Archive | June, 2016

Appointment With New LLMD – Stroke? 

29 Jun

I finally got in to see my new LLMD here on the East Coast. I needed pain Med refills and to check on my heart and get fluids. The new doctor was awesome!! She looked at all my records and various LLMD’s reports and said “my god you are very sick and you’ve done every blood test or treatment I give here so I won’t lecture you or make you start all over”. That was great because I hate explaining all my illnesses and tests over and over then the doctor says “well I don’t trust these tests I need to run all my own” then you spend three weeks being drained of blood for tests, urine and feces samples…etc. I just want a doctor that works with my other doctor and will be open to things I want to try or tell me of new treatment that looks promising. She was just that, I was so happy to find a good doctor but now I’m moving back to Cali so it may not be for long. Plus this doctor is backed up until November already. She works with cancer parents and more. 

The wellness center started by taking my BP which was 175/115. This may sound normal and most nurses think I’m nervous but I’m not. My BP will stay 175/115 for weeks, months. So the nurse double checked and checked my pulse 15 minutes later and she said “you are going to have a stroke you need fluids and BP meds ASAP”. So all the gals were worried I was going to have a stroke. I was having bad chest pains, tremors were worse and I had this funny zombie feeling like I was sleep walking or something. 

They all treated me like a rockstar there. I was sat in a reclining chair, they gave me water and a lot of fluids (saline). It took about three hours for my BP to drop to 145/105. Then they let me go home. They told me I can come back anytime without an appointment for fluids so that’s great, no RX needed like most places. The doctor told me “you are my sickest patient I have here and very complicated and your records prove chronic late stage Lyme is real”. I hear the sickest and complicated thing a lot in doctors offices, they never know how to treat me or where to start due to so many conflicting illnesses. 

I have been spiking higher fevers later into the night and soaking my pillow even more. I get the fever every evening everyday. Lyme fevers I guess. Not sure which illness to blame. I have been passing out and having chest pain daily. It is some costcodosis with soreness in the ribs but also feels like my chest is inflamed. I can barely walk down the stairs to get a sandwich on floor one without having to lay down and go back upstairs to my apartment. I’m very weak but my dad should be coming soon to help me pack and move. My parents just moved and got a new house so they have no spare money to help me. My cousin was nice enough to lend my dad her flyer miles. Bless her heart. 

Quick Update 

1 Jun

Since Sunmer is nearly here the weather has been 80-90’s here on the East Coast which seems like nothing coming from California where we get 115 degrees for weeks but the humidity is bad here. So it’s a swampy, sticky, sweaty heat versus the dry Cali heat. Plus there is no Delta Breeze. 

I have been overheating as usual. My body doesn’t regulate temperature very well so I always overheat during weather above 60 degrees. I can sweat in the snow. I constantly sweat and soak my clothes, couch, my bed…etc. I will take a cold shower and step out sweating. One doctor said I had a genetic disorder where I can’t retain fluids, I dehydrate easy and I overheat. My body core temp is average 94-95 so it’s weird I overheat. 

I have been drinking a lot of water, electrolytes and I don’t leave the house. The sun is my enemy. The sun makes me feel sicker, more fatigued, nauseous and I pass out sleeping in sun light. My skin burns easy. Lupus and the sun don’t mix. I don’t have air conditioning here and can’t afford to run a fan all day. But I’m hoping to get enough energy to pack and move back to California with my parents if the landlord will let me break my lease. 

I’ve been feeling sicker and my current Lyme antibiotics aren’t doing anything. I feel no relief from anything. I’ve tried diets, herbal protocols, injections, Picc line, IV antibiotics, oral antibiotics, homeopathic, LDI, supplements….blah blah. Trying to stay positive but going on 33 years with Lyme and co’s. I hope one day to find something successful that will give me even a little bit of relief. But even if the Lyme starts to progress my body and other illnesses are all beyond repair or incurable so I have that to deal with. 

My heart is still broken and I miss her even though she’s being very difficult. I thought we were getting married and living together but I guess she had other plans or is lost. I’m still alone with no human contact and taking care of myself. But hope to be back with my patents by August. They just moved to a new city so I will be starting over. 

Wish I had better news for you all. It’s too hot so I can barely think. I will try to update soon when I see my first east coast LLMD for the first time June 22nd. We will see what she puts me on. 

Keep up the fight everyone!! I know many who caught Lyme early who are back to a normal life. The key is catching it early. But for those like me who caught it way too late, we won’t give up!