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Paulafay
Member in Phase 3
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Posted: Wed Oct 19th, 2005 02:03 |
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Hi to all -
I just added my first dose of minocyclene today after being on the benicar (did first round for 3 months) then a 3 month break and back on the benicar 40mg every 6 hours for about 4 weeks now - I took 12.5mg minocyclene at 1:15 today - I've been feeling pretty much the same as usual since I took the mino - (coughing,sob,face gets cold and funny feeling and my body aches alot,etc)... I was advised previously to start with 12.5mg mino as a precaution due to high D levels and the possibilities of severe cardiac herx... I would love more information on this as I want to do the right thing here - should I take another 12.5mg dose of mino now, later, tomorrow???? or do I just take another 12.5mg on Thursday? Help!!!! -
Thanks for everything
God bless,
Paula
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Aussie Barb
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Posted: Wed Oct 19th, 2005 02:10 |
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Paula
I have no idea what time it is there with you now, but it would be a few hours since you took the mino 12.5mg, so there is no point in taking another 12.5mg to try to catch it up... Taking the mino as 25mg tomorrow will be fine.. and the mino 25mg will be the active mino then..
see this FAQ for the information Why have you changed the starting dose of minocycline?
Anecdotal reports of beginning at and in increasing the MP antibiotics in increments of 25 mg have been positive.
But anecdotal reports of beginning at and in increasing these antibiotics in smaller increments than 25mg have not been positive.
It appears that the antibiotic dose needs to be changed a significant amount to alter the immune system response. Dr Marshall has said, "The body/immune system can *get used to* a dose level and can stop responding." <<
Why do we take minocycline only every other day? Why do I feel worse on the second day? What time of day should I take it?
The First and Constant Guide to the Marshall Protocol is the Phase One Doc.. Please check all precautions / instructions.. some have it printed to check with regularly. and it is important to follow it exactly as written for Safety and Efficacy of the treatment..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Wed Oct 19th, 2005 02:24 |
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Paula
The aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
re your Cardiac concerns see precautions and options in FAQ What is a cardiac Herx? When should I be concerned?
Though it will not slow Herxing, symptoms may be relieved temporarily by increasing Benicar 40mg to every 4 hours, or to half tablets (20mg) every 2H and herx may be slowed to tolerable by increasing the frequency of the mino 25mg.. and You can ask on the Board any time...
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Paulafay
Member in Phase 3
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Posted: Wed Oct 19th, 2005 23:45 |
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Barb,
Thank you so much for all of your time and getting us the info needed - I took 25mg Mino today at 1pm (about 5.5 hours ago) and so far I've been doing my normal routine and all is fine except for very achey/tight muscles/joints - I have about another hour to go then I will crash for the rest of the night - I've been keeping with the 40mg Benicar every 6 hours - I will change this to every 4 hours if necessary - I'm curious as to how tomorrow will go with this Mino in my system?!?! I will be picking up a prescription for the 2mg. valium and taking the recommended 1mg for muscle pain as I've taken so much tylenol in the past year I think it is best to try to take something else here and there to give my liver a break 
Thanks again for everything - I'm on my way........
God bless,
Paula
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Paulafay
Member in Phase 3
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Posted: Sun Nov 6th, 2005 01:10 |
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Hi to all -
After 2 weeks on the mino (25mg)I switched from every other day to every 2 days.... per all my husbands reading and his understanding that sometimes the mino works better when it has had a chance to wain a bit in your system - I'm not really sure that I've noticed a change with the 2 day lapse as opposed to the every other day dosage. I'm wondering when it is the appropriate time to step up the dosage to a higher mg.? I'm taking the benicar every 4-6 hours.
I also just had my D levels tested again and should have the results back at the beginning of the week - so far my ACE is the only thing that is back and it is still at 56 (same) - I'm praying that after all my lecturing on how the blood on how the blood needed to be frozen for the D test that it was actually done properly (although it was sent thru Quest Labs) we'll have to wait and see on that I guess... I'm constantly achey,fatigued and dizzy (thank God for my morning coffee which is only a very large cup but seems to get me thru the noon hour) - I haven't changed my routine as much as I'm supposed to - I'm a mother of 3 and I'm on the go quite a bit getting them where they need to be - I try not to linger in daylight - wear my noirs and
spend as much time in my "cave" as possible and avoid ingesting Vit. D - I'm having to make the MP work with some compromise... knowing it is not ideal but....
