Here I am Again :)

[susanmary]

Hi Everyone – hoping Lynnie from Australia or anyone that may know something weighs in . I posted a long description Before so I do not want to waste your valuable time.
MY issues extremely debillitating sudden onset muscle pain followed by Arthritis,and joint pain all bloods in normal(or were) parameters and I had every test known to man done too many to list here!!!!. After many years (approx a dozen) and every type of remedy except heavy duty drugs found book read many many times and this site.
I persuded my Dr to give Minomycin a go after presenting her with the facts and science based evidence etc (she had seen how pro-active I have been so was open to trial)

OKAY started “Mino” 17th Feb 2014 100mg MON WED FRID. after about 3 months great results “Off the wall pain all the time” to about 5/6 – I was ETERNALLY grateful. At week 59 we added Aussie name “KLacid” 250mg MON WED FRID to see if it would nudge down pain wise a bit more as I finally found some part time work again very GRATEFUL.

Everything blood test wise (done regularly) ** NOV 2015 absolutely remained the same and I was one Happy girl as you all know level 5 pain is a LOT better than constant over the top.

UNFORTUNATELY whilst still feeling absolutely fine (tired which I put down to work and actually going out sometimes) NO OTHER SYMPTOMS! My blood test **FEBRUARY 2016 – liver enzymes ballistic Doctor and I both Gobsmacked :(:(:( nothing else in my life changed.
We did very carefull elimination taking everything vitamins Klacid etc out of my diet ENZYMES kept rising 🙁 ** MARCH 2016 stopped Minomycin and all blood levels QUICKLY went to normal . ** Retrialled Minomycin MAY 2016 immediately started to rise :(:(:(.

OFF all antibiotics **JULY 2016 – NOV 2016 pain back to pre-start levels SIGH SIGH SIGH (ungrateful body)
Dr and I trialled Klacid alone**NOVEMBER 2026 2x250mg MON WED FRID but after 20plus weeks no problem with blood work but NO pain relief – so we ceased to re-group.

I had previously seen DR D in Sydney (my Gp very happy for me to double check) and run her through and asked opinion on my original routine and she said keep doing same , do some extra tests (bowel etc etc) which I did, and add more probiotics, legume family which I did.

I returned to her yesterday with a much better set out of the above GARBLE – I am a “tad” wary as she has sent me for full blood panel (only did it March2017 and took it with me and last Thursday June 2017 Liver Enzyme panel still perfect) She has NOW told me to take out all legumes but not explained why after getting me to add them ( I am totally Gluten Free 30 years) and has suggested DOXY but 25mg only every day for 6 weeks but I would have preferred her to explain why or even if then I would go MON WED FRID if I didn’t re-act . I am concerned this may just make the DOXY resistant even if it doesn’t raise enzymes.

I know you aren’t Doctors but has anyone with the Arthritis side been prescribed going low 7 days ???? I would have I suppose thought we would try DOXY or something else MON WED and FRID and test Liver regularly to see how I went especially as I had done 100mg Mino without increasing it slowly -yes I did Herx but handled it .

Unfortunately I was not able to ask DR I did try very hard but we don’t have that sort of rapport – so I am just terribly confused as to why and my gut(no pun intended) instinct is also a bit wary.

Goodness sorry if half of you have fallen asleep ! SO anyone why would 7 days x Weeks of 25mg DOXY prove anything or do anything ?? Happy to go for newer tests not scared of needles. LOTS of pain – it was such a wonderful 106 weeks but the memory is fading after 11 months OFF MINO.
Warmest regards and gentle hugs to you all
Susan

[lynnie_sydney]

Hi Susan
Very difficult to say but it may well be that she is cautious and getting you to trial the doxy at a very small dose to see if you have a reaction. If you have developed a hyper-sensitivity or allergy to mino, that might well also apply to doxy. It may well be that this is just a way to start and see how your body tolerates/doesn’t tolerate it rather than a long-term treatment approach.

If you DO experience issues with doxy, then you can also trial tetracycline.

The legumes elimination may well be her now suggesting trialling something else dietary-wise. She does believe in dietary components to treatment approach and, sometimes, these can be a matter of trial and error.

I know it can be difficult to ask questions of a doc, especially when you are tired and in pain. But we can only speculate about all this and she is really the only one that can properly answer your questions. She is one of two docs I see and I’ve never found her at all reticent to respond.

Hope you find a way forward soon!

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]

Thankyou Lynnie for answering.

I sent you an email thanks as I couldn’t log onto computer.
Yes – going to have to think about this. I went and had extra blood tests but “maybe” I see if I can find out about “Doxy” 25mg x7 days for six weeks as this is what threw me.
Yes I am very very used to any kind of supplement being added or taken away including foods as I have a low salicylate, No glutenat all, and the only dairy is one sppoon of pot based no sugar yogurt to mix Arabinex in – I just would have liked to ask why BUT not as concerned as I am about the dosage and daily issue.
THANKYOU very much for everything and I will work and muddle my way through.
Warm regards
Susan

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