2004-02-14T21:08:00.000-08:00

Status

050521 - Have had a persistent cough for about a week now. It started just when I got over a very brief cold.
051115 - Have had a persistent cough for about a week now. It started just when I got over the cold.
051105 - Woke up with a pretty bad sore upper shoulder muscle on the right side.
051010 - frequent light cough as recovery from mild cold cntinues
050913 - Very frequent twitching in right eyebrow for about a week.
050730 - Horrible constipation episode. Harsh chemical laxative to the rescue.
0506725-050728 Headaches each day. Resumption of creatine on night of 050724 the cause?
050724 - Clread a three-day constipation (on creatine break)
050719 - Notable new stiffness and difficulty moving left shoulder joint for the past week or more.
050612 - Continuing nose bridge twitches, new left palm twitches today, tired sore tight legs for two or three days after 6/7 return from trip. Increased walking problems.
050518 - Nose bridge twitches last couple of days.

050511 - Cold or allergy symptoms gone. Still a glob of clear sputum once or twice a day.
050508 - One symptom that's been going on for a few weeks now and looks to be permament is that when curling the fingers on the left hand, the left pinkie tip does not curl as much as the others. I think a doctor explained to me that the pinkie is on a nerve of its own.
050507 - Two or three coughs in morning. No symptoms during day.
050506 - Small globs of light green sputum coughed up on three occasions. No night coughing. No sneezing.
050505 - Nurse practitioner says my lungs are "perfect." She thinks it's viral. Couging made sleep impossible circa 5 AM.
050504 - Allergies past three days now. Started taking Namenda again on 5/2. Night cramps still not 'damaging.' Minor neck twitching, but not the rear neck muscle. Possibly the lability is decreasing, not sure yet, but better able to keep a straight face.

050329 - Marked left thumb spasticity for about a week now.
050325 - Last night I had the night numbness in my hands. I woke up on my back and I have the impression that there was nothing odd about the positions of or pressures on my arms.
050322 - Night numbness still gone. Left thumb and hand cramps increasing. Left leg spasticity decreasing, much less when proppiing leg during showering.
050314 - Have not noticed night numbness for a while. Stretch cramps are sometimes painful and locking, but often just alarming without appearing to do damage. Twitching pretty mild but daily.
050302 - Plenty of night numbness in my hands and arms. Cough is gone. Started the penicillin on 050301. Speech is getting worse despite improved grip strength.

050209 - Still no limb numbness at night. Twitching and speech slurring, clumsy walking as usual. Feeling good.
050206 - I consider the cough to be gone, and just the 'scars' remain. I have not noticed the night numbeness and tingling during the ceftriaxone period, other than, apparently, the wednesday night 050202, the night after the initial infusion at the hospital.
050205 - Cough almost totally gone, though does sometimes strike mildly for a couple of minutes. No production.
050202 - Began daily 1 cc IV ceftriaxone.
050203 - Night numbness and tingling of arms and hands continues, though I characterize it as 'light,' and it feels different from blood deprivation (e.g. sleeping on the limb)
050202 - Cough greatly reduced, apparently will not get out of hand. Speech slurring increasing. Started 1g/day Ceftriaxone IV.
050131 - Started probiotics with Garden of Life Primal Defense HSO Probiotic formula, three in the morning on empty stomach, three more in evening on empty stomach.
050128 - My speech slurring is increasing, and is noticable to strangers now, though none have commented on it, nor have the kids. The awkwardness walking continues to increase.
050126 - Cold and cough still, but perhaps on the mend already. Lungs were clear at the doctor's today. Started using Nasonex.
051020 - Cold germs have inflamed throat lining and created a little nasal congestion. I may still escape the clutches of the germs, mayhap.

