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CousinTC
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| Joined: | Sat Nov 6th, 2010 |
| Location: | California USA |
| Posts: | 1095 |
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Posted: Tue Jun 28th, 2011 20:24 |
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Hello everyone,
Within the next year, I am not looking forward to having a surgical procedure. I would like to be as prepared as possible. Hopefully others can utilize this thread to help them to prepare and go through surgery, successfully as well.
Has anyone gone through the experience of surgery while they are on the MP, that they would be willing to share?
Other people may have questions. You are welcome to ask here, in this thread.
These are some questions that I have:
1. How did you decide on your Benciar, and Antibiotic dosing, prior to your surgery?
2. How long prior to surgery did you discontinue any of your MP medications? Did you wean off or just stop?
3. What medications, antibiotics, dosages etc, did you proceed with during and after your surgery and how did you decide?
4. How did you made certain that the doctors didn't slip you anything unwanted while you were out or if they did how did you tolerate them?
5. How long were you in recovery on the MP prior to having your procedure?
6. How did it all turn out for you?
7. Is there anything else, that you wouldn't mind sharing about, that could help me and others to have a successful surgical outcome?
Thank you in advance for your experiences. I am sorry you had to go through surgery. I am sure it was not fun but I hope it turned out well for you. 
Taryn
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MP Start Sept'10 | Borreliosis/Lyme, Bartonella, Erlicilosis, Mycoplasma, OA, FM, CFS, Hypothyroid | migrating joint pain |Start 25D=29 Last 25D=6.7 ng/mL Feb'13
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Freddie Ash
Member*
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Posted: Thu Jun 30th, 2011 18:57 |
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HI TARYN
This is Fred in WV. I had to have some outpatient surgery in Sept 2009 and Oct 2009 and I had been on the MP since 2005. Sept I had to have my pacemaker replaced and in Oct I had to have my R eye cataract removed. I do not know if this is what you want to know or something else but here is my story.
1) How did I decide on Benicar and the ABXs dosing prier to surgery - I was on Benicar only at that time and did have some CIPRO for a short time after surgery. But the doctor had no problem with me taking the BENICAR or the doseing of 40mg/6hours. I had not problems with these either. This was with the pacemaker surgery.
On the cataract surgery - I my doctor had no problem with my BENICAR or the dose I was on which was 40mg/6hours and I still was not on any MP ABXs. I used after eye surgery VIGAMOX 1 drop 3xday, NOVANAC 1 drop 3xday in right eye prier to the cataract surgery. I had to used the VIGAMOX 1drop 1drop in left eye 2xday due to infection in it untill I ran out.
I did have cold symptoms that lasted for about 4 weeks. But I did fine.
2) I was only doing the BENICAR 40mg/6hours before the surgeries which was not change in my MP course of meds.
3) On the medications, antibiotics, doseage ect did you proceed with during and after surgery and how did you dicide - I have answered in answer one above.
4) How did you make certian that the doctors didn't slip you anything unwanted while you were out or if they dian how did you tolerate them - I took the ER papers with me and told them this is what we had to go with because I was on the Marshall Protocol. I told them that if they gave me any EPINEPHRINE (which I had told the doctors that I could not have it due being on the MP) they would be held responsable. They ask me what it would do and I said I am not sure but if they had any questions the could call Dr Marshall about it and he would explain it to them. They did not want to do that. I do not think I was given any. Like I said before I did very well with these surgeries.
5) How long were you in recorery on the MP prior to having lyou produre - I think I had been on the MP for over 4 years. But before that I was on BENICAR only before I could talk my doctor to let me have the ABXs for about 1 year.
6) How did it trun out for you - I have done great. My pacemaker is working so well I went 1 year for my check this year from my last check up last year and they said it was still working so now go back in next year. On the cataratct surgery I have been seeing the eye doctor every 6 months up until last month and he told me my eyes were so stable that I could come back in 1 year. I did not have any MD, inflammation, granulomas, sarcoidosis, iritis and the pressure was 13 in each eye. He told me on my wide vision test I saw every one of the little start dots. So all the surgeries turned out great. I also healed well.
7) Anything else to share with othere - I think I have told everything I can think of at this time. But if any one wants to ask a question I will be glad to answer.
I hope this helps in some way for others.
Remember, we are all in this together and I am pulling for usl
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-25D-7; 125-D43
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CousinTC
Foundation Staff
| Joined: | Sat Nov 6th, 2010 |
| Location: | California USA |
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Posted: Thu Jun 30th, 2011 20:22 |
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Hi Fred, Thank you for taking your time to answer my questions! This is exactly what I am looking for!
I am happy for you that your cataract and pacemaker surgery's went well and that you have recovered well. All this is very encouraging for me.
I like how you told the Doctor about not giving you epinephrine.