I did have a particularly emotional/hormonal day the other day - very very whacky but the next day I got my period so I'm guessing it was just the huge hormonal imbalance my body was experiencing - I'm just "normal whacky" now - hee hee.
Thanks for being here -
God bless,
Paula
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Aussie Barb
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Posted: Sun Nov 6th, 2005 01:21 |
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Paula
Thank you for your Report.. you may continue to follow the Phase One Doc.. increasing the mino when you feel that you can tolerate more herx..if necessary, you may also extend the dosing schedule to 3 or more days, whichever causes tolerable herxing.
The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule combined with the Essential aspects of diligently avoiding Light and vitamin D.. << if or when having problems please recheck these essential aspects. thank you.
Dr Marshall wrote: "The short-term consequences of Th1s not wearing adequate eye protection will be an increase in neurological symptoms caused by stimulation of the amygdalla in the brain. These neurological symptoms include fatigue, iriitability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis."
This FAQ may also be helpful: What precautions do I need to take when I am going out or when traveling away?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Paulafay
Member in Phase 3
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Posted: Tue Nov 15th, 2005 02:32 |
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Hi to all -
I just wanted to give an update - I was taking 25mg mino every other day and just went to 50mg mino yesterday - so far so good - we'll see what tomorrow holds - it is just the normal fatigue, aches and huge feeling of a "hump" in the middle of my upper back between shoulders - I hope this is something sarc related and it goes away soon as it has been bothering me for years and my husband is always telling me to stand up straight - please tell me this is part of the sarcoid (smile) - I just got my test results back (blood work was done thru Unilab/Quest Diagnostics, but drawn at doctors office this time and not at the lab - I told the dr/nurse repeatedly that the blood needed to be frozen, etc... my 1,25 was at 64 and my 25 D Hydroxy was 27 and my ACE stayed the same at 56. I will figure out how to add this info to my sig line - Take care, Paula
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MicB3x
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Posted: Tue Nov 29th, 2005 11:54 |
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Hi Paula,
I was just running thru the posts when I came across yours. I also have the extreme pain the Coat hanger area of my back. It has gotten progressivly worse over the years and is one of the primary complaints I have seen over the years from many Sarc patients. This is one of my primary and most intense Herx areas due probably to the constant inflammation that I have had for many years. It is always there to some degree but increases in intensity approx. 24 hours after my Mino dose from previous day. Some days I cannot turn my head for about 3 hours, the pain level peaks and then gradually recedes to a normal level of pain but it is constant. Heat wraps help a little at these times. My GP says that it is probably heavily profused with calcium deposits. This would be from having unusually high levels of 1,25d for many years. For me it is an area that I injured many years ago, so it adds to the pain.
Hope you are well and still on MP, Mic
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Not MP: Dx 1977 Sarcoidosis NeverTreated/ Classic Sarc Symptoms/ Dec04 25d=20/ 1,25d=40/ Sept06 25d=9, 1,25d=45 Quit Vit.d Dec. 04/Bolle 100's outdoors only
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jrfoutin
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Posted: Wed Nov 30th, 2005 01:24 |
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| I have a large soft "lump" as opposed to a "hump back" on my middle upper back (curved spine I will probably get later in life due to all the calcium leaching pre-MP). But I'm mostly just a lumpy old sofa body due to sarc, and not really planning on entering the Ms Universe hard-body contest this year anyway.
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MicB3x
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Posted: Thu Dec 1st, 2005 13:28 |
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Hi Jr,
Ms Universe? Why go back to the minor leagues when the true beauty of who you really are can be read in your many posts throughout this forum.
