How are you doing? Remembering to take care? I do hope so. You deserve that much and more.
I'm checking in and also leaving an update. I know I do disappear for weeks to months at a time and I am sorry about that if you've messaged me. I've had a lot going on, but hey! I'm getting answers. It's been a very slow process, but the human body and mind are complex.
I do find myself frustrated at people who tell me "You have to want to feel better. If you train your mind to think you're better and change your diet, your body will follow."
Uhm, no. Becoming vegan/vegetarian will only make my situation worse and as far as retraining my mind to magically get better? That's not how autoimmune issues work, darling. I can't just think "Kay! Today is the day my immune system will stop attacking everything!" and have it happen.
What we have so far: -CCP Antibody IgG of 55 -High Sed Rate, Westergren -Low CK -Higher White Blood Cell baseline (Was 5s with spikes into 6s, now 8s and 9s are the norm with spikes into the 14s and 15s) -Negative Rheumatoid Factor -Inverse Psoriasis under the breasts -Interstitial Lung Disease -Reactive Airway Disease -Structural changes to the entire spine -Complete loss of the natural curve to my neck -Vertebrae slipping over each other in the neck -Sclerosis (Hardening), scarring and narrowing of spaces in the neck -Jump from mild to severe degenerative disc disease in the neck and lumbar spine -Spine now curves to the left in the lumbar spine but twists and curves to the right in the thoracic spine. -Reoccurring sacroiliitis in the right sacroiliac joint -Bone spurs throughout the spine from bone on bone -Cervicogenic headaches that mirror migraines but cause tingling and numbness down the arms and intermittent loss of grip strength -Thalassemia trait (High Red Blood Cell count but crap quality of said RBCs) -Anemia of chronic disease -Hallmark findings of Psoriatic Arthritis -13 on the thyroid peroxidase AB. While that's normal/negative for a lot of laboratories, it's a low positive for others. Either way, it's not zero and if my thyroid wasn't starting to produce antibodies, it would be. Combined with the other symptoms and things found on ultrasound, my mother having Hashimoto's and the rapid drop in TSH and T4, I'm being watched for early stage Hashimoto's. Autoimmune of the thyroid.
And I am also being investigated for Seronegative Mixed Connective Tissue Disease as well as awaiting results on my Mast Cell Activation Syndrome labs. A doctor who specializes in allergies and immunology believes that's what's causing my facial rashes and my severe form of rosacea, as this type of rosacea is deeply intertwined with MCAS. My mast cells are on a hair trigger and it's likely being driven by Autoimmune issues.
I did see a radiation Oncologist on a consult for low dose radiation therapy for pain related to all the inflammation in the spine, neck and SI joint, but unfortunately? He doesn't recommend it. Nor steroid injections. LDRT would kill the cells causing inflammation. It's a process used on treatment resistant patients in severe, chronic pain and people over 60 with like... Osteoarthritis and things like that. The problem, he said, is that if he kills the cells causing inflammation? My body will just send more. The relief will be so short lived and the more I'm exposed to it? The higher the chance of cancer--namely Leukemia and he said he just won't do that to me. He said he absolutely believes something systemic is going on. That there's immune system dysfunction and mast cell issues.
Waiting on the results of the MCAS labs first. Because there's another lab with it. Rabbit Epithelia.
As of the last two months? I've been so reactive to my six bunnos. Not just allergy symptoms, but Bronchoconstriction, enlarged and tender lymph nodes and all sorts of crap.
If they see anything Antibody wise?
Its likely against Ory c1, Ory c2 and Ory c3
Which are the major allergen triggering proteins found in bunny saliva and bunny pee. They constantly bathe themselves, and these proteins then are in their fur. I breathe it in when I hold them and I breathe the airborne crystallized proteins when I clean their kennels.
He did 43 skin pricks in my forearms and another 10 little micro injection tests in my left upper arm.
3 new allergies were identified.
My allergies are now: -Hornet Venom -Wasp Venom -Honey Bee Venom -Cockroaches -Cat hair -Ferumoxytol -Geodon -Haldol -Cladosporium
And oddly? We found I'm NOT allergic to strawberries. My reactions--Those itchy rashes--aren't true IgE allergen reactions, but instead? Strawberries have proteins and components that piss off mast cells. In healthy people? No big deal. In people with mast cell activation syndrome? Can be quite the issue.
Everything is screaming MCAS.
Including the fact these facial rashes believed to be mast cell masking possible malar butterfly rashes lessening when Excedrin Migraine is taken (Excedrin Migraine has Aspirin in it and blocks the COX pathway for certain mast cell related dumps) and the nasal spray he prescribed me significantly reduces my reactivity to the sun-- and that nasal spray is a mast cell stabilizer for allergens.