050113 - Still no respiratory infections. The sleeping hand effect has stopped. Mostly I feel that tight ALS-muscle sensation in my right calf and thigh, not in the left at all. But in both right and left legs I have twitching.
050106 - My right hand falling 'asleep' almost every night now for a week, but apparently not due to having been slept on. Numbness and lack of sensation are strong, but tingling is lighter (thoguh present) and of a different quality than normal 'sleep' due to blood-deprivation. And the when I wake and notice the 'sleep', the recovery is fairly painless and quick (20 seconds or less), with no strong painful tingling, and requires no shaking of the limb.
041231 - For most of the year, most of my major muscles might cramp when yawn-stretching in bed, but the only part of my body that feels that sort of ALS muscle burn is the right calf. The left leg, arm and hand are progessively degrading, but only the right calf feels "the burn."
041221 - Still no coughs or colds.
041130 - Cough totally gone for several days now. Very deep inhale exercises triggered one (1) cough today.
041105 - Cough has been on steady decline since stopping use of Astelin. Only occassional now, and not every time I speak.
041104 - Constipated. Marie Callender chicken pot pies? Big plates of spaghetti and cheese? Horrible. Tired of this.
041101 - Astelin nasal spray in the late morning causes massive coughing starting in the early afternoon. Used it again in the vening and discontinued after that. Harsh coughing on 041102 and somewhat abated though notable on 041103.
041101 - Probably have avoided a cold. Cough continues to recede.
041028 - Exposure to cold air. onset of sniffles, cold symptoms.
041025 - Cough almost gone, even when speaking.
041024 - Constipated, probably due to drinking milk.
041019-041020 - Cough severity declining, generally only appears when talking.
041019 - Constipated. Milk?
041007 - Chest burning gone, cough still here, cold getting better
041006 - Nurse practitioner says I have bronchitis again, I begin taking Zithromax, also I get a flu shot.
041005 - A new cold on top of the old cough.

041004 - Same recurrent cough continues, a little more often and forceful.
041002 - Cough resumed as a recurring involuntary thing, small amounts of phlegm.
040927 - Cough gradually lessened and is now essentially gone, except for some wheezing at times when talking. Lungs are still a bit touchy but hacking cough went by the boards perhaps a week ago, or more. Not sure.
040926 - See blog entry, left toes much less responsive than CHristmas 2003. Not worried about it.
040915 - Cough continues mildly, sensitive to talking. Today I noted (formally) that my left leg bows inward at the knee much more dramatically than my right leg when I squat on it, for example when compressing the ankle joint as a stretch. They've always had this tendency, since I was born pigeon-toed and had to be straightened with plaster casts and braces. This greater bowing of the left leg has been going on for a while, I just had never formally noticed it in comparison to the right.
040909 - Cough continues but only sporadic, and not punishing. Triggered by talking.
040905 - Final dose of antibiotic this morning. Cough still infrequent, often productive when it happens.
040903 - Recovery day. Good energy. Able to talk more. Infrequent moderate cough.
040903 - Recovery day. Energy much better, bad feelings gone. Able to talk in small bits. Infrequent moderate cough.
040902 - Coughing was bad during day then subsided right at bed time. Slept well.
040901 - Felt burning (internal sunburn) sensation of bronchitis. Coughing worse. Muscle aches and cramps between abdomen and thighs.
040831 - began antibitotics (Augmentin) for possible bronchitis.
040829 - Cough has been continuous, talking or positional change starts it. Applied Indian Cough Remedy on 040828, which produced very good lava flow in the morning. Cough continued, however.
040812 - Miserable virus day with dry cough, not much respiratory involvement, poor energy, headaches previous two days. Managed to function.

040723 - Leg and arm crampiness gone although right calf feels a bit tender.
040715-040721 - Glutamate poisoning from why protein powder (3290 mg / serving), legs crampy, arms too.
040604- One or both ears plugged, inner ear apparently effected, head feels disconnected, balance impaired

040530-040603 - Typical cold, no flu symptoms, lethargic but not out of ordinary for cold such as this
040514 - Normal energy level is back. But calves and biceps much more prone to cramp than before 040503. Have switched to super-light workouts and very light runs.

040503 - Fever and body ache like the flu, but that's all. No other flu symptoms.