Your an inspiration, Mic
Last edited on Thu Dec 1st, 2005 13:31 by MicB3x
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Not MP: Dx 1977 Sarcoidosis NeverTreated/ Classic Sarc Symptoms/ Dec04 25d=20/ 1,25d=40/ Sept06 25d=9, 1,25d=45 Quit Vit.d Dec. 04/Bolle 100's outdoors only
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Paulafay
Member in Phase 3
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Posted: Thu Jan 5th, 2006 14:08 |
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| Just an update - please note the BP/pulse. All comments, suggestions are more than welcome. I've been at 50mg. mino every other day for about 2 months(sometimes I let it go 48 hours, seems to have more potentcy on that second day). I keep thinking I will move to 75mg. but my aches/pains and queasiness along with very low BP and high pulse keep me at 50mg. Yesterdays low was 58/36 and pulse at 93, later went to 68/39 with pulse at 96, leveled out at 73/40-85 a few hours later. Extreme dizziness and just general feeling of "unwellness". Today I will try benicar at 20mg every 3 hours and see what happens with that. I normally do 40mg Benicar every 4-7 hours depending on activity level,etc... all in all I manage to keep up and function thru my days, knowing that I should rest more. I need to work on this aspect as I normally just push thru instead of stopping everything and resting...sounds like a good goal for 2006! God bless, Paula
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Aussie Barb
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Posted: Thu Jan 5th, 2006 18:13 |
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Paula
Rest is indeed a very important part of managing and healing.. It is important for All to make sure of having adequate rest.
By being pushed to the limit of tolerable herxing our body is working to capacity
The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines and combined with the Essential aspects of diligently avoiding Light and vitamin D...
It is fine to stay at whatever dose and schedule within the guidelines achieves tolerable herx for you. further info >>
re your BP etc concerns..
see this FAQ for good information My blood pressure is already low. Can I take Benicar? your level of activity.. "all in all I manage to keep up and function thru my days, knowing that I should rest more. I need to work on this aspect as I normally just push thru instead of stopping everything and resting..."
Reduced Benicar dosing
You may wish to discuss with your Dr the new info re Benicar from Dr Marshall's most recent paper which should be posted in the next couple of weeks - Please note that there has been no change to the MP dosing guidelines. A modification of our knowledge has brought forward new dosing suggestions which may be a help to SOME folks. If you are having trouble you and your Dr may be interested in trialing a reduced dose of Benicar (but no less than 20mg every 6 hours) ... If it is better you may stay at that dosing, and if it isnt, it is easy to revert to the full dose again..
see also Why am I dizzy and/or fainting? is it a Herx symptom?
Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself. and do check with your Dr if necessary..
Dr Blaney wrote: I would suggest that the patient ensure that they avoid any other toxic exposure such as cleaning products, chemicalized foods, unnecessary meds supplements etc. plus adjust lifestyle to support the process. ie rest, fresh foods, water.
let us know if you have further questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Paulafay
Member in Phase 3
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Posted: Sat Jan 21st, 2006 16:26 |
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Hi to all. After experiencing very low BP(58/36 pulse 93)and lots of dizziness over the last 4 months I switched to 20mg of Benicar every 6 hrs and this has helped so much with the dizziness, BP still gets low (70/40 pulse 75) but I'm feeling better on this dosage. I also bumped my mino from 50mg to 75mg last Monday-but only took it Monday and Wednesday, I just felt very nauseas at times and real bad muscle aches. I also noticed much more wheezing and sob, so last night I went back to 50mg and within 30min. of taking it I felt as if it had taken the "edge" off a bit.
I guess I will stay at 50mg. awhile longer, my husband is good at reminding me that this is not a race.I just want to push thru and get rid of the sarc. My new years resolution is to slow down, realize when I need to take a break and DO IT! Reading the posts on this site is so helpful they always reinforce the fact that all these crazy aches/pains,etc., are not just in my head. Yesterday was one of my most difficult days and I could've just "pushed" thru it but I recently read a post that said "pushing" thru doesn't mean "tolerable" and by pushing thru and continuing to rush the healing process we could be doing irreversible damage to our bodies so I took this to heart and happily went back to 50mg. - I will keep the MP'ers mantra: SLOW AND STEADY WINS THE RACE... in the front of my mind
I'm thankful for this site and all the people associated with it - I look forward to the day when we are all cured and the medical community finally adopts the MP as the "standard" form of treatment for a disease that they continue to term a mystery illness with no known cause or cure.
Thanks again for everything and God bless,
Paula
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Aussie Barb
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Posted: Sat Jan 21st, 2006 16:53 |
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Thanks for posting Paula
you have done the right thing to drop your dosage back to manageable..
