Quick Update

23 Aug

ivig picQuick Update

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!

 

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What My Days/Nights Look Like

8 Aug

1746-custom-ribbon-magnet-sticker-lyme+disease

What My Days/Nights Look Like

Here is my brief but true day in the life of Bryan (Lyme Inside).

  1. Wake up around 5-6pm
  2. Take my “wake up meds”
  3. Go to the living room and sit in my recliner
  4. Eat dinner
  5. Take “after dinner meds”
  6. Watch TV and get on social media or text back friends
  7. Take “nightly meds”
  8. Go back to bed and watch more TV, take more meds then hopefully fall asleep (sometimes I sleep 30 min to 2 hours)
  9. 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.

 

 

 

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Had My IVIG Infusion On Wednesday

8 Aug

ivig pic

 

IVIG Infusion

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.

 

pill pile

 

 

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.

 

 

 

 

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Lyme Segment On KGO Channel 7 With Amy Tan & Dr. Stricker (Updated W/ Link To Video)

4 Aug

amy tan

 

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.

 

 

 

 

 

 

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Sleep, Insomnia, Muscle Relaxers & Immediate Action Needed By You

29 Jul

sleep

Sleep, Insomnia, Muscle Relaxers 

I have been living with insomnia since I was a teenager in school.  As I got sicker it became worse. I have tried all the sleep aids RX and OTC, and many other meds, supps or herbals for sleep. I found that Trazadone worked okay but it made me groggy and I had to almost overdose for it to work. Ambien and all those pills did nothing. Melotonin didn’t help. Trust me I tried everything lol. What has been working for me though is a pill given to me for spinal stenosis which is Flexeril (Cyclobenzaprine). I have many different muscle relaxers and those others actually keep me awake such as Baclofen. My insurance stopped covering Flexeril so they gave me other muscle relaxers but only certain ones are designed for spinal stenosis help.

I usually take 1-2 pills of 10mg Flexeril with a lot of water about 30 minutes before bed. For me I am tolerant to most meds so I don’t get the high or get sleepy or anything from pain killers or other meds. I feel no difference except maybe a little dizzy from flexeril. I find it helps me sleep for hours versus minutes. I usually toss and turn and stare at the ceiling every night. I usually fall asleep around 8am and sleep during the day. I used to sleep maybe 30 minutes to 2 hours a day if that. With flexeril I sleep maybe 2 solid hours of REM sleep and 4 hours of tossing and turning sleep. When I am exhausted from a long day of being car sick going to doctor appt and I take a flexeril that night and I can sleep for 12 hours. Car rides make me jet-lagged and it takes days to recoup.

Every body, person is different so maybe the baclofen may help you sleep better than the flexeril so you may want to try different muscle relaxers before you give up on them. My body seems to like Norco for break-through pain but I feel nothing from percocet, oxy…etc. Where others prefer percocet over Norco…. so we are all different. Muscle relaxers will also help calm your muscle spasms and twitches during the night. Sometimes they don’t work but they are the only form of sleep aid I have had any success with and some s better than none. Good luck with them if you try them.

 

Immediate Action Needed By You The Lyme Sufferers

 

From Phyllis at lymedisease.org -

“This is the chance we’ve been waiting for, folks, for about 15 years. This bill finally gives patients a seat at the table. No more smoke-filled back rooms, but daylight and a voice for patients. It won’t solve all our problems but is a big step forward. The committee will be doing final markup on Tuesday (today) and Wednesday. “

Go to the website below for phone numbers. Make your call ASAP. It’s important that everyone do this. The bottom line is we want

“HR 4701, July 23 version, with NO amendments.”

 

CLICK HERE  to do your part

 

 

 

 

 

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Warning: If You Are Taking IV Ceftriaxone (Rocephin) Always Take Actigall

25 Jul

actigall-2

Warning: If You Are Taking IV Ceftriaxone (Rocephin) Always Take Actigall

I cannot stress this enough that if you are treating with infusions of Ceftriaxone (Rocephin) then make sure your doctor has you on Ursodiol (Actigall) with it. Your doctor will forget to tell you or give you some other product that usually doesn’t work. The reason you will need actigall with the rocephin is due to getting gall stones or losing your gallbladder most likely. I am no longer on rocephin infusions I did them a few years ago but not long enough to do damage that I know of.

