Yes, I am aware it is September now. August was a pretty busy month, but I figured I would fill you in and not leave you hanging!
August was full of doctors appointments, work, treatment, and attempting to be productive. I feel like lately I have had bits and pieces of “bluer skies”, as Dr J would call it, so I make the most of it. I have done some grocery shopping without chaperone Dave. I have cleaned up my dirty house a bit (I think it isn’t completely possible living with 3 little monsters), and been cooking and freezing some extra meals.
On the other hand, I fade and fade fast. Some days I am still a fixture of the couch – shaking, rocking, and altogether completely out of it. I have been having really bad days with my Tourrette’s syndrome, but also some other days you would never even know.
There have been days I have been told that I “have that light back in my eyes”, and days that I am asked if I am okay, and the classic, “you look exhausted”.
You know what I am saying! Chronic illness is full of good days and bad days. Like a box of chocolates, you never know what you’re gonna get! 😉
This past month, I have been on Augmentin and Alinia. The nausea can be really bad, and by nighttime I generally feel like I am being stabbed in the stomach. I am in a fog or completely depersonalized. But I will say, I have tolerated the combination extremely well, especially not pulsing and treating everyday. Most of the time even pulsing it hits me like a ton of bricks and there is no “bluer skies”.
I finally got in with my ENT. I had been impatiently waiting for well over a month. As I had mentioned before in my video blogging, I have had pretty severe lymph issues. My neck is full of what they call “shotty bilateral lymphadopathy”. Basically, this is a bunch of hard bb pellet nodes in my neck. The center of my neck and under my chin has been completely swollen and even affecting my breathing. It has gotten to the point it has changed my voice and I feel like I am breathing through a straw. It is hard to drink liquids and I have been waking up gasping for air and coughing like I have been strangled. Heating pad to the neck, I’ve just been plain ol’ miserable. Not to mention it isn’t visually appealing whatsoever. Haha. I now have a big turkey neck that I never had before. Gobble gobble.
Doctors upon doctors not too sure what was going on, an ER visit that was unpleasant (but I did get my CT done, so that made it all worth it), my PCP, Dr S… Dr S is the only one that hadn’t been a turd to me about it. He at least took the initiative for some testing. My PCP pretty much said, “It could be Lymphoma, have a good day! Oh by the way, I don’t want to be responsible for you”. Oy vey.
But Dr S did give me a Leukemia and Lymphoma immunophenotyping test.. okay I am not super positive if that is exactly what it is called, but it seemed very unlikely this was my issue. Phew.
Surprise surprise, the CT and all the paperwork the ENT office requested early for my appointment was never even looked at. I was kind of a piss pot about this, so was Dave. He piped up to the nurse that the ENT is doctor #5 and let’s take this seriously, get it figured out.
Side note!!!! *** When you feel like shit, it is a great thing to have someone go with you to appointments. There is no way I could drive the half hour to the ENT office either way, so Dave goes with me. Although I bring notes to discuss since I can’t remember a fucking thing, he adds whatever I may be forgetting as well as asks questions I might not think to ask.
He is my “translator” if I start stuttering or begin to sound like I am speaking a foreign language. I often get a puzzled look, and he always jumps in with a, “What she means is”, and correctly tells the doctor what I am trying to spit out. He is pretty good at being my translator haha, Sometimes I make no sense. Dave gets a gold star.
The nurse was going through my records and stepped outside with the ENT who was then reviewing my CT. I had a laugh.. In the hallway the doctor asks, “Has she been tested for Lyme disease?” I actually never mentioned it to them, but it was in my life story of a binder full of records. The nurse replied that I have Lyme and am still treating it. I’ll get to the aggravating laugh part later…….
The biggest concern is obviously my breathing and the swelling. Breathing is a good thing after all. Lidocaine was sprayed up my nose, we talked a little bit about symptoms I have been experiencing, and the then stuck a camera up my nose and down my throat to take a looksie. My adenoids and lingual tonsils are all swollen, as well as my artenoids and post cricoids are rather unhappy as well. All with edema, and most with erythema as well. What does erythema mean? It is “superficial reddening of the skin, usually in patches, as a result of injury or irritation causing dilatation of the blood capillaries”. Thanks Google!
The ENT told me to not focus on the side nodes at this time. Viral? He came off Lyme. He gave the diagnosis of laryngopharyngeal reflux, or LPR for short. Also known as “silent reflux”. He said that this can actually be a neurological issue involving the vagus nerve. In the past, I have had stomach issues likely from my vagus nerve and had to take a bunch of supplements to aide in digesting my food, or it would just chill in there for a long time, which is not a good thing.
I was told to not worry so much about acidic foods but to have little to no fat and was put on Protonix. He said this can take a long time to heal, much longer than someone with regular reflux. He also gave me an allergy test as I haven’t had allergy tests done in the past.
Now here comes that aggravating laugh. My allergy testing came back. All negative. Nada. Zip.
A doctor mentions Lyme, Lyme is confirmed. Yeah no.. it MUST be allergies. That is my side node diagnosis. ALLERGIES. ARE YOU DENSE IN THE HEAD???!!!!!!! THE TESTS WERE EFFING NEGATIVE!
This is so incredibly common with Lyme. I hear so many stories of people getting tested, have CDC positive results in their hands and their doctor still says it can’t be Lyme. Lyme isn’t in whatever state they live in. It is a false positive. Any excuse. Frustrating, huh?!
I mean of course, with a Western Blot there can be Lyme specific bands that are positive but that also isn’t recognized. If you don’t have that test lit up like a Christmas tree with that CDC positive test, you don’t have Lyme, even with bands that are positive that are indicative of having Lyme disease. You can’t just be a little pregnant. You either are or you aren’t. That is how it is for us though unfortunately with these uneducated doctors. And like I said, even with that positive test, they will still poo poo you. Gotta love it.