🤔
We'll see what comes back and what the third Rheumatology opinion says. My PCP just wants confirmation of Psoriatic Arthritis, Hashimoto's and the final ruling on Seronegative Mixed Connective Tissue Disease so we can finally get a treatment plan going.
So far? The only thing certain is that Montelukast needed stopped, as it worsened my mental illnesses, and starting Methotrexate is to be discussed at my next appointment as well as an updated MRI of my spine and a neurosurgery referral for my sesame seed. (Small Internal Carotid Artery aneurysm up in my head)
Still, I'm trying to keep my head up. Finding the beauty in negative spaces and trying to be a reason for people to smile. It's not like being upset about everything is actually gonna fix anything. So I'm trying to just... Keep on keeping on.
I did ask my psychiatrist about swapping to an SNRI antidepressant from my 200mg nightly Zoloft (SSRI) because I saw on my psychotropic genesight test that I'm S/S for SLC6A4--Homozygous for the short promoter polymorphism (SLC6A4 is the Serotonin Transport Gene) and if I don't have enough little cars to transport serotonin, why am I on a selective serotonin reuptake inhibitor that relies heavily on the little cars I don't have?
SNRIs don't just focus on Serotonin. They also focus on Norepinephrine. So we swapped to Pristiq/Desvenlafaxine Succinate Extended Release and we added back my Lamictal/Lamotrigine.
Zoloft wasn't just spiking my prolactin and stopping my periods. It was also inducing mania, amplifying the psychosis and schizophrenic symptoms of my Schizoaffective Disorder, inducing rapid mood cycling, causing amplified agitation and worsening my insomnia. It was also why the Lamictal stopped working. It couldn't keep up with stabilizing me when such a high dose of Zoloft was required to even touch the depressive aspect of the mixed bipolar symptoms tied into Schizoaffective Disorder and that Zoloft was inducing all sorts of other shit.
It was a prime example of fix one thing and break fifty others.
My new cocktail is 50mg Pristiq (100mg is TBD next appointment) 100mg Lamictal/Lamotrigine 1200mg Gabapentin 2x daily 50-20 Cobenfy 2x daily
And since Zoloft has been gone? All hormone labs run came back optimal and an OBGYN confirmed the PCOS diagnosis of 2019 was a misdiagnosis. It was Zoloft the whole time causing everything and possible Type B Insulin Resistance syndrome-- Which is autoimmune too.
I also learned I'm Val/Val for the COMT gene. Meaning my dopamine is basically non existent because the enzymes that clear it out are overactive-- Which is why out of all 16 antipsychotics I've tried before Cobenfy? None of have worked. They all work by BLOCKING dopamine. Cobenfy works differently and it's been a godsend for my hallucinations and other schizophrenic symptoms
Other than that stuff?
I've just been trying to keep on and spending time with my bunnos. I don't care that they make me sick. I can't abandon them now.
Speaking of rabbits
Here's that bunno content the few of you who check in really came for.
Sage^
Phoenix ^
Phoenix ^
Saffron^
Tarragon ^
Coriander and Valerian ^
Coriander and Valerian ^
Anyways. I'll wrap it up here. I hope you all are doing well and have an amazing morning, afternoon, evening or night--whatever time it may be for you!
@GoFish Aww. Hi! Haha. I just got a p100 respirator mask to clean their kennels. The ER physician said because of how small the protein crystals are, an N95 wouldn't cut it.
As for the outdoors? They're indoor bunnies because it's safer for them to stay inside--Rabbit Hemorrhagic Disease plus all the predator animals around here wouldn't be good. Not just cats but stray dogs, Hawks and Eagles. Even if they're in cages? They're high drive prey animals. Just the feeling of being hunted or if an animal attempts to get them in the cage can scare them into a heart attack. Plus, I live in an apartment. Can't really set them up outside. I used to take them out on little leashes and harnesses like some do with ferrets, but a few of them learned how to get out of the harness 🤣
The only pet option in this complex would be cats. And I hate cats, plus I'm allergic to cat hair, apparently. According to the skin prick test.
Though you did give me an idea. I could start cleaning the kennels outside by the dumpster. This way the proteins aren't in my apartment. Their Ory c1, c2 and c3 are like the Fel D in cats or the Cain whatever that is in doggies. Sticky and cling to everything. I got a Puroair 400 air purifier to start sucking airborne proteins too. See if that helps.
