More Testing, New Doctors, Seizures? 

29 Nov

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 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. 

I Finally Have A PCP – First Visit Went Well 

29 Oct

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. 

New Lyme Friendly Primary Doctor 

30 Sep

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. 

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.

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!