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Anthony D
Member in Phase 3
| Joined: | Thu Nov 29th, 2007 |
| Location: | New York USA |
| Posts: | 117 |
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Posted: Mon Jan 14th, 2008 01:53 |
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MP meds: Benicar 40mgs every 6hrs Mino 1/12/08 25mg 48hrs
Palliative meds: albuterol in enebulyser
Light exposure: minimal, mainly staying indoors
Symptoms: nothing really significant, light dizziness when I lie down, a little chest tightening at times, very minor pains in chest at times, at times arms feel heavy
Comments:
Questions: I'm wondering if I'm doing something wrong, everyones post I read, everyone seems to have some herxing going on, not that I'm praying for pain, I'm really dont feel like I'm herxing enough, I mean I do have a high tolerance for pain, and I'm used to feeling crummy, but I feel like there should be more, also light sensitivity does'nt seem to be an issue, thou I still have my noirs on most of the time, my 25D level is pretty low so my immune system should be functioning, so why am I not herxing more, I mean dont get me wrong I feel like somethings goin on in side, but really not enough to post about. Just wondering.
Best to all Anthony
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Sarcoidosis/lungs MP 1/08 Ph2 2/08, last 25D-6, 1.25d-38, as of 10/09 25D=4, 125D=24/,Noirs covered up
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Mon Jan 14th, 2008 02:56 |
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Thanks 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?
You should be careful what you wish for........... Minocycline 25mg may not be targeting the available bacteria at this time. See How can I tell if the MP is working for me?
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc.
It may take 2 weeks to feel the effects of minocyline when you begin taking it. Until you know, it is best to err on the side of caution. Stay at each subsequent dose level for a minimun of 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms.
An increase in any symptom that correlates with MP therapy is due to immunopathology. This can be controlled by careful management of MP medications and palliative meds as needed.
Let know how it goes.........
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Anthony D
Member in Phase 3
| Joined: | Thu Nov 29th, 2007 |
| Location: | New York USA |
| Posts: | 117 |
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Posted: Thu Jan 17th, 2008 02:20 |
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MP meds: Benicar 40mgs every 6hrs Mino 1/12/08 25mg 48hrs
Palliative meds: albuterol in enebulyser once a day
Light exposure: minimal, mainly staying indoors, wearing noirs
Symptoms:I took my 2nd dose of mino 1/14/08 no real changes in symptoms, tired, at times feel cold especially hands and nose, itchy skin, oh and something new but I am not sure that it’s herx, could be a reaction to malitol sweetened chocolate, it was my stomach constant like growling noises no pain just strange action going on down there all day yesterday 1/15 today it’s gone, So I’ll lay off the chocolate for a while, take my next mino dose and see what happens, still a little dizziness when I lie down, at times arms feel heavy, also sometimes a little pulsing feeling in my right thigh, some times a lite clicking in my jaw when I open and close my mouth on the left side, also my voice is very hoarse for the last few day’s, I’ve had this before, Also my sleeping is not great, I wake up every 2-3hrs.
Comments: Sorry if I’m a little long winded but I’m really trying to be in tune with my body now and what’s going on and not be so quick to say nothings happening, even it’s subtle and very tolerable I guess it could be my immune system working. None of this intolorable at all. I will take my 3rd dose of mino today 1/16/08 and see how it goes if all stays the same I would like to move to 50mg at my next dose.
Questions:Is this ok Meg. Are all the bolle sunglasses only eqivalent to our indoor noirs, I could'nt find on their site spec's as to UV, Blu ray ect. however I do want to purchase theirs for indoor if this is true,I like there styles better.
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Sarcoidosis/lungs MP 1/08 Ph2 2/08, last 25D-6, 1.25d-38, as of 10/09 25D=4, 125D=24/,Noirs covered up
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Posted: Thu Jan 17th, 2008 05:08 |
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Based on your report, you could increase mino to 50mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the low enough/high enough dose level of minocycline that works for you is part of the experience gained throughout the MP journey. 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.
Stay at each subsequent dose level for a minimun of 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms.
See Stylish sunglasses
Let us know how it goes........
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Anthony D
Member in Phase 3
| Joined: | Thu Nov 29th, 2007 |
| Location: | New York USA |
| Posts: | 117 |
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Posted: Fri Jan 25th, 2008 00:05 |
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MP meds: Benicar 40mgs every 6hrs Mino 1/18/08 50mg 48hrs
Palliative meds: albuterol in enebulyser using rarely
Light exposure: minimal, mainly staying indoors, fully covered w/noirs when out
Symptoms: nothing really significant, light dizziness when I lie down, a little chest tightening at times, very minor pains in chest at times, at times arms feel heavy, shoulder hurts at times, tolerable thou
Comments: I'm extending next mino dose to 72hrs to see if this provokes anything before I go to 75mg of mino on 1/25/08. So far all is well it seems, so far a smoother ride than expected but I count my blessings, and give thanks for having Dr. Marshall and his great staff for all the hard work of supporting us all, God bless you all
Questions: Meg if all is well after 72hrs should I move on to 75mg of mino?
