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texlauras goalie
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Posted: Thu Jun 5th, 2008 11:10 |
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Started beni 5/5/08 Added mino 5/23/08
MP meds: Beni 20mg q 6 hrs; took an extra dose sublingually x2, to manage IP; also incr to q 4 hrs during unavoidable sun exposure
Mino 25 mg qOd
Palliative non-MP meds used: Tylenol, zyrtec
Light exposure: Our general norm -- in car for errands, changing locale, church, etc about 4x/wk for an hr or so, well covered and w/ noirs. Extra this wk for an outdoor wedding and related family events
Symptoms: joint pain 7, “confusion” (his word) 5, irritability & crying spells 5, h/a 4, fatigue 4
Comments: adding mino has brought out many more symptoms. He broke into tears one day b/c the joint pain was so bad. He talked about not being able to get his numbers and words right, when trying to do school work another day, and said it was “confusion”. He’s also had a few h/a’s. Usually these symptoms are in the afternoon & evening of days he takes mino in the morning. Other days are going pretty well, and his runny nose, cough and cold-like symptoms have resolved. He’s seeing the link between sun/light and feeling bad, so he’s been pretty motivated to use k-cream &/or zinc sunscreen. He still needs reminders at times to keep his noirs pushed all the way up on his eyes.
Neither he or his brother show bad attitudes toward the protocol and restrictions. They take it all in stride and stay pretty positive. We chat about it quite a bit, and plan for fun activities at sunset. Having three of us going through this together really helps.
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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Aussie Barb
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Posted: Thu Jun 5th, 2008 22:30 |
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Thank you for letting us know you have started minocycline. Please review the information threads pinned to the top of this forum so you will be able to independently locate answers to frequently asked questions. See What should I know about Minocycline?
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding natural light and vitamin D, getting adequate rest, pacing activities, eating well, using palliative meds appropriately and managing the immune response by adjusting Benicar and minocycline.
Don't ramp up until you are able to tolerate a symptom increase unless experience tells you that an increase would dampen intolerable symptoms. See When to increase antibiotics
An increase in any symptom that correlates with MP therapy is probably due to immunopathology. These symptoms can be controlled by adjusting MP medications and using palliative and pain meds as needed.
the headaches and neuro symptoms can be caused by the light exposure to the eyes if glasses are not kept in place. keeping maximum eye/body protection is helpful.
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
make sure of adequate pain control, rest, relaxation, and hydration, nourishment etc.. Personal Toolkit
Rest is a very important part of managing and healing..
Let us know how it goes......... all best, Barb ..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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texlauras goalie
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Posted: Sun Jun 15th, 2008 06:21 |
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Started beni 5/5/08 Added mino 5/23/08
MP meds: Beni 20mg q 6 hrs
Mino 25 mg qOd
Palliative non-MP meds used: Tylenol
Light exposure: our normal amount (some days almost none, some days out for errands, church, etc)
Symptoms: joint pain 6, irritability & crying spells 5, bad dreams 4, fatigue 3
Comments: holding the dose of mino at 25 mg a few more days before increasing, due to pain
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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Aussie Barb
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Posted: Sun Jun 15th, 2008 06:28 |
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Thank you
see also When to increase antibiotics
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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texlauras goalie
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Posted: Tue Jun 24th, 2008 21:28 |
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Started beni 5/5/08 Added mino 5/23/08
MP meds: Beni 20mg q 5-6 hrs (q 4 hrs on days with more sun exp)
Mino 50 mg qOd (increased on 6/18, without problems)
Palliative non-MP meds used: none
Light exposure: our normal amount (some days almost none, some days out for errands, church, etc)
Symptoms: joint pain 2, irritability & crying spells 2, bad dreams 2, fatigue 2
Comments: all symptoms better controlled, due to taking slightly more beni. Tolerating mino 50 mg dose just fine.
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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Posted: Thu Jun 26th, 2008 09:37 |
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Based on your report of tolerable symptoms, you could increase mino to 75mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the pace of therapy that works for you is part of the experience gained throughout the MP journey.
Ramping too quickly is not advised but there is no need to tarry. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds.
Let us know how you are doing........
