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.
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!