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Joyful
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| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Sun Sep 20th, 2009 14:25 |
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Thursday, 17Sep09 ~ 27th Month on MP ~ Benicar only
===== 10-day report cycle #14 since last Zith =====
MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~
Palliative Meds
Extra Benicar: 20mg, sublingual, 1-2 {3}{5}{7}
Hydroxyzine: 12mg @ bedtime {daily}
Valium: 0.67mg @ bedtime {daily}, plus extra on day {5}
Nature-Throid: 1/8 grain, daily
Minerals: 400mg dicalcium malate, 200mg chelated magnesium; daily
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Light Exposure
Staying @ home with mostly very low lux; mostly NoIRs while on computer.
Trip out during daylight on day {2}. Usual 98% NoIRs, coverings, etc..
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Key symptoms (max for period, plus daily max level from 0-10)
8 • muscle (pain, spasms, weakness) ~ / 6 / 8 / 6 / 6 / 8 / 8 / 8 / 8 / 8 / 6 /
8 • neuro (hypersensitivity, cognitive)~ / 6 / 6 / 8 / 8 / 8 / 8 / 8 / 8 / 6 / 6 /
6 • lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 6 / 4 / 6 / 6 / 4 /
Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold)
Timing of sleep cycles off; not rested after sleeping; physically tire easily from even simple activities; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; mid-back pain that increases with activity; word salad (writing or typing wrong letters or words); feel distressed when feet are not kept elevated; numbness or tingling in extremities; hypersensitivity to light, sound, smells, heat, or motion; mentally tire quickly; desire for things to be in order; dizziness after change in elevation; muscles tight, especially neck, face, shoulders; migraine: visual, numbness, tightness at back of head; blurry vision that comes and goes; intermittent joint pain (fingers, toes, knees, or hips); muscle cramps, spasms, or tremors; crusty and/or irritated eyes after sleeping; dry and/or peeling lips; post nasal drip; cold feet/hands; emotional fragility; rapid heart rate with activity; GI upset, minor nausea, or lowered appetite.
Total hours rest by day:
Time asleep ~ average 8.8 hours (range 6-12)
Time in bed ~ average 20.9 hours (range 14-23)
Time w/ feet up ~ average 22.5 hours (range 21-23)
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• Most days with disabling levels of dizziness when standing up or moving around. Only parts of a few days of feeling able to move about the house with ease.
• New physical therapy exercises seemed so easy and yet after my first trail doing them I have lost much of my energy and feeling of well being. Each time I scaled back (from 5 each, 3 each, 2 each). Each time I needed 24-48 hours to recover. Overall weakness, especially arm weakness has increased.
• Tried using guaifenesin for neuro symptoms with hardly any relief. Tried tylenol for pain following mild physical therapy exercises with some minor relief.
• Strong increase in migraine symptoms, especially hypersensitivity, especially light sensitivity, nausea, and right side numbness. Use of TENS unit seemed to help some with both migraine and back pain.
• Joint pain is still low, however, when I use my hands I am getting more sharp, 'electric shock' type pain.
• Overall muscle spasms are better controlled through the whole day when I am consistent about taking the hydroxyzine+Valium combination each night at the same time. However, there has been an increase in the amount of spasms around the lower ribcage since starting to try to do the physical therapy exercises.
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Plan: stay the course on Benicar only, try using Quercetin for neuro symptom relief.
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Some things to Celebrate
• New youtube channel: http://www.youtube.com/user/DrTrevorMarshall 
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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
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| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1771 |
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Posted: Mon Sep 28th, 2009 12:33 |
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Sunday, 27Sep09 ~ 27th Month on MP ~ Benicar only
===== 10-day report cycle #15 since last Zith =====
MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~
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Key symptoms (current, plus daily max level from 0-10)
8 • muscle (pain, spasms, weakness)
4 • neuro (hypersensitivity, cognitive)
4 • lymph (stiff neck, swelling, etc.)
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Short Update
Some relief from neurological symptoms by using Quercetin 200mg every 8 hours.
Muscle weakness, pain slightly less.
Still on short break from moderating.
Still living full of joy.
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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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BARNEY
Moderator
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Posted: Sun Oct 4th, 2009 03:22 |
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Joyful,
Hope you are enjoying your break and that you enjoy your time with your Dad.
Sometimes we just need reminding that it's not about winning the race, it's about just crossing that finish line. (Karna’s thoughts)
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Sallie Q
Member in Phase 3
| Joined: | Mon Jan 26th, 2009 |
| Location: | Australia |
| Posts: | 61 |
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Posted: Mon Oct 5th, 2009 05:38 |
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Joyful posted 21st Sept: ===== 10-day report cycle #14 since last Zith =====
MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~
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Timing of sleep cycles off; not rested after sleeping; physically tire easily from even simple activities; skin: itchy, .....
mid-back pain that increases with activity; ..........
emotional fragility; .
