I found a use for my POTS. I had the hiccups for a long time last night and I when I went to walk to my room, I passed out by my bed (dropped my ipad) and when I came to, my hiccups were gone! Yay!? My POTS is really active again and I have been passing out more frequently lately. I burnt my fingers the other night when I passed out and grabbed a hot pan to catch myself from falling.
Thank you for all of the comments and emails lately but I do want to apologize I haven’t been able to respond to many of them. I have been getting worse. My brain pressure is getting worse, my cognitive problems are worse. My memory has been much worse. So the lyme is really active in my brain again, I started taking minocycline again just to calm the lyme in my brain. I will be having my first Ketamine infusion ($650 OOP per infusion covered by Medicare) in a few weeks and a follow up with my LLMD to tell her that there is no progress on the Buhner protocol or other meds.
I received my immune blood work back and after 7-8 months of IVIG my immune subclasses have gone up a few points so that is good but still very slowly going up. The immune numbers can fluctuate on their own though. So my PID is not progressing as well as I was hoping but baby steps are good enough for me. I will most likely be taking a break from the IVIG since I get bad reactions/allergic reaction to almost every infusion and due to the cost ($500 OOP per infusion).
I will be taking it easy and focusing on my art to distract me from all of the extra pains so I will not be on the computer much to reply. I’ve had chronic pain almost half of my life but lately the morphine and other pain meds aren’t’ taking the edge off. I hope you all are finding some answers, healing and having better days. Never give up!
What My Days/Nights Look Like
Here is my brief but true day in the life of Bryan (Lyme Inside).
- Wake up around 5-6pm
- Take my “wake up meds”
- Go to the living room and sit in my recliner
- Eat dinner
- Take “after dinner meds”
- Watch TV and get on social media or text back friends
- Take “nightly meds”
- Go back to bed and watch more TV, take more meds then hopefully fall asleep (sometimes I sleep 30 min to 2 hours)
- That’s pretty much it. I rarely leave the house maybe once a month for doctor appts and to get meds.
For my newer followers; I have been disabled since 2009 and haven’t driven a car in 5 years. Lost my good job due to being bedridden and went bankrupt 5 years ago. I have been in a wheelchair but currently and thankfully I can still walk. I get sicker in the sun so I stay
indoors and don’t go in the backyard much to see nature. I have very little human interaction in person mostly from the fact I will get ill from someone since my immune is so low and I feel sicker when there is too much noise and stuff going on. I have been treating my chronic late-stage lyme for 3 years and tried almost everything except stem cell or highly-expensive treatments. I was misdiagnosed for 28 years and my Lyme and co’s are 31 years old as of May. I have not progressed much and still have hundreds of symptoms. I have seen numerous well-known lyme literate doctors including LLMD, holistic, nature-path, specialists and PCP’s. I have many other illnesses and my spine is a mess due to lyme. But over the years I have learned not to take anything for granted and enjoy the little things in life. I use my illnesses to try to educate others and inspire others going through their own battles. Life is short so try your best to smile even through all the madness and pain. One day the truth about lyme will open the worlds eyes and maybe we can get some better treatment and be treated better at doctor offices.
I think this is month 7 or 8 (? lost track) of my IVIG Gammagard Infusions. This is human plasma which is for my primary immunodeficiency (PID) in hopes it will boost my immune system since I was born without one or a very weak immune system I have had all my life. Most lymies have a secondary immunodeficiency caused by lyme itself or other illnesses. I had a very weak immune as a kid which allowed the tick bites/lyme and coinfections to enter my body and take over all these years. Most lymies may have a strong immune system but at the time they were bit their immune was compromised by maybe an illness which allowed them to get lyme also. My immune numbers are very low right now so I am hoping they do not drop any lower where I need to be in isolation for months, years.
On Wednesday I had my full dose IVIG infusion with my home nurse. Everything went fine this time, no collapsed veins or any extra needle pokes. I took all my pre-infusion meds which seem to help. I have had very severe reactions from the infusions and this last month the bad reaction came the next day, which will be tonight so I am keeping my fingers crossed I don’t wake up with the bad reaction again, it is very painful and scary. The severe reaction causes my brain to swell and I can’t move at all, talk, think, read and I can’t text my mom to tell her I need help. My brain will hurt so bad, a lot of extra body pain, fever, chills and all I can do is lay in my bed trying to catch my breath and crying. Last night after the infusion I fell asleep early for once and slept pretty good but I soaked my bed more than usual in sweat and felt very spacey. I am waiting on my test results to see if my numbers have gone up or down since the infusions. Staying positive and hoping for better days! C’mon immune we can do this!
Pill Pile (with my cat Zoey)
I was looking through my old pictures and saw this one I posted March of 2013. This pile was a little over a year of mostly all Lyme meds (minus my huge cabinet full of IV stuff) that was in my closet I collected but I threw it all away. This is pills, herbals, injections and stuff like that. Probably 98% of these are empty so most of my daily meds were not in the picture. I literally have a home pharmacy and everything the ER has I most likely have it too. The ER is very unhelpful as many of you know so even when I feel like I am dying I will just rough it and stay home to avoid the medical bills and feeling humiliated at the hospital. This past month I have been crying in pain a lot more than usual and I am a pretty pain tolerant guy although I have severe chronic pain for the past 15+ years. I like to share this picture so those who think Lyme is curable or an easy fix can see the reality of it.
Keep your thoughts positive and keep on fighting for those better days. We can do this we just have to believe in ourselves and our bodies. Don’t ever give up, life is a beautiful thing.
Beyond The Headlines – Lyme Disease Segment
Here is the link to watch the segment (video) in case you missed it: CLICK HERE FOR VIDEO
I won’t go into too many details since I am still having a rough time but I wanted to share. ‘Beyond The Headlines’ aired today with two different stories of lyme disease sufferers. The segment featured author Amy Tan and Dr. Stricker (SF LLMD). It was on KGO Channel 7 and they did a fairly decent job of getting the fact that lyme is not curable but only goes in to remission. A lot of people think lyme can be 100% “cured” and I hate to give them false hopes. Amy Tan talked about how she is feeling much better with Dr. Stricker’s help (which is a pretty popular story on the Internet for years) and she is able to read, write and function better yet she still cannot drive. Amy spoke about what we lymies go through like seeing 20+ doctors and getting different diagnoses or false reading on lyme testing. Stricker talked about ticks and lyme. There was also a story on two siblings who suffer from lyme and were/are bedridden but one is doing better after 3 rounds of stem cell treatment in India. I was supposed to see Stricker after Dr. H but I never did. I can’t find a link to the show so I hope it will air again or surface on YouTube.
Website link just in case the hyperlink doesn’t work above: http://abc7news.com/health/beyond-the-headlines-lyme-disease/242626/
Update On Myself:
I have been feeling much sicker and more pain that the pain meds don’t seem to be helping much (120mg of morphine, norco..etc). I have avoided going to the hospital the last couple of days. I am fortunate enough that I have all he same stuff the hospital has here at home. The ER never helps me or knows what to do anyway so I just stayed home crying a lot but I wish I was in the hospital sometimes or had a full-time nurse. I used to be tolerant to pain so it takes a lot for me to want to go to the ER or cry (extra severe). Lyme can get so much worse than you think and you can become bedridden and can no longer take care of yourself if you are not diagnosed and treated within so many years after being bit. Just when you think it can’t get any worse it does, that’s my advice to those who can still function pretty well with lyme and ask me why I can’t work or drive.
Keep up the fight! WE have no other choice but to keep on fighting for a better way of life. Stay strong.