This past month has been pretty hectic, so once again I have been slacking with an update. I have been so back and forth with my treatment and recently started a new protocol. I’ll get to that later. I’ll try my darnedest to not be scatterbrained and all over the place, no promises though.
Let’s start with my ENT appointment. As you may recall from my last entry (if you don’t, you need to follow me, I am quite awesome), Dr S, my Lyme literate naturopath, wrote a great letter to the ENT doctor advocating for me, pushing toward surgery.
In the letter, he mentions several different tests to do, and a big hunch that I have PANS/PANDAS. He also recommends IVIG treatments.
Well, Dr S is a naturopath, and as some of you may have experienced that has a team of doctors, you will find according to the ego of other specialists and MD’s, a naturopath is not a real doctor. Naturopathic doctors just give you berries and twigs and are a bunch of dirty hippies. Haha oy vey.
The ENT doctor focused on Lyme, and the unlikeliness it has anything to do with having chronic tonsillitis. Hmm.. I am nearly positive that was not mentioned in the letter at all. This was the immediate start to the appointment.
Swabs were taken of my blistery tongue and of my tonsils. Unfortunately, he did the bare minimum testing, which was pretty annoying. Himself and Dr S had mentioned other tests to do, such as a fungal smear, and that was never done. I would have loved to have a viral smear at least. But nooooopeeeee.
We discussed PANS/PANDAS and although the ENT doctor said it was a possibility, I was told he did not know me well enough to say for sure that this is the case. I suggested to him to speak with my neurologist, but he brushed it off. Also, there was no mention of IVIG treatment.
This appointment wasn’t seeming to go all that well as you can tell. He even got snippy and annoyed at Dave when he asked a question to clarify something. I can’t remember what it was for the life of me, but the doctor’s reply to Dave was, “We already talked about this last time”. Okay?!
This appointment looked like yet another, “I’ll see you in 6 weeks”, but I think a teeny tiny part of Dr S’s letter might have sunk in as after examination and what we could get for a real discussion, he said we could do the tonsil and adenoid removal surgery.
The ENT doctor said to me, “I have been doing this for over 30 years, and I have never had a patient with so many ongoing issues. I usually deal with one or two things. You have so many that overlap one another.”
When he examined me, he told me that my swollen lymph nodes that are continuously spreading wouldn’t be related to my tonsils because of the location.
My spleen is enlarged, and that also has no connection to the tonsils as well. I was kind of hoping it was all correlated. EBV or Babs I’m guessing is causing the spleen issues again. Boo.
I was then told that he cannot guarantee anything to me with all of the ongoing and overlapping problems. I was given a big MAYBE that it will help my throat issues, and some of my swollen lymph nodes. It MIGHT help with possible neurological issues, and it could POSSIBLY help with my now what seems to be a new normal, ear infections. I have never had ear infections until this past year, and I’ve had several including a perforated ear drum.
I had a pretty heavy discussion with Dave about having surgery. I know it seems like a simple procedure, but adult adenoid and tonsil surgery is a whole different ball game. It takes a lot longer to heal, it is a lot more painful, from what I hear it is just reallllyyyyy unpleasant.
He gave a big, “It’s up to you”, about it.. which isn’t overly helpful or insightful so I pushed him and told him that I needed real thoughts on having this procedure done. Dave brought up some pretty valid points to consider. One, I don’t heal well at all. One example is my gallbladder surgery. Post-op infection, almost needed a drainage tube.
The second point he made was that everything that should be simple procedures always seems to end up as projects. My heart monitor I should have been in and out of there within an hour or two, and it almost ended up being an overnight stay. My gallbladder I was in the hospital for two days. My leg procedure a few summers ago I ended up with a clot in my leg. Nothing ever goes smoothly as it should.
Dave’s last point was what had been discussed at the appointment. We don’t know for sure if this surgery will be extremely beneficial. It’s a crapshoot, really. Obviously, the biggest concerns I should worry about at the moment regarding my tonsils is the fact that they are swollen, have been for several months, and it does effect me on a day to day basis.
My throat is really uncomfortable. My lymph nodes that definitely coordinate with tonsillitis are painful. I’ve been having issues with breathing, gasping for air at night, and I occasionally have a sensation that I am choking trying to swallow.
Will it help with anything else? Not a clue. But Dave does know it has been one additional sucky thing on my laundry list of problems. It is all about the risk vs the reward in my case.