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texlauras goalie
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Posted: Fri Jul 4th, 2008 19:47 |
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MP meds: Beni 20mg q 4-5 hrs
Mino 75 mg qOd (increased a few days ago)
Palliative non-MP meds used: none
Light exposure: our normal amount (some days almost none, some days out for errands, church, etc)
Symptoms: cold-like symptoms (runny nose, congestion) 3, joint pain 2, irritability & crying spells 2, bad dreams 2, fatigue 2
Comments: holding steady, w/ better energy level; only issue w/ bumping up mino dose has been some return of "cold" symptoms (so interesting to see how IP shows up!)Last edited on Fri Jul 4th, 2008 20:13 by texlauras goalie
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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natalie17
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Posted: Sat Jul 5th, 2008 07:33 |
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In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked.
And conversely, when symptoms peak (not necessarily intolerable), reduce the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg) to see if this dosing has an anti-flammatory effect for you.
When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom.
The resulting information can be added to your personal tool kit. You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
Let us know how the experimenting goes...........
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CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Dec08 25D<4.4| avoid light D, NoIRs, pretected when out | Ph2-Feb08 | ABCofMP
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texlauras goalie
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Posted: Sat Jul 12th, 2008 04:58 |
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MP meds: Beni 20mg q 4-5 hrs
Mino 75 mg qOd (to increase to 100mg tomorrow)
Palliative non-MP meds used: none
Light exposure: our normal amount (some days almost none, some days out for errands, church, etc -- always well covered, which is getting much HOTTER  ).
Symptoms: all were holding steady at about a 2, until he & twin brother were feeling so good they started doing strenuous exercise in the house ... then we saw a hike in symptoms, up to: fatigue 4, joint & muscle pain 5, crying spells 5. We squashed the exercise and things went back to the 2 range. They're sort of learning to self-regulate activity levels, but we have to remind them to slow down some.
Comments: We're pleased with the progress! Good to see my boys with energy and wanting to run and jump, even though it's clear they can't take too much of it yet.
Plan: Request ph2 guidelines
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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IngeD
Moderator
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Posted: Sat Jul 12th, 2008 05:10 |
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Once you have ramped up to Mino 100mg it is time to consider Phase 2:
Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Please send for it asap so there will be no delay in your progression to phase 2. When you see or call your doctor, be sure to ask about the tests you need to monitor your progress on the MP.
Before you commence the next phase, please post in the Phases Two and Three forum so we can discuss the details of your next antibiotic. We look forward to welcoming you there when you have received a response to your completed questionnaire
Kind Regards, IngeD
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Rickettsiosis per neurop chron bronch adhesions IBS pre-diabetes HTN 125D51 Ph1Jan07 25D26.4(Dec06) 25D12.8 (Jun07) 25D8.4 (Jun08)25D6.4 (June09) NoIRs limited outings covered lo lux home Ph3
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texlauras goalie
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Posted: Mon Jul 21st, 2008 05:34 |
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MP meds: Beni 20mg q 4-5 hrs; + PRN sublingual x2
Mino 100 mg qOd
Palliative non-MP meds used: xopenex breathing treatment (in nebulizer) 1x
Light exposure: our normal amount (some days almost none, some days out in the car, always well-covered)
Symptoms: 2 new herx reactions this week – asthma symptoms 6 (responded quickly to breathing treatment and only happened 1x) and belly pain w/ nausea 7 (1x, responded to PRN beni under tongue). Ongoing: joint pain 3, irritability & crying spells 2, bad dreams 3, fatigue 3.
Comments: prior to MP, had not had any asthma since he was 1-2 years old (2 episodes as IP, thus far). Belly pain was one of his biggest problems when the Lyme started kicking in (fall 07-spring 08). He hadn’t had any since starting MP, until this week. So, we know the meds are getting into the right places (old and new).
Plan: to see MP doctor next week and start ph2 soon
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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Posted: Mon Jul 21st, 2008 22:31 |
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This link at the top Left of each page The Marshall Protocol Study Site - will take you to the main page.
Scroll down that page till you find the Phases Two and Three Forum - click to to get the page where you can post a new topic. We look forward to welcoming you there when you have received a response to your completed questionnaire.
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texlauras goalie
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Posted: Fri Dec 12th, 2008 13:38 |
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| turning 10 years old in next few weeks, and will also be traveling to see doc.
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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P.Bear R.N.
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Posted: Sat Dec 13th, 2008 01:18 |
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Great news!  P.B.
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texlauras goalie
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Posted: Thu Jan 15th, 2009 02:26 |
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Mom's Note: I've had some interest from other parents in how my guys did while progressing in Phase 2, so I'm going to include some of the past posts here ....
