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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
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Posted: Sun Apr 27th, 2008 21:04 |
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This is a mid-cycle update...
Saturday, 26Apr08 ~ 81 days in Phase 2 ~ 19 days so far in this cycle ~
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Light Exposure
Stayed @ home most of the time in low to medium lux, without NoIRs.
Nighttime in car: {11}{14} 20 min, w/ hat + 2% NoIRs..
Indoors, medium lit: {11}{14} 3 hrs, w/ hat + without NoIRs.
Computer use, mostly without 40% NoIRs: {cycle day} total number hours per day
{10} 11, {11} 11, {12} 10, {13} 9, {14} 7, {15} 4, {16} 7, {17} 5, {18} 10, {19} 5.
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Symptoms • All symptoms tolerable •
4 • sleep (up at night, sleeping during day) days:{10} thru {13}
4 • muscles (twitches/tension/pain: neck/back/arms) days:{10}{13} thru{19}
4 • joints (pain; different joints at different times; hip, knee, finger, TMJ) days:{11}{13} thru {16}
4 • sinuses (heavy drainage; irritated/sore throat) day:{12}
3 • skin(irritation around front of neck, very itchy around ankles) days:{14} thru {18}
Other ‘baseline’ symptoms (From most to least noticeable)
Sleep rhythm off (up nights, sleep days); minor neuro symptoms; jaw clenching; fatigue; sinus drainage; irritation/sore throat; dry/peeling lips; joints ‘popping’ with minor movement; chemical sensitivity; dizzy standing up; gummy/irritated eyes after sleeping; skin: face dry, various minor eruptions, random itchiness (histamine); light sensitivity.
Sleep {cycle day} total number hours per day
{10} 16, {11} 5, {12} 5, {13} 12, {14} 6, {15} 14, {16} 12, {17} 8, {18} 10, {19} 13.
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Comments
> I plan to continue to stretch this cycle out, waiting until after the resolution of a major (stressful) family related situation that will be in process for another week.
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Something to Celebrate! 
Great going @ DMM 2008 to Team Autoimmunity Reseaerch Foundation!!!
Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
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Posted: Tue May 6th, 2008 02:58 |
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Now on a (hopefully) short MP vacation...
Monday, 5May08 ~ 83 days on Phase 2 ~ day 6 of MP vacation
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Light Exposure
Stayed @ home most of the time in low to medium lux, with 40% NoIRs as needed.
Nighttime in car: two times 20 min, w/ hat + 2% NoIRs.
Indoors, medium lit: two times 3 hrs, w/ hat + without NoIRs.
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Symptoms • All symptoms tolerable •
4 • joints (pain; intermittent; hip, fingers) about 30% of the time
4 • muscles (twitches/tension/pain: neck/back/arms) about 30% of the time
4 • sinuses (heavy drainage; sinus headaches) a couple days
3 • skin(unusually itchy around ankles, on shins) a couple of days
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Comments
> On MP 'vacation' due to an extension of the end point of the family situation needing my support and availability. Stopped regular MP medications on April 29th. (This is at the 10 month point in my time on the MP.) Still following all guidelines for light/D avoidance.
> Sleep is now fairly normal with 7-8 hours from around 12am to 7-8am.
> Symptoms have minimised with the exception of the incident with the right hip.
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Thank you! 
Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
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Posted: Mon Jun 2nd, 2008 09:05 |
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Sunday, 1Jun08 ~ 31 days on MP break ~ back on Benicar starting today
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Light Exposure
Staying @ home most of the time in low to medium lux, with 40% NoIRs as needed.
________________________________________________________________
Symptoms
2 • back pain (left side under shoulder blade) during May - MP break
2 • sinuses (constant drainage, irritated sore/throat) during May - MP break
2 • vision (both close and far vision is blurred) during May - MP break
Other ‘baseline’ symptoms (From most to least noticeable)
Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; deep fatigue in afternoons; skin: face dry, various minor eruptions, random itchiness (histamine). ________________________________________________________________
Comments
> I had some inflammation issues during my break and one of the doctors I don’t usually work with from my HMO decided to order every test in the book, including a CT Scan.
> From the blood tests, my ALT came up a little high at 51 units/L (ref range 5-35 units/L). Which is a really good reason to get back on the Benicar right away. We will retest this in 4-6 weeks.
> Also, two UA tests run two weeks apart both showed trace amounts of blood present in the urine. A culture did not show infection, but something is not happy somewhere in the UT because the tests for Epithelial Cells & Bacteria also reported as “FEW.” I hope that whatever this is will also resolve once back on the protocol.
> Since I knew from my reading on the MP site that a CT Scan was going to mean 50 times the ionizing radiation of one normal X-ray, I did not lightly decide to submit to the test. After weighing the risk of the radiation over the benefit of perhaps learning the source of these undiagnosed abdominal symptoms that have come and gone for a couple of years, and considering that it would be at no expense to me, I went ahead and had the scan done. The results should be available within the next week.
