I tested positive for Glomus mosseae?

Fungus? But I am guessing.

So what do you do about it? My doctor said he talked to dr fry fro fry labs and said it can be treated with doxy and turbinafine. Do you know what it does to you?

I live in southern Oregon. My doctor is amazing, he hasn't gave up on me yet when all others have.

My doctor did all kinds of strange tests recently trying to uncover the cause of why I'm "stuck". He keeps telling me he won't give up until he finds out how to "unstick" me.

I do get all kinds of crazy rashes. I have also been diagnosed with a mast cel disorder, and that seems to be the root of most rashes.

I have so many symptoms it would take 108 pages to write it all down. But mostly I have episodes where I have to struggle to stay conscious. It's hard to breath, my vision gets wonky, and it's simply the most horrifying feeling in the world.

I have terrible headaches that make me suicidal. I call them suicide headaches. My pupils are two different sizes from all the pressure in my skull. I have POTS, MCAS, and my pituitary has completely stopped producing certain hormones. I have frequent rashes and fevers. I'm losing the ability to walk. I am in constant pain. My hearing keeps going out and I have stuff dripping down the sides of my head out of my ears. I'm losing my mind. At the age of 27 I can't remember how to make a sandwich, or where my son is even if he's only been gone for 10 minutes. The anxiety and depression from losing control of my physical body and my mind is extremely tough to deal with.

I have painful joints, I starve myself because chewing makes my head hurt too bad. My eyelashes and eyebrows are falling out, I have bald spots on my scalp. My long hair falls out in handfuls. My menstrual cycle is a joke, it tries to kill me. I have this lingering doom that I'm not at all who I once was, who I should be. I'm terrified of mentally cracking, I fear I already have in some level.

I'm growing these painful lumps on my feet and head that don't show up on imaging. The skin around them is thin and has turned purple/grey/blue. I have sudden swelling and anaphylaxis on a daily basis. I'm 90 pounds soaking wet. I'm nauseous and puking constantly. If I look up or to the sides I get dizzy and my vision gets weird. I have to keep my head in certain positions or I feel like I can't breath, or I'm going to pass out.

My muscles twitch. I can't bend over or lay down without it feeling like my skull is giving birth to my brain. I've had one cavity my entire life and now all the sudden my teeth are super sensitive and painful. Not from cavities, but something funny is going on. My neck jerks, like a huge twitch. It reminds me of people with Tourette's.

I'll be sitting there and all the sudden my heart rate and oxygen plummet. For no reason. I had to get an oximeter, and I can't even look at the numbers myself or I panic even worse. I've seen my heart rate in the 20s and my oxygen in the low 80s. I've had seizures, passed out, puked in public, went number 2 in the car, peed my pants in the middle of a grocery store. My pcp still says it's all from a mood disorder. Psh.

I just wanted to say I really hope you get some relief soon. What are you currently being treated for?

Currently I'm only on medications that are absolutely necessary for MCAS. I infuse Benadryl as needed and leave it at that. I wanted to stop everything since I have such severe reactions and we aren't sure what the driving force is anyway. My doctor gave me his blessing to stop Lyme treatment for now.

He is sending me to a university hospital to see if I need brain surgery for chiari. If that's the cause of inter cranial hypertension we have yet to see..

IHL~I just graze thru here now once & awhile & will eventually catch up & share.

But in the interim, I wanted to say that other about a year ago I met in person someone who was also diagnosed as one of the worst cases the doc had ever seen. To first look at her, she seemed normal (we knowingly & sadly laughed about that). She lifted her shirt & there were odd bumps & lumps aplenty; some were found to have grown some sinewy, fibrous stuff within her. She is about twice your age & the list of symptoms goes on...

I'm trying to be brief. My point is that she was on abx, antiparasite & then...antifungal. She's not "cured" yet, but has come a lonnnggg & healed way. She had the help of Frylabs, too.

So I think you may be on the right path, as you have a good team. Your noggin still works incredibly well to be able to write here.

My battery is dying so I am gonna sign off. Please keep us posted & know that you are not alone & so many here share their love. Hugs, Jo

Oh-another thing I forgot to add that struck me in reading your last post---please, please--re surgery---make sure it is really, really necessary!

Surgeons wanna cut & sometimes it sounds like a good idea--like cut the bad parts out-let's get it over & done with--But--if you can, give it due time & deliberation, as often the meds can cure w/o the cutting. Get 2nd, 3rd opinions & ask those behind the scenes, like at the lab you mentioned. Check with the peanut gallery here, as many are warbuddies who have endured a lot, too. X

Post Edited (happyjo) : 5/22/2016 8:43:38 PM (GMT-6)

IHL~I know you are still going thru hell...I re-read your post & I just wanted to tell you again how brave you are & how you are doing an admirable job chronicling your journey.

Also, I have to sadly laugh at your quote:
"I can't bend over or lay down without it feeling like my skull is giving birth to my brain. "

I know you weren't trying to be particularly funny, but you said it well. (((Hugs)))

I hope you don't have Chiari and have to have that surgery.

I would want to make sure that the inter cranial pressure can't be alleviated by treating your lyme and co's infections first.

Hoping you have some relief soon...you deserve it.