Happy Holidays to you all!
I just wanted to take time to say thank you all for reading and commenting over the years. I wish I had more to share and things to be helpful but since I started this blog my brain has gotten worse and more pressure so I can’t write like I used to. I started this blog to share my story and to help others who are going through the same or may think they have Lyme, lupus, immunodeficiency, chronic illnesses…etc. I’ve seen a ton of doctors since starting this blog and I counted around 30+ doctors I have seen. 90% of them were not helpful or made my mom cry, were mean, kicked me out of their office….and all because they didn’t want to help me. I never provoked them or was mean to them, I only asked for help and was treated like a piece if trash. It’s a shame because I used to respect doctors. I currently found a doctor who truly cares about people.
During the holidays is always a sad time for me because we no longer have family gatherings anymore in a long time. Even if we did I’m too ill to leave the house to visit them. I’m not the same person I used to be. I don’t remember what feeling “Normal” is like or having energy, feeling excited, or having all those feeling like a healthy me once had. Lyme, Lupus, PI, CFS, heart issues, brain issues have ruined my life. I sit here every night trying my best night to cry in front of my niece or let her see how sick I really am. I don’t remember a day in 8 years without a fever, burning face, headache, head pressure, pain from head to toe and being so exhausted I can’t move.
I’m not looking forward to another tilt table test and puking and being dizzier than usual for days due to the test. I’m seeing my new cardiologist in a couple days. Might be DOIMG the stress test, heart monitor and more before Christmas. But I’m getting worse and nothing is stopping the Lyme. I don’t want to go back on IV antibiotics since it ruined my body last time. Had some very scary things happen that nobody should go through. For now I’m staying with my daily oral antibiotics for life.
Let’s just hope something breaks through for Lyme and health issues one day. Don’t give up hope. Try to enjoy your Christmas and never give up!
Had another brain MRI with GAD (dye/contrast) on Monday. I’ve had another concussion since my last brain MRI and CT scan and have been having those incoherent episodes and passing out I’ve been talking about. Last time they misdiagnosed a brain tumor, Parkinson’s and MS due to some Lyme lessons on my brain. I have a lot of brain pressure daily, short & long term memory loss, headaches, migraines and a lot of trouble with my brain so hopefully we find something.
I had a follow up visit with my primary Doctor last week. He was concerned of my long fainting, incoherent episodes. So I will be seeing a cardiologist in December for my heart issues, testing and monitoring my heart. I will be getting another brain MRI on Monday. If you follow me you know I had one years ago for a possible brain tumor and movement disorder. I will be getting tested for seizure testing and seeing a new neurologist since my old neuro and neuro surgeon aren’t in the area. I had more blood work and my cholesterol was high but doc thinks it’s hereditary since I don’t eat a lot of food of junk food.
I can’t remember all the testing but I will be also getting another tilt table test for my P.O.T.S. and it’s horrible. Last time I had that test I passed out which it was the test is for but I also puked the rest of the day and was more nauseated than normal. It really messes with my brain and makes me dizzy like an inner ear infection. I will also be getting a stress test but I cannot do the treadmill test since I’m barely able to walk as it is.so I’m not sure the other options. There was more testing but I cannot recall.
I lost another aunt today. It’s sad that my relatives are all passing away. Sometimes I fear I am dying and it’s hard to not think that when you feel so weak, tired and when I’m very ill.
When I have these fainting episodes that last a long time they are not like my pots passing out. With my pots I stand up, faint, wake up on the ground wondering how I got there, stand up and I’m fine. These other episodes I feel coming on slowly, my heart slows down (my heart hates being slow it’s always tachycardia), I start seeing tunnel vision, I hear people talking to me but the words are backwards so I can’t understand them, I can’t answer back, can’t move, hard to breathe, louder ringing in my ears, sound is like it is in a tin can and I can’t sit down I have to lay down right away or I pass out. I will lay where I’m at for a good 10-30 minutes before I finally start to feel a little better and words start sounding in English again. It’s scary and I feel like I’m dying. My doctor thinks it may be my heart or grand mal seizures. That’s what happened the day I fell and hit my head while in CT in the store below my apartment and I got a concussion and slept for three days with nobody to check on me.
