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JAQ
Member in Phase 3
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Posted: Tue Nov 6th, 2007 19:48 |
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MP Meds:
Benicar landing zone: 20mg@1000,1300,1600,1900 & 40mg@2200,0400.
Benicar tolerated well at this dosing. Very interesting drug. Rare extra dose.
Minocycline 25mg@1200 X 1 started November 5, 2007, will wait for directed response.
Non-MP med use: NONE
Light: Noirs indoors and out. Hat with sun exposure. Not particularly light sensitive but judicious use of Noir protection.
Immunopathology: Yes
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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JAQ
Member in Phase 3
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Posted: Wed Nov 7th, 2007 01:17 |
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Digital scale to measure divided doses
I will purchase a digital scale to measure mg accuracy of medications as needed. I have size zero vegetable capsules on hand.
I will also get a stack of pharmacy papers (nothing sticks to them) from my local pharmacist.
After extensive search the minocycline that we can acquire is 50mg capsules or 100mg capsules. To keep things accurate we will go this route for the protocol medications as needed.
http://www.oldwillknottscales.com/ Thanks to VEZ/RN for this TIP.
JAQ/MOM/RN
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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VEZ R.N.
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Posted: Wed Nov 7th, 2007 05:18 |
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JAQ, thank you for the update.
You are welcome for the ref. re: he scale. I have really had great success with mine and find the accuracy each time keeps symptoms pretty level. Looks like you are ready to move ahead.
Thanks for a clear and concise report. There are a few things you can do to make it an even better 'snapshot' of your current situation.
Please list your ongoing non-MP meds in your signature line.
List routine measures to prevent sun exposure (NoIRs, covered up, sunscreen) in your signature line only.
Rating your symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how you are doing since symptoms should be tolerable at all times.
In order for moderators to accurately assess your progress at least weekly or more often if needed in the beginning is expected. Thank you.
BTW, mino does come in tablet/caplet form and may be easier than the capsules. Check with your pharmacist for availability in your area.
Best Regards, VEZ
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JAQ
Member in Phase 3
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Posted: Fri Nov 9th, 2007 07:29 |
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VEZ/Board Staff:
The drug insert from Watson Laboratories that makes the minocycline does not give a 25mg or 50mg option other than the 50mg powder capsule. The pharmacist did an extensive search for 25mg to 50mg capsules and told me that it was not available. Could you please give me a reference for capsules? that may be easier? in the 25 or 50mg size range.
THX
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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Foundation Staff
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Posted: Sat Nov 10th, 2007 06:09 |
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See How do I take a low dose of minocycline when the capsules only come in a larger dose size?
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AK Teri
Member in Phase 3
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Posted: Sat Nov 10th, 2007 08:19 |
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| Just FYI as an alternative to measuring & filling your own - I used a local compounding pharmacy to get 25mg minocycline capsules. You will pay for this service, but the accuracy is assured. I have a separate prescription for 100mg which is filled at Walmart.
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RA since JUN 07/AUG 07 D125=60 D25=35/NOV 07 D25=13/APR 08 D25=15/SEP 08 D25=7/JUN 09 D25=6 NoIRs Covered; Ph1Aug07 ModPh2Nov07 Ph2Jan08 Ph3Jul08; Hydrocodone 10-650APAP/50mg Zoloft
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VEZ R.N.
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Posted: Sat Nov 10th, 2007 14:44 |
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Terri, Glad to know you got the dosages worked out. Minocycline also comes in tablet form which makes division easy with a pill cutter.
Best, VEZ
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JAQ
Member in Phase 3
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Posted: Sat Nov 17th, 2007 08:07 |
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MP Meds:
Benicar landing zone: 20mg@1000,1300,1600,1900 & 40mg@2200,0400.
BEWARE the Benicar from Canada, Olmesartan, NTR (non-time released) has a filler of Lactose. JAQ reacted immediately to this form of Benicar and has a very active IGG,IGM,IGA level reaction to all Lactose!! Severe GI pain, painful flatus, you-name-it. Not used after 2 pills.
