Rev. 02 November 2008
Created for the purpose of having information online to share with medical consultants.
I am a 57 yo (1942-11-13) tall (6'3") overweight (270#) male employed in retail sales which requires that I stand from 8 am to 6 pm with 2 20 minute breaks (morn and afternoon) and lunch (normally 30-35 minutes.) Until fall 1999, I was riding my bike to work, 6.3 miles each way, two times a week. I also use my bike for errands. Do not own car, rent about once a month, take bus to work most days, walk 1 1/2 - 4 blocks at a time; occasionally ride bike 1-4 miles for errands. Try to be active in doing work around house and outdoors. I do not participate in sports and rarely exersize just to do it.
I have been diagnosed with the following problems and am taking:
DISCONTINUED - Sensory Axonal Polyneuropathy of the lower extremities, taking 300mg Neurontin 6 pills a day to deal with severe pain in feet on rising and after standing at work. Tests
Arthritis, Take 500 mg naprosin 2 times a day to control pain and stiffness in hands
Lactose Intolerance, Take Lactaid or Dairy Aid with meals, recent development
Borderline high blood pressure, 1 Atenolol daily.
Chronic congestion - decongestant twice a day - Drixoral
I also have the following continuing or ordinary conditions
Damage to left knee from two accidents on bike and other falls. Details
Broken left little finger, repaired with 10 tiny titanium screws 2000-2
Very nearsighted, wear tri-focals
Chronic sinus drainage/congestion, 1 Drixeral (or generic sub) 2 times a day
Lower back pain, exercises when needed, Naprosin masks pain
Overweight, 260-270 pounds on 6'3" frame.
I have also been treated in the past for or had
Fungal infection of toe nails since youth accident, one course of Sporinax (3/96) and one of Lamasil (9/97), gone in 9 nails, going in 10th.
All four wisdom teeth removed
Youth: measles, tonsillectomy, adenoidectomy, cracked thumb bone.
Pills being taken and why:
|12/11/00||Meds List||Neurontin 300 mg 0/day||Neuro pain|
|7/30/00||Meds List||Naproxen 500 mg 2/day||Joint inflamation|
|7/30/00||Meds List||Atenolol 50 mg 1/day||Blood pressure,|
|7/30/00||Meds List||Temazepam 15mg rarely (1/mo)||Can't fall asleep|
|7/30/00||Meds List||Disobrom 2/day||Congestion|
|7/30/00||Meds List||Dis=Pseudoephedrine Sulfate 120mg|
|7/30/00||Meds List||Dis=Dexbrompheniramine Maleate 6mg|
|7/30/00||Meds List||Vit+Min.Suppl.one-a-day type 2/day||
Neurology Tests for Polyneuropathy
I began testing in the spring of 2000 after gradually increasing sensory deprivation in my feet, first distinctively noticed in Sept. 1999 while swimming in a pool. Then the 1/3 of both feet nearest the toes felt like I had thick socks on while swimming - lack of sense of water movement and temps. When this began moving further on my feet in the spring of 2000, I asked for consulations.
MRI - Negative, Text of report
Axion Tests - Nerve Conduction Reports Tables of numbers, Graphs
Blood Tests - Negative, Neuromuscular, Being worked on for clean copy (LAB2.WPS)
Spinal Tap - Negative, detailed results on SPINAL.HTM
Second Opinion - Dr. Heitzman Report
Further Blood & Urine Tests - Positive for Lyme disease! Test Results .
Knee and Bike Accidents
During my life, I have had several accidents which involved the left knee or leg.
In college (ca 1963), I gouged my left shin on the corner of an aluminum diving board which I botched a back dive and threw myself backward to avoid hitting my head. Still have visible scar tissue and thin skin damages easily.
In about 1980, I abruptly lost balance and fell from landing on stairs onto stairs, catching my right lower leg in the V between my folding left leg behind my knee, with the result that there was visible crushing of the muscle in the calf of the left leg. I went to a Sports Medicine center and underwent physical therapy to recover the strength in the leg.
In December 1997, I was riding my bike to work and was struck by a pickup. Because I tried to avoid the truck and then launched myself over the hood as it hit me, my primary damage was where the edge of the hood drove the frame of the bike into the inside of my left knee. (Other damage was a few scrapes on my hands from landing.) The knee developed huge black swelling within three hours. ER x-ray exam revealed no serious damage and the black blood worked its day down my leg under the skin to my foot and went away.
