Friday, August 14, 2009

Byte of Lyme: My Body's a Host to a Spirochete

What is Lyme Disease?

Um, it's a disease you get from being bit by ticks - ???

What does it do to you?

Messes up every body system you can think of - ???


I don't know.

The above questions are reasons why I decided to dedicate Thursdays (or Friday, in this case) to the research and knowledge of Lyme Disease. When people ask me questions about this disease, I don't have the answers and since I'm an information junkie, I decided it was about time I educated myself on this bacteria that I currently host in my own body.

To answer some of my scientific questions about Lyme Disease (LD) I'm going to refer to Dr. Scott Taylor's 2004 report on "LD: A Plague of Ignorance Regarding the Ignorance of a Plague."

What is Lyme Disease?
According to Taylor, it's a "seriously complex multi-system inflammatory disease that is triggered by the bacterial lipoprotiens (BLPs) produced by the spiral-shaped bacteria called Borrelia. Borrelia are difficult to isolate, grow and study in the laboratory" which is why there is limited technical knowledge of the bacteria. What studying has been of the bacteria has been conducted through clinical studies and observation.

What is Borrelia?
Borrelia species are placed in the spirochete family of bacteria, same as syphillis. Taylor provides the scientific definition of a spirochete - they are "long, thin, spiral shaped bacteria that have flagella (tails). Borrelia species grow extremely slowly....their slow growth partially explains its ability to cause chronic disease."

Spirochetes are movers - they have a "unique mode of motility that allows them to easily travel through tissues of the body. By rotating their axial filament the flagellum rotates causing the spirochete to actually move in a cork-screw fashion. This mode of motility allows spirochetes to literally "screw" themselves into and through the tissues of the body. They can also contract like a spring and move through tissues as they uncoil. Sprichetes hide their flagella from the host's immune defenses, which are normally antigenic and would trigger an immuned response if detected."

I am not a scientist and hardly anything scientific makes sense to me. But Taylor explained that the molecular component of Borrelia are bacterial lipoprotiens (BLPs.) These are fat-soluble toxins that are part protien and part lipid.

"These BLPs trigger many harmful responses in any tissue and organ system of the human body....the inflammation triggeered by the fat-soluble BLPs toxins is responsible for most, if not all symptoms of Borreliosis."

At this point in Taylor's paper, I'm lost. He goes into cell makeups, etc., etc., etc., and I just don't have the mental capacity right now to absorb that information.

However, he makes this point:

"Borrelia have over 150 genes that encode for the BLPs that are the key to their pathogenicity. This is over 50 times greater than other pathogenic bacteria. That is, other bacteria usually have only 3 genes for lipoprotiens, while Borrelia have 150!"

That information helped me understand (better, anyway!) the scientific explanation of Lyme Disease the Borrelia bacteria that makes up LD.

But what is the physical manifestation of LD?

The symptom list of LD is varied, depending on the source and the agenda of the source. I found a list from Denise Lang's book, "Coping With Lyme Disease" that is most exhaustive and accurate. Are you ready? For about 60 symptoms to be thrown at you?

Well, here you go, the symptom list divided into body parts/systems:

Head, Face and Neck
unexplained hair loss
headache, mild or severe
twitching of facial and other muscles
facial paralysis
tingling of nose, cheek, or face
Stiff or painful neck, creaks and cracks
jaw pain or stiffness
sore throat
pain in teeth
loss of taste/smell

decreased hearing in one or both ears
buzzing in ears
pain in ears, over sensitivity to sound
ringing in one or both ears

Digestive System
irritable bladder
upset stomach (nausea)

Musculoskeletal system
joint pain or swelling
stiffness of joints, back and neck
muscle pain or cramps

Respiratory System
shortness of breath, cough
chest pain or rib soreness
night sweats or unexplained chills
heart palpitation or extra beats
heart blockage

Neurological system
tremors or unexplained shaking
burning or stabbing sensations in the body
weakness or partial paralysis
pressure in head
numbness in body, tingling, pinpricks
poor balance, dizziness, difficulty walking
increased motion sickness
lightheadedness, wooziness

mood swings, irritability
unusual depression
disorientation (getting or feel lost)
feeling as if you are losing your mind
overemotional reactions, crying easily
too much sleep or insomnia
difficulty falling or staying asleep

memory loss
confusion, difficulty thinking
difficulty with concentration or reading
going to the wrong place
speech difficulty (slurred or slow
stammering speech
forgetting how to perform simple tasks

Unexplained menstrual pain
unexplained breast pain
unexplained weight gain/loss
extreme fatigue
swollen glands
unexplained fevers (high or low grade)
continual infections
symptoms seem to change, come and go
pain migrates to different body parts

The italicized/red symtoms are mine. But guess what? I don't have every one every day - it might be 20 symtoms presenting in the morning and by lunchtime, it's a new set of 10. By bedtime, I could be fine. Or I might not be. I just never know.

Over the past week, I've been dealing with ringing in both ears, loss of hearing, insomnia, extreme muscle fatigue, tiredness, stammering speech, forgetting simple tasks, memory loss, overemotional reactions, headaches, poor balance, and diarrhea.

On Wednesday I overdid it and this is how: (for those who really know me, you'll notice the drastic change this is from the girl who could once haul hay and move furniture without a problem!)

At my "job" I showed a lady how to work five machines. I did maybe three reps on each of those five machines and my muscles felt like jell-o. The next day, my right arm was numb for part of the day and I just had to let it dangle next to me while I was driving.

After that, I went over to a friend's house to clean it before they got back from vacation. I swept two floors, vacuumed and mopped the kitchen. I could barely move the rest of the day and that night, my back, legs, sides and arms felt like they were on fire. I just laid in bed as still as possible to alleviate any strain on them.

But it's a catch-22 - the more still I am, the more stiff I get and the more difficult it is to move.

It took me about 24-28 hours to recover from "overdoing it."

The kids I nanny for know they have to speak loudly for me to hear them. I feel like I'm 80.

When I'm having a conversation with someone, I have to stop and formulate my words before speaking. Even then, I still stammer, stutter and can't find the words I want sometimes. I usually just laugh it off and carry on. But it's really because I can't remember what I want to say.

The point of this post and all upcoming Byte of Lyme Thursdays is not to pity-party myself or make it sound like my life is horrible because it's not. I've lived with this disease for a year and a half now and on most days I have the ability to disguise my symptoms and carry on. And if it's a bad enough day where I can't hide it, then I usually just retreat to the recliner and sleep.

Through this venue, I want to educate my friends and family and friends of friends and family that Lyme Disease exists in Western Kentucky. While it is often a misdiagnosed and hidden disease, it is real and its victims are real.

NEXT WEEK: transmission of Lyme Disease - just ticks? Maybe not.


randy said...

thanks for sharing, Holly

A Glimpse Inside My Mind said...

Thanks for educating us Holly. I'm sorry you have this and have to deal with it on so many levels. You are so strong.