Ok, so working from the list developed yesterday, I'm going to start chipping away at them.
*I am not a doctor nor do I or have I played one on TV.
I have, however, seen over 30 before I got a diagnosis so I am well versed in their "methods."
*I am not and will not be a life long Lyme victim.
While I have been ill for over a decade and may continue to be ill, hopefully going in and out of remission from time to time, I am not now nor EVER will be a "career Lymie." Just not me. I do my research, pick a course, and follow it. Wallowing isn't one of them and I gave up on the victim mentality at some point in my late teens/early 20's. It just wasn't working for me. I'm not a hard ass, I just have a very low bullshit quotient.
*Pretty much everyone has a Lyme blog, and while this is not specifically about Lyme and is about Chronically Living, this is a month long challenge to share Lyme information daily. I'll be doing that. Then I'll to back to my irregularly scheduled stuff.
If you're interested in reading heart wrenching blogs with videos of people languishing in bed while their devoted spouses spoon feed them, they're all over the place. Just not here ... no sensationalistic photos or videos. As an INFJ I can PROMISE you that.
So, that being said here's today's topic:
Some Basic Educational Stuff Such As Symptoms and Stages of Lyme Disease
1. So, who's the enemy really?
"Keep your friends close and your enemies closer." Somehow while I don't the original author wrote that about parasites, the principle stays the same. Know what you're fighting so you know their game. Then beat their asses.
Lyme patients are fighting the bacterial parasite, Borrelia burgdorferi. At least. Most of us are also fighting bacterial co-infections (I have three) as well as viral co-infections (I have at least five.) In order to be cured ALL must be addressed in treatment (tx for those fascinated by medical shorthand.)
"Borrelia burgdorferi, like the human pathogen Treponema pallidum, is a spirochete. Spirochetes are a group of phylogenetically-distinct bacteria that have a unique mode of motility by means of axial filaments (endoflagella). Spirochetes are widespread in viscous environments and they are found in the intestinal tracts of animals and the oral cavity of humans. The spirochetes have a unique cell surface which accompanies their unique type of motility. The endoflagella are contained within the periplasmic space between a semi rigid peptidoglycan helix and a multi-layer, flexible outer membrane sheath. When the filaments rotate within this space, the spirochetes move in cork-screw fashion. This type of movement is thought to be an adaptation to viscous environments, such as aquatic sediments, biofilms, mucosal tissues and the intestinal tracts of animals. For pathogens, this allows the spirochetes to hide their flagella, which are normally antigenic, from the host immune defenses.
Spirochetes are usually much longer than they are wide, and often their width is below the resolving power of the light microscope. For example, Borrelia may have a length of 20-30um but a width of only 0.2-0.3um. Hence, most spirochetes cannot be viewed using conventional light microscopy. Dark-field microscopy must be used to view spirochetes. Dark field microscopy utilizes a special condenser which directs light toward an object at a angle, rather than from the bottom. As a result, particles or cells are seen as light objects against a dark background."
Just for fun facts to know and tell, my Lyme was discovered during a dark-field microscopy six years after becoming disabled. Having been a former science teacher I am fascinated by all things microscopic ... particularly when we're talking about MY body. I watched a little sperm like item squiggling across the screen and innocently asked, "Is that SUPPOSED to be there? That doesn't look like a blood cell to ME. What is that?" Almost nonchalantly the doctor replied, "Oh. That's Babesia." THIS was my defining moment. I knew that Babesia was a parasitic co-infection of Lyme Disease. While I hoped my voice did not give away the terror inside me I asked back, "Isn't that a co-infection of Lyme?"
And I quote the doctor, "Yeah."
Yeah. YEAH??? You've been treating me for six years for Chronic Fatigue Syndrome and Fibromyalgia. YEAH? All you can muster up is, "Yeah?!!!"
Yeah. Clearly I had my work cut out for me.
2. What are the SYMPTOMS of Lyme Disease?
- The infamous "Bull's Eye Rash."
While many believe that the "bull's eye rash" is considered the end all tell tale sign of Lyme Disease, the reality is that not every one gets one. Not even close. I may have ... but if I did, I sure didn't see it.
"According to the International Lyme and Associated Diseases Society (ILADS) physicians, the Lyme rash may occur in up to 50% of people infected with Borrelia burgdorferi. In other words, up to half of the people who have a Lyme infection may never develop a rash at all."