I did my own studies on this subject and over the past 5 years I always saw other lymies saying “I just had my gallbladder taken out after being on IV rocephin”. I don’t mean one or two people but pretty much 80% of everyone that I saw/read who has been on infusions of rocephin. Most say the doctor neglected to give them actigall or gave them bull bile instead which isn’t as effective.

I posted on this maybe 2 years ago or three? Who knows when it was but I still stand by it no matter what studies may say. If you are given rocephin infusions ake sure you ask or remind your doctor you for sure need actigall (if your body can handle it). I hope this post will help somebody out there and spread awareness again. I hate seeing fellow spoonies suffer more than they should or being neglected.

 

Keep on swimming……

JustKeepSwimming

 

 

 

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Memory Loss & Chronic Severe Pain Getting Worse

24 Jul

memory-puzzle

 

Memory Loss

One of the first signs that made me think I had Lyme disease was memory loss. I have both long-term and short-term memory loss for about 5+ years now. I take mangosteen, memory tonic, supplements and much more to help me with this issue but nothing seems to help.

My short-term memory seems to be getting worse. I always take notes in my phone for simple tasks or things people do and take for granted to remind myself what to do and when. I will email myself to re-remind me and still forget. I have been wanted to ask my mom for razor blades fr my shaving razor and everyday I forgot to ask her for bout a week even with notes and reminders.

My friend and I send songs to each other and I keep sending the same songs and then I feel bad I always repeat myself. But it feels new to me like I have never talked about it or heard the song before. I just hope this doesn’t last for life and I get Alzheimer’s or dementia early on in life. I hope this may help someone with lyme who is wondering if memory loss is related and may be scared. I cannot remember most of my life and I will forget what I did the day before or even had for dinner. But recently it just seems to me I will forget I forgot was I was forgetting.

 

 

Neuropathic-Pain

 

Chronic Severe Pain

I have been dealing with pain my whole life. I always thought everyone felt as crappy as I did and it was part of life and growing. When I was 20 years old I was told I had arthritis and chronic pain. The pain back then was mostly in my knees and hips. As lyme caused Fibromyalgia and other medical issues the pain was in my shoulder blades, neck, back, ankles…. etc. As I got sicker and bedridden 5 years ago the pain was from the bottom of my feet to the top of my head. It is a combination of muscle, bone, joint and nerve pain where some lymies will only have one or the other so every case of lyme is different and difficult to detect if you have it.

I have been on pain killers for about 20 years. I have tried every pill, liquid, patches, injections, infusions so right now I am out of options for pain meds. I still am waiting to get Ketamine and be knocked completely out that’s my last hope but I hear it only helps for the first 2-3 infusions. I am currently taking 150mg of Morphine (MS-Contin) per day, 40mg of Norco, medical marijuana, anti-inflammatory, senega root, and much more. They all help to take the edge off the pain but some nights they don’t touch the pain so I sit and try not to cry too much. You can’t even concentrate, hold a conversation, watch TV… or anything with severe pain.

Lately my pain seems to be getting worse and the last couple nights I was trying not to cry in front of my parents while watching tv with them. My dad will get upset if he talks to me and I don’t seem into his story but it’s hard to listen, comprehend or reply when you are overwhelmed in pain. I tried upping my senega root dose and one extra norco but it doesn’t seem to be helping. With my GP and digestive issues, IBS, I hate to switch pain killers since the cause back-up and constipation. I had some very horrible experiences with being backed-up too long and almost passing out on the toilet. Hoping I can try ketamine one day but one place wants way too much and the others won’t do ketamine for outsiders. My LLMD office should have it soon.

 

**Although everything may be dark and you see no light at the end of the tunnel, just keep your sails full and keep on going. We always have hope. Try to inspire someone today and make someone smile then you may smile seeing them happy. Have a much better day chronic illness family.

 

 

 

 

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