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Martha
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| Joined: | Mon Aug 23rd, 2004 |
| Location: | Utah USA |
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Posted: Sun Dec 5th, 2004 23:54 |
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from Benicar Martha's progress
I've now been on the minocin 100mg for a week plus the benicar 40 mg q6 and quercitin when I feel my heart speeding up. I've also gotten my Noir's. I'm really not light sensitive inside at all and the light doesn't effect me much outside either. The 40% Noirs really make things dark in my house. To the point I don't feel like doing anything because I can't see...it seems like most people feel better and get relief with their indoor Noir's. The light sensitivity seems to not pertain to me with my scleroderma...I thought the wearing of the Noirs was going to make me feel better in the house and cause me to desire to where them and become dependent on them. So far they just frustrate me because I can't see anything.
My face feels like it is tightening even more. I know that it was begining to tighten with just the 200mg/day of Minocin for 3 years so that wasn't the answer either. But if the minocin is killing the bugs that are causing my fibroblasts to overreact and deposite collagen and the benicar is enabling the minocin to do it's job more effectively, why would the bug die off cause my fibroblasts to cause more hardening in my skin????? I understand a herx to make you feel more fluey and just generally bad but why would my skin continue to tighten?
So far the only positive with the addition of the benicar and alternating minocin days is that my breathing & cough are better on some days. My hair continues to fall out massively. My kidneys still hurt and my skin is getting tighter on my face.
Dr. Marshall-could you please tell me when you would expect my skin to stop tightening with this disease? Also, minocin seems to be the only antibiotic that people with scleroderma who respond positively to respond to at all. I've never heard of anyone with SD getting relief with zithromax or biaxin. I know you are still experimenting with antibiotic combos...how do I know that the same combos that work with sarc will respond to my SD.
My situation I believe is more grave than many here as most with SD don't make it past 5-10 years and the dying process is very ugly for scleroderma victims.
Much thanks, Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Posted: Mon Dec 6th, 2004 01:28 |
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Martha,
It sounds like you're having a pretty rough time of it. The pleomorphic bacteria that have triggered your abnormal immune system response and the scleroderma symptoms cause a Herxheimer reaction as they die. The Herxheimer reaction exacerbates disease symptoms. The Herx reaction is a result of your immune system responding with inflammation to the endotoxins given off by the dying bacteria. This inflammatory response is temporary but unavoidable. Because one of your primary disease symptoms is skin tightening due to the inflammatory process, it isn't surprising that this symptom is worse since you began taking Minocin with Benicar.
I wish there were some way to avoid the Herx especially when it seems to be making the disease worse and it's easy to lose confidence. The symptoms are worse but the root cause of those symptoms is being eliminated so the end result will be symptom resolution.
You asked how we know that Zithromax and the other antibiotics used in phase three will be effective for you. Trevor says that antibiotic choice is not just species-related. Several of the antibiotics we use on the MP bind into different parts of the 70S Ribosome, so they are complementary, and act together to reduce protein synthesis. Another antibiotic is an anti-metabolite, which weakens the bacteria by preventing them from making the building blocks of DNA.
The fact that these same antibiotics have not been previously successful in treating scleroderma is because they have not been taken in the right combination with the Benicar blockade in place. Benicar allows the immune system to 'see' the bacteria and work with the antibiotics to kill them.
If the NoIRs make life too dark for you indoors, you only need to wear them when you are staring at something bright like the computer monitor or TV screen.
If your symptoms are intolerable, you can follow the phase one guideline for minocycline dosing alterations to ameliorate the Herx reactions. But you will want to proceed to phase two as soon as you feel like you can tolerate a little more Herx reaction because that is when the real bug-killing takes place.
I hope that reassures you. I realize that you are in uncharted territory with the Marshall Protocol. But your D-metabolites tell the story of Th1 inflammation. The MP has proven effective at treating other Th1 diseases and your Herx reaction indicates that it is working for you too.
Hang in there,
Meg
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Martha
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Posted: Mon Dec 6th, 2004 13:29 |
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Thank you Meg-I've felt bad for years, but now that the disease is visibly showing in my face-it really is depressing. Guess I am vain afterall.
I do want to proceed to the zithromax as soon as possible. I just always feel bad. I never notice a increase or decrease of symptoms with regard to the mino. The only time of respite is right before my period-like a day or two before. Weird-I try to figure what hormones are high and low at that time. I guess it's progesterone that causes us to bleed....when I've used progesterone cream in the past, it hasn't made much of a difference in my symptoms.
Boy, this scleroderma is so tenacious. It almost makes you feel just like dying and giving up.
