The List; 50 Days of Lyme

Posted by Nikki DiSalvo on

Since the day before Thanksgiving when I got my PICC line for IV Rocephin (aka ceftriaxone) I've been trying really hard to keep track of my symptoms on a daily basis. I had the line for 28 days and gave myself the antibiotics at home. I took almost 2 weeks "off" after the IV treatment before I began taking Banderol and Samento drops at home. I can't afford a Lyme literate doctor right now, so after a ton of research I felt like the herbal route is the best way to keep treating the Lyme while waiting to find a good LLMD I can afford.
So this log goes from the first day of my antibiotic treatment through yesterday. My memory is an absolute abomination so I need all the written help I can give myself. My hope is that other people can find similarities to what they are going through and take comfort in knowing they are not crazy, or alone in this.
It's literally a direct copy of the notes I kept on my phone, so if some of it is hard to understand I apologize! Don't hesitate to ask questions in the comment section if you have any.
11/25 PICC line put in- 1st day abx
-PICC line PAIN-- can hardly move arm without nerve pain
-Numbness in face 
-Twitching thighs
-Sharp fleeting pains in head
11/26 abx @ home 10am
-Numbness in face
-Short of breath all day
-Full & ringing ears
- Bad PICC pain
11/27 abx @ 8:30am
-PICC pain, can't straighten or rotate arm
-Heart palps, chest pain
-Facial numbness
-Very lethargic
-Thighs twitching
11/28 abx @ 7:30am
-PICC pain continues
-Headaches; behind eyes (especially R) and neck
-Knee pain- both
-Hear palps, chest pain
11/29 abx @ 7:30am
-PICC causing numbness/tingling in hand/elbow when trying to type
-Face twitching, head/earache
-Chest tight and painful
-Headache behind R eye
-3:00pm; attempt to stand: very dizzy, had to sit back down, weak and tired
-Neck stiff, throat tight
11/30- Antibiotic @ 5:30am
-7am- pain in R ear and neck-front and back, blurred vision R eye, even with glasses, pain behind eye/headache R side
-9:30am- exhausted, R side face drooping, hardly enough energy to eat apple sauce packet, head/neck tremors
*laying/leaning on R makes strong heart palps, chest pain

12/1 abx 6am
-Hand tremors starting in shower
-Short of breath starting in shower and continuing
-General shakiness
-Notable lethargy 
-Stiff painful back of neck
-Headache in back of head and behind eyes
-Difficulty swallowing/ tight throat
--A lot of twitching lately--
-R ear/throat pain (esp w intake of breath)

12/2 Antibiotic @ 5:30am
-Air in line, got it out
-Woke with head and ear pain
-Neuralgia at 7am
12/3 abx 6:30am
-Very short of breath
-HR 92 @ Dr's office
-BP 90/66

12/4 antibiotics at 5:30am
-RHR- 76 (5:30) 88(12:15)
-72- laying down flat 5min, 100 upon standing 1 min
12/5 abx @ 7:30am
-Very lethargic
-Heart palps during and after abx (stayed in bed till 9:30)
-Pain in ankles then progressive loss of sensation and weakness in legs; difficulty walking; scary
-Back of neck pain, headache, facial numbness
-Trouble swallowing
-A lot of twitching
12/6 abx 8am
-^^ Heart rate
-Yawning a lot
-Nausea (past 3-4 days on and off)
12/7 abx 5:15am
-Don't forget about light/sound sensitivity, motion sickness (?) while driving
-L side face twitching, L side headache
-Tender top of head (noticed last night)
-Don't forget near constant ear ringing
-L side forehead pain with touch;causes numbness in L cheek

12/8 abx 5:30am
-A lot of diffuse pain (arms, legs, back)
-Extra tremors
-Emotion making them worse
-Frightening episode of depersonalization- nothing looks "right" like being in a nightmare, standing in corner of dining room very scared, crying, went away on its own
-Later, 11pm, RHR 82 (sitting for an hour, writing paper)
-Always ear and head pain
-Heart rate 104 upon standing
12/9 abx@ 8am
-Fatigue in waves (moderate--severe)
-Increased lack of concentration
-Diffuse pain; new areas on legs, feet, arms, and hands
-Bad knee pain
-Swollen lymph R side under jaw
-Don't forget odd thoughts/sensations; "I think I'm going to fall" (when sitting or standing), "I wonder what I'm doing right now" (getting completely lost when trying to complete task), "where am I?" (when driving)
12/10 ?
-No notes

12/11 abx 5:30am
-Lack of balance yesterday and today
-Joint pain bad- elbows, L shoulder, knees
-Pain in shins, feet, arms, hands
-Swollen lymph node R neck started yesterday
-Period started yesterday, 13 days early

12/12 abx 7:30am
-Period still
-Pain sharp, L ovary side (not normal cramps)

12/13 abx 8am
-Facial numbness 
-Weak shaky legs
-Pounding heart
-HR- 110 while puttering around kitchen making tea
-Hearing going in and out, ears ringing a lot
-Bad stomach, diarrhea

