire next day with “what I did the night before”. Normal? I don’t really know. Maybe it is for other people when they have that late night slice of pizza to feel awful about that choice the following day. What’s normal anyway?

I look at the scale and somehow find myself feeling guilt, I don’t really know how to explain it. Looking back at my records of how I was 105 pounds a few years ago. I was so sick. I know I looked gross.

When Dave had to bathe me because I was unable, he even made the comment, “You look like you are at a concentration camp. Your ribs, hips and collar bone are sticking out.”

It’s true, it didn’t suit me at all being a size 1-3 in juniors. But my mind is looking at numbers. I just plain can’t help it.

In my personal opinion, this is probably Bartonella related. Everytime Bartonella is a target ,my mind likes playing games with me. Anxiety, paranoia, hallucinations, hearing voices, memories coming back to me, a history of suicidal thoughts.

I often find myself now obsessively cleaning, worrying about every little thing and overanalyzing conversations to the point of being paranoid, not even remembering buying a slew of scratch tickets, or ordering random crap online. It feels like Christmas coming home to tons of packages on my porch that I have no knowledge of ordering.

At least I’ve gotten better with the late night shopping sprees lately.. probably because I at least now remember that I have no money haha. My mood and personality can change immensely, I experienced severe rage when I first poked the Bart bear.

I think it’s still angry though, well, that is a given, I had a temper tantrum the other day at the store, total word vomit. I was blocked in by two vehicles and was yelling all sorts of things that aren’t appropriate and also not normal for my character.

I also find myself getting very short with people, and just come out with jerky replies that I put no thought into and just blurt things out. Usually Dave gets the blunt of these remarks. At least he is a really forgiving guy and certainly puts up with a lot and understands it isn’t always necessarily “me” spewing out jerkish things.

BUT, rant of the day, as I am on the topic of questioning and blaming a lot on Bartonella at the moment, I will definitely say and shout from the rooftops as it is so common in groups, and talking to anyone, they tend to immediately blame every single thing with their body on Lyme and co’s, or, upon observation, one of the new hot topics is mast cell. You just can’t do that.

When you are undergoing treatment, a lot of lifestyle changes need to be made. Things you are intolerant to that maybe never bothered you before can flare up big time. I always recommend the Alcat test. It shows intolerances, which are different from allergies, and shows these intolerances ranging from mild to severe, and a rotation diet is recommended to help.

I know when I first started treatment, I absolutely couldn’t have any sugar, gluten, or corn products. I could feel the inflammation, and it actually made it hard for me to breathe, and I would be in a ton of pain and bogged down.

It stopped as treatment moved along and I started making improvements.  Yea, probably a histamine issue, But, that isn’t mast cell. I am by no means claiming to be an expert on the topic, but true mast cell is pretty horrific from my understanding. These are likely just plain things that cause more of a reaction than before when you were healthy.
Every rash, every mark, things that are clearly normal become questioned or worrisome. When taking a hot shower, you will be a little red temporarily. If you have your face or body smoothed on a textured throw pillow or couch you will have some marks, and let’s be real here, we get stretch marks, we have veins. We are human. These are normal things in life.

Rant over. Point being, it makes one obsessive for nothing, adds extra stress no one needs, and also for the sake of your health, something might have absolutely nothing to do with Lyme and co’s and be a totally different issue, and it isn’t safe to just assume. And it absolutely isn’t doing yourself any favors. Simmer down y’all.

In my case, maybe I am wrong about Bartonella, but the strong correlation is there based on years of history and experience.

I really don’t know what is going on.. within a span of only 2 months my vitamin D levels have dropped from in the mid 30’s to 16. That seems like a really drastic jump in such a short period of time.

Dr S told me that sometimes people that no longer have gallbladders can have an absorption issue, so that may be the culprit, but in the meantime I have swapped over to liquid vitamin D, and have upped my dosage to 20,000 IU a day. That is a lot, but I am hoping when I get retested the levels will improve.

There is a pretty big pattern of not knowing what the heck is going on. Once again, my inflammation levels are through the roof.

When Dr S had suggested what tests I should get from my knee fluid to see what pops up, and looking upon my dictation notes given to me by the Ortho doctor, he got a laugh, as basically he said the exact same thing as Dr S. I am now dubbed as a “diagnostic mystery”. Gotta laugh, but this is beyond frustrating.