Thanks for your encouragement, Meg-you are awesome and so smart!!!
Best, Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Mon Dec 6th, 2004 17:47 |
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Hi Martha,
I know how you feel about the frustration of your illness and being a bit apprehensive to go into uncharted waters, as many of us do. 
Have you sent an em to Suzanne for the questionaire to complete prior to starting Phase 2? This will help alleviate some of your concerns, since it's sort of a checklist of questions to ask yourself before beginning Phase 2. After completing it, you'll be given access to the private forum for Phase 2 and 3 MPers, so that you will be able to ask specific medication and dosing questions there.
You can read the post that pertains to this forum, HERE
It appears that your sig line has reached its max, and some of what you've included has been cut off. Would you kindly update your sig line to reflect your most recent med dosing?
A hint on fitting info in sig lines: the amt of space allowed in your sig line includes spcaces, so when possible, please abbrev and eliminate spacing to make room for more info. 
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Martha
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Posted: Mon Dec 6th, 2004 20:28 |
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Hi Reenie,
No, I've not sent an e-mail to Suzanne yet...guess I won't begin Z for a week or so yet-make sure no cardiac herx on mino first. So far so good, especially when I sense my heart acting "weird", I take a quercitin---don't like those cardiac herx's!!!!!! I will send an e-mail though to S soon.
Boy, sometimes you just get tired of running the good race with these diseases-they just wear you out...I need to see a doctor to get the z script so it will be a week or so and I need to check kidney & liver & K+ functions first before taking anything more.
Thanks for the sig suggestion update-done 
~Martha
Last edited on Mon Dec 6th, 2004 20:29 by Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Posted: Tue Dec 7th, 2004 00:07 |
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Martha,
Phase two has been updated, so don't proceed until you have a copy of the new edition. I'll send it to you as soon as I receive your MP questionnaire.
How do I know if I'm ready for phase two? is a FAQ which you might find helpful.
I know you are tougher than your disease. It will take awhile but keep in mind that you are fighting it with the right weapons. Despite feeling bad, you are slowly improving as the bacteria 'body count' rises.
Hang in there,
Meg
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Martha
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Posted: Wed Dec 8th, 2004 20:32 |
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I went down to get my labs done yesterday-renal, hepatic function, D-25-I just pray that my kidney function and K+ is still good. My kidneys & urinary tract have been hurting so much of late...my urine flow still seems ok and I'm not retaining much water-at least I don't think I am. I am getting fat from laying around and eating like a pig though. But when I try to indent my fat ankles with my finger tip, they immediately rebound so I'm hoping that my kidneys are hangin' in there. They must be made rock strong with the contant attack on them for the past 4 to 5 years. Like I've mentioned in the past, the only reason I know I have kidney disease is from a renal bx 4 years ago. My kidney function has remained normal.
I just hope and pray my K+ will stay down so I can continue on the MP!!!!
I also had the lab tech draw my 10 vials of blood for the scleroderma gene research study at the University of Texas. Tip for all-be sure to drink tons of water before going to get your blood drawn. Even for fasting studies you can drink plain water. It makes it much easier to draw your blood with lots of water on board.
Best to everyone, Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Martha
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Posted: Mon Dec 27th, 2004 17:41 |
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Please send me the questionair for phase II-I will be seeing doc this week for scrips-I need to get going as no more noticable herx's with 100 mg-
Thank you, Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Reenie
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Posted: Tue Dec 28th, 2004 22:22 |
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Hi Martha,
If you feel you're ready for Phase 2, you will need to ask for, and complete the questionnaire to determine your readiness.
HERE is the info for emailing for the Phase 2 questionnaire.
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Martha
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Posted: Wed Dec 29th, 2004 02:20 |
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Hi Reenie,
I can't find any questionair to fill out to return for phase II.
My blood tests came back while on the 100 mg/minocin every other day with q6 benicar...
My d-25 moved from 23 down to 18. I didn't have my d-125 measured since Dr. Marshall advises against it until you stabilize for awhile.
My creatinine is .8 and my K+ is 4.1-down from 4.4 which is normal. My Na+ was one point low at 134 but all my hepatic and renals were normal.
May I please receive Phase II protocol????? My face continues to tighten and so far the minocin has done very little if anything to improve my condition (with the use of 40 mg of benicar q6) No different from when I used the 200mg/day of minocin for 2.5 years without benicar.
I just pray the phase II will bring improvements for me.
Thanks, Martha-my e-mail is chickiegoose@aol.com
Last edited on Wed Dec 29th, 2004 02:21 by Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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