Next Step Antibiotic

[susanmary]

Hi – I posted a few times around April 28th and June 4th 2017 and it was long – so I try to keep brief both Maz and Lynnie from Australia very kind and helpful 🙂 I had very good results (like a pain gong from “this is no life” to “WOW 5 out of 10 pain I can manage this” USING Minomycin (little brown tablet) purchased in Australia Mon, Wed, Frid 100mg (my pain had been sudden and started in 2004). To be greedy because I was hoping for better results we added 250mg of Klacid (Macrolide family) also Mon,Wed,Frid roughly a year in.

I had already tried EVERYTHING except heavier drugs, incuding LDN and every other alternate therapy. I am Coeliac so no Gluten more than 30 years and take good supplements,probiotics, etc etc so as to not put any of you to extra work when you all have issues I am looking for specific advice and ABSOLUTELY a given none of you are doctors so maybe I should say views.

I did all the ground work and found my GP willing to supply as I have been with them since “get go” and they know I have done a lot of research.
ANYWAY at week 106 (with doing regular blood tests) my liver enzymes always”perfect” went BALLISTIC. I felt fine as in still 5 out of 10 pain levels.I even threw a Christmas Party Dec 2015 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! NO CHRISTMAS 2016.
We did a careful elimination of every supplement,food, anything entering my mouth 🙂 and KLACID after supplements as that had been added later – and liver enzymes kept going up SIGH. FINALLY RELUCTANTLY We took out the “Mino” and all liver enzyme markers came down very quickly I stayed in wash out phase quite a while then started Mino again and within 3 weeks the Liver Enzymes all elevated.

SO after no antibiotics for approx 4 months we started me on KLACID 500mg Mon, Wed , Frid that was approx October last year 2016 (sorry I do have notes but it is too much to put it all in and I an VERY aware everyone on this site has pain issues ) The good news is that all liver enzymes have remand perfect HOWEVER pain levels were way back up to PRE AP therapy so I have discontinued.

QUESTION – Lynnie from Aus had kindly suggested the Klacid on it’s own was not enough. For those of you that may have gone this route – my doctor “I think” will be willing to try me on Doxy or Tetrcycline or even Re-trial me on Mino and I see her in June to talk. I think it is fairly obvious from my careful elimination (all tracked) and re-trial I have developed an allergy,intolerance call it what you will.POO POO POO:(
SO would you re-try Mino, go to Doxy, or I have heard some people that can’t tolerate MINO or DOXY still can use Tetracycline (Lynnie kindly mentioned that). I have to be careful with my DR as she has been very tolerant of my imput(been with her 14 years) but with all the bad media coverage even she is getting a tiny bit jumpy and for the very first time EVER suggested I might like to try LYRICA because she hs heard it’s good for pain – I AM NOT going down that path!!!!However I think she will be willing to give the antibiotics another go – so which would you think to go with maybe Maz or Lynnie wouldn’t mind waying in.

Has anyone in Australia seen DR S (Sydney) by any chance?

So sorry to take up so much space in writing – when really what I am seeking is advice on which to go with, my pain levels are over the top and I am beside myself. PS I have no definite blood markers for RA but my Dr also knows arthritis is a dark horse – I have also had many many of the more unusual blood tests done so take that as a given.

Warmest wishes to all of you
Susan

[susanmary]

OOPS _ SORRY first line SHOULD read 2016 NOT 2017. My first liver enzyme test to come back ballistic was Feb 2016 after 106 weeks of Mon Wed Frid . So all elimination re-trial etc etc 2016 the rest of the post date wise is right – Warm Regards Susan

[lynnie_sydney]

Hi Susan, you obviously have a sensitivity issue with mino and need another approach – and that most probably is best looked at by an experienced AP Doctor. If it was me I’d be seriously considering going to see Dr D and LW in Victoria. Their protocols are usually a mix of abx and are not based on minocycline.

As far as I am aware, Dr S in Sydney has a protocol that is minocycline-focused.

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

Thankyou very much for replying – I had only googled Dr S as I had come across it somewhere before, and the fact that he was awarded an Order Of Australia recently considering the flack he has put up with made me think of him. There is also a Dr D (male) working at the same clinic and I met him years ago on one of my quests to heal and was having some vitamin IV”s at Edgecliff – Dr D has moved around a bit – probably as he too is outside the normal square.

Sorry I can’t think straight but yes Victoria has been on my radar but I know I would have to call and work out if she would even be willing to see me – the idea of travel at the moment actually makes me feel like heaving:) however I will try and get my head clear on it all and maybe discuss with my doctor. I did see Dr D in Newton and we went through a great deal of extra blood/ bowel tests etc and she thought I should just stick to regime I was on BUT OF COURSE that was before ballistic silly liver enzyme problems – DO you actually consider her an AP doctor or more an Adjunct for scripts ??? I don’t think there are any other AP doctors in Sydney or NSW ?

MAY I ask if you have had good results with your combo ?????? As I have no clear diagnosis of RA but lots of symptoms – but definite arthritis in MRI etc ( believe it or not ALL my issues started with an out of the blue MASSIVE neck spasm that never left) and I responded so well to Mino, I definitely went through Herxheimer at the beginning and of course still had some flare days.

I would consider trialling with very close liver enzyme monitoring another teracycine BUT I DO DO understand what you are saying. Once my liver enzymes were very clear for a long time I started back on Milk Thistle (along with other supps) so I would have another liver enzyme test just to make perfectly clear everything was fine before I did anything.

Warm regards and thanks
Susan

[lynnie_sydney]

Yes I have had good results on a variety of combos in the 8 years I have been seeing Dr D & LW. The regime gets changed up when necessary. Dr D in Sydney I absolutely consider an AP Doc but I consulted Dr D in Victoria first. I have used Dr D in Sydney for IV Clindy, but she is happy to let me continue on the oral regimes Dr D has rx’d as I’ve had good results with them – and she is also willing to step in where she thinks she can add to my picture, which she has done. I’ve been dealing with this for a very long time (>25 years from the beginning and >13 years on an abx approach) and she respects what I’ve learned and my input into the whole picture. And it’s a good mix for me because I use her for my primary care GP locally.

Dr D who works at the same clinic as Dr S is Lyme-focused.

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 again Lynnie
Thankyou – yes I will now ponder :):):) It may be easier for me to get to Dr D in Sydney as I have been so would be in their books. I “think” my doctor actually spoke to her that couple of years ago or was going to. SO that would be an option possibly as she has all my history and I could just take her all the blood tests I did around Liver Issues.
So glad this has worked for you – I was a much happier person on AP therapy !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Warm regards
Susan

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