Update on Re-Trial AP

[susanmary]

Hi
Just wanted to give a brief update just for the records.
I posted on April 28th and June 4th. Sorry went into long detail in those so no point going over especially as my typing is very slow and I am in pain.
As said just wanting to keep people updated and especially let Maz and Aussie Lynnie how it turned out.
AFTER all my enzymes came down we did indeed re-trial Mino after approx 3 months of all clear excellant once again, blood tests (SEVERAL 🙂 UNFORTUNATELY I fall in the tiny tiny percentage that this happens to. I re-introduced Mino for 5 weeks (3 times weekly so hardly a massive dose) well POO POO and double POO antibiotics had not had a chance to kick in again when liver enzymes started to increase dramatically again.
I am not looking for answers on this just updating for your info – I had WONDERFUL success and no issues except herx for 106 whole weeks so as I said POO and POO:(
ANYWAY – I took on board what you said (Lynnie Australia but Dr wanted me to re-try mino first) I am going away (all planned and paid for BEFORE my ungrateful body threw HISSY FIT because trust me I wouldn’t be going now) in 4 weeks but when I get back I am going to re-trial a different antibiotic – even if I have to make pilgramige to Victoria.

I am obviously distressed as I am unsure how I am going to handle pain whilst away for 7 weeks BUT needs must etc.
Someone kindly suggeste LDN quite awhile ago and I think I replied privately -I used LDN for well over a year before AP and it didn’t work for me.
All diet etc etc etc as in previous mail good . SO as I said just really wanted to let Max and Lynnie know in case it is helpful to anyone.
I re-test blood before I go and am “assuming” (though one shouldn’t) that it will have gone back to normal as before.
I HAVE NOT given up on AP just having to wait till I get back,re-group , and start afresh
Warmest regards to all of you
Susan

[lynnie_sydney]

Susan
So sorry that you’ve had a bad result with re-introducing the mino and that you are in pain just as you are about to go away for several weeks. I’d focus on getting some good pain relief to get you through that time and use that time away to rest and recuperate.
Make some further enquiries and decisions about ‘where to now?’once you return. I’m happy to share with you what I have done along the way (you know that I can no longer take mino) and also my experiences with docs.

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)

[susanmary]

Hi Lynnie

Thanks very much. Yes I will be re-visiting AP therapy on my return. I did see Dr D but that was before liver issues and she said just keep doing what I was doing and sent me for many many many extra blood tests etc which was costly but at least I have copies of them all.

I assume my next step on return would be to talk to Dr in Victoria and her adjunct and see where that takes me OR try again but go Klacid first which is what you had suggested – my Dr wanted me to try Mino first simply because Klacid had been added in much later and I suppose she thought the later one could have been the one to send things up.

Anyway yes I will just sort of have to work out a pain relief regime for trip and then re-think on return

Thanks for everything and yes any advice always taken on board for consideration :):):)

warm regards
susan

[Maz]

Thank you for sharing your update, Susanmary. Such a disappointment to be having this reaction to mino. I think Lyn and I can both equate (for different reasons), but keep the faith as there are experienced docs willing to trial other classes of antibiotics and as you are in Auz, Lyn is best placed to offer insight on that, Aussie med brand name alternatives, and what has worked for her.

I would suggest discussing tetracycline, a first generation in this class, as it might be okay. The formulations of mino, doxy and tetra are different in degrees, so when one in the same class might be a nuisance, others might be okay. No guarantee, of course, depending on the cause of the reaction, but possibly worth discussing the risk/benefit of a trial with the doc at any rate. There are other abx in different classes that Dr. Brown used and in various combinations, so it’s heartening to know there are other choices, though it might take some patience and effort to figure out what helps or not (just as with any rheumatic drug approach).

Hope you have some pain relief for while you are away and look fwd to further updates on your journey, Susanmary!

[susanmary]

Hi Maz

Thankyou and Lynnie and yes on my return I will be seeking out other AP therapies. Yes trying to get pain meds in pattern for this trip.

You are all very patient and very helpful and kind – kindness is a very treasured thing 🙂

Aussie – Susan

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