Posted: Sat Jul 26th, 2008 05:13
Palliative non-MP meds used: none
Light exposure: 2 days for commuting (under 1 hr/day); 2 days for doc appts/errands (2-3 hrs/day)
Symptoms: fatigue 3, joint & muscle pain 2, irritability & crying spells 4
Comments: when filling out the ph2 questionnaire, I mentioned goalie’s recent dx of mild pulmonic & tricuspid valve regurgitation (Feb 08). His new PCP heard a murmur in Jan & sent us for an echo. No doc had noticed a murmur before. As far as we know, he’s never had cardiac symptoms. He had been very involved with competitive sports, getting plenty of exercise for many years, until beginning to show signs of exercise intolerance in fall 07 and spring 08 (when all Lyme sx’s started to be a consistent problem). What we’ve been told about his regurg is that it’s very mild, many people have it and never know, just something to keep an eye on occasionally, etc. So, I had never even mentioned it here on MP site before.
Questions: for us and doctor and moderators … to do modified ph2 or regular ph2 ...?
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Posted: Fri Aug 8th, 2008 05:40
Palliative non-MP meds used: none
Light exposure: trip out of town for doc’s appt, very hot & sunny, 4-5 hrs/day x 2 days; 5 days for commuting, in past 2 wks (under 1 hr/day); 2 days for church; other days almost none.
Symptoms: joint pains, shoulder, ankle, knee, seem to be sharper than before-5
fatigue - 5
one episode of chest pain, very transient - 6 (“mom, my heart is hurting, it feels like it’s getting stabbed with a rock”), about 18 hrs after taking ph2 med
irritability & crying spells - 4
bad dreams – 3
Also, he had some complaints in the days before starting new antibx …
“brain feels fuzzy” & “can’t remember anything” – 6 (took extra beni, for that)
cold-like symptoms – 5
Comments: Have moved ahead with ph2 meds (not modified ph2). He did get our attention with that rock-stabbing comment, but it was short-lived. Overall he says he’s feeling more tired and he spends more time reading and doing quiet activities, but his mood is good.
Plan: keep going with the ph2 cycles; watch for any other cardiac complaints and have the beni ready.
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Posted: Sun Aug 24th, 2008 01:07
Palliative non-MP meds used: xopenex via nebulizer for asthma-type cough and chest tightness x1 (became severe in the middle of the night); albuterol inhaler for same symptoms (less severe on a different night) x1; chloroseptic throat spray x8
Light exposure: commuting for childcare, errands, church - 6x in 2 wks (1-2 hrs/day); started school, part-time schedule with accommodations – 3 days; other days almost none.
Symptoms: cough, worse at night, allergy &/or asthma-like 6; sore throats, worse in am 6; fatigue 5; cold-like symptoms 5; joint & muscle pain 4, irritability & crying spells 4
Comments: Started 4th grade this week, after MP doc gave OK for part-time attendance (3 half-days), with reduced light classroom, constant Noirs, & no recess or PE. Will attempt to stay up to speed with full curriculum via homework. Trying all this out at a new school for us, the public elementary in our small rural town. Had been in a private school in nearby larger university city before, but the principal there was reluctant to try part-time attendance (due to nature of their curriculum, mostly group work). Public school has been quite accommodating thus far, with doc writing necessary orders. This has been a stressful and emotional transition, but we’ll hope for the best. (We couldn’t do home-schooling, b/c of my health and energy level).
Plan: see how it goes with school; will pull back more if he’s not tolerating it. He’s in good spirits. We’re keeping inhaler and nebulizer ready, now that he’s had 3 asthma attacks since starting MP. Will incr mino in next few days.
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Posted: Thu Sep 4th, 2008 23:19
Palliative non-MP meds used: none
Light exposure: attending school 3 half-days per week (w/ noirs, reduced light, covered up, K cream); 15 min commute each way; other days none.
Symptoms: fatigue 5; irritability & crying spells 5; sleep disturbance 4; sore throats & runny nose, when waking in am 4; ankle & leg pain 4; cough 3
Comments: no more asthma symptoms of late. We’re experimenting with this school thing, and learning which symptoms are from light (after school he’s moodier, fatigued and doesn’t sleep well, plus gets leg pain at night).
Plan: If too symptomatic from school, we may have to reconsider the home-schooling option. We’re giving it one more week, before deciding.
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Posted: Tue Sep 16th, 2008 14:13
Palliative non-MP meds used: none
Light exposure: attending school 3 half-days per week (w/ noirs, reduced light, covered up, K cream); 15 min commute each way; trip out of town for doc yesterday (few hrs in car); other days none.