In February, 2000, I was riding my bike and dwelling too much on an argument at work. While riding at fair speed on the sidewalk next to a tall hedge, my right handle bar caught in the hedge, steering the front wheel into the hedge, abruptly stopping the bike and throwing me to the concrete before I could react. It was clear immediately from pain and scrapes that my knee and foot had been bruised badly. Only later, when blackness appeared under the skin, did it become clear I had damaged my hand. Later in the week, I was X-rayed, confirmed as having a broken little finger and scheduled for surgery the next day. My finger was opened up, the crack closed with 5 pairs of titanium screws and I underwent Occupational Therapy for two months.
During this time, the polyneuropathy described above, developed into a very painful condition and, as it began to affect how I walked, it caused additional pain in the knee.
When the PN was controlled, I continued to have trouble with my knee and left foot. I had an MRI (see below) The MRI report on my knee was given as There is something on the inside cartilage, not a definite tear. Whats said to be degenerative signal within the meniscus that usually means some kind of disruption or tear if it is symptomatic that is a good reason for orthoscopic surgery.
In January 2001, I had arthroscopic surgery with Dr. Brooks and the knee seems to be repaired.
2000-8-5 Sat - Really blew it today. I took a pill late last night and was quite comfortable striding along the road to work at 8:45 am. But I wanted to take a pill after I got to work and when I checked the little bottle to see I had at least two for the day, I left the bottle on the table, and at that time had no alternates in my back pack (do now!) So I knew from the start of the day that I would be in considerable pain by the end. I think I asked for a ride home instead of stumbling out to the bus, but I am not sure, can't remember.
2000-8-9 Wed - I find it a bit bewildering that my periods of being able to comfortably walk and of floating mentally do not seem to be closely related to the doses of medicine I am taking. Tuesday I was losing protection and floating at the same time about noon and taking another pill did not produce either floating or much relief from the pain.
2000-8-12 Pain in all of feet (not just heels) on rising. Rented car for weekend (less walking). 4 pills yesterday, moderate pain in feet, better walking. Pain in L hip but not in L knee. More walking across store than previously. Spasm/cramp in upper L leg front muscle when shifting position in night, felt like pulling knee in reverse. [Evening] Discovered that damaged toenail on left foot (from pulling wheeled ladder onto it two weeks ago) was missing on dressing for evening. Found it in sock removed from work day.
2000-8-13 [8:00] To bed late (1:30) after Elliott's annual banquet and writing about problem at work. Sharp little pain in foot (L foot, R side of heel, 1"up, 1" fwd from heel) and couldn't get to sleep. 2:40 Took a sleeping pill. Moved to sofa to raise feet and slept solidly until 8:30. Awoke feeling okay. Started to arise and cramped in upper left leg. Sharp pain in L foot still there. [1:40] Went back to sleep after breakfast, loggy from fatigue and sleeping pill; slept until 12:30.
2000-8-20 [1:30] Sun. Really floating as I write this. Woke up late and took two pills because it was so close to time to take the second of the day. I was floating yesterday at work in the early afternoon when I had missed the second pill.
2000-9-6 [2:03 am] - Quite a painful afternoon, feet really sore and L knee bad also although all pills roughly on schedule, which has settled down to every three hours, 6 am - 9 pm. I am noticing small incidents of mental confusion or memory lapse that are different from the rest of my life. Today I took a call early in the morning about a spring and wrote the note on the back of another order. I remembered the call for much of the day but could not remember what it was about or where was any note for most of the day, until I happened to see the paper I wrote on and looked at the other side. In the past I would have forgotten the phone call. I made a handwritten typo of an odd kind - Don Jo being one of our suppliers and I noticed today I had written Do Joe at the top of a form - unusual mistake for me. I came here to write this note and have forgotten the detail about which I was prompted to write, but when I went back to continue work, I found "all the all the" in my sentence, a very unusual error for me.
2000-9-27 [9:55 am] I woke up this morning, late, with a very stiff left foot, the lower leg also being stiff to movement and the left foot lacking sensory accuracy. Limping on a stiff limb. Not sure how much is due to illness and how much due to returning to work after week off. Knee is popping from movement. Flexing foot even after bath is like pushing against stiff leather on sole of foot.
2000-10-01 [6:35 am] Finally some positive results from the months of tests! The last round of blood tests came back positive (6 of 10 markers found) for Lyme disease. Already referred to Infectious Disease specialist, and to county disease following person. Appointment 10/10. Woke up this morning with rather little discomfort in feet on walking, took last pill at midnight. Don't think I took one about 9 pm, did at 6:30. I am wondering if I should delay 6 and 9 and either take together at 9 or just at bed time. Nice to get out of bed without feeling/walking like a cripple. My weight last night was over 280; I can feel it in my shirts being tight. There are some nights where edema in feet is considerable.