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I am aware that I am sweaty and gross in this photo and it was kind of hard to figure out the best angle taking the picture myself, but you can kind of get an idea of what my neck and chin have looked like for the past nearly year and a half.

I am really concerned about my lymph nodes, as I am guessing having them effected this badly for so long really can’t be good.

I already had a CT and know they are a mess, but maybe I would benefit from an aspiration of my lymph nodes and get a culture. Needles everywhere draining all my crappy inflammation. Haha. I really don’t care at this point. If I get some answers I am all for it, and maybe that would make them at least temporarily feel better.

On a positive note, I am happy to report that my spleen is no longer enlarged, as Dr S just checked it out during this visit.

Lately, I have been shaky, and I have weird periodic moments that feel like there is nothing around me, maybe a tunnel vision-esque sort of thing? I feel weighted and I cant even move. I am a statue. I push myself really hard and that is when these things tend to be worse.

I think one of the very biggest disappointments lately is I once again had a seizure. I have pretty much been seizure free for a very long time now. What on earth is happening?

I don’t remember the actual seizure, as I normally don’t, but I experienced the all too familiar aura that I just know what is to come. Sometimes I am lucky and have enough time to make it to the couch, the floor, anything, and am able to pop an Ativan. It will either calm my brain down, or it at least won’t be as bad. I didn’t have enough time that day.

I was getting dinner ready when it happened, of course cutting up raw chicken. After the seizure, I came to on my kitchen floor in a bath of chicken juice. Yuck.

Silver linings, the knife was still on the counter, so there was no stab wounds, and I didn’t appear to have hit my head at all. The negative? Someway, somehow, I broke my pointer finger.

The following day I had a PT appointment, and considering we are working on my arm sitting at a table across from one another, I figured I would bring it up. I told the therapist what happened, and showed him my boo boo. He felt it, and clearly felt the lump of bone. “I don’t have an x-ray here, so I can’t officially say that it is broken, but I’d definitely say that is broken”.

Yup. I don’t often break fingers, but I have broken my toes so many times I have lost track. It really isn’t something I worry about too much and am not going to run off to the ER for. He suggested taping my fingers together, but I kind of blew it off, as I have to type for working, so that would just be a pain in the ass. After about a week or two it went back to normal.

The seizure really made me mad. I was so angry, disappointed, and just plain bummed out. Am I going backward so far that this is something that might become a “normal” thing? I certainly hope not. I haven’t had one since, so I am hoping this was an isolated event.

In the meantime, I have been having a really weird issue. I will try to explain it the best I can.

Lately I have been experiencing a really weird breathing issue. I almost get the sensation that I am choking on my tongue. I begin to gasp, choke, I literally cannot breathe. It happens periodically throughout the day with no rhyme or reason, and I have woken up at night disoriented thinking that I am choking on food. This obviously isn’t the case as I was sleeping, but this does freak me out a bit when it happens.

I am having a hard time breathing in general. I have had very bad air hunger, and my chest hurts and has a heavy pressure. It seems like I can’t get a whole breath in, and I almost reach the point of hyperventilating.

The other morning I was laying on the couch, trying to get enough oomph to get ready for the day, and my cat was sitting on my chest. Not only did I have to move her slightly down as it hurt, I was hearing wheezing and had no idea where it was coming from. I held my breath for a few seconds thinking it was Lucy, only to hear nothing. I started to breathe again, and low and behold, I was the one wheezing away. Greaaatttttt….
It has also been pretty darn hot here lately. I really don’t tolerate higher temperatures, which is common for people with POTS, but I try to go outside a little bit everyday just sitting with the dogs, or cooking dinner on the grill.

I feel like the profuse sweating as short a time I am outside helps a little bit to detox out. The downside, these short periods of outdoor time generally make me feel like I am going to black out and nauseated. I just plain don’t handle heat well. I think I am ready for fall.

I had another follow up with Dr S and the game plan as of right now is to become more stable before I do anything at this point. Since I have gone considerably downhill, he doesn’t want me to go right back on treatment and get to a better baseline.

He believes that it is a strong possibility that the treatment caused intracranial pressure and was just too much for me at the time.

We are continuing the debate on autoimmune vs. active infection. The problem is, if you give someone with an infection steroids, it might help with the swelling issues, but it will make the infection much worse.

