///// PREFACE /////
First and foremost, I want to assure you, this is not in your head. I say this, figuratively.
The journey is hard to keep short, but I have been suffering with this for over three months. I can't cover all info in one shot.
Frankly, this ailment takes life out of me. I hope it's not permanent and that we can get some answers soon.
I'm working on it.
On this, if doctors would like to see me or inquire, I'm responsive. I have traveled to Chicago, Cleveland, and New York, thus far.
///// NOT ALONE /////
There are many paining, in the closet, on this. I am eternally grateful for your courage, and that of others, to post health concerns. From scouring research for weeks, I think hundreds appear to be misdiagnosed with delusion. I, too, was, for weeks. I am finally getting over the fence. This is partially due to an incredible video I captured of my (our) somatic experience. Alas, as symptoms become more problematic, they become easier to document.
It's taken every ounce of persistence for me to get to where I am. I assure, I am committed to getting an answer, for all, if it kills me.
///// SPECIMEN INPUT /////
I finally had a doctor willing to take a specimen from me, yesterday. This was after reviewing my video, and after first rejecting an Albendazole refill. I am crowdsourcing what to make sure I get in that precious specimen jar. I do this, becuse I've had it all: worms, possible eggs, winged insects. I want to make sure I get something in there from my body that will test well. This is for everyone.
I am the, "hostess with the mostess".
///// BACKGROUND /////
I am a young-ish female, in (formerly) great shape, ivy-league educated, with top hygiene. I add this flaunting information, with reason. This plague does not discriminate, against immunity, socioeconomically, age-wise, or, with cleanliness.
///// SAME AS YOU /////
I am having your issue, starting with what appears to be bite on side of my face, close to my ear, in late March. I woke up to what I thought was a pimple that burst with a bit of blood. This spot remains white on my cheek, cavitated. It has moved a bit, and is incredibly sensitive to touch. I treat it with topical ivermectin or fenbendazole. It bursts little eggs, worm-like specimens. Keeping it at bay on my cheek keeps it out of my eye, and keeps me out of the ER.
I thought it was demodex. Then, Lyme disease or scabies. Now, it points, and doctors are slowly coming to, a parasitic infection.
I have read your other posts and was inclined to respond. Thank you.
I, too, have the feather (but much more intense) filarial effects throughout my body. This issue is quite systemic. I lost 10 lbs in the first month. I used to fight for every inch, every ounce, of trimness. I now have to eat peanut butter, 1-2k of calories before bed, just to keep calories up. I have never had such luxury.
///// ON MOVE /////
The sensation I have is located in my cheek, close to ear. This tissue, the buccal, can have overlooked worms and infections. This can come from dental work. Unfortunately, from the start, the movement sensation, has progressed from my eyes to my toes. It's been bad. I save my ER visits (4 now), not for what was my first-ever anaphylactic experience, but for needle-like pain, movement in my eyes.
To put this pain in perspective:
I have had metal in my eye from hanging a chandelier, causing an abrasion with empathetic doctors and lots of pain medication.
This eye pain is about 40x worse.
I dropped all of my work, social activities. Exercise is gone.
///// HEALTH ROCKED /////
My baseline was great. It's one reason I still have the energy to set up an account and write you, hopefully help others. I used to be in fine form, running 4/5 miles day up to March. My breathing has become increasingly short. Over weeks, my joints have been affected. My eyes are 20/30, without correction. Day vision ebbs and flows, with blurriness. Night driving is out of question. My body seemed ok for weeks. Now, my tissues have been deeply affected, including my spine. It's been ravaged.
I have been suspicious of myiasis from the start. I told my friends I think I had a gnat issue in the house, as it was undergoing a huge renovation with fill dirt, sitting water, surrounding the foundation.
I had lesions, winged insects? from pores. I had terrible scratches in tiny, erratic lines on my spine. It's not dissimilar to what I read about flystrike. It's terrible to think it may be something like that. I don't even mention most of this to doctors.
///// DOCTORS /////
I have seen a number of doctors, specialists. I have responded to ivermectin, and moreso, Albendazole. When I was in very poor form (happens every few weeks), an opthomologist thought I had SJS. This was upon first visit. He ushered me to a dermatologist on the spot, next door. He did a biopsy right there. I have had three biopsies submitted.
// NOTES: for later
///// BIOPSIES, DIAGNOSES /////
Differential diagnosis for mastocytosis. Now testing for an incredibly rare genetic mutation. I asked for another round of Albendazole, instead I get increasingly weird differential diagnoses, tests for them.
This is what is (partially) the issue with the medical costs in this country. I continue to get sicker. It took me over 10 days to get my labs done, as I was getting really frail.
///// TLC, OTC ////
I’m luckily rebounding with some TLC from family, 10 garlic cloves a day. Eat those like candy, but make sure to get the allicin enzymes out! It has helped me more than ivermectin, but less than Albendazole. I had the pinworm rectal thing about 4 times on ivermectin. Maybe it did help, but I had significant skin reactivity (in a bad, then subsequently good) way under Albenza. I’ve called it a miracle drug, but as the weeks go on, I don't think it will take care of this all.
I've tried the shop with OTCs. Topical: Epsom Salt
baths helped expel insects, worms. Icy-hot or preparation H for lidocaine. These things also hate benzocaine. There's a chigger cream that makes this stuff pop out of my skin.
Systemic: garlic, apple cider vinegar, kombucha. Funny note- somehow TSA missed an entire glass bottle of komubucha in my flight bag. Thanks; I needed it on a steamy, 90+ degree day in New York.
Pumpkin seeds, pineapple, those and other enzyme pills didn't seem to have much effect. Garlic pills, nah.
///// BLOODWORK /////
Remains, sometimes annoyingly, normal. Tryptase is climbing. Now is 11.6. It's one of the few things keeping doctors interested.
Foreign travel viruses are negative:
Chikuyunga, Dengue fever, schistosomiasis, filariasis, syphilis, HIV. I show exposure/ immunity to HEP A, B. Not sick with those, according to doctor.
///// OTHER SYMPTOMS /////
Nits. Egg sacs. Hypopigmentation (white) spots on "bite area", neck, thighs, feet. Mucous membrane sloughing, hence SJS test.
Wiggling (rapid, then slow) in left leg following Albenza. Was prescribed, 2x200 once daily, repeat in 2 weeks by friend's mother's GP. Friend's Brazilian mother ran into me,, when I was 8 weeks in. Said I had a roundworm or hookworm, on first glance. Background: in 2016, I traveled to Brazil with their family, and on own, various regions, for almost one month. I was bitten my mosquitoes (I believe), with 40+ bites, at one point.
Parasitologist: Later, (had to wait almost two months) my parasitologist quadrupled dosage st 2x200 twice daily, 2 days, repeat in 2 weeks. Finished final dose a week ago. He refused another dose I requested yesterday.
Wiggling persists. Mostly in left leg, sometimes in left back shoulder.
// To be continued today and tomorrow.