So, the decision is made. I am taking the big gamble. Let’s cut those fuckers out. Do it up. Why not. I am going to go with the butterfly, rainbow, and unicorn attitude that this surgery will make a huge difference between my ongoing throat issues, ear infections, and potentially help my neurological issues.
It HAS to at least help my throat. I mean after all, the ENT doctor has been dragging me along for a very long time, and I am sure after my previous appointment with him mentioning I might need surgery and then saying how terrible it is for adults… I believe his exact words were, “ It is the most painful thing you will experience having this surgery as an adult”.
I am really betting that won’t be the case but for him to say that, then suggest surgery during my next appointment he wouldn’t have even put that on the table if he didn’t think it would in some way, shape, or form be helpful. I’m kind of at my wits end with this so I think it just really needs to be done.
My next appointment on the list last month was my yearly eye exam. It was a big “aha!” moment. I figured I would bring up my head pressure issues since it does effect my vision, especially if I am completely losing it for several moments. He knew exactly what it was when I was explaining what has been going on with him. Ocular migraines.
Who woulda thought out of everyone that my eye doctor would know what this issue is. Of course almost all the medications that are used to treat them I am already on, but sometimes you just need a name to these things going on in your body to kind of keep you sane.
I mean, this is an actual diagnosis, but sometimes people need those “feel good” diagnosis, a title to all your symptoms that doctors throw out there when they really don’t have a friggin clue. I definitely needed a title for this issue after my neurologist said, “You got me!” telling him about my head feeling like it was going to explode and not being able to see.
At least I know now. And I also had the annual question if I have been tested for Myasthenia Gravis after about a minute or two of talking with me, staring at my droopy right eye. Haha. Always up there in the titer, still negative, not enough to get treated or diagnosed. We evaluate it every six months or so. Always the same, never technically a positive result.
On top of all of this, I have been doing pretty aggressive treatment protocols. I was doing Alinia, Augmentin, and Cipro for quite awhile. Eventually, my tummy said, “when”, and I took a short break.
We are always very cautious with my stomach as that has been an issue in the past, and I ended up having to take a much longer break than I would have liked to, with lots of supplements and a very strict diet to get it back to normal.
I fell apart during this protocol. My POTS was much worse and I ended up having several episodes of chilling on my bathroom or living room floor. I ended up getting this weird rash on my shoulder (Dr S immediately said Bartonella is flaring pretty badly), and I was having some major pain issues.
My knee almost feels like bones are rubbing, and there is pain on top of my kneecap right above the bones. Dr S told me that Bartonella really likes to get into tissues, bone, and cartilage, so maybe that is what is going on.
Other than my bum knee, my legs have had a mind of their own. They are either jello, I’d describe it as the feeling you get when you have the shit scared out of you, like when someone almost causes an accident driving or something.. you kind of know what I mean, right? Well, that is my jello legs. I get either that or no feeling at all below my calves. In turn my hips and lower back make up for walking, so they get pretty tight and uncomfortable.
I have been pretty brain fogged and getting confused easily. Bartonella I know is definitely back, as I started to have moments of feeling a little nuts.
I booked an appointment with Dr S and we discussed another game plan. With Lyme and co’s for so long, and having a lot of experience with treatment, I always kind of jot down different ideas with protocols. I find this funny somewhat, but appreciative that I have a doctor that listens, he even took my little notes with protocols and photocopied it at my appointment.
I had mentioned the rash and showed him a few pictures, and as I had said, Bartonella is back and in full force.
I told Dr S how my month had been going, and in addition to what I have mentioned, hot flashes, edema in my legs and ankles, and being even more tired than per usual.
I gave Dr S a little disclaimer on this symptom that seems to reoccur, that I’m not nuts, and told him he would find this a bit ridiculous…
Every single time I hit Bart, I have this sensation that my teeth are all loose and begin to think they are rotting out of my face. I am not really sure why, but I end up having Dave do a nightly check of my teeth to give me comfort that they are not all loose and rotting. I told Dr S I know they aren’t actually falling out and he kind of chuckled at my original disclaimer and replied, “Well, that is a LITTLE nuts”. Haha.
Well, I suppose it is. He’s known me long enough that all these hallucinations and voices I at least know aren’t real, this is just one of the things I deal with when treating Bartonella. It is annoying, I like my teeth, and I prefer not to look in the mirror and obsess over them, but I am just stirring up and killing bugs.
I already far surpassed my out of pocket costs with insurance for 2017 and I have to start all over with the new year, so you know what that means.. stockpile of my meds!
Kinda gross I know, but it is a wise decision, especially with Alinia. Even with insurance a week’s worth was around 200$.. I got the biggest refill I could, several weeks worth for free! Free is for me!