Symptoms: fatigue 5; irritability & crying spells 5; sharp pain in elbow 6; runny nose, when waking in am 4; ankle & leg pain 4
Comments: the elbow pain came when he was a bit overdue for his beni (6hrs 20mins, compared to about 5hrs on ‘normal’ days), and it took a SL half-dose after the regular dose to bring it under control.
Plan/Question: doc suggesting he may need (another cycle of this level of antibx, before increasing any), since he’s requiring beni quite frequently.
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VEZ R.N. wrote: Thank you for the update.
Sometimes increased symptoms are indicative of needing an increase in dosage. Good idea to discuss this with your Dr. on your next visit.
Continue to take care, you are doing a nice job.
Best, VEZ Last edited on Thu Jan 15th, 2009 06:55 by texlauras goalie
____________________
(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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texlauras goalie
Member in Phase 3
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Posted: Thu Jan 15th, 2009 02:33 |
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Posted: Sat Sep 27th, 2008 15:46
Palliative non-MP meds used: chloroseptic throat spray x3
Light exposure: school for 5 hrs, x2 days each week (w/ noirs, reduced light, covered up, K cream); in car for school, childcare, errands, etc (30-45 mins, several days/wk); other days none.
Symptoms: sore throat w/ runny nose (comes & goes, mostly in am) 4; hyperactivity and irritability 5; sharp pain in joints (only occasionally) 4
Comments: our doctor agreed with VEZ’es advice, so we moved (antibx up modestly), for this level. Have noticed less crying but more hyper energy, recently. Also, is arguing more with his brother, which is unusual for them. I think they’re not getting enough rest, with school and some busy family schedules … they don’t really realize that they need to rest more, and just get wound up instead. Also, since they feel well much of the time, they run around and expend lots of energy.
Plan: will work on earlier bedtimes and more resting time during the day.
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Posted: Sun Oct 12th, 2008 02:24
Palliative non-MP meds used: xopenex via nebulizer x3; albuterol inhaler x3
Light exposure: school schedule has changed to 2 hrs/day x5 days/wk (fully covered, noirs, K-cream); 15 min commute each way
Symptoms: asthma-type cough (which we’ve started to track with milk allergy) 5; crying spells & irritability 5; bad dreams 4
Comments: we rarely have any dairy, but the occasional cheat on ice cream never caused asthma symptoms before … interesting new trend.
Re: more recent 25D level -- in Sept it was 15, which I need to add to signature line. Thanks Aussie Barb for reminding me.
School had been making accommodations for us, following MP doc’s orders for p/t attendance, noirs, etc. Then school wanted to put a more formal accommodation plan in place (federal 504 law, with many steps/hoops involved), demanding we get a 2nd opinion from a local doc and let him write the accommodations. School became more and more clear about not wanting to participate in any “alternative medicine” treatments, and after much discussion with them, our attorney, appropriate advocates, etc., we decided NOT to pursue the 504 process. Instead we changed our enrollment to p/t based on certain subjects (not medical reasons), which is why we must now attend 5 days/wk. This p/t enrollment is an option designed for home-schoolers, and we will home-school for the other subjects. School is still allowing the essential Noirs, and teachers close blinds and allow boys to keep their backs to windows. Has been an interesting process, to say the least.
Plan: Will see how this school schedule works and stick it out until end of semester in Dec. Then may go to all home-school in Jan, if needed. Getting a bit more rest now (since classes are in afternoon), which has helped.
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Posted: Fri Oct 31st, 2008 01:05
Palliative non-MP meds used: albuterol inhaler x2, chloroseptic throat spray
Light exposure: school 2 hrs/day x5 days/wk (fully covered, noirs, K-cream); 15 min commute each way; weekend activities in partial sun and with commuting, 1-2 hrs x3
Symptoms: crying spells & irritability 6; joint pain 3; caught a cold with sore throat, runny nose, and some shortness of breath (along with everyone else in our area, then made a good recovery in a few days) 5
Comments: has tolerated this level quite well, except for some increased irritability which may be more sun-related
Plan: will move to level 2b with ph2 med
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Posted: Tue Nov 11th, 2008 22:45
Palliative non-MP meds used: xopenex via nebulizer x1
Light exposure: school 2 hrs/day x5 days/wk (fully covered, noirs, K-cream); 15 min commute each way; 2 extra hrs of being out on Friday, due to childcare issues
Symptoms: big mistake on our part – lost the benicar blockade (10 hrs between doses, then kept dosing q 5hrs, before realizing what had happened), then had a BIG problem with crying, rage, shouting, & great difficulty calming down, which lasted about 90 mins – 8; cough-variant asthma symptoms – 4 (1x, again after dairy products … OK so we cheated on some delicious pumpkin cheesecake … call us human); day-to-day irritability – 5; dreams – 3
Comments: it was a very bad scene when both my boys melted down on Saturday … they had been in the sun more than usual on Friday, then when I was at work in the evening they missed their benicar dose (took it at 5 pm, missed it at 10 pm). I gave them a 3 am and 8 am dose, without knowing about the missed one. At about 12:30 pm I learned what had happened, and should’ve started aggressive dosing w/ SL, but was tired and preoccupied from working late Fri, and didn’t get my act together. At the same time they got angry about me turning off the TV (which they’d been watching for hours, while I slept), and WOW, they lost total control of their emotions and behavior! It was beyond anything I’ve yet seen, as a parent and MP-er. Granted, I’ve gone into rages from sunflares and IP, but when its 2 school-aged boys losing it at once, and your home alone with them – watch out ! ‘Hard way to learn a lesson, about not losing the benicar blockade.