040128 - Diagnosis confirmed. Left side still slow, but left side and entire body stronger due to runs and gym.
040113 - ALS diagnosis. Left side slow and weak

Inspired volume (self-measured)

Date	Result
040406	4000 mL
040419	5100 mL
040512	5100 mL
040527	5000 mL
040928	4000, 4250, 4250, 4250, 4500, 4600, 4550, 4500 mL
041001	4900 mL
041003	4600 mL
041004	4600 mL
041005	4500 mL
041015	4250 mL
041020	4300 mL
041021	4500 mL
041022	4600 mL
041026	4700 mL
041027	4750 mL
041029	4800 mL
041103	4250 mL
041106	4400 mL
041109	4500 mL
041110	4400 mL
041110	4400 mL
041126	4500 mL
041130	4250 mL (even though lungs feel very clear, and no cough)
041214	4500 mL
041230	4500 mL
050105	4400 mL
050114	4300 mL
050126	4500 mL - w/ cough!
050202	4500 mL - w/ mild cough
050206	4505 mL

Blood pressure

Date	Result
030320	141/90 (?)
040113	126/90
040309	140/78
040405	136/80
040409	130/84
040831	110/76 (normal!)
040909	110/70 (normal!)
041007	130/80 (normal)
041101	128/86 (normal)
050126	118/76
050202	136/89

100-yard dash

Date	Result
040121	16.19 secs
040213	15.60 secs

Push-ups

Date	Result
040214	8
040217	10
040224	12
040304	14
040308	15
040331	12
040405	10
040419	11
041020	3
041022	3
041029	4
041230	2
050202	2

Weight

Date	Result
921226	122
040123	137
040405	136.9 (w/ pants, empty pockets)
040903	139 (w/ pants, t-shirt, empty pockets)
050126	136.5 (w/ pants, t-shirt, empty pockets)
050202	136

Forced breathing score

Date	Result
040128	94 percent
040405	97.3 percent

Inhalation force

Date	Result
040405	115, 100, 115

Peak cough flow rate

Date	Result
040405	650, 600, 700

Nautilus medium hand flexer

Date	Result
040222	11 (lt) / 62 (rt)
040222	19 (lt) / 73 (rt)
040224	24 (lt) / 72 (rt)
040224	26 (lt) / 85 (rt)
040225	29 (lt) / 92 (rt)
040225	32 (lt) / 100 (rt)
040226	35 (lt) / 110 (rt)
040301	38 (lt) / 120 (rt)
040304	41 (lt) / 137 (rt)
040310	41 (lt) / 138 (rt)
040331	49 (lt) / 140 (rt)
050202	2 (lt) / 50 (rt)

Speech rate (typical range 165-200)

Date	Result
040405	198

Executive function spontaneous naming (e.g. of animals, with concern for 17 or less)

Date	Result
040405	25

Speech rate (typical range 165-200)

Date	Result
040405	198

Grip dynamometer

Date	Result
050110	lt 38/rt 100
050202	lt 33/rt 94

Blood work

7-29-05

White cell count: 3.4 thous/mcl, normal: 3.8-10.8
Red cell count 5.58 mill/mcl, normal: 4.2-5.8
Hemoglabin 17.3 g/dl, normal: 13.2-17.1
Hematocrit 49.5 %, normal: 38.5-50
MCV 89 fL, normal: 80-100
MCH 31 pg, normal: 27-33
MCHC 35 g/dL, normal: 32-36
RDW %, normal: 11-15
Platelet count 238 thous/mcl, normal: 140-400
MPV 8.3 fl, normal: 7.5-11.5
Neutrophils 45 %, normal: 40-75
Lymphocytes 43 %, normal: 20-45
Monocytes 9 %, normal: 0-12
Eosinophils 2 %, normal: 0-6
Basophils 1 %, normal: 0-2
Absolute neutrophils 1.5 thous/mcl, normal: 00-00
Absolute lymphocyte 1.4 gaf/plap, thous/mcl normal : .85-3.9
Absolute moncoyte 0.3, thous/mcl, normal: 0.2-0.95
Absolue Eosinophil 0.1, thous/mcl, normal: 0.015-0.5
Absolute basophil 0, thous/mcl, normal: 0-0.2

Bilirubin 2.3 MG/DL, normal 0.2-1.5
Urea Nitrogen 15, normal 7-15
Creatinine 0.9, normal 0.5-1.4
Calcium 10.3, normal 8.5-10.4
Sodium 140, normal 135-146
Potassium 4.1, normal 3.5-5.3
CO2 27, normal 21-33
Chlorine 99, normal 98-110
Protein, total 8.1, normal 6.0-8.3
Albumin 5.2, g/dL, normal: 3.5-4.9
Globulin 2.9, normal 2.0-3.9
A/G Ratio 1.8, normal 1.0-2.5
Alkalin Phosphotase 45, normal 20-125
AST (SGOT) 27, normal 2-50
ALT (SGPT) 26, normal 2-60