Andddd the blood work. I always tell Dr S to not be shy with my blood work as we are always looking for answers, but I always do a big donation to the vampires at the end of the year.
This draw was a pain in the ass. Between the tech looking up the tests and multiple stab wounds, I was at the hospital for a good 45 minutes, and I even got it done when there was no one else in line.
Oddly enough, I always feel a lot better after a blood draw. A little body clean out I guess?
Once again, EBV is completely reactivated. I would definitely contribute this to some of my ongoing symptoms, and have been doing my herbal antivirals in hopes the next time I get tested my levels go back down.
There was a few other tests that were slightly off, one being VEGF. I wasn’t really too familiar with this, but I guess it is a test that Shoemaker does. Knowledge is power, so I did a little delving on the Surviving Mold website.
VEGF has to do with blood vessel formation and blood flow. If it is low, that is bad, kind of common sense. I don’t know if Factor V Leiden would contribute to this, or the fact that my circulation has been piss poor lately.
I left the office with a Bartonella focused treatment. I started my new regiment out with Mino, Clinda, and Flagyl, and did this round for a few weeks. Next time I go back to it I will be adding A-Bart and Houttuynia.
The first week or so was pretty miserable. Nausea, fog, shaking badly, I was completely depersonalized.
I ended up having a bit of a mental breakdown the week before Christmas. I get overwhelmed every year doing all the baking, shopping (even though it is online), going into the card store to pick out some cards, sending out cards, everything.
There was a few days I needed to run errands and I sat in the parking lot at these places I needed to go and had to drive home empty handed. I did a few drive-byes in town to see if I could get a close parking spot to the card store and I knew I couldn’t walk that far, get the cards, and walk back. It was just too much to do for a day.
It seemed like the Flagyl days and the day after made me super depressed. I wouldn’t even have a reason why. I do know though, every single time I am hitting Bartonella really hard, this tends to happen. It always goes away, but in the meantime it stinks. Not only is it exhausting, it makes me paranoid and anxious about every little thing.
Dave came to my rescue though, and buttoned up everything I needed to do, like the baking and making my traditional holiday beef jerky for my coworkers. I came home to this all completed as well as having the dishes done, laundry swapped over, and my “honey do” list completed, including putting a new filter in our water system.
Side note: a honey do list is a list of chores for your man. He is usually pretty good at getting these done in a timely fashion before I remind him of the honey do list, so he gets a gold star.
As I have continued on with this protocol, I have noticed I have been doing some pretty awesome things. I have been having little chunks of the day that I have more energy, and have been doing a lot more. My “thing” lately is cleaning sprees.
I do hit a wall eventually, but I have really been getting some serious cleaning done, and have been doing a lot of cooking and can actually run a few errands and stand in line without fearing I will pass out or having to lean on something casually so no one notices.
I went to Walmart with Dave, my previous trip a few weeks prior was a complete bust, Dave had to bring me out to the car and nothing got crossed off our grocery list that day. This time although we didn’t do the entire store, we grabbed everything.
Dave had me hold the cart for some balance and I did it. We rarely go to Walmart, but I usually rock a scooter and my shades when we make the trip.
Toward the end of shopping, Dave was kind of in a mad dash to grab everything, and asked me to read off the list of things we needed as it would go a hell of a lot faster if he just went down the next isle or two to get things.
I ended up developing some foreign language, and replied either stuttering or yelling “BABABABABABAHH!” It doesn’t even phase him at this point, he just grabbed the list from me and made sure I held onto that cart good and tight haha.
I made it though! Walmart is really hard to do. Between the lights, the stimulation, and the fact there is a lot of walking, it is a lot. I slept for 4 hours when I got home but it was a successful trip.
Round two of my protocol was Mino and Levaquin. I am actually quite surprised. There was no nausea, no bathroom emergencies (LOL), and the first day of starting this protocol I worked at my Dad’s in the office, and then came home and scrubbed my bathroom. I was expecting to be on the couch in misery, as that is usually how day one goes, so this was a pleasant surprise.
I have continued to really get a lot accomplished and feel like a productive person doing this new protocol. Hooray!!! Little things are big things!
There is always a BUT, my new protocol has given me the most disgusting tongue. I woke up one morning, began to get ready, and when I brushed my teeth this little surprise was on my tongue.
Ummmm what the hell is going on??!!! I’ve gone from blisters to this mess?! This really can’t be good. After all, black is the color of death.