12/14 Monday Abx @ 5:30

-Abnormal final

12/15 Tuesday Abx @ 7:00

-Aging final 
-Swollen lymph pain, under jawline and groin
-Difficulty swallowing (near choking)
-Don't forget about after images of lights 
-Bad headaches continue (worse than before abx) and most often R side behind eye
-Difficulty walking in store
-Very sore stiff neck, especially at base of skull (frequent)
-Corticosteroid shot/face

12/16 Abx @ 5:30a 
-Very little sleep last night (up till almost 1am writing paper, alarm says 4 hours 21 min till wake up)
-Went to Wegmans for about an hour
-On the way sharp pains lower right guts and then spread across abdowmen
-Horrible knee pain, especially L starting in store, can hardly walk up stairs.
-2:30pm horrible sharp pain top/side of head R, lightheaded 
-Transient pain, wrist, ankle, arm, leg, hips, groin, back-sharp
-Don't forget nausea often and aching all over body (sensitive feeling, like getting sick/flu)
-Don't forget hearing problems, going in and out
-Don't forget about flashes of light in vision, seeing things move out of corners of eyes
-Don't forget about feeling like cold rain on skin

12/17 abx at 8:00

-Still twitchy
-Heart palps have been picking up
-R face drooping last couple days on and off
-Urine smells HORRIBLE, kind of like cat pee
-Bad visual problems on way to school at night (tracers, blurry, ghost images)

 -Strong headache R side
-Stiff painful neck
-Bad time during test (Social 
Psych final) and driving home- worsening of head/neck pain, stiffness, almost unable to drive
-Hot flashes
-Hearing in and out

12/18 abx @ 8am
-Getting a cold
-Lymph nodes seem less swollen
-Stiff neck
-Too much exertion caused extreme fatigue

12/19 abx @ 7:30am
-I have a cold
-Good morning resting, until used the computer too much and got headache, lightheaded

12/20 abx @ 8:00
-Don't forget about the pain in L rib cage that happened for about a week after starting abx and is now on and off (people say linked to Bartonella)

12/21 abx @ 5:30am
-Pain in my bones all over
-Lots of cramping in hands and legs and feet yesterday and today
-Shortness of breath not as bad lately
-Driving not as bad the last two days!
-Shivers in shins

12/22 abx @ 5:30am 
-LAST DAY!! PICC out today!
-Still trouble swallowing
-Headaches sharp
-Still have a cold
-Visual disturbances continue (flashes of light in visual field, illusion of movement, etc)
-Back doesn't seem to be cracking as readily
-Twitching along R rib cage
-Horrible headache 7:30pm
-RHR 84
-Pain in chest (R, heart?) 9:00
-R pelvic pain
-Blue light filter on phone went off and caused great distress/sensitivity, yellow filter even worse, couldn't remember what I was doing after or how to get out of screen

12/23 -first day no abx!
-Late in day decreased sensation in legs (clumsy gait)
-Headaches all day
-Return of back pain and cracking

-Very shaky this morning
-Out of breath
-Pain/odd feeling in top R chest, squirmy odd feeling
-HR 102 standing making pretzel candies

-Numbness in hands
-Woke with swelling in L knuckles
-9:00p RHR 94 sitting, 116 upon standing- 1min
-A lot of leg and foot cramping
-Pain in lower L abdomen
-Overstimulation from sound, hypersensitive (almost makes me freeze in place and not know what to do)

-Very exhausted (so much activity yesterday and day before)
-Foggy brain, can't concentrate
-Don't forget about olfactory hallucinations

-Standing cutting veg- HR 108(11a)
-RHR 108- eating and reading(11:45a)
-Very exhausted (hard to move kind)
-Out of breath
-Ears crinkling/clicking lately (and today)
-Numbness of face 1:00p
-116 standing HR
-Uneasy/shaky/buzzing feeling throughout body, esp chest

-Walked dog two and a half miles at 1 p.m
-Facial numbness at 2:30 p.m.
-Driving- lightheaded, disconnected, constantly have to remind myself where I am and where I'm going
-Top of head pain when touched
-RHR 88- laying down for ~40min -- Stand 1min-102
-Headaches come and go
-Laying in bed heart pounding- hard to sleep, get comfortable
-Brushing teeth HR 116

-Woke at 6a w frontal headache, nauseous 
-Widespread burning sensation and weakness
-Nausea throughout day

-HR 106 after getting out of bed, taking dog out and coming back in
-Short of breath 
-Bad knees continue
-R eye very blurry
-Very fatigued all day
-10:00p strong brain fog
-Visual Problems- light flashes, blue, seeing things moving that aren't

-HR 96 @ 9am- walked to kitchen and back
-Short of breath
-Pain and swelling in fingers
-Decreased sensitivity R side
-Episodes of depersonalization/disconnect lasting 5-10sec
-Burning sensations R side
-Cold rain feeling on skin
-A lot of twitching last 2 days
-Transient pain, moderate

