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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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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

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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

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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

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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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Update: Sicker, More Pain & IVIG

1 Jul

pain site 2

 

Update: Sicker, More Pain & IVIG

Just a quick update. I know I have been quiet for a while. I have been feeling sicker the last few weeks. We upped my dose of Morphine to 75mg 2 to 3 times a day but the pain is feeling worse lately not sure why. I am still taking my usual Norco, many anti-inflammatories, and other herbal pain killers. I also added senaga root which is supposed to help with pain. It is the severe, sharp, nagging, non-stop pain from head to toe in my muscles, nerves, bones, joints…etc in every inch of my body. I know it’s not just the lyme and co’s it might be my other illnesses or chronic pain/arthritis acting up. It makes me so stiff I can barley walk. My right hip also still has that weird severe pain where it almost feels like I fractured my hip/leg bone from my hip joint to the knee cap. I have had broken/fractured bones before so it feels similar.

A lot of bad news and negative things happening lately so I am trying my best to stay positive. Even the blood lab called and said they left the fridge open and my blood vial was ruined so I need to go back. Last blood draw I passed out and had collapsed veins so it’s hard to find a good day where I am kind of hydrated to take the blood test. Had to go get my RX and my MMJ in another city so I actually left the house for once and had lunch and ice cream that day. I was feeling very weird at the restaurant though and wanted to puke and pass out.  But I had fun and enjoyed the little things. I know someone always has it worse so I don’t like to complain. I just feel like I try to do everything right and life takes everything I like or need away from me.

I have been very dehydrated still yet sweating at night soaking my bed. I am taking concentrated electrolytes, trace minerals (rehydrate), drink lots of water, tea and kombucha. Just can’t seem to not be thirsty and I have a drink in my hand constantly even when sleeping I will wake up every 15 min for a drink. Even with all the pain and passing out…etc. I always try to work out each day even if it’s for a minute. I sit down on my bike and use it for a few minutes until I am ready to pass out or puke. It tales a long time to get oxygen and catch my breathe but at least it will keep my leg muscles from getting to weak. I also lift light 15lbs bar bells. No matter how hard it may be try to get some physical activity in your day.

Getting my IVIG either today or Wednesday depending if the meds show up on my porch today and my nurse can make it. It should go fine, I haven’t had too much trouble with them lately.

 

 

Sending all my best to all my fellow warriors and may better days come. Stay strong and keep swimming…………

 

 

 

 

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My Chronic Lyme Disease Symptoms (Updated)

6 May

lyme_neuro_table

 

My Chronic Lyme Disease Symptoms (Updated)

I get asked a lot about how long I have had lyme and what are my symptoms. I don’t like answering this question because there are too many symptoms to list and I forget what most of them are because I have been dealing with them so long I think they are “normal”. Below is a list I posted a couple years ago of a good majority of my symptoms from lyme and co’s but I know there are many symptoms missing.

There are times when other lymies who have one or two symptoms will ask me “why can’t you work, I can”  as if they think lyme is curable and only has a few symptoms but they have no idea how much worse lyme can get if untreated your whole life or once it is stage 3. This disease is a living hell and it is different for every person so it is hard to compare or give advice to others when we all have different battles with the same disease.

 

My daily chronic lyme disease symptoms:

**My pain from the bottom of my feet to the top of my head is daily (24/7) and severe (pain scale 10++) but most of my pain is caused from other illnesses or medical issues plus the lyme and co’s. Here’s an older list from last year. Some may repeat sorry. I know I left out many symptoms since there are 100′s but of course I am struggling to remember them all. Some of these may not even be symptoms but illnesses causing them.