> One doctor (my MP doctor) decided on a mild shingles diagnosis from the symptoms at the beginning of my break and the other doctor (my HMO doctor) was not convinced. Whatever it was, it seemed to respond to the L-Lysine (1000mg three times per day). The ‘nerve pain’ on the back, lower left rib cage still is present when standing or reclining, but it is more a dull ache than anything. That same area feels ‘tingly’ or itchy on and off. Also, when the iodine infusion was released during my CT Scan that specific area burned for a few moments.
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Something to Celebrate 
During my 'break' I noticed that my light sensitivity was very mild, my sleep patterns were wonderfully normal, and my mood was great even with trips to doctors during the day a couple of times.
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
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Posted: Mon Jun 9th, 2008 04:09 |
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Sunday, 8Jun08 ~ 7 days into MP restart ~ back on Minocycline 5Jun08
________________________________________________________________
Light Exposure
Staying @ home most of the time in low to medium lux, without 40% NoIRs mostly.
Daytime in car: Mon 2hrs, Wed 2hrs, Sun 30 mins; w/ hat + 2% NoIRs
Indoors brightly lit: Mon 2hrs, Wed 2 hrs; w/ hat + 10% NoIRs
Nighttime in car: Mon 20 mins, Fri 20 mins; 2% NoIRs
________________________________________________________________
Symptoms
4 • muscles (spasms/tension/pain: back/neck/ legs) Mon, Fri
4 • vision (close and far vision is blurry) daily
2 • sinuses (drainage; irritated/sore throat) daily
Other ‘baseline’ symptoms (From most to least noticeable)
Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; deep fatigue in afternoons; skin: face dry, various minor eruptions, random itchiness (histamine). ________________________________________________________________
Comments
> So far, four days of Minocycline @ 50mg every other day. I started at 50mg because my past experience was that 25mg did not modulate the immune response enough to allow an optimal ebb and flow of IP
> Being back on the Benicar is helping me to feel less inflammation symptoms. However, there seems to be more temperature deregulation events (heat waves).
> CT Scan findings were mostly “unremarkable” with exception of two apparently minor items. The first is a 3mm lesion in the right kidney. I have no idea if there is any action recommended for that. I have an appointment this week to discuss the other minor finding that I will not even comment on at this point because I don’t understand enough to do so.
> I am still experiencing ‘nerve pain’ on my back, along the bottom of my rib cage when standing or reclining, but it continues to be more a dull ache than anything. That same area feels ‘tingly’ or itchy on and off.
> The changes in my vision came so unexpectedly that I am fairly sure it is inflammation. The OD has scheduled another exam for the 18th to see if there is an improvement after more time on the Benicar. If not, I will be needing to get glasses in order to read the signs on the freeway and street signs as well. I have never had difficulty with my far vision before now, so it's really disconcerting for me.
> Light sensitivity went from minimal to significant starting around Friday (second day on Mino).
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Something to Celebrate 
The new MP 'community' site for us to enjoy (outside of the member reporting functions here on this study site).
Many thanks to John McDonald for graciously volunteering to moderate our new MP-lifestyles.org forum!
Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
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Posted: Mon Jun 16th, 2008 01:31 |
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Sunday, 15Jun08 ~ 15 days into MP restart ~ back on Minocycline 5Jun08
________________________________________________________________
Light Exposure
Staying @ home most of the time in low to medium lux, without NoIRs.
Daytime in car: Wed 30 mins, Thu 1 hrs; Fri 30 mins, w/ hat + 2% NoIRs
Indoors brightly lit: Wed 1 hrs, w/ hat only; Fri 30 mins, w/ hat + 10% NoIRs
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Symptoms
4 • muscles (spasms/pain: torso/legs) Wed (caused by sun/light exposure )
Other ‘baseline’ symptoms (From most to least noticeable)
Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; skin: various minor eruptions, random itchiness. ________________________________________________________________
Comments
> Vision seems to be improving. 
> Inflammation symptoms are all back to baseline. 
> Light sensitivity is back at pre-break levels. 
________________________________________________________________
Something to Celebrate 
Contagious Joy! ~ ~ One week closer to wellness!
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

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Posted: Sun Jun 29th, 2008 11:46 |
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Saturday, 28Jun08 ~ 95 days in Phase 2 ~ 10 days in this cycle ~
________________________________________________________________
Light Exposure
Stayed @ home most of the time in low to medium lux, without NoIRs.
No daytime trips this cycle.
________________________________________________________________
Symptoms
6 • muscles (spasms/pain: torso/legs) on days: {3}{4}
Other ‘baseline’ symptoms (From most to least noticeable)
Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; skin: various minor eruptions, random itchiness.