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• Most days with disabling levels of dizziness when standing up or moving around. Only parts of a few days of feeling able to move about the house with ease.
• New physical therapy exercises seemed so easy and yet after my first trail doing them I have lost much of my energy and feeling of well being. ........
. Each time I needed 24-48 hours to recover. Overall weakness, especially arm weakness has increased
............
• Strong increase in .............. especially light sensitivity, nausea, .......... Use of TENS unit seemed to help some with both migraine and back pain.
.............. there has been an increase in the amount of spasms around the lower ribcage since starting to try to do the physical therapy exercises.
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Plan: stay the course on Benicar only, try using Quercetin for neuro symptom relief.
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Some things to Celebrate
yeah
well Joyful there is always something to celibrate
while you are celebrating
dare I suggest you follow your own advice and keep it slow enough while your immune sys. is digging so deep.
That back pain could be kidneys working overtime. I have experienced bad kidney infection a long time ago and still remember the pain in my back. I recognised about a month ago that I occasionally get hit right in that spot, and when I knew I had been doing less bending stretching and lifting, not more:
well, the penny dropped... my kidneys, of course 
Certainly I have been able to associate both increased light sensitivity AND increased physical activity with too much IP to handle in comfort. (Also increased emotional fragility, a dead giveaway that I need to up benicar and down both physical and mental engagement.)
so glad you are taking time for a well earned, Moderate, rest
Sallie
~~~~cruising along before I see my doctor for the next challenge ~~~~
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20yrHotFlushSjogrensCFSb.cancer1990stress57-83 60%dysreg.vD 13.2 Sep08ph1 NoIRlowLux JanModPh2 May09Ph3 25DMay19ng/ml,Aug11.2
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Aunt Diana
Moderator
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Posted: Mon Oct 5th, 2009 11:11 |
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Joyful,
Long before I had ever heard of the MP, I followed the guidelines of a well-known Lyme disease doctor from Long Island. Dr. Burrascano was one of the early "pathfinders" treating Lyme patients and had a good record of success. Among his many guidelines is the advice to abstain from exercise.
It's hard to give this up, I know, but I think he is right. Our bodies are already being stretched to the limit....the muscle weakness we experience is as much neurological as it is physical.
I know from my own experience that I have no tolerance whatever for exercise.
This advice flies in the face of a world that is so pro-exercise as a cure all for everything. ....for us sometimes it only leads to setbacks.
Sad but true.
I hope you enjoy your time with your father.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
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Posted: Mon Oct 5th, 2009 22:51 |
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I guess the trick is, if one feels up to trying a little exercise is to do just enough exercise to avoid an exacerbation (but it can be hard to tell ahead of time how much that is).
I always found it hard to not overdo if asked to exercise. So, perhaps if one is going to exercise a bit, start with a little stretching and for any thing you try start with about 1/4 or less of what you think you ought to be able to do and increase only very cautiously. I used to tell myself not to increase from one day to the next because I inevitably would try to increase too much. I would end up increasing the right amount with this strategy.
But for many people on the MP in the early stages, just doing the things one has to do is exercise enough (and sometimes even that wears us out). One will typically increase one's exercise/activity naturally as one feels better without trying.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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Carricol
Member in Phase 3
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Posted: Tue Oct 6th, 2009 04:02 |
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| I know when I try to do more than what is necessary to get by day to day my body says stop. I think that in due time our bodies will let us know when they are ready for more.
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Sarcoidosis 1-25D 16, 21 Oct 08; Ph1 Nov07, Synthroid, 5-HTP, tyrosine, digestive enzymes, NOIRs lite exp r/t commute cover up, Ph2 Jan 08, Ph 3, 6 May 09, 25D 5, Jul 09
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thelymelight
Member in Phase 1
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
| Posts: | 192 |
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Posted: Sat Oct 10th, 2009 01:08 |
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Hello Aunt Diana,
I thought it was interesting what you said about Dr. Burrascano and exercise....
I too was his patient, from years 2003-2005 and he gave me a handout about how important it was for CLD patients to do some form of exercise, if one wants to recover from Lyme...He recommends starting rehabilitation with heat therapy, range of motion exercises etc...with a physiotherapist, then adding in stretching etc, then slowly progressing to a formal exercise program..He found that it helped people in their recovery..