You could do antibiotics while being on steroids, but, you aren’t going to know if it was the steroids are what is helping, or the antibiotics, and you really don’t have any real answers.

Yes, I am aware I am probably receiving some gasps while reading this. I know I know, steroids are bad if you have Lyme. BUT, sometimes they are absolutely needed. Think of those with Addison’s disease, or anything else that someone may need them. Last year I did a week of steroids, because I like my airway open and breathing is always nice.

There is a time and place. Right now though, we are not sure if this is the right time and place and it really isn’t something that we want to just take a complete shot in the dark about.

So, I am trying to balance out, and am now religiously taking supplements, some old and some new ones, to try to get in better shape. I feel like I am getting a little better from my crash, but I do agree with what Dr S was saying.

He really doesn’t want to completely mess me up again. And I am totally okay with that. I am sure when I go back soon I will have an array of new blood work to get done and go from there.

I also had a follow up appointment with my sleep neurologist. I was on a roll on the way to my appointment, rocking away, and started with my tics and stuttering. Ugh! Just stop already!!! My body did calm down quite a bit once I got there (Hooray!), I think my nerves just made everything go haywire as I hadn’t seen her in awhile.

I had the dreaded conversation about possibly losing my license. The worry is having cataplexy while driving. Honestly though, I am very surprised throughout these several years it has never been discussed being diagnosed with a seizure disorder, and at one point knowing it wasn’t controlled.

I think most likely it was just assumed that I wasn’t driving at all. I still don’t drive very far and I know my limits, and know there are days or times I just plain shouldn’t get behind the wheel. And I don’t. But, it hasn’t been a hot topic and I think I just stayed under the radar. Now, I am on the radar, and I will just have to see what happens my next appointment.

It sucks immensely, but I do understand where she is coming from. In good conscience knowing I could possibly be a danger I don’t know if she would be legally responsible? Maybe? I am not sure how that works. She would sure feel morally responsible though and I respect that.

The thing that stinks, like Lyme, there really isn’t a ton of research being done, and there is no cure. And with Narcolepsy you don’t even get the possibility of reaching remission. It isn’t something that comes and goes, it is there, always, it is just trying to figure out what is best for you to give you some quality of life and the ability to function.

The known medications for cataplexy are antidepressants. I reallllllyyyyy don’t want to go down that road. I know it is a much smaller dose than normal, but I still don’t know how comfortable I feel with taking one.

She did agree however, that I need to get back on Lyme treatment and get back on track and discussing how I have been doing she didn’t want to throw a new medication in the mix as it would be hard to differentiate what is what, if there was an issue with the antidepressant.

I don’t think she was overwhelmingly concerned in this very moment as A) She could have yanked my license on the spot and B) I don’t have to see her for several months. As for now, we are going to continue to play around with the timing of my Narcolepsy medication to see if there is a better time frame for me to make it most effective and she hopes next time I see her I am doing better.

Lastly, I had a visit with my Ortho doctor again and unfortunately there was no luck with getting the aspiration done that day. Damn. My knee was clearly swollen, yet I just didn’t have enough fluid for all the tests.

He told me to do the exact opposite of what he tells his other patients to do. “Please go for a jog (obviously that won’t be happening), a brisk walk, use an elliptical, do as much kneeling as possible, maybe some jumping jacks. The goal is to do as much high impact things to piss it off and make it swell even more”.

Who wishes something is worse? Haha. We do apparently. He regretted not doing the aspiration the first time I came in. It just stinks because I need to get this done off of antibiotics but time is ticking away.

I know I will need to soon be back on a treatment plan, as I feel and know I am slowly regressing again. But here I also am, stuck at the moment trying to become more stable to decide the next step. And so I wait.

I promise to give another update as soon as possible, I have much more to share! I try to keep it short and sweet, and unfortunately if I slack my blog turns into a novel, for that I apologize!

Another LLND appointment, more blood work (I am still impatiently waiting for my results), and a new focus in the meantime of trying to figure out the crazy puzzle that is me.

Happy Wednesday!

Of course I couldn’t forget to share a photo of Miss Olivia! Our Princess Puppyfarts, proudly wearing her princess tiara!
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2 thoughts on “August 2018 – And So I Wait…

  1. Hope you get some answers soon. I wonder if Babesia is rearing it’s ugly head? The breathing issues make me think of Babs. I am no doctor, but just wonder.

    Good luck, Kim Hugs, Janie

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