-Went down to basement to check heat, came upstairs- very lightheaded, on verge of fainting, extremely out of breath, HR 120, tingling hands and feet, had go sit for total of about 10 minutes before I could get up and walk, very weak and shaky
-First day back working at restaurant- very exhausting, during and after, hard to keep up mentally and physically, very shaky, twitchy
-Chest pains starting around 8:30p (10:30p now)

-Feel like I don't function with less than 9hr sleep lately
-Slept 11a-5p, woke and couldn't get up, slept 6:45-9:45
-Golfed with dad (first full round since supergroup)- breathing troubles, we went pretty slow with dog, joints painful especially toward end and after, exhausted after, took shower and had to take a nap before babysitting, sooo wiped out
-Scared to drive far lately

-HR 100 after driving to work
-Muscle cramps and spasms at work
-Pain migrating
-Throat tight and painful
-Pain in L base of skull/stiff
-Pain in L thumb base, outer edge, pain in waves
-Weird occurrence- said "this yogurt smells like cookies" meant to say lotion, not yogurt--laughed hysterically, out of control, started crying almost, not funny anymore 

-L ovary pain at 3:30am-very sharp
-Headache radiating from back of neck
-Stiff painful neck
-Face and tongue numbness
-Problems learning and retaining new information-the more technical the more difficult
-Very very tired day
-HR high (90 and above) and feel heart beating very hard
-Hearing fading in and out

1/5- Start meds, 5 drops
-Don't forget about morning blurred vision, pain in feet, hard to walk, stand up straight
-Pretty okay morning until going into Wegmans, then neck stiffness and pain, walking difficulty, headache, face twitching, bad brain fog, head/neck tremors
-Continued into evening, mostly neck pain and stiffness-- had to roll something to have behind neck
*AFTER 1ST DOSE Banderol & Samento (only one today, before dinner)***
-Ears ringing 
-Bad back pain 
-Bad stiff painful neck
*Horrible headache coming from behind head behind eyes-cant sleep
-Pain all over, migrating 

1/6 Meds @ 9am/7pm -- 5 drops
-A lot of involuntary head movement, jerking
-Face numbing (head down ish looking at comp)
-Body buzzing
-Neck pain - feels like can't hold my head up
-RHR 60!
-L side TMJ cracking and stiff

1/7 Meds @ 8:30am/7pm -- 5d
-Burning pain on L bicep 
-Took dog for walk, ~2mi, okay during (more difficult than usual), exhausted after
-Can't get a full breath

1/8 Meds @ 8:30am/11:00pm -- 6d
-Can't get full breath
-Head pain, dermal
-Heart rate ^^
-Worked at restaurant- a lot of cognitive difficulty during and after, pain in knees, fingers/wrists, exhausted, nausea, very shaky

1/9 Meds @ 7:30am/7pm -- 6d
-Disc golf league- stiff/painful neck, pain in most large joints, headache, lightheadedness, blurry vision, short of breath, chest pain
-Car sick(1st time when someone else was driving)
-Bad L elbow pain
-Head pain, scalp
-Throat tight painful
-Ears crackling, ringing
-Headache behind R eye
-Twitching/jerking past few days a lot

1/10 Meds @ 10am/6:30pm -- 7d
-Brought garbage can back from road-HR 132
-A lot of pain migrating
-After taking meds - increased nausea, ice pick headache L side (turned into behind eyes headache after an hour)
-Very blurry vision
-Strong light after images

1/11 Meds @ 9am/8pm -- 7d
-Buzzing in chest, neck, head, hands
-Good RHR 66 
-Nausea, tight throat
-Strong lack of energy/depressed feeling
-Loudly ringing ears
-Too much computer use, eyes blurry and seeing lights where there aren't any, tracers
-Bad pelvic pain

1/12 meds @ 9:30am/6:30pm -- 8d
-So nauseous when driving, driving causes stiff painful neck and headache, lightheadedness
-RHR 99 :(
-Short of breath
-Very bad R side back pain
-Kidney pain? R side
-RHR 100
-R eye pain
-Vomiting- 8:30pm
-Headache, front of head
-So nauseous
-Bad back pain center and L upper/mid back
-Pain in chest center and under L breast

1/13 Meds @ 9am/5pm -- 8d
-5am so nauseous
-Not hungry most of day
-Bad stomach, crampy, diarrhea
-Can't get full breath
-Ears very full
-A lot of twitching
-Internal vibrating through chest and back
-After eating sharp pain between shoulder blades and middle/L of chest, most of night on and off
-Pain in L arm muscles
-Tingling/numbness in feet, hands, face
Whew! That's a long list of not very much fun. I wish I could say I'm feeling better after the treatment I've been through, but I'm not. Yet. I have more symptoms now than I did before I started the antibiotics. The best thing so far is that I haven't had any seizure-like episodes since I started treatment. That's definitely something to be grateful for. I talked a little about those in a previous post and will elaborate in the very near future. So much to talk about!
Be Well,