Update

[sierrra]

Hello!

After 3 weeks completely off medication, I started getting a little stiffness and achiness back in my hands, so I started taking 100 mg. M-W-F and that has been perfect. Besides the yeast overgrowth (and feeling of wellness) that prompted my going off the med, I have hyperpigmentation that looks like a suntan (I remember Ritchie talking about this.) Several times a week people comment on it. “Where have you BEEN?”

For 3.5 years, I was taking 200 mg. 7 days a week. At a lower dose, I'm hoping to receive therapeutic benefit with fewer side effects. (Though comparatively, these side effects are not bad ones.) I feel like I'm getting close to going off completely.

Grateful,

Sierra

[lynnie_sydney]

Good to hear from you Sierra! Seems like a good idea to 'nip those aches in the bud' and re-start at a pulsed dose. Keep us posted on how you go. Lynnie

BTW, you may find that you herx a little bit re-starting on a changed regimen.   

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)

[Cheryl F]

[user=1037]sierrra[/user] wrote:

Hello!

After 3 weeks completely off medication, I started getting a little stiffness and achiness back in my hands, so I started taking 100 mg. M-W-F and that has been perfect. Besides the yeast overgrowth (and feeling of wellness) that prompted my going off the med, I have hyperpigmentation that looks like a suntan (I remember Ritchie talking about this.) Several times a week people comment on it. “Where have you BEEN?”

For 3.5 years, I was taking 200 mg. 7 days a week. At a lower dose, I'm hoping to receive therapeutic benefit with fewer side effects. (Though comparatively, these side effects are not bad ones.) I feel like I'm getting close to going off completely.

Grateful,

Sierra

Sierra,

That is what we have done with Jess, under doctors recommendation (actually two AP doctors).  The bad news is, at least as far as Jess is concerned, is that at that dose, she lost her mino tan.  She is very disappointed, she loved the attention of constantly being asked about why she was so tan.  For Jess, it was a beautiful and even golden tan.  She is still very tan, but I believe that it is what would be normal for her skin tone and considering she spends at least 20 hours a week in the San Diego sun in a swim suit. 

Good luck, let us know how it goes!

Cheryl

[Patti D]

Wow Sierra,
So glad you are doing so well. I believe we started AP at the same time so here goes.
I take 100mg. every day of Mino and have for a year but I want to start taking a pulsed dose now. Did your bloodwork come out normal , or are you pretty much symptom free? I cannot have big changes that effect my ability to function at work so need to get som ideas.

Thanks Sierra!
Patti

[Maz]

Sierra, that is such terrific news that you made it 3 weeks without any sign of RA…and very wise to resume on a maintenance, pulsed dose. I'll second Lynnie's comment that if you feel a little more achey than usual restarting your mino, it will likely iron itself out over time and just a wee bit of herxing. My fingers and toes are crossed for you! 😀

Peace, Maz

[Kim]

You're such a pro by now, Sierra, that I know you'll be able to figure out what dose you can be comfortable with.

Take care…..kim

[mschmidt]

Sierra,

You are so in tune with your body that I have no doubt you will figure out what you need to do to maintain. I have so much respect for you being able to listen and trust what your body is telling you. Keep up the good work and much continued success on your journey to wellness!

[sierrra]

You guys are so wonderfully supportive. Thank you. 🙂

Sierra

P.S. Re: bloodwork–haven't had any done. I'll be seeing my rheumy in a couple of months, after a year. She doesn't typically do much labwork.

[lynnie_sydney]

Sierra – just another point. Historical protocol (Dr Brown) maintained that the decision to cease abx usually came after symptoms resolved and bloodwork normalised. So it might be an idea to get those labs done. For more info, see text in Continuing Treatment During Improvement and Laboratory Tests in the Historical Protocol section on the main site. Link below. Lynnie

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Continuing-43793

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)

[Lynne G.SD]

Yea Sierra;
    I have been at that point for the last 2 years and doing just great.I tried going totally off the mino but after a couple weeks I would get that stiffish /burning feeling in my hands and would have to take 100mg at least 3 days in a row to knock it out.Now  I just take 100mg 2 or three times a week  and stay at a good point.My worst ennemy is working too hard and getting tired.That is when the SD tries to break through so now that I know how things go I take 100mg the morning of a super hard day and that works wonderfully.I guess it's about time I change my profile.
                 Lynne

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