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Knochen
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| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
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Posted: Wed Nov 5th, 2008 23:18 |
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Is he on a 6 hourly schedule or an 8 hourly schedule?
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Wed Nov 5th, 2008 23:24 |
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| He is on the 6 hour...
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Knochen
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| Joined: | Wed Oct 17th, 2007 |
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Posted: Thu Nov 6th, 2008 01:27 |
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The 6 hour schedule gives you more leeway to miss by a bit. 8 hours is about the maximum before you really lose the blockade. A 15 minute goof shouldn't penalize you. (my non-medical opinion, but this has been my experience)
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Thu Nov 6th, 2008 02:51 |
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Thank you so much for getting back to me, I will not worry if he's late. I kinda thought is would be ok...
Thanks again,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Wed Nov 12th, 2008 22:07 |
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Hello,
My husband has finally weaned off Prednisone and currently is in the 2 week waiting period before starting Mino and I was wondering with the Prednisone still in his system will this cause the Mino to react slow in killing the bacteria? I read on the site it could take months for Prednisone to be out of the body but I'm curious if he will have a slow start. I know the MP process is not a race and it will take time to get him healed. I may have missed a link that talks about my question and if so please direct me there.
Thanks,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Wed Nov 19th, 2008 17:49 |
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Hello,
I'm not sure if I need to start a new thread or not but I was wanting to know if anyone has used the a compounding pharmacy for Mino? I sent an email but not sure if it's ok to use.
Thanks,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
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Posted: Wed Nov 19th, 2008 22:56 |
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Hi Mindy,
There are threads on this, but I'll quickly say, yes. Last year I used my pharmacy's compounding talents for not only minocycline, but also two of the other medications.
When I've done comparisons, their prices have always been reasonable, and I really like the personal service they have provided since I started using them a year ago. (They don't charge to mail out my orders either.)
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Thu Nov 20th, 2008 00:30 |
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Thank you Joyful! I was a bit nervous on rather or not to use them. I did go ahead and call today and to fill Mino would cost me $35 dollars which isn't to bad for 90 day supply. The guy I talked to was awesome and so very helpful. I will try to find the threads about them and do some reading, sometimes I can't pull everything up it's weird must be my server.
Thanks so much,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Mon Nov 24th, 2008 01:30 |
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Hello,
Can somebody change this thread to Mindy's questions?
My husband is to start Mino tomorrow the 24th but I was wondering if it would be ok if he started it on the 28th the day after Thanksgiving? I didn't want him feeling ill with possible herx on Thanksgiving day. He has been on Benicar now for 2 wks. Any help would be appreciated.
Thank you,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
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| Posts: | 879 |
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Posted: Mon Nov 24th, 2008 01:35 |
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Hi Mindy,
I think if you refer back to the guidelines: Weaning From Steroid Medications
You may find that some people stay on Benicar only for longer than two weeks before adding in the first antibiotic to assure they have stabilized before making any more changes. 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Mon Nov 24th, 2008 01:42 |
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Thank you Joyful for fixing my thread and I will refer back to the info. I don't know why I didn't think about doing a search for the answer, my bad!
Thanks again!
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Mon Dec 8th, 2008 19:21 |
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Indstead of my thread reading Mindy's Question Weaning from Predinsone could it be fixed to read Mindy's Question minus the predinsone part? That way I can keep all my general questions in one thread to add on.
My question today is I'm confused if the meds are helping my husband I believe they are just thought he would have a tougher time but has only had headaches, nausea, VERY tired and over all felt bad but nothing like we read could happen. His back was hurting him a lot and says that feels better. I know people are different and not everyone will have the same feelings but is this normal? How do we know to move to 50mg mino sicne he's not really having herx?
Very confused!
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 445 |
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Posted: Mon Dec 8th, 2008 19:52 |
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Not everyone has intolerable herx, in fact the guidelines are designed to stop that from happening as much as possible! Headaches, fatigue and nausea sounds like plenty to me.