I hope you all had a great thanksgiving and you find reasons to smile each day. If you stop and look around even on your worst day, life will give you something small but amazing to smile about. Take care my friends. Hope I can write more soon.
For many years now I’ve had trouble finding a Primary Doctor. My doctors I’ve had since I was a teen said they would no longer be my doctor because I was “too complicated” for them and they didn’t know how to help me. One doctor told me he was leaving me because he doesn’t like the fact I use medical marijuana. Every new a doctor appointment resulted in a failure. Most doctors told me they do not believe in Lyme disease or lupus and told me they will not be my doctor.
After a long search my mom found a primary doctor who believes in Lyme and secretly will help me. He doesn’t take new patients so I was lucky to know somebody. This doctor also wants to use life-long oral antibiotic pulsing on me since he knows my Lyme is resistant to all treatments and my body won’t allow healing due to my primary immunodeficicey.
My first visit was great! He is a very caring, compassionate doctor and I can tell he wants to help. He even said there was no need for me t travel so far to see my other Lyme doc or go to pain management that he will handle my RX for pain meds. He normally doesn’t prescribe pain meds I’m told so he did that just for me, what a great guy. He knows I’ve been on them since I was an early teen with arthritis and degenerative disc disease and bad knees.
It was such a relief to see him input all my illnesses in his records without questioning me or my previous doctors or test results/records. He kept saying “oh my gosh you have that as well you have so many bad things going on at once that’s horrible”. He was really nice and my mom and I nearly teared up when he left the room because we are used to being yelled at, belittled and sent home without a new doctor. So this was a first.
My mom is the best mother in the world, she’s always been there for me. While I was in Connecticut she found me a new Primary Care Doctor back here in California in my new city. Now that I’m back I was able to get an appointment to see a consultant who does a 2 hour interview to see if I qualify to be seen by this secret Lyme friendly PCP. I had the interview and showed the consultant my medical records and only gave a few minutes of my life story and illnesses and he said I was in for sure and he would set up an appoinemt with my new doctors.
This consultant goes to the doctor with me and explains my medical story for me so the doctor gets to know how ill I really am. Most PCPs only see you for 15 minutes and don’t have time to get to know your story or history. So the consultant works together with the doctor and knows everything about me. He’s a very kind guy and he is a bit like TV doctor House. He says he tries to look past all the symptoms, illnesses amd diagnoses and tries to find if anything was overlooked. Tries to put the big picture together. The consultant’s son died from Lyme disease in his sleep and his family all has CDC positive tests. So he knows how serious Lyme can be and the PCP does also that’s why he takes patients in secretly. I’m not supposed to ever mention Lyme while I’m at the medical building or PCP office.
The consultant knows all the big name LLMD’s and works with Lyme patients since he is a retired pharmacist. He said I will likely be pulsing a different antibiotic every 5 days on and 5 days off. He said my Lyme doesn’t respond to anything so therefore I will be on the maintenance dose of antibiotics for life most likely and there is not much doctors can do for me. I hear that from every Lyme doc so it’s nothing new. At least they are all on the same page. The reason my Lyme disease is so different is due to me being born with primaryimmunodeficicey. I have a very weak immune so I’m unable to heal from surgery or treatments like other Lyme patients would. I have so many different immune illnesses they all fight each other and my body is always at war.
I’m seeing a new pain management doctor Tuesday. I have my doctors at UCSF already but in order to get pain meds in a new city or from a new PCP I have to see his pain management referral. That way I can do my bi-monthly face to face and get prescribed my pain meds on time. Currently I have to drive 3 hours one way to get my pain meds filled from my LLMD. So my new PCP right here in my city will hopefully fill my RX as needed once I see the pain doc. I’m supposed to be on ketamine infusions but nobody seems to do them in this area or except new patients. I’m literally out of pain Med options and on the last resorts.
That’s my update for now. It’s good to be back home with human interaction, my parents and my baby niece to cheer me up. I hope you all are finding much better days in your journey. Keep hanging in there.
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.
Fox5 in NY did a piece on Lyme disease. Click the link to watch the video.