I have learned a lot from what you have shared here. I will use your experiences and I hope others can use the information to benefit them also if and when they need to have a surgical procedure.
If questions come up, and they probably will, I feel much better knowing there are people here, who have been there before me that I can ask.
I hope others will share their experiences here too
Thank you again Fred, Taryn
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MP Start Sept'10 | Borreliosis/Lyme, Bartonella, Erlicilosis, Mycoplasma, OA, FM, CFS, Hypothyroid | migrating joint pain |Start 25D=29 Last 25D=6.7 ng/mL Feb'13
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Deedee
Member*
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Posted: Fri Jul 1st, 2011 02:22 |
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My husband had a heart Cath a year and a half ago. We gave the doctor the MP guidelines. It was attached to the front of his chart and Benicar was maintained. He was fine.
If I were going to have surgery, I am sure I would want to be on Benicar only, just to keep the inflammation as low as possible. Last edited on Fri Jul 1st, 2011 02:24 by Deedee
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06/08 Sarc in lymph nodes. Chronic high lipids. 2010 heath cat scan-zero plaque. 11/12 D8, 12/12 Normal CXR except scarred lymph node, normal PFTs 8/12 Off all MP meds. Metabolic Syndrome
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CousinTC
Foundation Staff
| Joined: | Sat Nov 6th, 2010 |
| Location: | California USA |
| Posts: | 1095 |
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Posted: Sat Jul 2nd, 2011 07:20 |
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I am glad your husbands procedure worked out well. I agree with you and Fred about making sure to stay on Benicar. I like that your husbands doctor attached the MP guidelines in plain sight. I will be talking to my surgeon about all of this. I am hoping he has a good attitude about the MP. Thank you Deedee.
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MP Start Sept'10 | Borreliosis/Lyme, Bartonella, Erlicilosis, Mycoplasma, OA, FM, CFS, Hypothyroid | migrating joint pain |Start 25D=29 Last 25D=6.7 ng/mL Feb'13
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Deedee
Member*
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Posted: Sat Jul 2nd, 2011 14:25 |
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| I think it helps not to make a big deal out of it or try to explain the MP. Just say, "I am on a special treatment and these guidelines are very important to maintain for my safety. Please attach this to my chart and make sure the Benicar is maintained."
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06/08 Sarc in lymph nodes. Chronic high lipids. 2010 heath cat scan-zero plaque. 11/12 D8, 12/12 Normal CXR except scarred lymph node, normal PFTs 8/12 Off all MP meds. Metabolic Syndrome
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keithw
Board Staff
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Posted: Sun Jul 3rd, 2011 23:26 |
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Good idea Deedee, obvious now you have mentioned it!
Hopefully we can get a few members posting on this thread with info I can link to the non MP thread too.
I might PM a couple of people...
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WeanPred May09 no breaks SLE, CNS vasculitis, avascular necrosis, arthritis both shoulders Ph1Aug09 Ph2Nov09 Ph3Feb10 25D35(May09)18(Mar10)16.7(Jul10)13.6(Jan11)13.2 (Oct 11)14.8(Aug 12) Entering stage 5.
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DThomas
member
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Posted: Mon Jul 25th, 2011 15:38 |
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I had the same experience with my surgery as Deedee's husband. I explained that I was on a "study protocol" and had to take specific meds at specific times. I took the ER sheet on the epinephrine with me and gave it to everyone who came in my room. I had absolutely no problems and everyone cooperated easily with all my request. They scheduled me around my med schedule and I never missed a dose of my MP meds.
I did wait to have the surgery until I was at a plateau and needed to increase my abx and waited for a few weeks after before I increased.
It seemed as soon as I used the word "study protocol" instead of the MP everyone became compliant not wanting to mess with a "study." Guess my favorable result was in the way I presented it.
One last note: Due to the "study" they gave me less anesthesia and I woke up very quickly, in fact I was wide awake in the recovery room asking for something to drink, the nurse taking care of me was shocked a bit.
Hope when you have the surgery all goes well.
Debra
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Sarcoidosis lungs, skin, throat, sinus, 25D<4 Ph1Oct06 Ph2Jan07 Ph3Jul07 Synthroid Wellbutrin Systane eye drop albuterol inhaler Tylenol light r/t working NoIRs cover up low lux home
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CousinTC
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Posted: Mon Jun 4th, 2012 00:31 |
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| Bump
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MP Start Sept'10 | Borreliosis/Lyme, Bartonella, Erlicilosis, Mycoplasma, OA, FM, CFS, Hypothyroid | migrating joint pain |Start 25D=29 Last 25D=6.7 ng/mL Feb'13
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tigerEye
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| Joined: | Fri Apr 15th, 2005 |
| Location: | California USA |
| Posts: | 41 |
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Posted: Mon Jun 4th, 2012 00:43 |
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Thank you to everyone who posted about their surgery experience, we are so lucky to have each other, I am so very grateful.
