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Stephen
Member in Phase 3
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Posted: Thu Mar 27th, 2008 06:06 |
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Stephen is our 16 yr old son. Both of us (parents) are members and currently on MP. Our son has had symptoms of motor tic disorder and OCD since preschool. He has attended a school for children with dyslexia grades 1 thru 8. During his 6th grade year his OCD symptoms were so severe that he stopped eating. He has been treated intermintently with SSRIs, Anafranil, and cognitive behavioral therapy. He has had reasonable success. His symptoms still interfer with life at home and socially.
His test results after 2 wks on a vit D deficient diet (3/14/08) 25 D was 21 ng/ml and 125 D was 48 pg/ml. This was done frozen at Quest.
After labs Benicar was started 40 mg q 8. He seems to have clear thinking with school work since starting Benicar. He continues to use Zoloft 50mg q daily.
He started on minocycline 25 q 48 on 3/21/08. Perhaps he is more tired since on minoclycline. Yesterday developed a pharyngitis with local lymph node swelling in anterior neck.
We were not sure how to manage, but stopped Benicar for the moment and increased minocycline to 100 bid.
Stephen is on board. Sun exposure will be difficult to control because he is currently on a competitive soccer team. He is following a vit D deficient diet. Noirs have been order, although he doesn't feel he has experienced photosensitivity symptoms.
gjlsds and Leigh Ann
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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Posted: Thu Mar 27th, 2008 07:58 |
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gjlsds and Leigh Ann,
Thanks for letting us know Stephen has started minocycline. His 1,25-D is elevated at 48pg/ml and is 2 sigma high. Based on population studies, 97.72% of the population would be expected to have a lower number.
The 1,25-D is above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online). At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, putting him at risk for osteoporosis and kidney stones.
25-D of 21ng/ml is low for someone who has not been diligently avoiding ALL Vitamin D in their diet and/or supplements. High levels of 1,25-D inhibit the conversion of vitamin D into 25-D. The low 25-D correlates with his high 1,25-D and is indicative of Th1 inflammation.
Any symptom that correlates with MP therapy may be due to immunopathology. His increased fatigue, pharyngitis and swollen lymph node suggest immunopathology.
Stopping Benicar and increasing minocycline was not the correct action.
If symptoms are approaching intolerable, assess natural light exposure, assess symptoms and use the personal tool kit to be sure symptoms are not due to other factors besides immunopathology (sun exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
Stephen should be alert to correlate his natural light exposure to any increase in symptoms. See What are the new recommendations regarding sun exposure?
The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster.
If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every 3-4 hours will not work.
If intolerable symptom/s persist, increase oral 40mg Benicar to every three or fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation.
If increasing Benicar does not reduce intolerable symptoms enough, you may need to adjust mino to dampen symptoms.......take an extra dose, skip a dose, or take low-dose, high-frequency minocycline.
As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed.
Let us know how Stephen is doing.....
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Stephen
Member in Phase 3
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Posted: Thu Mar 27th, 2008 15:20 |
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We are back on board. Stephen is on Benicar 40 mg q 4. He however had received 100 mg of mino. before we checked email. Do we stop mino? Today he has lymph nodes in arm pits, front and back of neck, headache (neck is subtle), tender over liver. Do we need to check him for Mono? He is sleepy but rousable and oriented.
gjlsds
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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VEZ R.N.
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Posted: Thu Mar 27th, 2008 16:26 |
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Thanks for checking in for Stephen.
The beginning dose of Mino is 25mg q48hrs. Mino is ramped in 25mg increments only when symptoms are tolerable. SEE: PHASE ONE MARSHALL PROTOCOL guidelines.
Please assess symptoms in 48hrs before giving another dose of Mino. If his sxs are intolerable you may need to wait 72hrs before giving next dose of Mino.
It would be very helpful if you use this new reporting format when posting for Stephen to maximize our assessment of his progress, thanks.
MP meds:
Palliative meds:
Light exposure:
Symptoms:
Comments:
Questions:
Another link that may be helpful : Why and when do you recommend taking Minocycline frequently?
Let us know how he is doing and take good care.
Best Regards, VEZ
Please make sure your signature line is filled < see this link for details to include Thank You
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Posted: Thu Mar 27th, 2008 20:20 |
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gjlsds, what you are seeing in Stephen is the power of the Benicar blockade and low dose, pulsed minocycline to kill the intracellular microbiota that cause idiopathic chronic disease. His symptoms are the result of immunopathology and are best managed by increasing Benicar as you have done and adjusting the dose of minocycline.
If Stephen is not too uncomfortable, recommend you resume 25mg every other day in order to resume the recovery process.
If his symptoms are intolerable, you have the option of holding mino and waiting until the tissue concentration dissipates during which time he may have increased immunopathology or using low-dose, high-frequency minocycline to dampen quickly symptoms.
It's okay to palliate pain with the usual OTC remedies.
Let us know how he is doing.
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Stephen
Member in Phase 3
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Posted: Wed Apr 2nd, 2008 04:21 |
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MP meds Held mino as you suggested and increased binicar to q4 until today have decr to q6 Starte on mino last night at 25 mg
Light exp has been minimal
Comments st has reduced in severity. Abd pain has resolved . Ln swellling in neck is still present but not as tender. Overall sx went from 8 to 3
Plan to continue on benicar 40 q 6 and min 26 q 48
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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Posted: Wed Apr 2nd, 2008 13:40 |
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Thanks for letting us know increasing Benicar reduced symptoms and Stephen has been able to resume mino at 25mg qod.