I brushed and brushed, scraped, it just wasn’t coming off. It isn’t a film like thrush that can come off. I did a little research and it can be an abundance of things, but Mino can also cause this particular issue.
It is a little concerning, I mean, it’s not healthy looking, but I am a little afraid that if the ENT doctor sees this I might not get the surgery. I will have to detox, anti fungal, anything I can think of before surgery day. In the meantime, needless to say, there will be zero French kissies between Dave and I for awhile.
Well, it is now 2018. Yikes. Dave stayed up to watch the ball drop with me on New Year’s Eve (which was a surprise, his usual bedtime is around 9:30 since he is kind of an old fart) and I couldn’t help to feel a little bummed out. When the ball drops, it is sort of meant to symbolize a new year, a fresh start, but I couldn’t help feeling like another year had passed me by.
Just looking on paper the year 2012, the year I started treatment, and then seeing 2018… that is a big gap in numbers of time that has pretty much been a nightmare that I wouldn’t wish upon anyone.
Well, maybe for a day in my shoes if you are a dink to me, let’s be real here. You are a total liar if you don’t have that slightest feeling once in awhile. Everyone has that one person who completely judges or misunderstands you and you are talking to a brick wall with anything regarding to your illness, and you’d like to just give them a teensy tiny taste of your reality. Just a day, nothing permanent, just to have them understand.
Looking back this past year, I have really gone through a lot. The biggest being my narcolepsy diagnosis. I know this will be a lifelong struggle, I just hope that one day it will be controlled much more. With so many overlapping issues it is always hard to differentiate between that and things like chronic EBV, the Lyme, the co’s, the neuro crapola.
My throat issues have been going on for a half a year so far. It’s been miserable, but I have high hopes that 2018 will change that, and I am hoping it will be beneficial all around.
Although some days I feel like I am falling apart, there have been so many days that I have seen real improvements. BIG improvements from where I was in the beginning of the year.
Getting treated for the narcolepsy has given me a higher quality of life. At the end of 2016, right before my diagnosis, I was in tears at Dr S’s office, which I hate as I seem like a big ol’ baby, and said to him, “This is not living”.
It’s true. Going through the motions of daily life as much as you can, but it is to only to get by. You are no longer you. You spend your days focusing more on when you can sleep, falling asleep, feeling every little bit of these infections taking over your life. There is no room for anything else and it is absolutely heartbreaking.
I wanted so badly to be able to go out and do more, but it isn’t like I can just drive anywhere, let alone go anywhere other than small local places on my own. My body just won’t let me.
I know Dave certainly wanted to do more things together, but there is a point in the day my body just says “when” and that little window of being able to even try disappears.
I am a rockstar, I am strong, I am brave, but I have my moments.
I feel like once you are seasoned with having chronic illnesses, and are no longer as sick as you once were, you feel every single thing a lot more. Physically and emotionally.
Physically, this disease has been really debilitating, my body just wants to what it wants, and I really have no control over it.
Emotionally this all has really begun to take a major toll. Ummm… where the hell did my 20’s go?! I think maybe because I turned 30 this year, maybe because I reached my anniversary of the fifth year of my treatment.
I have begun to experience anxiety about everything. I have found myself overanalyzing the most insignificant things and having paranoia, I have definitely become more of a recluse.
I used to have a great, “whatever” and a pretty care free attitude, I still do have this attitude a lot of the time, but these emotional issues are pretty new to me, something I have never really experienced. They suck.
Although I am not better (yet), I really am a step ahead in my progress. It doesn’t really seem like it a lot of days when I am struggling, but I know I am heading in the right direction.
Treatment is by no means fun, especially with such an aggressive approach (I prefer aggressive, I don’t mess around), but I know it is working. I have felt “stuck” for a very long time, but I think my combos are the right ones for me.
With Lyme and co’s, there really isn’t a right or wrong way, and everyone is different. Basically, it is trial and error. I think I might have hit the lottery on what might be the most effective treatments for me, and I’m really thinking there will be significant changes throughout the year.
I know slowly I am seeing bits and pieces of those “blue skies” Dr J talks about.
When I see those pieces, I have hope. I know I overdo it in those moments and pay for it but it is so worth it. Those pieces are finally coming back that I have fought so hard for. Who knows, maybe next year I will be writing about that one word we all pray for every single day, “remission”.
Wishing everyone a healthy New Year! Of course, you get an Olive picture. On one of my sprees, I folded my gigantic pile of laundry, and she was my assistant. She didn’t actually do anything to help, but isn’t she just the cutest?