Plan: will visit with doctor about pattern of irritability, in recent weeks, and perhaps consider increasing benicar beyond 20 mg, or dosing q 3 hrs on school days. May also have to consider school changes, but that’s a complicated issue, too (due to limited options and necessity of getting through 4th grade , not to mention the emotional implications, now that they’ve bonded with some friends and teachers, in the wake of just recently having to break all those bonds from the last few years ) ...
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Posted: Dec 12th, 2008
MP meds: Phase 2 meds
Beni 20mg q 4-5 hrs; extra SL 10mg about 2x/day
(before and after school), & up to 4-5x/day when symptomatic
Palliative non-MP meds used: xopenex via nebulizer x2, albuterol inhalers about 3-4x/week, zyrtec x2 (for allergy-type runny nose, congestion, cough)
Light exposure: school 2 hrs/day x5 days/wk (fully covered, noirs, K-cream); 15 min commute each way; occasional brief outings on weekends, always covered
Symptoms: shortness of breath, especially after exercise and when out in the cold – 6; joint pain – 4; “legs and ankles feeling weak” – 4; fatigue – 4; occasional moodiness – 4; allergy symptoms - 4
Comments: ‘hard to believe a month has passed since the boys’ last post (sorry) ... We got on top of the problems we were having, by several means: 1st, we got more aggressive with benicar dosing, at first sign of problems (the mood and behavior issues, mainly). MP doc was persistent in reminding us to handle these outbursts as IP and to TAKE MORE BENICAR, which has helped. Also we slowed down all the ramping of antibx, and cut back the (ph2 med) dose some with baja fan. Lastly, we tried to really investigate the triggers to outbursts, and discovered that light & infrared from TV & computers was probably more of a culprit than the light exposure at school. So, we’ve worked to cut down on electronic box time, tried to have them use Noirs while viewing (a difficult battle), lowered brightness even more on screens, etc. Now things are back to manageable, with normal personalities at play again. Whew … what a relief!
Also, the weather and short daylight hours are so very helpful for living an MP lifestyle! Hooray for the winter solstice . Both boys are really enjoying school right now, making friends and getting positive feedback from their teachers. Attending from 1-3pm works out well, for resting in the morning and getting ‘just enough’ exposure to peers, formal academics, etc. We’re pretty relaxed with the homeschooling piece, but making steady progress there, as well. Last edited on Thu Jan 15th, 2009 07:06 by texlauras goalie
____________________
(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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texlauras goalie
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Posted: Thu Jan 15th, 2009 02:45 |
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Today's post ...
Palliative non-MP meds used: albuterol inhaler PRN (1-2x/wk)
Light exposure: school 2 hrs/day x5 days/wk (fully covered, noirs, K-cream); 15 min commute each way; occasional brief outings on weekends, always covered
Symptoms: occasional sharp pain in muscles/joints 4, occasional shortness of breath (after exercise & out in the cold 4), fatigue 3, occasional moodiness 3
Comments: doing fine, with everything manageable. Both boys felt good through the holidays and their 10th birthday. Had a few too many sweets and deviations from special diet, on a few occasions, with some mild symptoms/behavior issues. Continuing to see that too much light exposure from TV and electronics causes irritability, so we’ve bought extra pairs of regular sunglasses to leave lying around in strategic places.
Doc says they seem to be thriving and we agree. School also going fine, and we’re doing some on-line classes now, to supplement the 2hrs/day they go to a regular classroom. Most days they’re in good moods, with positive outlooks.