As the Phase 1 guidelines say, "Allow a week or more between increased doses to make sure the Immunopathology is not more than the patient wishes to tolerate." So if your husband has spent more than a week at the current mino dose, and he feels able to tolerate more IP, then it's time to increase.
What is your husbands's current 25-D level? It makes a big difference to the rate of bug killing.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Tue Dec 9th, 2008 17:41 |
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Thank you Josh for your reply I'm waiting on a call from the doctor's office on the 25-D test results, they are never in a hurry to get back!!! My husband will be seen again on the 18th next Thursday I believe.
Thanks again,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Tue Dec 9th, 2008 19:13 |
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Hi Josh,
Got the results of his D levels these were taken back in 09/2008 before starting MP.
Vit D 25 hydroxy 24.9
Vit D 1,25 Dye Hydroxy 34.9
We don't know what any of it means of course but hope Larry will be able to continue the MP. Is this why he isn't having strong herx?
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 445 |
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Posted: Tue Dec 9th, 2008 19:18 |
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| Don't worry, your D levels can't exclude you from continuing the MP. The goal is to get the 25-D below 12 ng/ml for optimal immune function. I see you posted these results in the D results section, so I'll let P.Bear give you the full analysis.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Tue Dec 9th, 2008 22:07 |
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Josh,
Without adding another reply to my results post how can I add that Larry was also on Predinsone when the tests were taken? I'm not sure if that matter's or not but wanted to include it if it's important. Also I wanted to thank you for taking your time to answer my posts! Take care.
Thanks,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
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Posted: Wed Dec 10th, 2008 00:40 |
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No worries.
You should note the prednisone in the other thread, as per How to post your D-metabolite Test results. Edit your post or add another one to the thread, it doesn't really matter which.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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mindy
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| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
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Posted: Sun Dec 14th, 2008 01:30 |
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Hello Everyone,
I hope it's ok to keep posting in my threads instead of adding my questions to others but I find it helpful to me to have everything in one spot.
My question stems off of Aunt Diana's reply to Reetsy's Questions about lower Vit D and herx. My husband has had only headaches, back pain, fatigue and one day he felt dizzy I know all of those are listed as herx but I guess we are still confused on how to know if the meds are working. His cough has returned but it's nothing like it use to be before MP but seems to have returned a bit. He started 25mg on Dec 1st stayed on it for a week and went to 50mg 12/11/2008 I'll recheck to make sure that's the correct date because he wasn't feeling the headaches, still back pain and fatigue but overall just wasn't feeling what he felt on the 25mg. Once he lowers the Vit D will he start to feel more herx and are we doing this right? I have read and read and read the info over and over again but something just isn't clicking with me or him. I guess we just assumed we would see him react bad and that would be our sign it's working. I'm probably being silly but I feel maybe we are not doing something right.
My wheels are spinning and maybe I just need to get it in my head that even though he is not having strong herx it's working. I figured he would have a tough time especially after reading MP success stories and how people had a hard time.
Wishing everyone well,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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mindy
Member
| Joined: | Thu Sep 18th, 2008 |
| Location: | Ottawa, Kansas USA |
| Posts: | 119 |
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Posted: Thu Jan 1st, 2009 23:07 |
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Hello,
My husband is getting discouraged that the MP is not working as he is not having any herx reaction is Vit D is 20.8 now and I told him from what I understand he won't feel a lot of herx because his Vit D level is still a bit high that when it comes down he will feel more herx, am I wrong?
Right now he is taking 40mg of Benicar every 6 hours and 100mg of Mino every other day getting ready for phase II once we receive info back from Dr. Marshall. If anyone would shed some light on this I'd appreciate it! I don't want him to give up.
Thanks,
Mindy
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DX: Lung Sarc 12/06, avoiding D 9/08, Started Benicar Phase 1 10/08, Off Prednisone 11/08, Started Mino 12/08, Ph2 1/20/09, Ph3 8/17/09, 4/09 D 13.6, 8/09 D 16 Dec 09 D 12.0. Thank you Dr. Marshall & Team.
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