Fox5 in NY did a piece on Lyme disease. Click the link to watch the video.
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.
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!
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!
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
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
(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
Here is a quick update on me and why I’ve been so quiet.
So for those that follow me you know that I’ve recently moved from the west coast to the east coast to live with my girlfriend I’ve been on and off with for four years. She had renal failure a while back and asked me to move here to be with here so we could spend our days together. She picked out our apartment and was so excited to live together and diet together. Everything was finally going my way for the first time in my life. I don’t ask for much, just love. I don’t mind living disabled for life as long as I get married and have a chance to have a family. That’s all I’ve ever wanted to be happy.
On the 5 day car ride here my girlfriend posted she was “single” on her social media. The closer I got she ran away, she got cold feet. I went to see here the second day I arrived and it freaked her out I went to her work to bring her a bagel she asked me to get her. It made no sense but she told me not to surprise her or come to her work and respect her boundaries. She told me she needed time. A month later she invites me to lunch. We had a good lunch and she said all the things I wanted to hear but again said she “needs time to think”. She said “we will move in together, we will be a couple and do things together, I will stay the night soon…”. Then the next day she asked me to open up and tell her things and if I did then she would open up. She asked how I felt about her, I told her she was the most beautiful girl I’ve ever met and I would have never moved this far if I didn’t truly love her…..just nice normal things. She stopped talking to me. For weeks no reply to texts.
I collapsed at the store below my apartment (I will post about that next) and I told her and she didn’t reply. I feel alone and just want some answers of why she is treating me this way after I left everything and everyone I love behind, renting an apartment I don’t need, leasing a car I don’t need or drive, I’m broke and used up all my life savings for her. So I asked her to come over one night to talk and she said “I can’t” yet she’s had plenty of time to hang out with friends. So I got fed up and went to her work, she first had a co-worker lie and say she wasn’t there then I saw her and she told me she was too busy to talk. So I sat at her work for three hours hoping she would come over on her break or give in and say hi. Nope, she clocked out and snuck out the back door and left me sitting there like a fool. Then she blocked me on text so I have no way to contact her. She said I crossed into her personal space and crossed the boundaries going to her work so she’s mad at me.
She doesn’t get all that I went through just for her. The packing, the passing out, left all my doctors and can no longer find a doctor to get my meds so far, paying rent and a car lease when I was fine living with my parents and not driving…. I didn’t have to do all of this but I did it to show her someone believes in her and loves her. She’s had a rough life and was hurt by a lot of people she trusted, beat childhood cancer, she’s very sick but works hard everyday and wears her body down…… I thought she wanted someone who sees what a good person she can be. But when she’s pushing me away she really knows how to hurt and make me feel alone. She makes me feel like I’m a bad guy for wanting to take care of her, love her, want to see her..etc. most girls wish they had a nice guy and she has one but doesn’t want to talk.
I don’t want to give up on her but she doesn’t make it very easy. I’m sicker, laying in bed or on the couch sleeping 16 hours a day and have nobody here to help me. If she would just talk and tell me what she wants. If I try to leave she won’t let me but if I want to talk she is quiet and needs time. I hope she will talk soon and realize that love is not as scary as she thinks it is. I know this is a big step in her life but it was a big step in mine too. You can’t run away or leave someone at the alter and think that is okay. Communication is always the way to go.
Sorry I had to vent so you know that I’m in a dark place right now.