Sleep {cycle day} total number hours per day
{1} 10, {2} 9, {3} 10, {4} 10, {5} 11, {6} 12, {7} 8, {8} 12, {9} 10, {10} 8.
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Comments
> Dropped the daily L-Lysine as I am not seeming to need it currently. Only adding cal/mag supplement when normal diet is lacking (3-5 days/week).
> Higher temperature weather led to higher symptoms days 3-4 (only air conditioner is a window unit in the home office).
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Something to Celebrate! 
Felt really good & pain free on Friday...
It’s nice to have a good day after those peak IP days. 
Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
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Posted: Tue Jul 8th, 2008 22:17 |
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Tuesday, 8Jul08 ~ 105 days in Phase 2 ~ 10 days in this cycle ~
________________________________________________________________
Light Exposure
Stayed @ home most of the time in low to medium lux, without NoIRs.
No daytime trips this cycle.
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Symptoms
6 • neuro (hypersensitivity, cognitive) on days: {5}{6}{7}{10}
4 • lymph (swelling, nausea on TMJ movement) on day: {7}
Other ‘baseline’ symptoms (From most to least noticeable)
Moderate neuro symptoms; skin: oily, gritty, various minor eruptions, random itchiness; gummy/irritated eyes after sleeping; irritation/sore throat; sinus drainage.
Sleep {cycle day} total number hours per day
{1} 10, {2} 10, {3} 12, {4} 9, {5} 8, {6}10, {7} 10, {8} 7, {9} 13 {10} 2.
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Comments
> Reintroduced the daily L-Lysine as I developed a canker sore on the inside of my lower lip after being off it for a week.
> Skin is changing with more oil and 'grit' especially on the face. Hair has evenly thinned to less than 50% of 'normal' ... guess the hair follicles are all 'resting' at the same time! 
________________________________________________________________
Something to Celebrate! 
Felt really good & pain free on day 8.
Them bugs are a dyin'. 
Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
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Posted: Sat Jul 19th, 2008 09:35 |
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Friday, 18Jul08 ~ 115 days in Phase 2 ~ 10 days so far in this cycle ~
________________________________________________________________
Light Exposure
Stayed @ home most of the time in low to medium lux, with 40% NoIRs.
No daytime trips this cycle.
________________________________________________________________
Symptoms
6 • neuro (hypersensitivity, cognitive) levels by day: 4/6/4/2/4/4/4/4/2/2
4 • esophageal (feeling of tightness, hard to swallow) on day: {6}
Other ‘baseline’ symptoms (From most to least noticeable)
Moderate neuro symptoms; increased light sensitivity; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; sticky palms of hands; skin: oily, gritty, various minor eruptions, random itchiness; gummy eyes after sleeping.
Sleep {cycle day} total number hours per night
{1} 13, {2} 7, {3} 9, {4} 8, {5} 8, {6}6, {7} 11, {8} 10, {9} 11 {10} 10.
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Comments
> With the increase in neurological IP/herx, I was not able to sleep deeply on my own and have needed to go back to taking 6-12mg hydroxyzine and .67mg Valium at bedtime.
> Due to the hotter weather locally, it has been more difficult to determine if changes in the antibiotic doses are the cause of my increased neurological IP. So, I will be stretching out this cycle just a little while longer before progressing into Phase 3 next cycle.
> Some of the neuro IP has proven to be from an increase in light sensitivity because on day {2}, when I returned to wearing the 40% NoIRs at the computer, the worst of the symptoms began to resolve. 
________________________________________________________________
Something to Celebrate!
Life is good. My latest 25D test just came back at 17 ng/mL.
Start Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

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Posted: Tue Jul 29th, 2008 10:57 |
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Monday, 28Jul08 ~ 125 days in Phase 2 ~ 20 days total in this cycle ~
________________________________________________________________
Light Exposure
Stayed @ home most of the time in low to medium lux, without 40% NoIRs.
No daytime trips this cycle.
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Symptoms
6 • neuro (hypersensitivity, cognitive) levels by day: 2/4/6/4/4/2/0/2/2/4
4 • muscle (pain, spasms) levels by day: 4/2/0/0/0/0/2/4/4/0
4 • eyes ( feeling irritated, gritty, loss of lower eyelashes) on days: {16-20}
Other ‘baseline’ symptoms (From most to least noticeable)
Moderate neuro symptoms; increased light sensitivity; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; tire easily from simple activities; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping.
Sleep {cycle day} total number hours per night
{11} 13, {12} 10, {13} 8, {14} 9, {15} 9, {16} 12, {17} 11, {18} 12, {19} 4, {20} 8.
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Comments
> Continued with an extension of this cycle with Minocycline @ 25mg q48h.