2000-10-01 [7:05 pm] Got a call from cousin who had another cousin visiting, Bill Kelsey, whose grandmother is my grandmothers sister. He is 56 and has serious problems like mine in his feet, with pain in morning and lack of sensation. He can stand on dirt but not on any solid surface. He is taking Celebrex and Atenelol. He finds relief from massaging feet and legs and rolling a hard rubber lacrosse ball under his feet. He is doing rounds with VA and podiatrists. He is 6'6", 56 yo. It being in both feet equally has really bugged these people.
2000-10-4 I walked quite a bit today, some pain. I will see tomorrow whether the pain I felt on Monday at work after being fairly comfortable riding my bike about 6 miles on Sunday will be repeated. Tuesday was much better.
2000-10-7 I spent some time looking at internet on Lyme disease and now I am worried about Texas' doctor's ability to work with disease that had 29 cases in state and is embroiled in controversy about treatment of long term effects. [With the CDC definition of Lyme, I don't have it, so have not increased count. Yet there is a doctor in Hurst, mentioned in an e-mail, with "hundreds" of patients and the orthopod says one of the national experts in the disease is in the building. 10-29]
2000-10-18 Much has happened since the last entry. I saw the
Lyme guy, Dr. Sutker and he did 10 days of Doxycycline 100 mg 2/day
with the suggestion that infusion of antibiotic would follow if
no improvement was shown. When I asked him what would be signs of
improvement and he said the numbness would be reduced. I am
somewhat surprised to report that I feel there is improvement
over the weekend and I have asked that we go for another 10 days
rather than infusion - because of the cost to me in time and
hours of infusion - which apparently puts more medicine at work
than oral fighting the stomach acids.
Today I saw the ortho guy, Dr. Brooks, and had my bike stolen. The knee and feet were x-rayed and no obvious bone problems. He wants to do an MRI on the knee after my discussion and gave me simple exercises on the feet and legs.
2000-10-23 Feet and legs continue feeling better. Exercise for knee seems to be helping relieve pain there. Mildly optimistic.
2000-11-01 Scheduled MRI of knee fell apart when it turned out
the place only had closed MRI, not open as I had understood, and
even though it was just knee, wanted almost full enclosure for 30
minutes, when I had trouble with 20 minutes last spring. I said
no. Got crown installed, they hadn't called, I don't think, but
fitted me in. Seeing Sutker next Thursday (no Wed. hours).
Walking to Eckerds and around Casa Linda today were not bad. Comfort level varies. More problems with knee.
2000-11-03 3:45 am - MRI rescheduled for next Wed. early a.m. Reduced neurontin to 3 a day - 9 3 & 9 and seems okay. Got off bus tonight without feeling crippled, notable further change.
2000-12-17 3:03 am - MRI was very comfortable, even though
longer than back. Music available, noise level low. Might be more
threatening doing stuff higher up, back or head, but probably
survivable. Results of MRI show damage in knee that doctor
describes as repairable. The MRI report on my knee was given as
There is something on the inside cartilage, not a definite
tear. Whats said to be degenerative signal within the
meniscus that usually means some kind of disruption or tear if it
is symptomatic that is a good reason for orthoscopic surgery.
I have appointment 12/28.
- I had a bad week of limping with pain in my left foot, perhaps brought on by extensive walking last Sunday doing shopping.
- Worse, I think the symptoms in my feet are coming back. Today after long soak, the pain in my feet was minimal but I felt deadness in toes and balls of both feet. The swelling I noticed in my feet is continuing.
2000-12-20 6:35 am - After building up considerable pain and progressive loss of sensation, I started taking Doxicillin and Neurontin again last night. Feeling less pain this morning.
2001-01-13 - Very little pain so far from the knee surgery yesterday. Dr. Brooks.
2001-02-08 - Two days home with a deep chest cough and no fever. Lots of sleep. Chest cough started Monday. Knee hurting somewhat sometimes. Feet not in good shape, dead on bottom.
2001-04-01 - At the request of infectious disease doctor, I
have stopped taking the oral antibiotic, with the plan that if
the feet show progressive deterioration, we will try I.V.
antibiotic, something I look forward to with little delight - six
weeks with a tube in my arm, doing it at home after training, and
no heavy lifting with that arm.
