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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13 Responses to “My Chronic Lyme Disease Symptoms (Updated)”

  1. Mary May 6, 2014 at 7:07 pm #

    I have much of the same and worse. What I might suggest is that you get a prolactin test done also, to rule out a pituitary tumour. Your damage might be more from the SV40 polio shot in the late 1950’s and early 1960’s than by Lyme

    • 49er Bryan May 6, 2014 at 11:35 pm #

      My mom was born in the 50’s so I wasn’t around at that time ha ha. I was thought to have a tumor in my brain 3 years ago but we ruled that out after scans. It’s just a combo of my lupus, lmye, cfs, thyroid issues….etc I guess.

  2. ssmith2173@kc.rr.com May 6, 2014 at 8:01 pm #

    Bryan, remember we all LOVE YOU………Never forget that……..Thankyou for the update and will be praying on and on and on…………Your Friend,,,,,,,,,,,Sherry xo 🙂

    • 49er Bryan May 6, 2014 at 11:35 pm #

      Thank you and prayers and hugs back to you. Stay strong. xx

  3. Christine May 7, 2014 at 6:13 am #

    While I hate the fact that you’re suffering so much, I really appreciate the fact that you took the time to post all of these specific symptoms. I can relate to so many of them, and it makes me feel just a little bit less crazy. Again, thank you

  4. Brian May 7, 2014 at 11:50 am #

    Shame on fellow Lymies for criticizing you for not working. I have been unemployed for several months now and I also receive criticism from those who have no idea what it is like to be chronically ill 24/7/365, and to make matters worse even doctors insult you for having a complex problem.

  5. Brian May 7, 2014 at 12:25 pm #

    I read the other day that the sickest of all Lyme patients are infected with mycoplasma fermentans (Gulf War Syndrome) for which experts recommend years of abx. Bryan, did you raise your core body temperature with Wilson’s protocol?

  6. don mau May 16, 2014 at 2:43 pm #

    ABX doesn’t have the ability to remove Bartonella.

    http://www.lyme-morgellons.com/bartonella.html

  7. Dana May 21, 2014 at 8:51 pm #

    Brian as always thank you for sharing. You are stronger than you know never give up😎
    I am so sorry you are going through all of this😝. (((HUGS)))

    • 49er Bryan May 24, 2014 at 12:06 am #

      Thank you, and right back at you. Keep up the fight hugs

  8. Jennifer May 22, 2014 at 6:00 pm #

    I’ve just discovered your site, and your story and symptoms sound way too familiar. I was first infected we assume around age 4/5 in the Midwest Ozarks, in 1981, when Lyme barely had a name. I had tick bites regularly in the summer visiting my grandparents there, but they were a part of life. I started small with symptoms, but always had something that I was too young to have. I hate that phrase, especially from a doctor. Their ignorant in front of the patient is unprofessional. But at least it’s easy to see one who knows nothing about the disease.

    I’ve now finally been in treatment for a year with an LLMD, after 30 years of it sitting in the background of all of my pain. At 37, I’ve been in bed for 2.5 years since before my hysterectomy (2/12) set off the “little flare that could”. I think it was the cross country move later that year that pushed me over into the worst pain of my life. I finally found an amazing LLMD in Seattle, and we’re struggling through my treatment plan too. Drug allergies,etc. I’m up for my SSDI trial soon, and I only hope they will see that working is impossible, and with an out of pocket doc…it’s a double hit.

    The only difference is, I’m coordinating this with a full time working husband and a 4.5 year old in preschool. It has really been a heartbreaking experience to mother from bed. Not that I struggle more, just a different set of weights.

    Keep up the fight! I wish Lyme weren’t so exhausting, or we could all rise up and tell our stories, raise money for research, raise awareness. We need a damn ribbon.

    Keep well!

    • 49er Bryan May 24, 2014 at 12:05 am #

      I’m not feeling so well but I read this and send you healing hugs. Thank you

    • Brian May 25, 2014 at 8:03 pm #

      Jennifer, nice reading your post. I’m also seeing a LLND in Seattle. I would be curious as to who you are seeing. Has been difficult, sick in excess of a decade. About two weeks ago I went from bad to worse with a c diff infection, doing better now. Might be starting bicillin soon. Small dose Vitamin B complex has been very helpful for sleep, brain fog.

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