Yup. You heard it here. All those "*I* never saw a rash on her" doctors need to familiarize themselves with the diseases about which they purport to know. Just sayin'.
So is a Bull's Eye Rash a symptom of Lyme Disease? ABSOLUTELY. Of ONE strain of the enemy. And only UP TO 50% MAY develop said rash. I had rashes of other sorts. It was suggested I change fabric softeners. White vinegar, people. I use white vinegar. This is not an issue for me.
* Other Lyme Disease Symptoms
- Symptoms of Lyme disease are often times confused with influenza, infectious mononucleosis, and rheumatoid arthritis: True. I can tell you that while I have blood work that shows a rather humongous "former" infection of EBV I never remember getting it and I did not test positive for any active infections during times of severe illness. I had a son with a HORRID case of EBV and his illness looked just like mine. Only he tested positive. I didn't. My ANA titers are fine, thank you. No RA, no Lupus, no whatever else that checks for.
- Headache: These are not your garden variety headaches. These are literally blinding, puking migraines that can last for days. Why? Because it hurts when Bb burrows into your brain.
- Chills, sweats, and fever: Mine went up to 104 for weeks at a time. "Fever of unknown origin." These are not menopausal sweats, this are AID patient drenching sweats that require at least a change of clothes. Usually change of bedding if one is fortunate enough to have the strength to do that or someone to do it for them. Chills? You want chills? We shiver under blankets when it's 80 outside and get goosebumps that HURT.
- Muscle and joint pain: This is not "weekend warrior" pain. This is incapacitating and renders one useless. It can hurt so much one can't sit on a toilet. Really.
- Fatigue: Not "tired." Not "really tired." This is "I can't lift my head off the pillow I'm so weak" tired. Yup. Unfortunately, this is my #1 symptom, fatigue. It would be great if I could take a nap but those Bb have drilled so far into my brain that sleep is nigh until impossible and all those "normal" sleepy time suggestions are laughable for us. We're hard to put under anesthesia and it's tough to get us to come back out.
- Swollen lymph nodes: Really swollen. Can't turn my head or swallow, and I'm drooling I'm so swollen.
- Brief arthritic pain and swelling in larger joints, such as in the knees: I have not had this symptom but it keeps many wheelchair bound. "Brief" is a little condescending.
- Nervous system abnormalities, such as numbness, pain, partial paralysis of facial muscles, and meningitis: Oh. Yeah.
- More subtle changes such as memory loss, difficulty with concentration, and a change in mood or sleeping habits have also been associated with Lyme disease: No duh. I now carry the label of "mildly cognitively impaired" via a neuropsych eval. "But you don't SOUND stupid," you say. "Yeah, you never knew me before." But the good news is I'm in tx (remember that medical shorthand) and expect to see ground recaptured.
- Irregular heart rhythm: If I had a dollar for every time I had to wear a heart monitor halter over the last decade I could afford my tx. Really. Our hearts are always, "Just FINE!" until we have a heart attack (which I did last year.) WHY? Lyme attacked it.
- Cough, shortness of breath: Nothing says, "scary" like the inablility to breath.
- Double/blurry vision, pain or floaters: Makes driving a real challenge. Or pretty much anything else that involves being able to see.
- Photophobia: Yeah, we don't wear Ray Bans because we're so hip, we wear them so we can SEE.
- Hair loss: This has happened to me twice, rather dramatically. Kind like watching a chemo movie. This was the motivation behind getting my hair cut really short. It's less emotionally devastating to find it on the floor of the shower when it's short.
- Difficulty swallowing
- Swelling around the eyes
- Unexplained weight loss/gain: I'm a weight LOSER. At my lowest I weighed 106. At 52 after having had four sons. I was accused of being anorexic. REALLY? Do you people READ??? That is not a middle aged issue (and at 52 my children were busy reminding me I was not middle aged and unlikely to make it to 104. I was OLD.) I used to teach and can tell you when to start watching kids for it and when it "peaks." Find me a newly anorexic 52 year old. Really.
- Buzzing, ringing or ear pain: Ok, this is some crazy making stuff and is managed through self will. No one cannot will it away but one CAN learn to "hear" through all the other noises. Although for some the pain is just unbearable.