> Due to the hotter weather locally, it continues to be difficult to determine if the lower dosage of Mino is a factor in my increased neuro IP.
> Muscle pain and spasms seem to be tied directly to light activities such as cooking and turning to reach objects to the side, such as the bed lamp.
> Even with more light reducing measures in place, the neuro IP is still a significant source of symptoms with the (new) throat tightness, hypersensitivity and cognitive issues coming and going with the abx cycles.
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Something to Celebrate!
Our MP nurse-moderators rock! Life is good.
Start Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
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Posted: Sat Aug 9th, 2008 06:25 |
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Thursday, 7Aug08 ~ 8 days in Phase 3 ~
________________________________________________________________
Light Exposure
Stayed @ home most of the time in low to medium lux, without 40% NoIRs.
No daytime trips this cycle.
________________________________________________________________
Symptoms
6 • muscle (pain, spasms, fatigue) levels by day: 6/2/3/5/4/4/6/4
6 • neuro (hypersensitivity, cognitive) levels by day: 6/6/6/6/4/2/6/6
4 • lymph (stiff neck, swelling) levels by day: 2/2/4/4/4/4/2/2
4 • eyes (feeling irritated, gritty, loss of lower eyelashes) on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Moderate neuro symptoms; down/bedrest more, increased light sensitivity; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; tire easily from simple activities; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping.
Sleep {cycle day} total number hours per night
{1} 10, {2} 14, {3} 13, {4} 12, {5} 9, {6} 12, {7} 6, {8} 13.
________________________________________________________________
Comments
> Stayed on extension of previous cycle for two more days before starting Phase 3 on July 31st. Decided to start new cycle after 8 days due to increasing levels of intolerable hypersensitivity leading to insomnia.
> More bed rest and longer sleeping times (though not on the ‘correct’ schedule) seem to be necessary to minimise the muscle pain/spasms.
> I have begun to use gentle soaping/rinsing of my eyelash areas daily for the blepharitis flare.
> I choose to take Benicar at q4h through-out this entire cycle because I was already at a less than comfortable level of neurological IP/herx moving into Phase 3. This has really helped keep things nearer to the tolerable range for me.
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Something to Celebrate!
Finally! I'm in on Phase 3! Life is always good.
Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
Last edited on Sat Aug 9th, 2008 06:31 by Joyful
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

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Posted: Tue Aug 19th, 2008 09:50 |
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Sunday, 17Aug08 ~ 18 days in Phase 3 ~
________________________________________________________________
Light Exposure
Stayed @ home most of the time in low to medium lux, without 40% NoIRs.
No daytime trips this cycle.
________________________________________________________________
Symptoms
6 • muscle (pain, spasms, fatigue) levels by day: 2/2/2/2/4/4/4/4/4/4
6 • neuro (hypersensitivity, cognitive) levels by day: 6/4/4/4/6/6/6/6/4/4
6 • lymph (stiff neck, swelling) levels by day: 2/6/4/4/6/6/6/4/4/4
4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Moderate neuro symptoms; difficult to get to sleep; tire easily from simple activities; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; light sensitivity; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping.
Sleep {cycle day} total number hours per night
{1} 10, {2} 9, {3} 9, {4} 6, {5} 11, {6} 4, {7} 7, {8} 10, {9} 10, {10} 3.
________________________________________________________________
Comments
> Stayed low activity to minimise the muscle pain/spasms, but didn’t get as much sleep. More hours at the computer.
> Continued gentle soaping/rinsing of eyelash areas daily for the blepharitis flare.
> Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable.
________________________________________________________________
Something to Celebrate!
Community life is happening over on MP-Lifestyles.org Thanks, I needed that.
Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
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Posted: Thu Aug 28th, 2008 12:31 |
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Wednesday, 27Aug08 ~ 28 days in Phase 3 ~
________________________________________________________________
Light Exposure
Stayed @ home most of the time in low to medium lux, without 40% NoIRs.
Daytime trips on days {1} and {9} this cycle. Very sensitive to sunlight in eyes, on skin.
Found I needed both wraparound on top of fitover 2% NoIRs for daytime in car.
________________________________________________________________
Symptoms
8 • muscle (pain, spasms, fatigue) levels by day: 4/4/4/6/6/6/4/2/6/8
8 • neuro (hypersensitivity, cognitive) levels by day: 6/2/4/4/4/4/4/4/6/8
6 • lymph (stiff neck, swelling) levels by day: 2/2/2/6/6/6/4/4/4/2
4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Moderate neuro symptoms; difficult to get to sleep; tire easily from simple activities; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; light sensitivity; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping.
Sleep {cycle day} total number hours per night
{1} 12, {2} 6, {3} 15, {4} 6, {5} 14, {6} 7, {7} 11, {8} 7, {9} 11, {10} 8.