 

Head, Face, Neck

  • Pressure in head (sometimes meningitis)
  • Headaches, mild to severe almost daily
  • Migraines up to 7 times per month (i’m lucky)
  • Twitching of facial muscles
  • Facial flushing
  • Stiff or painful neck (most of my pain starts here and radiates down)
  • Cracking in neck, herniated discs & cysts in spine caused by lyme
  • Sore throat, strep throat, hoarseness, runny nose, dry nose
  • Mouth sores, dry mouth, swollen tongue (rare)

Eyes/Vision

  • Double or blurry vision
  • Increased floating spots or floaters (bugs)
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light (daily)
  • Flashing lights/Peripheral waves/phantom images in corner of eyes
  • Sensitive to movement such as a movie will get me dizzy/nausea
  • Eyes burn or hurt where I can’t see phone screen or tv
  • I still have 20/18 vision somehow

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sound
  • Loud Ringing in both ears
  • Sound of blood rushing in head

Digestive and Excretory Systems

  • Diarrhea (IBS)
  • Constipation (sometimes severe TMI)
  • Vomiting after I eat (used to be daily until I started mmj)
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
  • Gastroparesis (illness not symptom but may be cause of some of these)
  • Stomach cramps/pain
  • Leaky Gut
  • Had C-Diff and a severe case of Candida

Musculoskeletal System

  • Severe bone pain, joint pain or swelling (bone pain is one of the worst for me)
  • Stiffness of all joints, back, neck…
  • Severe muscle pain or cramps
  • Twitching and spasms all over
  • Unexplained bruising
  • Charlie horse in muscles

Respiratory and Circulatory Systems

  • Shortness of breath, air hunger, cough, wheezing
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Tachycardia, bradycardia (rarely) POTS
  • Stinging in lungs after sneeze or cough
  • Low oxygen (have O2 machine)

Neurologic System

  • Tremors (since I was a kid) or sometimes severe shaking
  • Burning or stabbing sensations in the body
  • Nerve pain (mostly severe each day)
  • Weakness, peripheral neuropathy or partial paralysis
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness tippy, difficulty walking
  • Increased motion sickness
  • Lightheaded, wooziness

Psychological well-being

  • Irritability
  • Unusual depression
  • Disorientation (feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Never enough sleep or insomnia
  • Difficulty falling or staying asleep
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (very bad short and long term loss)
  • Confusion, difficulty thinking
  • Difficulty with concentration or reading
  • Loss of words or forgetting words
  • Dyslexia
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech, stuttering
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive

General Well-being

  • Malaise
  • Extremely sensitive to cold and heat in body and mouth (eating food)
  • Neck glands cause shocking pains
  • Phantom smells
  • Extreme fatigue
  • Unexplained weight gain/loss
  • Swollen neck glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Early on, experienced a “flu-like” illness, after which you have not since felt well.
  • Low temperature
  • Unable to walk
  • Arthritis flares and my bones get stiff or hard to move/flex
  • Out of body experiences
  • Exhaustion daily (never a day with energy in last  5 years)
  • Hot flashes
  • Chills
  • Sensitive to the sun (makes me feel sicker)
  • Sugar makes me feel worse
  • Hands hurt so bad I can no longer write with a pen or draw
  • Feeling like each day I am dying
  • Literally feel like I am 90 years old
  • Primary Immunodeficiency (no immune system)
  • Haven’t driven a car in 4 years due to symptoms
  • And many more I can’t remember……

 

If you name a lyme disease symptom I most likely have it. I just don’t have the genital pain like I see listed on lyme disease symptoms checker at my LLMD. I usually check mark every box on the symptoms sheet at the doctors (those who see an LLMD know the long symptoms list we have to fill out each time. I rarely leave the house usually only to get a prescription with my mom or go to a doctor appt. I have been bed ridden but now I am able to walk to the living room and lay in my chair or walk around the house. I lost the ability to walk and was in a wheelchair but I will not let Lyme beat me! I am planning a vacation so I hope to get out for the first time in years.

As for me I have had lyme basically my whole life and always thought everyone had the same pains and weird things going on in the body as I did. I didn’t start to get worse until maybe my teens and when I was 19-21 that is when everything started to snowball and get worse. Started with bad knees, arthritis, spinal stenosis, nearly died from elderly pneumonia and so on. I worked and went to college until I finally collapsed and could no longer keep up with the world 5 years ago when I became officially disabled. So if you have only a few symptoms and think it won’t get any worse it most certainly can. So treat your lyme as much as you can and as early as possible for a better chance of remission.

 

This all sounds depressing but we will all get through this and we will not let our illnesses define who we are. Never give up and never take your life or health for granted because you never know what can happen. Stay strong, love life and fight on!

 

 

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