My sister asked how I was doing and I wrote this: " The feet have settled into a pattern I call "not improving" A comparison that came to my mind a couple of days ago when I was laying on my side is that my feet felt exactly like I had on thin leather slippers with stiff soles. I could even knock the edges of the soles together. Unfortunately, I was barefoot.
I monitor the medical literature via Medscape and have learned that people with a "clean" Lyme disease case - tick, lesion, bullseye bruise, quick treatment - CDC specifications - have a much better recovery situation than people outside the specs - testing positive but sneaky symptoms longer term - which is discouraging. More frustrating is that there is no clean test for "is this stuff gone" since what they are testing is antibodies, which may hang around for years even if the cause has died"
I had an abrupt decrease in problems on the Tuesday after I contacted the doc early in March (the 7th I think) and have seen little change since.
2001-04-14 - I am having some interesting feet problems unlike
those before. I saw Dr. Sutker on 3/29 and he asked that I
discontinue the antibiotic (doxicylin(sp?)) and keep taking the
Nuerontin (sp?), 2 a day, to keep a basis. I took the last of the
doxy on Sunday 4/1. On Wednesday, 4/4, I was so woozy/dizzy/floating
at work that I left early (about 3). Several people asked me
about high blood pressure, but when I tested it at home, it was
lower than recently.
Thursday was my day off and I seemed OK. On Friday, I was mildly dizzy for part of the morning. I felt the dizziness was due to the Neurontin, so I stopped taking it. Wednesday night, 4/11, ran until 1 am trying to solve problems on my wife's computer and I woke up fairly early (6 am) to catch a bus to get a rental car and do errands, and I slept several 1+ hour naps. Thursday night I had great pain in both feet, diagonally from the inside near the heel across the arch to the ball near the little toe. At all times it felt like it was about to cramp. I had a bad night of fitful sleep and was in a fog all day Friday. When I had the same pain Friday evening, I took a neurontin and went to bed at 8 am and slept through the night, getting up early to take Gigi to her MRI. Taking one Neurontin a day now.
2001-05-01 I had to knock off early on Wed. the 25th also. I finally felt I could buy a bike and did so Sunday. Aches and pains on Monday from extensive test ride and climbing, slowly, in attic to do electrical work. Rode bike Monday (last) night to work out aches. I took a bath tonight and stepped in when the water was about an inch deep; when I sat, the water was almost too hot to stay in, but I felt nothing on my feet. About the same foot area is dead to delicate touch. I am not sure it is progressing or just settled in to same.
2001-05-13 Felt dizzy today, after working outside in sun, so may be related to heat. A couple of nights ago when I was laying in bed, I realized that I had no sensation of the bottom of my feet against the sheets. I could feel the top of my feet and ankles, but if I moved my feet it was like there was a hole in the space, with no sensation of the light contact, the sheets would move toward the feet as I shifted my legs, but no sensation appeared at the feet.
2001-05-28 We went to Louisiana for the weekend and I padded down to the pool. Walking on the pebbled concrete left little sensation coming through the feet and swimming felt like I had shoes on - large lumpy areas at the end of my legs. There are some sharp pains and getting up onto feet after laying down or sitting for some time is an exercise in caution.
2001-06-21 Had a puppy in the house for part of last week. Sharp little teeth. Couldn't feel them when she chewed on my toes. Stopped taking Neurontin, was on 1 a day.
2001-06-28 Feet seem to have settled in to no change, with toe half dead to temp and sharp pain, not increasing or decreasing that I can sense. Still awkward on rising from sleep or bus ride. Stopped Neurtontin. Tried stopping Naproxin and decongestant, bad after 24-36 hours, started up again. Left knee still sensitive to kneeling. Riding bike okay, much easier with just a few warm up stretches of legs and back before going.
2001-08-27 The feet continue in stasis, neither the area or the intensity changing. I lack detailed feeling and temperature sensitivity from a point about 1" down heel from the ball of the big toe. Some discomfort and awkwardness upon rising.
2001-08-28 Found an article from Time earlier this year about late research on Lyme. Basically, it says that heavy doses of antibiotic don't treat chronic Lyme.
2001-12-28 In the midst of a relapse/reoccurance of the Lyme symptoms. Began with progress of lack of feeling in feet toward heels that was vague at first and confused by me with reaction to walking back from Lakewood twice in several days. Considerable pain in right hip and knee with muscle quivering in upper leg. Taking Neurontin for pain and back on Doxycyline for Lyme. Not seeing Doctor, did get renewal from Henderson and found remaining renewals on old RX from Sutker.