Plan: Will return back to more regular ramping of antibx, now that things are manageable again.
Noted
Last edited on Thu Jan 15th, 2009 07:09 by texlauras goalie
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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texlauras goalie
Member in Phase 3
| Joined: | Wed Apr 16th, 2008 |
| Location: | USA |
| Posts: | 33 |
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Posted: Sat Mar 7th, 2009 16:35 |
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Last two posts:
Feb. 11, 2009 --
MP meds: Level 2 antibx, Cycle 4, Day 10
Beni 20mg q 4-5 hrs; extra SL 10mg PRN (about 2x/day)
Palliative non-MP meds used: zyrtec for allergy symptoms 2-3 x (when around animals or woods)
Light exposure: school 2 hrs/day x5 days/wk (fully covered, noirs, blinds closed on all windows and desk faces away from windows); 15 min commute each way; occasional brief outings on weekends, always covered; occasional sunny areas at dad’s shop while mom is working
Symptoms: occasional sharp pain in muscles/joints 3, shortness of breath, especially after exercise and when out in the cold 2, fatigue 3, occasional moodiness 3
Comments: still doing well, and tolerating the regular ramping of antibx. We use extra benicar on school days.
Both boys really enjoying their new on-line classes, and thriving at their part-time public school (academically and socially). We are letting them ride the bus home about once a week (with hoods up, hats, noirs, etc), to give them more time with friends. And they’ve even walked ‘home’ from school to dad’s work place (all of 3-4 blocks!) a few times, on cloudy days. They love these opportunities to feel like “normal” kids.
Plan: Keep up the regular ramping
Noted
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Today --
MP meds: Level 4 antibx, Cycle 3, Day 3
Beni 20mg q 4-5 hrs; extra SL 10mg PRN (about 2x/day)
Palliative non-MP meds used: zyrtec for allergy symptoms 2-3 x (when around animals or woods)
Light exposure: same as last post
Symptoms: episodes of irritable mood 5, occasional sharp pain in muscles/joints 3, “my back is hurting me” (happened 2x) 4, fatigue 3
Comments: after ramping the (ph2 antibx), I saw a recurrence of that ugly irritability we had in the fall. I quickly used more beni, to nip that in the bud. And thankfully we’ve been able to keep ramping the mino, with all things manageable.
Plan: preparing for Ph3; will see doc before starting it
Last edited on Sat Mar 7th, 2009 19:38 by texlauras goalie
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(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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texlauras goalie
Member in Phase 3
| Joined: | Wed Apr 16th, 2008 |
| Location: | USA |
| Posts: | 33 |
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Offline
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Posted: Sat Apr 25th, 2009 18:23 |
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MP meds: Ph3, Cyc 3, Day 10: (three ph3 meds)
Beni 20mg q 4-5 hrs; extra SL 10mg w/ most doses (except when sleeping)
Palliative non-MP meds used: none
Light exposure: for p/t school, 2hrs/day with accomodations; daily commuting (about 20 mins each way); and occasional outings for errands, church, family gatherings, library, etc. Always well covered and with NOIRs. Spent one morning visiting old school (about 2 hrs total in very sunny rooms and outside), and felt the negative effects for next 2 days (but had a great time seeing old friends and teachers).
Symptoms: irritable mood 5, fatigue 5
Comments: began ph3 on 3/27. Noticed increased irritability immediately, and began using 30 mg of benicar q 4-5 hrs, pretty much all day (had used 20 mg before, with occasional 10mg PRNs). Overall, has been doing quite well with ph3, probably feeling better than he did in ph2.
Had lab work done and saw MP doc on 3/16. 25D level great at 7. Osteopathic manipulation by MP doc “felt good” and helped overall.
Attitude is great. Spending lots of time reading. Beginning to do outside activities again at dusk and after dark, now that spring has arrived.
Plan: continue ramping ph3 meds.
____________________
(Mom of 10 yo, on his behalf; 74 lbs) Borelliosis/Lyme, abd pain & digestive issues, food & envir allergies; initial 1,25D=48, 25D=16 Apr08; Benicar May08; Ph2 Aug08; Ph3 Mar09; Noirs, low lux home, covered up; 25D=7 Mar09; lite exp r/t school
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bsrdo
Health Professional
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Posted: Wed Apr 29th, 2009 02:24 |
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Hi Laura,
Clindi can be a surprise. This is where the extended cycling of Phase 2 (ten days to ramp each Mino dose up to 100mg before increasing the Clindi). By Cycle 3 did you mean Mino 75mg?
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