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Sarcoidosis/lungs MP 1/08 Ph2 2/08, last 25D-6, 1.25d-38, as of 10/09 25D=4, 125D=24/,Noirs covered up
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VEZ R.N.
Health Professional
| Joined: | Fri May 19th, 2006 |
| Location: | USA |
| Posts: | 2471 |
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Posted: Fri Jan 25th, 2008 01:27 |
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Anthony, thank you for the update.
Looks like you are managing quite well and will be ready to move Mino up. Please note that some members experience increased symptoms when moving abx out to greater than 48 hrs. It may be difficult to use that as a marker to increase dosage for that reason. Pay close attention to your symptoms at 48hrs. If they are tolerable moving ahead may be the answer for you. Good that you are learning to see how dosing and immunopathology are related and the effects of stretching it out to 72hrs. This will be valuable information for you as you move forward.
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 or stop the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours to see if mino 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.
As always, if our information does not provide the answer for you, please ask before you take action. Keep up the good work.
Best Regards, VEZ
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Anthony D
Member in Phase 3
| Joined: | Thu Nov 29th, 2007 |
| Location: | New York USA |
| Posts: | 117 |
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Posted: Tue Jan 29th, 2008 22:53 |
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MP meds: Benicar 40mgs every 6hrs Mino 1/25/08 75mg 48hrs
Palliative meds: albuterol in enebulyser using rarely
Light exposure: minimal, mainly staying indoors, fully covered w/noirs when out
Symptoms: nothing really significant, light dizziness when I lie down, a little chest tightening at times, very minor pains in chest at times, at times arms feel heavy, shoulder hurts at times, tolerable thou
Comments: So far all is well, no significant changes,the only thing that really concerns me is my weight, I lost a lot of weight before I started the MP, and now I've lost a little more, Ive read different post on weight here, and understand that this is part of having this disease,and I see what foods I should eat to gain weight, I just want to know everything I can do to gain my weight back, or do I just have to wait and as my body heals the weight will take care of it self, there's also muscle loss, now in the weight post I read that I should eat and rest as not to burn the calories away that my body needs,but at the same time I feel like I should be in the gym trying to regain some muscle back, please advise. Ijust got a copy of my initial blood work back, I'm not sureif I should put it here but i'v seen others here so here goes.
Glucose 83 65-139
Sodium 136 135-146
Potasium 5.3 3.5-5.3
Chloride 101 98-110
Carbon dioxide 25 21-33
urea nitro 10 7-25
Creatinine 0.85 0.50-1.30
Bun Creatinine ratio 12 6-22
Calcium 9.5 8.6-10.2
Protein Total 8.4 6.2-8.3
Albumin 3.9 3.6-5.1
Globulin, Calculated 4.5 2.1-3.7
A/G Ratio 0.9 1.0-2.1
Bilirubin, total 0.46 0.2-1.2
Alkaline, Phosphate 92 40-115
AST 12 10-40
ALT 7 9-60
TSH, 3RD GENERATION 1.20 0.40-4.50
T4,Free 1.4 0.8-1.8
WBC 5.4 3.8-10.8
RBC 5.57 4.20-5.80
Hemoglobin 12.1 13.2-17.1
Hematocrit 36.9 38.5-50.0
MCV 66.3 80.0-100.0
MCH 21.8 27.0-33.0
MCHC 32.9 32.0-36.0
RDW 21.7 11.0-15.0
Platelet count 627 140-400
MPV 7.7 7.5-11.5
Total Neuthrophils,% 67.7 38-80%
Total Lymphocytes,% 17.4 15-49%
Monocytes,% 10.1 0-13%
Eosinophils,% 4.7 0-8%
Basophils,% 0.1 0-2%
neuthrophils, Absolute 3656 1500-7800
lymphocytes,Absolute 940 850-3900
Monocytes,Absolutes 545 200-950
Eosinophils,Absolute 254 15-550
Basophils,Absolute 5 0-200
Morphological Reveiw
Moderate Anisocytosis
Moderate Microctosis
Slight Target Cells
Occasional Atypical Lymphocytes observed on smear
Slight Toxic Granulation
Platelet Estimate Increased Adequate
ESR, Westergren 42 0-15
Vitamin D 1.25 52 19-67
Testosterone, Total 554 241-827
Homocysteine 19.2 <11.4
Angiotensin Conv Enzyme 26 9-67
Vitamin D, 25-oh, total 9 20-100
Vitamin D, 25-oh, D3 9 ng/nl
Vitamin D, 25-oh, D2 <4 ng/nl
Questions: I'd like to move 100 mgs of mino on 1/31/08 if thats ok, also can I request the questionare for phase 2 now, given so far all is well in phase 1, I know it takes a couple of days to get it, Thanks in advance, Anthony
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Sarcoidosis/lungs MP 1/08 Ph2 2/08, last 25D-6, 1.25d-38, as of 10/09 25D=4, 125D=24/,Noirs covered up
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Posted: Thu Jan 31st, 2008 05:00 |
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It's good your symptoms are tolerable. Please see When should I be concerned about cardiac symptoms?