2002-01-08 Life has gotten more "interesting" in that I have been having sharp pains in my belly, apparently located near a bulge in my muscle wall in line with my belly button. Also, my upper right leg, hip and knee have been very painful at times and now seem to be dead to sensation. I went to doctor yesterday after great pain in morning and a CT scan today determined that the bulge is an ordinary conglomeration, not cancer or intestine, while the pain is coming from a small kidney stone that I am to try and catch in a sieve when I pee. If it doesn't come out in a week or two, a urologist will have to try and snare it! The leg is still undefined. I think it it is probably tied to the Lyme; Henderson thinks it might be a pinched nerve.
2002-01-13 CT scan much more pleasant than first MRI - quiet and non-enclosing. Dr. Allen called with first results as above, but Dr. Henderson went ahead and made appointment for Friday afternoon with urologist who agreed I probably had a stone and was passing it and should take medicine for pain, lots of liquids, see him in three weeks.
2002-02-05 I think I passed the stone into the bladder last night. Visit last Thursday with Frost resulted in another 3 week wait. The same day, I went back to the eye doctor to get the new glasses reworked. I don't know whether she messed up the prescription or the glasses place next door messed the result, but the glasses did not match my eyes (uneven) and my needs - driving glasses that focused 60-70 feet down the road.
2002-02-18 Stopped taking the antibiotic on Monday morning, 18 pills left of 60 so 51 days. Not sure how much progress made, still have considerable lack of sensation in bottom of feet and right leg from knee to hip has odd sensations on front. Am considering connecting up with lady at Doctor's Hospital.
2002-03-31 The numbness in the feet
has come back with even deader sensation. An e-mail from a
national Lyme disease organization says IV is still the choice
for neuro only Lyme, although oral is as effective as IV on other
2004-03-13 I see I have not kept recording progress, or lack of it, for a while. Since the last entry, I have done several rounds of oral Doxycycline, including one started on the eleventh and one last October. Started on Doxycycline again after increasing deadness in feet reached ankles and rest felt like clubs at end of legs at worst times. Like when covers on feet in bed touched lower legs and places on top of feet but not between. At the best, I have partly numb soles of feet, like wearing thick versions of those skinny little sox women use to try on shoes.
2006-03-27 Crashed bike on ramp next to steps at Amon Carter Museum in Ft. Worth, wrenching knee when thrown over handle bars. Knee buckled when tried to mount bike, throwing me to concrete, with further bruising and scraping - more details of day in 2006 Letters. Toe operated on 2004-08-10, which has taken forever to heal still has small crack in scar tissue and still oozes some on some days. Wearing $113 New Balance shoes and Thorlo socks which have effect of keeping feet from slipping inside shoes.
2006-04-25 (from web post) Due to illegal meth lab
guys being able to use pseudoephedrine to make meth, the feds and the states
have placed restrictions on what a person can buy. The federal limit, as of
April 8, is 3.6 gm per day (or 2 packages) and 9 gm per month or 7.5 gm per
month from mail order locations.
The daily dose as recommended on packages is 2 per day, 240mg. The product I used daily for chronic congestion (Drixoral Cold and Allergy) comes in 10, 20, and 30 tablet packages lasting 5, 10, or 15 days. However, because the many products take space behind the pharmacy counter where they are now required to be kept, most places only stock the 20 tablet size containing 2.4 gm. This means that two packages exceed the 3.6 gm limit, so you can only buy one at at time.
To make this more exciting, Texas (where I live), put its own limit of 6gm or 2 packages per month, which means that if you can find a place that sells both 20 and 30 tablet packages, you still only get 6 gm or 50 tablets, a 25 day supply to last a month!
Even more exciting, Wal-Mart's computer programmers screwed up, and are imposing a 3.6 gram per MONTH limit. Since I bought two packages back on March 8 before the limit was lowered from 5gm, the computer thinks I have reached my limit till May 8!! And they are the cheapest place around.
Meanwhile, doctors and pharmacists have both told me that the solution is to shop different stores since the bureaucracy has not linked the stores.
The proper answer turns out to be to shop the internet where the federal limit applies, giving a month's supply for only slightly more than the Wal-Mart price. Which of course sends the business out of state.
2006-09-30 Got a mobility scooter in mid-summer after going back to neurologist from original Lyme diagnosis after refusal from two orthos and Dr. Henderson. Toe seems to finally be closing in and healing.
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