I myself have been doing physio for 2 1/2 yrs now...In 2006 I was doing ozone therapy with abx and was able to add in the bike for 1 min and doing some exercising for the larger muscle groups, (shoulders & thighs)....But since stopping the ozone therapy and my hydrocortisone, I have regressed in what I can do...So I am back to just the stretching/gentle yoga and going to physio once a wk to keep things fluid...especially in my spine & low back
I am curious, what years were you a patient of Dr. B's?
Cheers,
Lisa
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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Aunt Diana
Moderator
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Posted: Sat Oct 10th, 2009 18:12 |
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I never was a patient of Dr. Burrascano.....I had only printed off the info from his website. I tried to get appt. with him but he was so busy at the time and the trip from Massachusetts to Long Island was not an easy one, so I never did get to see him. Shortly after, he retired.
I was a big aerobic dance fan back in those days so when I recall the no exercise rule from his website.....that must be what he was referring to that I remember. No aerobic exercise...because I certainly gave up the aerobics and was better off for it. (I used to practically kill myself trying to keep up a light aerobic routine)
What you say only makes sense....I hope I didn't mislead anyone.
I think we all need to tailor our exercise routines to our particular reality...I might discuss physical therapy with my new doctor....I might be at the point that I could handle it.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Joyful
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| Location: | Restville, Again |
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Posted: Fri Oct 23rd, 2009 22:09 |
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Friday, 23Oct09 ~ 28th Month on MP ~
===== Stopped antibiotics May of this year =====
Key symptoms (current, max level from 0-10)
4 • muscle (pain, spasms, weakness)
4 • neuro (hypersensitivity, cognitive)
2 • lymph (stiff neck, swelling, etc.)
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Brief Update
Migraine:
Triggers seem to include any physical exertion, bright light, stress, dehydration, and low blood sugar... still learning to manage. Main symptoms are hypersensitivity (w/ distress), numbness of face, and low mental function. No medication seems to help, only resting in low stimulation environment relieves symptoms.
Muscles:
Weakness, pain still increases with activity. Spasms are easily triggered with normal actions. Stretching and strengthening are helpful and necessary, but must be paced very conservatively (every 3rd day, lots of breaks during 'routine').
Sleep:
Unrestful at night, deeper when sleeping during the day.
Improvement:
I have discovered if I take a real rest frequently (quiet room, no light, flat on back), I am finding I have the strength to do more activity overall during the day.
Test result:
25D level is 6 ng/mL.
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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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thelymelight
Member in Phase 1
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
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Posted: Sat Oct 24th, 2009 18:24 |
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Hello Joyful,
Glad to see your levels of IP (your numbers have come down from an 8 to a 4).
Yes... resting thru out the day helps me to have a good day...I usually have to rest for 30 mins late morning, then by 3-4pm I have to lay down again but for 2 hrs..as this is when my adrenals are at their lowest and my pain and fatigue increase significantly...Then I usually rest in the evenings again for 30 mins - 1hr , at about 8pm...I go to bed at about 11:30pm..but usually don't get to sleep till sometime after midnight..
Did you read my post about my experience going to the restorative yoga class?...I have also just started seeing an Osteopath...It is something that Dr. B highly mentions on his website that is very beneficial for people going thru healing....
Cheers
Lisa
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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BARNEY
Moderator
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Posted: Sun Oct 25th, 2009 18:23 |
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Hey Joyful,
Caught your short update. After quite a while on MP... I learned to sleep when our bodies allowed us.......many times during the day. It reminds us when the babies are little and they get their days and nights mixed up. There is no 'sin' to sleep during the day IMHO.
I did, however, miss your 'what to celebrate'.
Are you doing better emotionally? You always light up my day when I see your posts.
Don't forget to drink water, please.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Joyful
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Posted: Wed Oct 28th, 2009 10:44 |
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Thank you Lisa for your thoughts and experience with rest during the day. Yours too Barney.
Yes, the levels on average have come down, but have been higher again recently. I think due to an unavoidable increase in my stress as I take care of an urgent matter on the home front.
Restorative yoga does look inviting. However, until I am comfortable driving myself, it's not going to happen in a class setting. And I find keeping track of what I am doing on my own pretty challenging right now.
I'm not depressed though. Just tired and sore alot.
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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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Juanita
Member in Phase 3
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
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Posted: Wed Oct 28th, 2009 19:51 |
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Hang in there, Joyful. If I were a betting soul, your nose is the one I'd put my last dollar on for finishing the race.
Slow race, mind..... *as we all crawl forward 1/4 inch per hour*
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Joyful
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Posted: Sat Oct 31st, 2009 05:07 |
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Thank you Juanita...
____________________
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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