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Just started on AP a week ago. I'm having to develop my own protocol because my Dr. doesn't believe in it but gave m a presciption using the harvard protocol. Minocycline 100 2X a day 7 days a week. It sounds like that is how most people are starting out. HOWEVER, a few articles on the RB said less is more especially with long standing scleroderma (I've had it for 10-20 years with no major organ involvement). These articles suggest starting with one pill on MF only for the first 2 months and the going to MWF. So that is how I have started. Is anyone else taking this approach, or am I completely missing something in my understanding? Thanks. Lynn
Lynn,
Of couse none of us here are doctors, and the RB website has varing information on dosages, but, if you can tolerate the full “Harvard Protocol”, I personally would do the full dose. This dosing schedule has been proven effective for scleroderma and many experienced doctors who use this dose.
Yes, there are different theories presented on the RBF website, but with Dr. T's success with scleroderma is pretty significant.
Good luck!
Cheryl Ferguson
Thanks for the reply. I'm just so torn about this. Under the education section, then scroll down to articles, there are 3 very compelling articles why less is actually more effective. Is the protocol different for RA than for scleroderma? :?:?:?
Lynn – I feel you! One of the difficult things with this approach is that there is no one answer that suits everyone and often treatments need to be tweaked along the way to suit the individual. There are also different approaches by different doctors. It can seem overwhelming at first.
Cheryl is correct – none of us are doctors, just fellow patients. However, along the way, some things have become evident. One of those is that alot of SD patients do well or better on daily dosing. One thing that may be a factor in this is that alot of SD people dont experience a herx in the same way as RA people do. One of the things with a mammoth herx in RA people is a big increase in inflammation, which doesnt allow the abx to penetrate and do their work. I am pasting below a link to a recent thread – I found an old post from Henry Scammell that addresses some of these issues and you may find it interesting/helpful.
http://www.rbfbb.org/view_topic.php?id=2913&forum_id=1&highlight=Henry+Scammell
Other SD people will no doubt give you the wisdom of their experience. But one thing you could do, for instance, is to try the Harvard Protocol approach. If that doesnt suit, you can always have a brief wash-out period and then re-start at a lower and/or pulsed dose. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Lynn,
I started out slow (every other day) in the beginning because I did have some bad herxing. But I worked my way up to daily dosing (Harvard Protocol) and definitely do much better with daily dosing.
Hi-
The protocol does appear different for RA –it seems most folks with scleroderma can tolerate the 200 mg daily dose –I still take and follow the Harvard Protocol after over 10 years even though I am completely in remission –the percentages of success that the doctor up at Harvard produced were extremely high –While I am not a doctor the vast majority of folks I know who have been successful in treating scleroderma were at the 200 mg daily level —
richie
Hey Lynn,
Although it's true that most SD people daily dose the 200mg Minocin, I have to say that didn't work for me. I felt awful on that dose, but did well pulsing the same dose on Mon/Wed/Fri. Later we rotated in Zithromycin which helped too. The take-away on this is to know you have options in dosing, it's just a bit of a challenge at first to find your correct dose.
Whatever dose you wind up with, it's always advised to start low and slow and work up.
Take care…..kim
Hey Kim,
Thanks for the reply. That makes since too. That was my husbands thinking. He said you can always go up. Maybe I will do that approach until Thanksgiving or Christmas. With your MWF approach was it one or 2 a day? (I can be so indecisive-) Lynn
Lynn,
While I support the full “Harvard Protocol”, I completely agree that working into it is a good idea. Not many, but some people need an adjustment period to the minocin. I was one of the people who got the dizzy/nausa side effects when I started on minocin.
Slow and steady wins the race, you will know if and when your body is ready to up the dose.
Cheryl
That's what I'm thinking, it will also be easier to work on building up my iron and changing my diet to fend off yeast. A month or 2 isn't long- Thanks for the input. Lynn
[user=1716]Lynn[/user] wrote:
Hey Kim,
Thanks for the reply. That makes since too. That was my husbands thinking. He said you can always go up. Maybe I will do that approach until Thanksgiving or Christmas. With your MWF approach was it one or 2 a day? (I can be so indecisive-) Lynn
Two-100 mg caps a day, one a.m. and one p.m. was my dose.
If you know you are hypersensitive you could even start with two-50 mgs, or just start with one-100 mg (that sort of trial to see how you do).
Take care…..kim
I think I'm going to do fine. In the past I've always felt great on antibiotics (except one that they took off the market). If I get anything it will probably be the dizziness but I won't know for sure because I'm so prone to that anyway. I've been learning alot from the other post about vertigo, but couldn't really share anything that hadn't already been touched on. Have a great day. Lynn
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