________________________________________________________________
Comments
> Trip on day 1 was avoidable, but enjoyable. Stayed low activity from then on until doctor’s appointment on day 9, awoke on day 10 to nasty stabbing pain behind right shoulder blade.
> Continued gentle soaping/rinsing of eyelash areas daily for the blepharitis.
> Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable.
________________________________________________________________
Something to Celebrate!
2 weeks to the 6th Annual Congress on Autoimmunity Thanks, Trevor & team for all your hard work!
Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
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Posted: Sun Sep 7th, 2008 12:52 |
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Saturday, 6Sep08 ~ 38 days in Phase 3 ~
________________________________________________________________
Light Exposure
Stayed @ home; most of the time in low to medium lux, without NoIRs.
________________________________________________________________
Symptoms
6 • muscle (pain, spasms, fatigue) levels by day: 6/4/2/4/6/6/4/4/4/4
6 • neuro (hypersensitivity, cognitive) levels by day: 6/6/4/4/4/4/4/4/4/2
6 • lymph (stiff neck, swelling) levels by day: 2/6/2/4/6/4/4/4/4/4
4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Tire easily from simple activities; light sensitivity; dizziness on standing; any activity involving movement leads to feeling heartbeat in one or both ears; numbness in arms upon waking in morning; transient pain in finger joints; transient twitching in forearm/quad muscles; gummy/stinging eyes after sleeping; feeling of throat tightening; difficult to get to sleep; skin: oily, gritty, various minor eruptions, random itchiness, burning on bottoms of feet in morning.
Sleep {cycle day} total number hours per night
{1} 12, {2} 8, {3} 11, {4} 12, {5} 11, {6} 10, {7} 6, {8} 16, {9} 14, {10} 12.
________________________________________________________________
Comments
> This is the third cycle at this level and I am still experiencing plenty of IP. One indication is that even on the last couple days of this cycle I have had lymph swelling under my jaw line, along with lymph swelling in other areas as well.
> Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. Tried less (q6h) Benicar on days {6} thru {9} and it didn't seem worth it yet. More coordination issues (spilling things) and more cognitive problems (mental errors) than I want to deal with while having fun on this newly developing 'MPKB Project.'
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Something to Celebrate!
New MP Knowledge Base Project wiki Thanks to everyone considering helping out!
Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Thu Sep 18th, 2008 08:35 |
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Tuesday, 16Sep08 ~ 48 days in Phase 3 ~
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Light Exposure
Staying @ home; Most of the time in low to medium lux, without NoIRs.
One daytime trip to doctors on day (10}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat; all direct sun exposure was just a few brief minutes to get from vehicle to buildings and back.
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Symptoms
4 • muscle (pain, spasms, fatigue) ~ levels by day: 2/4/4/2/4/2/2/0/4/0
4 • neuro (hypersensitivity, cognitive) ~ levels by day: 2/4/4/4/4/2/4/4/4/4
4 • lymph (stiff neck, swelling) ~ levels by day: 2/2/2/4/4/2/2/2/4/2
4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Tire easily from simple activities; light sensitivity; dizziness on standing; any activity involving movement for more than a couple minutes leads to feeling my heartbeat in one or both ears; numbness in arms upon waking in morning; transient pain in finger joints; transient twitching in forearm/quad muscles; gummy/stinging eyes after sleeping; feeling of throat tightening; difficult to get to sleep; skin: oily, gritty, various minor eruptions, random itchiness, burning on bottoms of feet in morning.
Sleep {cycle day} total number hours per night
{1} 12, {2} 11, {3} 10, {4} 6, {5} 12, {6} 6, {7} 11, {8} 14, {9} 6, {10} 13.
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Comments
> Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. Tested using less (q6h) on day {9} and again experienced more coordination issues (spilling things), inflammation (aches and pains) and cognitive problems (mental errors).
> Since entering Phase 3 two months ago I have observed a minor re-occurrence of a Bell's Palsy symptom I first experienced in 1980 following a likely Bb exposure. The symptom is that my right eye is open more than my left eye. Interesting.
> This is the fourth cycle at this level and I still have enough IP to want to stay at my current (very low) antibiotic dosage levels.
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Something to Celebrate!
Porto presentations were a great success! Congratulations to 'Team MP!'
Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Tue Oct 7th, 2008 04:51 |
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Monday, 6Oct08 ~ 68 days in Phase 3 ~
Something to Celebrate!
The Marshall Protocol has given me hope for recovery. Much thanks to 'Team MP!'
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Light Exposure
Staying @ home; Most of the time in low to medium lux, without NoIRs.
One daytime trip to visit with family on day (18}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat; all direct sun exposure was in vehicle (driving into sunset) and indirect daylight through windows in home. I did have painful leg cramps a couple of hours afterwards.