You should follow the recommendations for foods to gain weight and see Are there any guidelines on exercise during the MP?
You have a couple abnormal labs common to chronic disease.....low %lymphocytes and low Hgb. See What do my lab tests mean?
1,25-D is high and 25-D is low which is the classic picture of Th1 inflammation.
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.
Keep up the good work.............
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Anthony D
Member in Phase 3
| Joined: | Thu Nov 29th, 2007 |
| Location: | New York USA |
| Posts: | 117 |
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Posted: Wed Feb 6th, 2008 14:45 |
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MP meds: Benicar 40mgs every 6hrs Mino 1/31/08 100mg 48hrs
Palliative meds: albuterol in enebulyser using rarely
Light exposure: minimal, mainly staying indoors, fully covered w/noirs when out
Symptoms: nothing really significant, light dizziness when I lie down, a little chest tightening at times, very minor pains in chest at times, at times arms feel heavy, shoulder hurts at times, tolerable thou
Comments:I filled out questionare, got phase 2 info back,my doc will call in next abx,so I'm good there, just have one question on mino when starting next phase, the info says mino may be reduced, is this a must or can I just stay at 100mgs and see how it goes. I'm not sure I should post this question here but was'nt sure where else to post, and when we begin phase 2 where do we post. I plan to start phase 2 on 2/8/08 seeing how all is well at 100 mgs of mino, if that's ok?
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Sarcoidosis/lungs MP 1/08 Ph2 2/08, last 25D-6, 1.25d-38, as of 10/09 25D=4, 125D=24/,Noirs covered up
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Foundation Staff
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Posted: Thu Feb 7th, 2008 04:56 |
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We do recommend mino be reduced to 25 or 50mg when starting phase 2.
Post your next message in the Phases 2 and 3 forum before you begin so we can explain how to proceed.
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Anthony D
Member in Phase 3
| Joined: | Thu Nov 29th, 2007 |
| Location: | New York USA |
| Posts: | 117 |
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Posted: Thu Dec 4th, 2008 02:13 |
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MP meds: Day 71 of Ph-3, beni 40mgs 6hrs
Palliative meds: None at the moment
Light exposure: 2 hours a day this week driving to work, always covered hat long sleeves and noirs, office windows let's in day light does'nt seem to be a real issue for me to this point
Symptoms:
SOB - (5) after walking up stairs
Left shoulder joint pain (3) when moved in certain positions
Shoulder and neck soarness (4)
Knee soarness (4)
Skin rash on elbows
Voice still gone (8)
Weight still down (10)
Muscle loss (9)
Fatigue (5)
Cough with pleghm mainly in the morning after waking up, I lay on my stomach every few days to clear my chest this helps alot. amount seems to be lessening
Finger joints sore (1), have had this for quite a while, just not bothersome so never reported it
Still not sleeping straight thru the night, sleep is broken all the time, not more than 2 to 4 hours at a time.
Comments: All is tolerable so far no significant changes, just notice that I seem to be bringing up more phleghm and from deepper in my lung, but am able to get it up and out ok, sorry for the discription of this, but I guess this means a different part of my lungs are being worked on.
will be picking up ambien in a day or so, hope this helps with sleep or the lack there of.
I have noticed that I'm walking distances now that in the past my body would feel as if it were ready to collapse, now I walk longer distances with less distress if could call it that because thats what it felt like, so this is to me a good sign that things are going in the right direction.
even if it is small improvements I'm happy with it, because I definitley feel better than I did months ago, I know I still have a long way to go but it's still encouraging.
When my weight and voice come back I might attempt a few cartwheels lol, thou my voice does try to show itself once in a while, this too as sign that the M.P. is working for me slowly but surely.
WHERE WOULD WE BE WITHOUT THE M.P.
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Sarcoidosis/lungs MP 1/08 Ph2 2/08, last 25D-6, 1.25d-38, as of 10/09 25D=4, 125D=24/,Noirs covered up
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