Great news! Update, 9 months in…

[Cathlo]

Hi Airen, really delighted to read your post – so wonderful to read good news stories!
And Nikki – just had two months off mino (felt i had plateauted – I was doing well, improved a lot on it in a year, but still some aches & pains that seemed set in, so wanted a break). Always intended to go back on mino, at higher dose in hope of stirring it up/bashing living daylights out of it. Went back on it three weeks ago, at 100mg MTWTF, and after a week, increased to 200mg for three days of week. Meant to do 5 days at 300mg, but experiencing dreadful tiredness (struggling to stay awake at work, & shouting at kids more – tho not sure i can blame that on mino!) & increased pain (i presume it is herx?). Got big pain in right foot & hand (usually worse on left side)… really presuming/hoping this is herx, and i will come out the other side. Good luck and let us know how you get on.

2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.

[frhorngal]

Terrific news! I’ve been responding well to 100mg daily but have also hit a plateau- did you do 100mg BID daily or did you start with 200mg MWF and then increase?

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[rushnik]

Hi Cathlo,

Good to hear from you… How did you feel on your two months off? I had a consultation with Dr E a couple of weeks ago and he told me to try to get up to 200mg MTWTF. Dr S had replied to my mail saying to do it 7 days per week but it seems like such a high dose.. I think I’m going to stick to 100mg MTWTF until I’m used to it again and then increase only 3 days a week and take it slowly.

I do feel that I maybe need another abx to alternate with Mino… I am a strep carrier and I know that Dr Brown always used a different abx on strep cases. Maybe I should try one of the macrolides a couple of times per week?

Hope you come out of the other side too!

[PhilC]

Hi Nikki,

rushnik wrote:

I recently increased to 200mg per day and was ok for a couple of weeks but then I started to feel really dizzy/nauseous and not good at all – headache that felt like a migrane, pain behind my eyes. I am thnking that it must be related to the increased dose of Mino so I am going to give it a couple of days with no dose and then start getting used to 100mg a day again…

The info in this post may be helpful:
https://www.roadback.org/forums/topic/how-i-slowly-increased-my-dose-of-minocycline/#post-361499

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

Hi Cathlo

Always intended to go back on mino, at higher dose in hope of stirring it up/bashing living daylights out of it. Went back on it three weeks ago, at 100mg MTWTF, and after a week, increased to 200mg for three days of week. Meant to do 5 days at 300mg, but experiencing dreadful tiredness

Are you consulting an AP Doctor? After a year with tangible improvements, it seems a shame that you went off the mino. It can take 2-3 years for some to see most of their symptoms resolve. If you felt that you had plateaued, it may have been an idea to add something else into your protocol. Some AP Docs will advise adding a small amount of Diflucan or Flagyl or bio-identical hormones. Many people who stop taking mino have found it very difficult when re-starting, to get their symptoms under control the second time around. You seem to be lucky in that you are experiencing what seems like a herx response. I’m also wondering about the intention to take 300mg a day? No protocol that I’ve heard of suggests taking mino at this level – max seems to be 200mg split into 2 x 100mg doses.

If you are not seeing an AP Doc, would it be possible for your prescribing doctor to consult by email with Dr S in Iowa? He may have some suggestions for you.

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)

[Cathlo]

Hi Lynnie/Nikki – apologies the 300mg a day was a typo! definitely only aiming for 200mg a day.
i guess i came off it for two months partly as we don’t have a greatly knowledgeable doc here in the UK, and Dr E was just saying stick at same thing, and I felt i had plateaued (he is helpful, but an allergy doc rather than a rheumie). I have taken flagyl in past. I also know that my symptoms are very gut related, so I took time off antibiotics, to really try and calm/cure gut. So, after a few weeks off them, I did a 5 day water fast (horrendous to do!) – but extraordinary feeling all aches/pains go from body. I then ate very carefully, slowly introducing foods… and while some small pains did come back, I was left considerably better than before the fast. And I still am considerably better – I considered not going back on AP at all, however, I still feel the RA is there lurking, and a few wrong meals in a row, and it can show itself again in joints… so hoping if i up dose now (and intending to stay on for another year or so), it will help knock it further on head. BUT you are right, I don’t really know what I am doing… and obviously concerned reading your post. I do feel rather in the dark… and now it’s hard as got more symptoms than when i was off AP – but have to hope this is a herx.

2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.

[rushnik]

Hi Cath,

I feel the same about being a bit lost… Dr E is very supportive but he doesn’t truly believe the infectious theory – I think he thinks it’s more allergy related so he is willing to support AP but he kinds of needs direction from you rather than giving you a firm idea of how to proceed.

It’s amazing that your pains went away with during the 5 day water fast – I was reading something that said if you fast long enough, it can actually reset your immune system entirely but obviously it’s too tough to do it longer than a week and can end up being dangerous…

Great to hear that you are generally feeling better though Cath… Hope it continues!

[lynnie_sydney]

Hi both
My AP doctor (when I first consulted her) mentioned that many people with RA who are hospitalised and are on nil solid food and receive their nutrition via IV find that their symptoms greatly improve or even go away. No food is “processed” in these circumstances by the gut. She said to me that is a sign of Leaky Gut which needs to be addressed in addition to taking the antibiotics for healing to take place.

Dr LG (I’ve used his initials as I believe he also rx’s AP where appropriate) is an integrative doctor who is well recognised for his work with Leaky Gut. Below is a link to an interview with him and then also a link to an article on his site (more detailed/somewhat academic) on Leaky Gut if you’d like to take a look:

http://my.chriskresser.com/seminar/interview-with-dr-galland-on-leaky-gut-and-how-to-fix-it/

http://mdheal.org/leakygut.htm

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)

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