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Symptoms
6 • muscle (pain, spasms, fatigue)
~ levels by day: 2/2/2/2/2/2/2/2/2/2/2/2/2/2/2/2/2/6/0/0
7 • neuro (hypersensitivity, cognitive, insomnia)
~ levels by day: 4/2/2/2/6/6/6/4/7/6/6/4/4/4/4/6/4/4/2/2
6 • lymph (stiff neck, swelling)
~ levels by day: 0/4/4/2/4/6/6/4/6/6/6/6/4/3/4/4/4/4/2/2
4 • eyes (feeling irritated, gritty, red at base of eyelashes)
~ on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Tire easily from simple activities; light sensitivity; dizziness on standing; any full body movement for over a minute leads to feeling my heartbeat in one or both ears; transient twitching in forearm/quad/other muscles; gummy/stinging eyes after sleeping; difficult to get to sleep; skin: oily, gritty, various minor eruptions, random itchiness, numbness in arms upon waking in morning; burning on bottoms of feet in morning; transient pain in finger joints; feeling of throat tightening.
Sleep {cycle day} total number hours per night
{1} 8, {2} 11, {3} 6, {4} 11, {5} 8, {6} none, {7} 4, {8} 8, {9} 8, {10} none,
{11} 15, {12} 5, {13} 12, {14} none, {15} 17, {16} 9, {17} 10, {18} 13, {19} 8, {20} 8.
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Comments
> Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. I probably could have spread out the Benicar doses more, but I was happy to continue with a period of 'lighter' symptoms right now.
> This is the sixth cycle at this level and I still have enough IP to want to stay at my current (very low) antibiotic dosage levels.
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Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Sat Oct 18th, 2008 06:09 |
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Thursday, 16Oct08 ~ 78 days in Phase 3 ~
Something to Celebrate!
I do not feel discouraged at all. I'm thankful for my friends at mp-lifestyles.org too!
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Light Exposure
Staying @ home; Most of the time in low to medium lux, without NoIRs.
One daytime trip to visit with doctor on day {3}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat; all direct sun exposure was in vehicle. I had painful cramps around ribcage a couple of hours afterward exposure.
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Symptoms
6 • muscle (pain, spasms, fatigue) ~ levels by day: 2/2/4/6/2/2/4/2/2/4
8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/4/6/4/8/0/4/2/2/4
6 • lymph (stiff neck, swelling) ~ levels by day: 6/4/4/2/6/6/4/6/2/4
4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Tire easily from simple activities; light sensitivity; dizziness on standing; any full body movement leads to feeling my heartbeat in one or both ears; numbness in arms upon waking in morning; difficult to get to sleep; gummy/stinging eyes after sleeping; skin: oily, gritty, various minor eruptions, random itchiness; transient twitching in forearm/quad/other muscles; burning on bottoms of feet in morning.
Sleep {cycle day} total number hours per night
{1} 6, {2} 6, {3} 6, {4} 8, {5} 8, {6} 12, {7} 6, {8} 20, {9} 8, {10} 9.
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Comments
> Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable.
> I took an 'electronic holiday' from the computer on days {8}{9}{10}. I found I was able to sleep more without the time on the computer. On day {10} I tried to do more than rest in bed and found it was very taxing in my current state.
> I have new symptom to track with acne lightly sprinkling all of my lower back. Looks kind of like the measles.
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Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Mon Oct 27th, 2008 14:39 |
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Sunday, 26Oct08 ~ 88 days in Phase 3 ~
Something to Celebrate!
PaulAlbert is doing a great job leading the charge over on the mpkb.mp-dev.com site.
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Light Exposure
Staying @ home; Most of the time in low to medium lux, without NoIRs.
One daytime trip for medical tests on day {8}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat.
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Symptoms
6 • muscle (pain, spasms, fatigue)
~ levels by day: 6/4/4/2/6/4/4/2/2/4
6 • neuro (hypersensitivity, cognitive, insomnia)
~ levels by day: 2/4/4/4/6/4/4/2/2/4
6 • lymph (stiff neck, swelling)
~ levels by day: 4/4/4/6/4/4/2/2/2/4
4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Tire easily from simple activities; light sensitivity; dizziness on standing; any full body movement leads to feeling my heartbeat in one or both ears; ears hurt and feel swollen on the inside; swelling around upper right molar; numbness in arms upon waking in morning; difficult to get to sleep; gummy/stinging eyes after sleeping; skin: oily, gritty, various minor eruptions, random itchiness; transient twitching in forearm/quad/other muscles; burning on bottoms of feet in morning.
Sleep {cycle day} total number hours per night
{1} 11, {2} 7, {3} 7, {4} 12, {5} 7, {6} 13, {7} 14, {8} 7, {9} 13, {10} 8.
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Comments
> No problems returning to Benicar at q6h this cycle. Or maybe I'm just getting more stoic about the neurological IP/herx? 