Minocycline 25mg@1200 Every 3-4 days as tolerated
The pharmacy staff has done an extensive search for minocycline in tablet form, please give me a specific name/website that you have found in tablet form.
Immunopathology: Scale 1-10, anywhere from 1 to 8 at times. Trevor Marshall did discuss that JAQ's age can have a very active innate immunity with the Benicar blockade in place. That seems to be the case.
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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VEZ R.N.
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Posted: Sun Nov 18th, 2007 06:45 |
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JAQ, thank you for the update.
Please clarify the mino dosing schedule which is usually taken every 48 hrs and for some every 72hrs. Thank you.
Re: the Mino: I use the generic labeled minocycline HCl tablets made by PAR Pharmaceuticals.
Best, VEZ
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JAQ
Member in Phase 3
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Posted: Sun Nov 18th, 2007 21:38 |
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MP Meds:
Benicar landing zone: 20mg@1000,1300,1600,1900 & 40mg@2200,0400.
You asked for Minocycline Clarity: Minocycline 25mg@1200HRS every 3 days (72hours) or every 4 days (92hours) as tolerated for severe immunopathology. Sometimes we take a 5 day break(92 +24).
Children (JAQ is 12) can have alot of immunopathology just with the Benicar blockade, this is nicely reviewed multiple times in the DVDs that Trevor Marshall narrated. We are having to space the dosing as tolerated. Yes, this might take a while but, as an critical care nurse dealing with a chlild with a severe clotting disorder exacerbated by a LPa at 280, patience will need to pursue.
JAQs orthomolecular MD specialist, and multiple other LLD MDs have educated us well on immunopathology and the need to be patient with her. She is not on SQ heparin or lovenox either.
Minocycline 25mg@1200 Every 3-4 days as tolerated
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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JAQ
Member in Phase 3
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Posted: Mon Nov 19th, 2007 00:59 |
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Symptoms Report: “0-10” scale with “0” least severe; "10" most severe.
- Arthralgia/Joint Pain: [Hands, Shoulders, Knees, Hips, Ankles, Neck] (2)
- Back Pain: (2 to 8)
- Bowel Problems [Constipation, diarrhea] 0)
- Cardiac: [Chest Pain] (4)
- Cognitive: [Memory, Fuzzy thinking, Confusion] (5)
- Fatigue: (6)
- Insomnia (4)
- Myalgia/Muscle Pain: [Shoulders, hips, legs] (3)
- Nausea, vomiting (0)
- Numbness vs Cold: [arms, hands, feet] (3)
- Other Neurological: [Mood swings, Anger, Irritability, Depression] (2)
- Panic: Attacks (5) Severe at times
- Paresthesia: [Burning, itching] (5)
- Pulmonary/Lung [Cough, ] (few daily)
- Sensitivity [Light, sound - visual disturbances] (3)
- Optic Migraines (2)
- Tinnitus (2) failed hearing test
- Hot flash (2) with severe depression following
Discussion: I do hope that the board staff realizes that Lyme patients on this protocol are very committed and VERY symptomatic. I borrowed this template from another Lyme patient. So many of the Lyme patients have a blending of similar symptoms..... huh??
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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Foundation Staff
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Posted: Tue Nov 20th, 2007 09:06 |
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Thanks for checking in. Please use our new reporting format. This provides a 'snapshot' of JAQ's current situation so we can provide an accurate response. It's important that you include all the basic information in your report so we don't have to ask for clarification such as palliative meds and light exposure.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Many members with a Lyme diagnosis are very symptomatic but there is much overlap in diagnosis among Th1 diseases and much that is not diagnosed.
It's fine to proceed slowly with ramping of mino. Maintaining tolerable symptoms at all times is always the goal for her comfort, sustainability, safety and efficacy. Luckily, the MP makes this possible for most.
Keep in mind that sometimes lengthening the interval between dose causes an increase in immunopathology. See How to adjust MP meds
You're doing a good job........