Let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Paulafay
Member in Phase 3
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Posted: Sun Jan 22nd, 2006 21:14 |
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Hello -
Barb, thanks for your support -
I'm herxing at a more tolerable level on the 50mg. of mino. My abdominal area has been pretty uncomfortable today - not sure if this might be another kidney stone developing or what??- I will blame it on the herxing for now.
I just took my first dose of 200mg. Quercetin to see if that will help with some of my consistent aches/pains and foggy head... I'll post again soon with an update on the effects of the Q.
Thanks and God bless,
Paula
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Aussie Barb
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Posted: Tue May 30th, 2006 18:17 |
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Paula, I see your post at Benicar forum directing to here.. Let us know if you have any questions..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Paulafay
Member in Phase 3
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Posted: Tue May 30th, 2006 18:21 |
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Hi - just got test results back and wanted to post for your feedback. I will post previous data to compare with the new.
02/05: D,25Hydrox - 30
D1,25 - 74
ACE - 56
12/05: D,25Hydrox - 27
D1,25 -64
ACE - 56
05/06 D,25Hydrox - 10
D1,25 - 68
ACE - 68
Also had bone density scan done in February 06 - T-score for left femoral neck -1.06
for total hip is +0.31
for L1-L4 is +0.83
The only negative "impression" listed by the physician was "the bone mineral density of the left femoral neck is consistent with mild osteopenia".
As usual with my blood work I repeatedly reminded the dr/nurse that the D test had to be done properly thru Unilab/Quest as it needed to be frozen... but I always worry that the test isn't done properly and this time with the D25 Hydroxy at 10!?!?!? - I guess we can never be sure how the test is performed but I would love any feedback you might have on these numbers.
I started the MP in March of 05 and just did the benicar (40mg every 4-9 hours depending) thru May of 05- lots of herxing,e tc... stopped MP but still avoided ingesting D and too much light, etc... started benicar again in Sept 05 and then have been slow and steady with the introduction of mino at various levels (25mg for approx. 3 months, 50 for approx. 3 months and 75 mg now since the end of March) my body takes about this long to adjust so now that I'm beginning to tolerate the 75 mg I look forward to starting the 100mg in July after we return from a family vacation then when the kids go back to school in September I will be ready to start phase two.
My husband and I will be attending the conference in LA 6/17 and 6/18 and look forward to meeting everyone and hearing the latest and greatest from Dr. Marshall.
Thank you for any thoughts on my results...
God bless,
Paula
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Paulafay
Member in Phase 3
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Posted: Tue May 30th, 2006 18:25 |
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Barb - I just missed you - I went back in and deleted my post on the benicar site and retyped onto the starts mino site - lets just blame all of this on "brain fog" - hee hee - I hope you get my new post with all my latest test results -
Thanks,
Paula
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Aussie Barb
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Posted: Tue May 30th, 2006 18:48 |
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Paula
Thanks for your info.. see Information
How often should I test D levels? What are the target numbers?
the 25D doesnt have to be frozen. re your 25D level of 10: For folks on the MP we normally expect levels sub 10ng/ml, often below the detectable limit of 5-7 ng/ml
Why has my ACE gone up since I started the MP?
What does my bone density test mean?
This Link and the Links within:
Osteoporosis and Th1 illness Risk factors, BMD testing and other information
re started the MP in March of 05: Dr Marshall recommends beginning 2 antibiotics asap.. especially after 6 months on the MP.. There is no requirement for reaching the 100mg mino level.. the time is the telling point in your case.. If you wish to be cautious there is a Modified Phase 2 which we can discuss in the Phase 2 forum after you send in your Questionnaire etc..
see How do I know if I'm ready for phase two?
see this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information to discuss with your Dr.
Before starting Phase 2, we encourage Members to begin a progress report in the Phase 2 forum to discuss recommendations re their new meds and dosing. Thank you.
Also there are other Moms of young Children who have contact here if you'd like to make contact by PM.. see this Family Topic Living Life on the MP
Thanks Paula, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Paulafay
Member in Phase 3
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Posted: Tue May 30th, 2006 19:13 |
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Barb - THANK YOU SO MUCH - I'm off to get the kids from school but I will start my reading on all the info you sent back just as soon as possible - can't wait -
Thanks again for the quick response,
Paula
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