> Any time I attempt full body movement or standing/bending, etc., it leads to feeling my heartbeat in one or both ears, an awareness of muscle weakness, and sometime shortness of breath as well. My ears hurt and feel swollen on the inside. There has also been swelling around an upper right molar since changing out one of the antibiotics.
> My sleep schedule is upside-down again.
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Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Thu Nov 6th, 2008 11:53 |
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Wednesday, 5Nov08 ~ 98 days in Phase 3 ~
Something to Celebrate!
Dr. Marshall's being honored with a keynote at Gene 2008 - China in December!
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Light Exposure
Staying @ home; Most of the time in low to medium lux, without NoIRs.
________________________________________________________________
Symptoms
8 • lymph (stiff neck, swelling)
~ levels by day: 2/6/8/6/4/4/4/6/4/4
6 • muscle (pain, spasms, fatigue)
~ levels by day: 2/2/4/6/6/4/2/2/2/4
6 • neuro (hypersensitivity, cognitive, insomnia)
~ levels by day: 2/4/4/2/6/2/2/2/2/2
4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Tire easily from simple activities; light sensitivity; dizziness on standing; ears hurt and feel swollen on the inside; numbness in arms upon waking in morning; difficult to get to sleep; any full body movement leads to feeling my heartbeat in one or both ears; swelling around upper right molar; gummy/stinging eyes after sleeping; skin: oily, gritty, various minor eruptions, random itchiness.
Sleep {cycle day} total number hours per night
{1} 10, {2} 10, {3} 6, {4} 10, {5} 9, {6} 11, {7} 9, {8} 9, {9} 10, {10} 11.
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Comments
> After getting my last lab tests, I felt I should go back to Benicar at q4h on day {4} of this cycle. I tried ramping up the Deme from 25mg to 50mg, but it seemed that the IP/herx was too strong, especially in the light of the recent blood work.
> I have had three times this cycle where I was actually participating in a larger social gathering and I was enjoying myself. This was very special to me. Yes, I had to recover for a day or so each time, but it was worth it.
> It is possible that I caught a mild case of the flu from one of people over to my house last weekend... it didn't really have the same 'signature' symptoms as IP. In any case, over the past 3 days I have tried to get more bed rest and watch my diet carefully, which seems to be helping.
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Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Sun Nov 16th, 2008 18:43 |
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Saturday, 15Nov08 ~ 108 days in Phase 3 ~
Something to Celebrate!
Life is good! My heart is full of Joy!
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Light Exposure
Staying @ home; Most of the time in low to medium lux, without NoIRs.
Did venture out in late afternoon on day {9} to run a few urgent errands.
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Symptoms
8 • muscle (pain, spasms, fatigue)
~ levels by day: 2/4/6/8/6/4/2/2/2/6
6 • neuro (hypersensitivity, cognitive, insomnia)
~ levels by day: 2/4/4/4/6/4/4/6/4/4
4 • lymph (stiff neck, swelling)
~ levels by day: 2/4/4/4/2/4/2/2/2/4
4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all}
Other ‘baseline’ symptoms (From most to least noticeable)
Marked increase in back pain when active, i.e., doing food prep in kitchen; ears hurt and feel swollen on the inside; abdominal cramps; post nasal drip; skin: more itchy, oily, gritty, various minor eruptions; swelling around upper right molar; gummy/stinging eyes after sleeping; tire easily from simple activities; light sensitivity; dizziness on standing; numbness in arms upon waking in morning; difficult to get to sleep.
Sleep {cycle day} total number hours per night
{1} 8, {2} 13, {3} 10, {4} 8, {5} 17, {6} 8, {7} 8, {8} 10, {9} 8, {10} 15.
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Comments
> I'm feeling just good enough to attempt some long-neglected tasks around the house and then I over-do to the point of having to rest up again. Sigh.
> I did brave driving again on day {9}. I seemed to do ok, but I was very cautious, especially considering I haven't driven our truck (or car) for many months due to my concerns over slow-reflexes and vision issues. It felt good to be out under my own power again.
> Itchy shins have returned. I'm trying swabbing some apple cider vinegar on them after my showers and it seems to be keeping it under control.
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Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful Board Staff

| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Mon Nov 17th, 2008 10:03 |
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Diet Update 
Much of what I wrote about my diet last year is the same, with the exception that I have just been took tired to cook during the high IP/herx since starting Phase 3 this summer. So, I eat cold left-overs more often and some kind of take-out food 3-4 times a month.- Meats. I probably eat 1-2 ounces a day of protein from free-range, organic meats including chicken and grass-fed bison. Less common meats would be beef, turkey or lamb. I enjoy using the leftover bones, etc. to make homemade stocks for cooking sauces, soups, and as the liquid for making rice.