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Foundation Staff
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Posted: Tue Nov 20th, 2007 09:07 |
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Thanks for checking in. Please use our new reporting format. This provides a 'snapshot' of JAQ's current situation so we can provide an accurate response. It's important that you include all the basic information in your report so we don't have to ask for clarification such as palliative meds and light exposure.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Many members with a Lyme diagnosis are very symptomatic but there is much overlap in diagnosis among Th1 diseases and much that is not diagnosed.
It's fine to proceed slowly with ramping of mino. Maintaining tolerable symptoms at all times is always the goal for her comfort, sustainability, safety and efficacy. Luckily, the MP makes this possible for most.
Keep in mind that sometimes lengthening the interval between dose causes an increase in immunopathology. See How to adjust MP meds
You're doing a good job........
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JAQ
Member in Phase 3
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Posted: Tue Nov 20th, 2007 13:08 |
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On Nov 6th JAQ added Minocycline, we read extensively and used the format requested by Meg Mangin RN for this portion of the protocol:
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
On November 6th VEZ RN requested the following format:
Thanks for a clear and concise report. There are a few things you can do to make it an even better 'snapshot' of your current situation.
Please list your ongoing non-MP meds in your signature line.
List routine measures to prevent sun exposure (NoIRs, covered up, sunscreen) in your signature line only.
Rating your symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how you are doing since symptoms should be tolerable at all times.
In order for moderators to accurately assess your progress at least weekly or more often if needed in the beginning is expected. Thank you.
On November 26 Meg Magin RN requested the following format (again, that we initially used):
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Question Number 1:
Could VEZ & Meg get together and request a format? I have now used both formats with just further requests from Meg? A bit confusing?
Question Number 2:
PAR Pharmaceuticals minocycline tablet is not available via the drug buyer for most pharmacist where I live, do you have a contact for this tablet. With JAQs severe sensitivity to the powder capsule (and most meds), she might benefit from a slightly slower releasing tablet.
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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Foundation Staff
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Posted: Wed Nov 21st, 2007 10:15 |
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VEZ's request simply expanded on the format to give us a quick and complete picture of Jackie's current situation and eliminate omissions such as palliative meds and light exposure.
You can contact VEZ by private message for information regarding minocycline HCl tablets made by PAR Pharmaceuticals.
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JAQ
Member in Phase 3
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Posted: Wed Nov 21st, 2007 21:33 |
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Weekly Update As Requested By Board Staff:
MP meds: Benicar 20mg@1000,1300,1600,1900 & 40mg@2200,0400.
Minocycline 25mg@1200 Monday, Wednesday, Friday
Palliative meds: none
Light exposure: 24/7 Noir use, SPF45 with ZincOxide if outdoors, hat, longsleeve
Symptoms: Severe feet cramping, lower back pain/pressure, abdominal pain, chest pain, spleen pain, delayed cognitive fuctioning, insomnia, fatigue, neck lymph gland engorgement, panic attack/depression/nervousness, restless leg HS, burning/itching, cold hands and feet, ear pain, severe GI distress after minocycline, had similar issue with doxycycline, Trevor says that this is not an allergy and I believe that.
Comments: JAQ and her teachers are hanging in there during her home and hospital visits. For a 12 year or any human this is alot to endure.
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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Posted: Thu Nov 22nd, 2007 08:58 |
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| Thanks for checking in. JAQ sounds like a trooper. Are her symptoms intolerable? Is she able to rate her symptoms on a scale of 1-10? Is your home lighting low? How often does she go outside during daylight hours? How long does she stay outside? (Are these outings unavoidable?) The answer to these questions helps us understand how she is feeling and how we might make recovery easier for her.......
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JAQ
Member in Phase 3
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Posted: Mon Nov 26th, 2007 08:32 |
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Weekly Update As Requested By Board Staff:
MP meds: Benicar 20mg@1000,1300,1600,1900 & 40mg@2200,0400.