2-26-05

Triglycerides: 127 mg/dL, normal: 0-149
Cholesterol 242 mg/dL, normal: 100-199
---HDL (high-density, the "good" cholesterol) 66 mg/dL, normal: 40-59
---LDL (low-density, the "bad" cholesterol) 151 mg/dL, normal: 0-99
---VLDL (very low density, "very bad") 25 mg/dL, normal: 5-40
Bilirubin 2.7 mg/dL, normal: 0.1-1.2
Glucose 82 mg/dL, normal: 65-99
Urea Nitrogen ("BUN?") 19 mg/dL, normal 5-26
Creatinine 0.9 mg/dL, normal 0.5-1.5
BUN/Creatinine ratio: 21, normal: 8-27
Calcium 10.3 mg/dL, normal 8.5-10.6
Sodium 144 mmol/L, normal 135-148
Potassium 5.1 mmol/L, normal 3.5-5.3
CO2 33 mmol/L, normal 20-32
Chlorine 102 mmol/L, normal 96-109
Protien, total 7.5 g/dL, normal 6.0-8.5
Globulin 2.7 g/dL, normal 1.5.-4.5
A/G Ratio 1.7, normal 1.1-2.5
Alkalin Phosphotase 41 IU/L, normal 25-150
AST (SGOT) 24 IU/L, normal 0-40
ALT (SGPT) 32 IU/L, normal 0-40

12-19-2004

Triglycerides: 104 (was 250), normal: <150
Lyme disease for kD 18,23,28,30,39,45,58,66, and 93 IGG nonreactive
but:
Lyme disease 41 kD IGG reactive
Cholesterol 239 (was 284), normal: <200
---HDL (high-density, the "good" cholesterol) 60, normal: >40
---LDL (low-density, the "bad" cholesterol) 158 (was 181), normal: <130
---VLDL (very low density, "very bad") (was 42) 21, normal: 5-35
Bilirubin 4.5 MG/DL, normal 0.2-1.5
Urea Nitrogen 18, normal 7-15
Creatinine 0.9, normal 0.5-1.4
Calcium 10.3, normal 8.5-10.4
Sodium 140, normal 135-146
Potassium 4.2, normal 3.5-5.3
CO2 30, normal 21-33
Chlorine 100, normal 98-110
Protien, total 7.4, normal 6.0-8.3
Globulin 2.7, normal 2.0-3.9
A/G Ratio 1.7, normal 1.0-2.5
Alkalin Ohosphotase 38, normal 20-125
AST (SGOT) 29, normal 2-50
ALT (SGPT) 31, normal 2-60

circa 1-9-2004

Triglycerides: 250 (was 233), normal: 130-200
Arsenic - unable to calculate level b/c reactivity of sample was below detectable limit
Lead- unable to calculate level b/c reactivity of sample was below detectable limit
Lyme disease:
---IGG factor: 0.2, with 0.8 or lower listed as "not detected."
---IGM 0.9, with 0.8 to 1.2 listed as "indeterminate" (0.8 would be"negative", and > 1.2 "positive")
Cholesterol 284 (was 282), normal: 130-200
---HDL (high-density, the "good" cholesterol) 61, normal: 40-90
---LDL (low-density, the "bad" cholesterol) 181, normal: less than 100
---VLDL ("very low density?", very bad?) 42, normal: 0-42
The lab report also comes with a "CHD" number (some kinda cardiac arrest risk ratio). Mine is 4.7 on a scale of 4.1-6.6

Regimen as of 060325

2 g IV ceftriaxone q24, intended effect: kill Lyme organisms.

100 mg minocycline q12, intended effect: kill Lyme organisms.

~~10 mg Namenda twice a week, intended effect: reduce involuntary laughing. Side-effect: constipation, so I stopped taking it.~~

DHEA 75 mg, to increase testosterone in pursuit of muscle mass.

Creatine 5 g per day, to reduce cramping and supply muscles with more energy. Three weeks on, one week off.

~~Naltrexone 4.5 mg daily, as an experiment.~~

multivitamin.

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