I will have a joint replacement in my large toe and I feel relieved to hear of all of your positive outcomes.
My Best to All :-))
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Catherine
Sarc~ Lungs,Lymph, Neuro. ~Fibromyalgia,CFS.Costochondritis- Dx 1996- plaquenil/methotrexate/pred. MP 3/2003 > Begin Benicar Only 40mg q6hr~ Mino q48hr 2004; Noirs, diet. 2006- Zith, Clindy. Completed Phases 1,2,3.Benicar only 2010-
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Pamela H-F
Member
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Posted: Thu Jul 19th, 2012 00:38 |
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Another surgery question
My son is scheduled to have surgery next week. They will reposition some ribs and rotate his sternum back to the way it should be. He will be in the hospitol for 5 days.
He's been taking some benicar since last fall. He started at 20 mg 2/day and is now at 40mg 2/day. He's never fully been on the protocol and hasn't taken any mp antibiotics.
We will be there every day so it shouldn't be a problem to give him 2 benicar tabs/day.
Is there anything else I should be thinking about or preparing for. I plan to print out the mp recommended pain meds.
My brain's a little fried from anxiety and stress so I'd really appreciate any help I can get here.
Thank you so much
Pam
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dietary changes-1/08,Noirs-4/08, phase 1-5/08 Sarcoidosis dx 1982 in Lymph, dx again 2007 in skin and lungs. Osteopenia, Anemia, low Adrenals, D25 <10 1-20-12.
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keithw
Board Staff
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Posted: Thu Jul 19th, 2012 00:57 |
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Take the E.R. sheet and make sure everyone involved has a copy and reads it.
http://mpkb.org/home/physicians/emergency
While we generally advise against surgery there have been few reports of bad interactions for some time so I wouldn't fret more than necessary MP wise.
Luck with the Operation and let us know here how it went.
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WeanPred May09 no breaks SLE, CNS vasculitis, avascular necrosis, arthritis both shoulders Ph1Aug09 Ph2Nov09 Ph3Feb10 25D35(May09)18(Mar10)16.7(Jul10)13.6(Jan11)13.2 (Oct 11)14.8(Aug 12) Entering stage 5.
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twiggy
Member
| Joined: | Mon Dec 20th, 2010 |
| Location: | Minnetonka, USA |
| Posts: | 165 |
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Posted: Tue Mar 5th, 2013 16:40 |
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| Hi i just wanted to share my recent experience of going to the emergency room with a gall bladder attack and ended up i n the hospital for three days. Almost a year ago I had been diagnose with gall stones. I did three gall bladder cleanses and colonics prior to those and was able to get me symptom free for approx six months. Over a few weeks in Feb I started having symptoms again. I had come to the conclusion I gave it my best and if another full blown attack came the gall bladder was coming o ut. Unfortunately I worked the weekend and my full blown attacks came Sunday afternoon. I did not have the mental ability to even think about bringing any information about the MP protocol. The pain was intense and almost nonstop vomiting. I was able to say that I brought my olmesartan and that I took it every six hrs. They assume it was for HTN and I did my best to explain about my protocol and they just said oh ok. I was NPO all the hours I was there except for two hrs Monday night. So I kept my olmesartan with me and once the nurses realized I could do it sublingual they didnt worry about it. The other advantage doing it this way was when you vomiting your stomach contents it didnt come up with it. I must say I dont like doing it this way but it worked and I was able to stay on scheduled for most of it. Also because my blood pressures are normally running in the 100 systolically and they were in the 80's the staff kept the iv fluids running high. So I remained sympton free. I had an ultrasound done and found that I needed and ERCP to see and treat if I had gall stones stuck in my bile and I did and it was infected. The surgeons removed them and cut the bile duct to make the opening larger and treated with IV antibiotics. I dont know which antibiotics but will be getting that information in about a week. I then was scheduled for my gall bladder to be removed the next day. The recovery has been going very well. It i s a week now since the surgery and I am back to normal diet, and my activity continues to increase. I believe this was a necessary process and being on the MP for two years helped me through the recovery with a stronger body. The staff was very understanding of my request of my meds and worked with me. I hope this will help others. Twiggy
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MP Dec 10/ no breaks/ FMS 90, IBS 85, TMJ 80, LYME 10, OSTEOARTHRITIS 10, OSTEOPENIA 00, GERD 85. Pain, inflammation, acid reflux, anxiety/depression, post meno 25D Nov 10: 27.6 ng/ml, oct 11:18.0ng/ml, march 12: 11.6ng/ml, july 15.6ng/ml, dec 8.9ng/ml
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