Minocycline 25mg@1200 Monday, Wednesday, Friday, Repeat
Palliative meds: none
Light exposure: 24/7 Noir use, SPF45 with ZincOxide, hat, longsleeve
Meg Board Staff Questions? Are her symptoms intolerable? Good Question, very complex. Is she able to rate her symptoms on a scale of 1-10? Yes. Is your home lighting low? Very Dark. How often does she go outside during daylight hours? We go out after hours usually. How long does she stay outside? She does not stay outside during the day at all. Hat, Noirs, Longsleeves for trips only as needed. We walk at the mall at least 5 days a week to avoid sunlight. People always ask about her sunglasses, hat, longsleeves, etc. especially at mass. JAQ is on home and hospital, home most of the time.
JAQ has a very complex clotting disorder from the latent lyme disease. This is exaccerbated by her high LPa. We are working with a TEAM of medical professionals who have all contributed to her care. Can only convey so much via http://www.
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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Foundation Staff
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Posted: Mon Nov 26th, 2007 09:59 |
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Thanks for checking in......
Please list routine measures to prevent sun exposure (NoIRs, covered up, sunscreen) in the signature line only.
In your next report, just describe natural light exposure (e.g. 1/2 hr trip to mall or 2 hr trip to doctor on Monday only or 2 hr drive on Friday) for the week. This provides a clue to the cause of any symptom increase.
Please list and rate all significant symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how she is doing since symptoms should be tolerable at all times.
We understand that JAQ's care is very complex but she is also a participant in an experimental clinical study and we need specific data to monitor her progress and safety with MP meds. Thanks for complying....
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JAQ
Member in Phase 3
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Posted: Mon Dec 3rd, 2007 01:25 |
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Weekly Update As Requested By Board Staff:
MP meds: Benicar 20mg@1000,1300,1600,1900 & 40mg@2200,0400.
planetdrugsdirect.com great source for benicar, thanks board staff!
Minocycline 25mg@1200 Monday, Wednesday, Friday, Repeat
Meg Requested:In your next report, just describe natural light exposure (e.g. 1/2 hr trip to mall or 2 hr trip to doctor on Monday only or 2 hr drive on Friday) for the week. This provides a clue to the cause of any symptom increase. Reply: Natural light, trips to walk at mall X1 after hours, trip to movie with dad X1. JAQ is home with very little natural light exposure.
Meg Requested lease list and rate all significant symptoms on a scale of 1-10 (1 meaning barely noticeable and 10 meaning 'call 911') is helpful. Rating them at their highest for the week paints a good picture of how she is doing since symptoms should be tolerable at all times.
Reply:
- Arthralgia/Joint Pain: [Hand, wrists, knees, ankle, elbows] (TW daily PS 1-8 variable)
- Low Back Pain: (TW 5 times PS 4)
- Bowel Problems [diarrhea] TW 1, PS Mild
- Cardiac: [Chest Pain] (TW daily PS 1-7, radiates to jaw, vagus to left arm)
- Cognitive: [Memory, Brain Fog, Slower Cognitive Functioning] (TW daily PS 1-5
- Fatigue: (TW all the time PS 6-10)
- Insomnia (TW all the time PS restlessness)
- Myalgia/Muscle Pain: [Shoulders, hips, legs, arms, head, ears, sinuses] (TW daily PS 4)
- Nausea: TW 2 PS 3
- Numbness vs Cold: [arms, hands, feet] (TW daily PS3)
- Other Neurological: [Depression, Crying, Nervous Tremors] (TW bedtime PS 4)
- Panic: Attacks (TW 2 PS 4)
- Paresthesia: [Burning, itching] (TW Bedtime every day PS 1-10 varies)
- (TW total for the week, PS Pain Scale 1-10
Severe Itching was evaluated by several other scientific members who have come across her path. This is not the first treatment that has evoked this response. Does Trevor Marshall and his board staff have any clues? Does this relate to her fibrin clotting disorder? Others believe so.
Also would like more information on Lyme Toxins from the board staff. Lyme is different than many other illnesses. Have closely followed this research in multiple venues.
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14yo/LLD,HighLPa,Thromboembolism,Hyperviscos, (SEP07 1,25D:59,25D:34)(Ph1NOV07)(ModiPh2MAR08:25D29) (Ph2MAY08)(Ph3JUL2008:25D25)(NOV2008:25D22)Nattokinase,Magnesium, Revos, QuRn(MOM)
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