- Dairy. Most days I eat either some slices of organic provolone cheese or I make a grilled cheese sandwich using raw, organic, grass-fed cow’s milk cheese (I order this cheese in quantity from the farm and have many months worth in the freezer). I use a little less than a cup of raw organic milk from grass-fed cows almost daily (taking a week off here and there). I enjoy the milk mostly on sprouted grain cereal.
- Sauces/Soups. At least 2-3 times a month I will take a few cups of stock from the freezer and prepare enough sauce to last all week. It will usually have the basic all-purpose spices, a bit of cayenne powder, a cup of wine, some corn starch to thicken it, some chicken fat or olive oil for flavor, and a jar of spaghetti sauce for body (all organic, of course). In the winter I also make chicken or split pea soups.
- Vegetables. The freezer has a number of large packages of frozen organic items including broccoli, petite green peas, snap peas, green beans, cauliflower, and mixed vegetables. I add one or two cups of these to my main meal on the days I cook. Some weeks, when I am feeling more up to it, or can talk my husband into helping, we make a salad with red leaf lettuce, carrots, onions, cucumbers, red bell peppers, and zucchini.
- Nuts. I enjoy nibbling on handfuls of almonds, pistachio nuts, or cashews, pretty much every day.
- Bread/Grains. Our usual loaf bread or bagels are sprouted types from Alvarado Street Bakery. A couple of days most weeks I either have toast from these or a grilled cheese sandwich using this bread. Some days I have a one cup bowl of cereal (Ezekiel sprouted cinnamon & raisin) with milk.
- Pasta. A couple times a month I prepare a full package of organic whole wheat pasta (al dente) that I then toss in cold-pressed virgin olive oil and store in the refrigerator for use in salads and sauces during the week (usually a cup per serving). A least once a month, I make up two boxes of Annie’s organic white cheddar cheese and macaroni to use as a base for a vegetable & meat dish for dinner.
- Other Grains. Maybe twice a month I will have a bowl of organic oatmeal with SteviaPlus and coconut oil added in for flavor. Once or twice a month we make a large pot of organic jasmine rice, using stock for the liquid. Occasionally we make a crock-pot stew with barley or rice in it.
- Fruit. I eat an organic fuji apple with cheese slices 3-5 times per week. Maybe one or two organic bananas per week. A couple of handfuls of organic (no added oils) raisins or grapes some days. We do enjoy black olives in our salads from time to time. Very rarely I will use a fruit spread on my toast. Once or twice a week I will make a frozen fruit smoothie with organic frozen blueberries, strawberries, a banana, some cocoa powder, a tbsp of coconut oil (to keep the blood sugars even), and finely shredded coconut.
- Oils. Cold-pressed virgin olive oil for homemade salad dressings and with pasta. Virgin red palm oil for popcorn and browning onions. Coconut oil for low temperature cooking. Butter for grilled cheese sandwiches. Sesame oil for some pestos.
- Beverages. Once or twice a day I fill a two-quart pitcher with filtered water, adding a squeeze of SteviaClear for flavor. This is my primary beverage every day. A few times a week (for the past few months) I have made an iced sparkling water drink flavored with small amounts of beet kvass & lemon juice.
- Snacks. About once a week I make organic popcorn in a mixture of red palm and coconut oils topped with sea salt. This is my favorite snack. Maybe once a month I eat a couple of cups of garden of eatin' white corn chips with a homemade dip (see condiments).
- Condiments. Homemade dip made from plain Stonyfield Farm organic yogurt, Emerald Valley raw green & red salsas, and Rejuvenative Foods cultured sauerkraut. Also, I will turn this dip into a salad dressing by adding some olive oil before tossing into my salads. I also enjoy adding organic mustard and cultured sauerkraut to hot dishes just before serving.
- Sweets & Alcohol. I regularly indulge small amounts of organic low sugar dark chocolate (i.e., Dagoba: new moon). I enjoy homemade coconut macaroons made with organic shredded coconut, egg whites, vanilla, arrowroot, and maple syrup. My drinking is limited to ½ a glass of wine or beer a couple times a month over a shared meal.
- Meals Out. At least once a month, more often when I am feeling better, I enjoy dining out. The usual places are Baja Fresh, Soup Plantation, a local Japanese grill (watch the fish sauce!), or one of the wood-fired pizza spots. My favorite meals involve lamb or steak, mashed potatoes, chopped salads, and spicy dishes.
I sometimes wonder if I were a bit more careful with some of these foods, if the 25D levels might come down a little faster, but who knows? One interesting notion I picked up from one of Dr. Marshall's posts to another member is that the vitamin A (the kind found in meats) may affect how the body handles the D-metabolites. (Maybe more A means less 25D???) I am definitely getting lots of vitamin A in my diet.
____________________ Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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