Anywho… I have been doing a little to no fat diet. Not going to lie, as soon as I left his office, Dave and I had a last hurrah lunch at a Chinese food buffet. I stuffed my face with all the fried and greasy goodness I could, knowing I would have to behave. I actually usually don’t eat poorly, but when you are told you can’t have something, of course you want it.
After my last supper, well, lunch, I was off to appointment number two of the day, my sleep neurologist. Things aren’t perfect by any means when it comes to my Narcolepsy, but life has definitely improved from this aspect. I have gone from 14-18 hours a day of sleeping to 8-10. I still have a tendency to instantly fall asleep, and get an overwhelming sensation that I need to fall asleep right then and there. It is almost like complete panic.
She told me that this is more trying to make life better, but I won’t ever not have some struggles of having narcolepsy. She suggested trying to take a one hour nap during the day. It is easy for me to do so, just give me a couple minutes. Problem is, I can’t wake up. We decided at this time to just keep my dosage the same, and to just play around with it a bit and see if it continues to help. Like taking it earlier, or later, just to see if it makes any sort of a difference.
I am a little worried though. I am having the sensation of complete exhaustion when I have any sort of stronger emotion such as laughing or having a deep conversation. This gives me a loss of muscle control, my body just turns into jello. This is kind of a lighter version of cataplexy. I am hoping it will pass. These episodes were improving for a long time, but I am starting to take a few steps back. If it gets worse or continues, she said to give her a call. At least she is really nice to me… even though she always asks how my “Lyme’s” is. Haha. At least she believes me and is always concerned my medication will make my “Lyme’s” worse, or my seizures, which is always a possibility with taking a brain stimulant.
I was looking at my dictation notes from my appointment and I found it interesting that she had mentioned that I was opening and closing my mouth and clicking my jaw. She had a question mark, Tourrette’s or new tic? I don’t recall doing this, but I kind of envision myself looking like a crocodile opening and closing my mouth during my appointment. Haha. Super.
I just had an appointment with my LLND. I had shot him an email prior to my appointment asking to start over with my supplements to see what is truly necessary. Instead of having a pile of supplements ready for me, he gave me a list and told me to finish what I have and downsized my stash, and changed a few things that he thought would be more beneficial when I use everything up. I am glad I have a doctor that isn’t into selling me a bunch of things, and wrote a list. It could have been one very expensive appointment!
I read off my bulleted list of symptoms and filled him in on my recent appointments. After playing my little violin, I asked what the game plan was…
Well, back on treatment. I have had about a week and a half off. During that time I did a lot of juicing to detox, and it is easier to do the fun no fat diet. At this point, it isn’t my first rodeo with treatment and he kind of looked at me and asked what I wanted to do, that I already probably had something in mind. He does the same with my blood work, gives me a look at the sheet and asks what I want to add. I apologized for being bossy, but he did say me it was welcomed from me. Like I said, not my first rodeo haha.
I am adding some yellow chalky syrup to my mix, as well as my nemesis last summer. In short if you haven’t read my blog, I went nuts. Voices in my head wishing me self harm. The voices wouldn’t stop. Literally 24/7. Nothing could drown them out. It took about a month for it to go away when I stopped treatment. I had been on this antibiotic for years on and off with significant improvement, so it was just bizarre I had a strong reaction. I put two and two together, I had started a biofilm protocol at the exact same time, so I think a lot of Bartonella released and it was just way too much. I am giving it a whirl again though! Here goes nothing!
I started treatment a few days ago. So far, I am definitely bogged down and “fuzzy”, I guess you could say. The Mepron is definitely hitting some Babs, I am getting horrible night sweats. The back of my head and hair are drenched, and you can see where the sweat has gone through my jammies. I haven’t started Alinia yet, my Dad has to pick it up for me. I’m not really looking forward to it haha. I am getting the lump in your throat that you feel when you could possibly barf and I have that awful feeling of liquids sloshing around in your stomach that happens when you get super nauseated. But, I need to keep hydrated.
I am waiting on a lot of my blood work, so I don’t have an update on that yet. So far, everything wasn’t really too far off. A lot of on the fences but not out of range. My chloride was high though? That is a first.
The only test that was off was my vitamin D. It has been low normal for a long time… when I first got tested it was only a 13. That is pretty bad. Now it is a 24. I didn’t know how it could possibly be low, it is in my array of supplements. I did a little research and found a lot of vitamin D rich foods have fat. I am not eating fat. Secondly, I look at the bottle of vitamin D. Suggestion was to eat with fatty foods for absorption. Well then! That would probably explain it! But, I am now having to have a little peanut butter twice a day, so I am thinking by the next time I have a blood draw it will be better if I take it at the same time.
We are retesting for Myasthenia Gravis, as I always am teetering in the middle to high end, but never a positive. Immune complexes once again. Viruses. We had discussed Sjogren’s as a real possibility contributing to my throat issues, as well as my tongue issue, and a history of dry mouth on or off medications and dry eyes.
As I said, I am definitely not looking forward to adding Alinia tomorrow. Really not. I will definitely be herxy and if I am out of it now, I can only imagine how it will be with the add. I am pretty reactive to it. At least I know it is working. I think of it like this though.. treatment is not fun at all. But, you need to look forward and do what you need to do to get better. I am not a quitter.
How does that saying go?? My track record is 100% of getting through my worst days and that’s pretty good? I don’t know. It is some meme I have seen floating around. But yeah. That. I do have a perfect record! I will be okay, I just know it.
Since I forgot last time, here is Miss Olive, and the gang! I am never lonely in this zoo 🙂