Back Home In California – LDI 

7 Sep


My dad flew in from California to Connecticut two weeks ago to pick me up and help drive me back home. I had to leave behind all of my 7 month old furniture that cost me $1800 because nobody could find a mover to come get it on the Offer Up app. I had at least 14 offers all way lower than I hoped for ($400 was the highest) and I threw in a ton of free stuff and still couldn’t find anyone to take the furniture. I had to leave behind at least $2100 in stuff. It really hurt but I had no room in my compact car. 

My dad and I drove the I-80 route. Most states were full of corn fields. On the ride back we were able to stop in Canton, Ohio to see the NFL Hall of Fame since we are both huge football fans. We knocked the drive across the country and visit to the Hall of Fame of our bucket lists. Most of the states were flat and boring. I really like upper NY and PA the best on the way back out of all the states we drive through. We ate at a really good restaurant in PA called Overboards. Had a nice seafood pasta primavera dish. There was a NASCAR race in one state I think PA so the hotel rooms were all booked for miles and they charged us $175 a night for a cheap old room. 

I’ve always wanted to see Salt Lake City, Utah since I was a kid. I thought it was mountains, pine trees and a big beatiful lake to fish on. Boy was I wrong! The freeway system there was old and confusing. Then the Salt Lake was just that, a lake full of salt. It’s a salt flat as far as the eye can see for miles and miles. The lake in inhabitable by fish or wildlife. The area was flat and no trees. I couldn’t wait to get out of the salt flats that seemed to extend through Wyoming and Nevada. 

We made it home in 5 days. I am now safe and in the care of my parents again. I am also back with my little 4 year old niece who lives with us. She’s my little buddy. I tried to move to CT to prove that I wanted to marry my girlfriend and settle down with her but she admitted she was scared, got cold feet and pushed me away the day I got there. I saw her one time in 7 months. You never know unless you try. I thought I was finally going to start my future but I guess it wasn’t my time. Time to restart my life. 

I took another LDI dose right before I moved and it calmed my immune system from attacking itself for about 6 days and wore off. But I did feel a slight difference and calm inside. Now I am back to being in severe pain and feeling my usual horrible self. I’m hoping to get ketamine infusions soon and I’m going to see a new Lyme doctor soon. 
I hope you all are hanging in there and not giving up! Don’t let Lyme get the best of you. 

Lyme And Reason Fox5 Report 

1 Jul

Fox5 in NY did a piece on Lyme disease. Click the link to watch the video. 

http://www.fox5ny.com/lyme-disease

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! 

Quick Update 

2 Apr

  

I’m not in a good place in my life physically, mentally and emotionally. The girl I moved here to live with decided she can’t do this so she had someone else text me and tell me “it’s over and to leave her alone now”. Who the hell does that? She’s too afraid to face me and tell me or give me a chance. I don’t want to talk about it but that’s the just of it.

I’ve been sicker and need to be in the hospital but have nobody to drive me. I can barely walk, shaky, fevers, brain hurts worse…. Not sure if it’s the Mepron. I never had trouble with Mepron in the past. I’ve been sleeping a lot and trying to take my mind off things. 

Hang in there guys/gals we will do this. Nothing will stop us! 

Easy Chicken & Beef Gravy With More Flavor 

21 Mar

  

Chicken/Beef Gravy 

Simple recipe called for 

2 tbs butter 

2 tbs flour 

1 cup chicken broth 

I like to tweak things and try different things to my taste. So I added a few things and it gave the quick gravy a kick of flavor. 


2 tbs Butter 

2 tbs Flour 

1/2 cup chicken stock 

1/2 beef stock 

2 tbs of sour cream (or heavy cream) 

1/4 small yellow onion minced 

1 small clove of garlic minced 

Salt 

Pepper 

In a heated sauce pan add the minced onion and garlic and use a wooden spoon to stir around for a few minutes. Add the butter to the pan and scrape the flavor off the bottom of the pan and mix in with the butter. Cook a few minutes until butter is bubbling (don’t let it brown), now add the flour. Cook a few more minutes until the rue starts to turn a light brown color. Add some salt and pepper. Now add the chicken and beef broth and sour cream and let the mixture start to bubble. Turn down the heat and let the gravy simmer until it thickens and turns a nice light brown color. 

With my illnesses and the pain I’m in I wish I could be more precise but it did turn pretty good and more flavor than the simple recipe I always use. I used the gravy over homemade garlic mashed potatoes. Good luck 

I Collapsed & Hit My Head & C-Spine 

17 Mar

  

(Not me in picture, stock photo) 

Over a week ago I was doing my routine when I am able to leave my house or have energy and went to mail a letter down the street and grab a steak sandwich at the deli on the first floor of my apartment. My heart has been acting up and my POTS. I walked maybe a half block to the mailbox. I arrived at the deli/store and ordered my usual sandwich the lady makes for me when I can’t cook my own food. All of the sudden I felt cold sweat, tingling in my arms so I sat on the ground. My arms got really numb, sweat turned hot, legs were tingling, & started to get tunnel vision. People walking by said “you don’t look good are you okay” but I couldn’t really answer them or make a sentence. 

I laid down on the dirty floor for a minute because with my POTS sitting doesn’t help I need to be in the fetal position. The lady said I looked “dead” so I looked into my phone camera and I was pale white with no color at all and black under my eyes I did look like a corpse. After 15 minutes my sandwich was ready and I felt just a bit better. I stood up to pay for my food and handed the lady a $20 (I hope) next thing I remember I heard a loud “THUMP”, and heard a lady screaming “omg I call 911 you not okay” and I woke up a minute later with candy laying all over me and my head against the wall and body flat on the floor. Clerk said I hit my head and neck on the fall when I passed out. 

There was a time where I used to set off my PulseOx alarm daily and would pass out every time I stood up when I lived with my parents so I’m used to this. But normally I would fall on carpet or catch myself before I collapsed fully. This time I hit full on into metal, glass and tile flooring. My neck was killing me after the fall and is still sore. I have many ruptured discs, bulging discs in my neck. My neuro surgeon warned me never ever go on roller coaster, horseback , jet skis…..anything where I can jar my neck because I’m close to being paralysed or a quadrapelgic if I hit my neck just right. I have spinal stenosis, DDD, pinched nerves, disc issues, cysts, my spine is messed up from top to bottom and my spinal cord is being squeezed. So I was lucky I didn’t hurt myself too bad. 

I refused to ambulance because the ER wouldn’t have taken care of me and just sent me home like always. They always say my temp & vitals are the worst they ever seen but then send me home after one bad of saline even though I tell them I don’t feel any better and need to stay. After the hit I might have got another concussion because I slept for three days. My CFS was worse so I’m sleeping 16 hour days and not eating much. I have nobody to take care of me but myself right now and I’m not getting IVIG anymore. Everything is going wrong like my usual luck. I’m waiting for better days or for life to be nice to me. 

As far as my Lyme I’m taking antibiotics and starting back on Mepron for Babesia. My Lyme has been flaring and with my auto-immune and other issues I do feel like I’m dying again. I’m relaxing and resting on the couch all I can and watching tv. I don’t leave the house unless it’s for laundry or quick groceries. I hope my girl stops with the cold feet and will help me out soon. 
Hope you all are hanging in there! Let’s try to keep hope alive