- Difficulty eating: I actually usually cry all the way through dinner if I have to eat alone. I have to eat protein and a salad. It can take me 45 minutes to sob my way through a bowl of salad.
- Nausea or vomiting: To quote one of my "Wonderful Ladies," .... "I could puke a football field." Sometimes we do.
- Diarrhea or constipation: I am thankful to say that tx (TREATMENT) has rather quickly resolved this although I know when I change up my meds it's always waiting for me.
- Tremors: Intramuscular as well as the obvious. You do NOT want me to bring you a cup of tea. Really.
- Eyelid/facial twitching or Bells Palsy: Annoying.
- Abdominal cramping/pain: This feels a little like childbirth sans meds.
- Irritable bladder or bladder dysfunction
- Testicular/pelvis pain: NOT an issue for me.
- Neck creaks, cracks or stiffness: Yeah, I can now diagnose Lyme Disease by listening to a person walk across a room. The noise is incredible.
- Insomnia: #2 (remember, fatigue is #1.) Treatment (tx!) has afforded me the luxury to half my sleep meds. This pleases me greatly.
- TMJ (jaw pain)
- Poor balance: To quote the friend that took me to see my LLMD, "You don't want to have her shut her eyes and let go of her!"
- Difficulty walking: At times.
- Seizure activity:
- Stabbing sensations: Usually like a knife between two ribs. But that's just me.
- Personality changes: Although I have not had these and even close family and friends will back me up on this, I have found I've lost a lot of social skills. Maybe it's because I'm not "in practice" anymore and spend most of my days alone. Maybe it's because I feel lot of "what do *I* have to chit chat about that anyone can relate to?" Maybe it's because I'm an INFJ and find a whoooole lot of people a whooole lot of boring, but I really don't think that's it. I think I've been robbed of my confidence.
- Mood swings: YES! NO! I SAID YES!
- Irritability: At times ... but for me irritability is directly tied to how much pain I'm in, how I slept the night before, if I'm reacting to meds or experiencing a die off, or just got a letter from my mother. Come on. ANYONE with the flu gets irritable. This is like a 24/7/365 Hong Kong flu. We can get a little testy.
- Depression: Let me SHOUT THIS FROM THE ROOFTOPS. I am NOT depressed. I do have moments of profound sadness over what I have lost and didn't need to, had I been promptly diagnosed and given a month's worth of ABX (antibiotics!)
- Anxiety: This was one of my most debilitating first symptoms and it came out of NOWHERE. I wasn't worried about anything in particular, my job was going well, my kids were doing well, my ex was being his PITA self ... so nothing new there, and I really liked the guy I was dating. PLUS, it was the end of the school year, I had an ENTIRE summer before me and I had just run a 5k as a "Girls on the Run" coach. What's to be anxious about? This isn't "worried." This isn't tied to a subject matter. This isn't psychological. Those bugs are munching away and at times MANY of us feel we're losing our minds. Which we are, kind of ... for a while. This is the symptom I MOST FEAR returning during treatment and the one that sends us spiraling. Pain. Used to it. Inability to sleep? Annoying. Feeling like one could explode? Terrifying.
- Menstrual irregularity: There a gift. I got this while I was post menopausal. Go me.
- Loss of libido: HA! We'll cover dating and the Lyme patient another time.
- Trouble speaking: Not out of the ends of my fingers but I have been known to say, "Put the food in the carburetor." Really. Where does that come from? Refrigerator and carburetor both have more than three syllables? They both end in "tor?" I got nuttin, but I will say I now laugh about that and it's freeing.
- Disorientation: I own a GPS and a cell phone that is WAY more high tech than I "need." WHY? Because they are both "assistive devices." But not tax deductible ... although I should look into that!!!
I think this is enough for today. It was kind of hard writing all that down. While my copy/paste skills are still intact seeing that all in print is a little emotionally overwhelming to me. Plus, I've gotta go take round two of meds. And I've got a list to write ... I talk to my LLMD on the phone today. I have finished Month One of tx (treatment, people, treatment!) One down, 35 to go. That's 1/36 of the way through ... already reduced to its lowest common denominator.
I guess I'll have to do the "Stages of Lyme" tomorrow. It's a spell binder. Be careful, gentle reader, you'll start to see people with Lyme all over the place. And you'll be right.