Please 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 the immune response and when to increase as you get more experience in independently adjusting the MP meds.
Hang in there, Stephen....
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Stephen
Member in Phase 3
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Posted: Tue Apr 15th, 2008 06:07 |
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MP Meds benicar 40mg q6, Mino incr. to50mg q48
Non MP meds zoloft 50mg qd
Light exp. sun screens , sun glasses. outdoors about 1-2 hr late in the day
Symptoms LN swelling and liver tenderness resolved. Increase in OCD so have started zoloft
Plan Continue with the same mx
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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Posted: Tue Apr 15th, 2008 08:52 |
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Any symptom that correlates with MP therapy may be due to immunopathology. See What is neuro immunopathology?
If symptoms are approaching intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (natural light exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster.
If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every four hours will not work.
If intolerable symptom/s persist, increase oral 40mg Benicar to every fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation.
If increasing Benicar does not reduce intolerable symptoms enough, you may need to adjust your antibiotics. Review all options in My immune response/symptoms are too strong. What should I do? Try the options one at a time. Do not hesitate to use any of the med adjustments suitable to you.
As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.
Adding Zoloft should be a last resort.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed.
Hang in there.....
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Stephen
Member in Phase 3
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Posted: Tue Apr 29th, 2008 05:11 |
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MP Meds Mino 50mg q 48 , benicar 40q6
Non MP meds zoloft 50mg qd
Light exp continuing to try to limit exposure
Symptoms fatigue, but improving. OCD much the same mx with zoloft
Plan to increse mino when able
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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Jeannine
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Posted: Tue Apr 29th, 2008 08:35 |
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When you get to 75mg of Mino 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 it goes........... Jeannine
PS Please fill the required signature line < see this link for details to include Thank You .
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CFS FM Lyme Morgellon's Depression/Anxiety 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Stephen
Member in Phase 3
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Posted: Sat May 17th, 2008 06:42 |
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mp meds- benicar 40q6, mino have increased to 100q48
pallitive meds- zoloft50qd
light exposure- covering up, sunscreen, low lux home, traveling to school
symptoms- few episodes of nasea, thinking most of the time is clearer, ocd is the same
comments-
plan- continue present dose of mp meds, we will get 25d measured soon, we will decrease zoloft to 25qd
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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Posted: Sat May 17th, 2008 07:29 |
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Stephen, it is a requirement of participation in our clinical study and counseling on this study site to post a brief progress report weekly using the standard format so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help. Failure to comply may result in being dropped from the study because we cannot ensure your safety under these circumstances.
Please reply to moderator's questions and indicate if you followed the instructions. Did you experiment with mino and Benicar?
Zoloft is in your signature line so you don't have to report it. Be sure Doc okays your plan to cut it in half.
-Report the palliative non-MP meds you've taken for the week and the number of times you needed them.
-List routine measures to avoid light exposure (NoIRs, low lux home, homebound, limited outings covered up, lite exp. r/t work, etc) in your signature line only. Are you wearing NoIRs?
-Report the amount of natural light exposure for the week. (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs at a picnic on Friday or housebound all week in low lux home)
-rate symptoms on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe'). Indicate which, if any, are intolerable for you.
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. Before you proceed to phase two, ask your doctor about the tests you need to monitor your progress on the MP.
Keep up the good work..........
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Stephen
Member in Phase 3
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Posted: Mon May 26th, 2008 23:32 |
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MP MEDS BENICAR 40Q6, MINO 100 Q48
LIGHT EXP LOW LUX HOME, NOIR GLASSES WHILE DRIVING UP TO 1 HOUR PER DAY' OUTSIDE UP TO 3HR WITH COVER UP AND SUNSCREEN
COMMENTS MY SX ARE IMPROVED ON USING BENICAR Q 4 AND WITH INCREASING MINO TO 25MG Q 6. MAIN SX ARE HEAD ACHE 8, FATIGUE 7 AND OCD 8
PLAN I AM WAITING FOR D LEVELS AND HAVE SENT OFF THE QUESTIONAIRE. PLAN TO START PH2 WHEN YOU ALLOW ME
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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Posted: Tue May 27th, 2008 01:31 |
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Stephen, thanks for letting us know you are experimenting to see how Benicar and mino work for you.......
The routine measures you use to avoid light are listed in your signature line so you can just let us know the number of hours each day you are unable to avoid natural light exposure.
Please report key symptoms in a list and rate them on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe'). Indicate which, if any, are intolerable for you. It is not necessary to elaborate.
We have received your completed questionnaire and will respond asap. 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.........
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Stephen
Member in Phase 3
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Posted: Fri Jun 6th, 2008 02:53 |
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my 25-D is back 27 done on 5/21/08. My parents think that my D is up because of the vit d def milk and cheese may have d. We will stop this and reduce time outside. Still waiting for a reply
noted thank you.
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OCD motor tic dyslexia 125D48 Ph1Mar08 25D 42(Jan 2009) covers up lite exp r/t school
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Aussie Barb
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Posted: Sat Jun 7th, 2008 10:06 |
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| Now that you have access to the Phase 2/3 forum, please read the Information and begin a new Progress Report /post in the Phases Two and Three forum before you proceed to phase two, so we can discuss the details of your next antibiotic. Thank you, 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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