Enthesitis treatment with Minocycline (Tasmania)

[SPDF]

I have just been diagnosed with Enthesitis, which is a sub-group of Ankylosing Spondylitis and affect the insertion points of the tendons where they attach to the bones in the feet. I am particularly sore in the archilles tendons, plantar fasciitis and mid foot (anywhere the tendons connect to my feet). I have been hobbling for ages while I have waited for an appointment with a local rheumatologist in Hobart, Tasmania (Australia).

Having read The New Arthritis Breakthrough, and read a lot of info on this site, I was determined to find someone who would prescribe minocycline – and must say, was very concerned about whether any would be prepared to. Fortunately, the rheumatologist I did see knew about the book (had read it) and was open to the treatment, although suggested that the double blind trials (Dr. Brown) were for RA, not seronegative, which is what my condition is. Not to say it would not work with seronegative, but the results were based on RA. My rheumatologist would normally treat my condition with methotrexate, but said I could try the minocycline for 3 months to determine if it might work for me. I was delighted! So, I was prescribed 200mg per day (100mg morning/100mg night).

I have been on it now for a week, and on day 3, for a period of about 4 hours, ALL my pain disappeared. I went for a walk with my wife and could not believe it. I actually started to run, I was so excited (bad move!!!). I couldn’t believe it had all gone – it seemed too good to be true. Then later that night, the pain returned and I have struggled with it since. Was this a Herx reaction? And could the minocycline have taken effect so quickly, and the Herxheimer effect come on just as quickly? Wierd!

Anyway, I continue to take the Minocyn as prescribed and hope that it will work for me. I will continue to post as (hopefully) conditions improve.

Regards,
Sean

[lynnie_sydney]

I am bumping this post up so others can chime in. This is a copy of what I have already said to Sean:

200mg a day is BIG starting dose – very big indeed for those with inflammatory rheumatoid conditions and can sometimes cause unbearable herxing from toxins produced by cell die off. Herxing CAN start within a week – it’s different for everyone. And in my opinion, 3 months is not enough time because your condition may seem to worsen initially during this period (herxing). If it were me, I’d insist on a minimum of 6 months. And also, if it were me, I’d dial it back and start much lower and pulse it at least to begin with- in consultation with the doc of course There have been many who’ve been rx’d this huge starting dose (often by rheumies who dont subscribe to infectious origin and hence herxheimer response)who’ve given up on this approach pretty quickly because they couldnt bear the level of herxing produced. As one of our Volunteers used to say ‘the idea is to kill pathogens, not the patient!
Anyway, a few things to ponder.

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)

[matv]

I hope you’re taking probiotics as well. Some doctors forget to tell their patient that taking probiotics is important for controlling of yeast overgrowth due to lost good bacteria being killed off by the antibiotics. (My doctor didn’t tell me..)

I started on this same dose. While the first few days were unproductive for my Achilles pain and foot pain, I did start to feel very tired. Then my joints and my lymphatic system started getting achey. I decided to modify my treatment protocol from 100mg doxycycline BID every day to a M W F BID dose to make it last longer so I can tell my rheumy it was working (wont see him for months). It calmed down some weird symptoms I was having but then I felt nothing for a few weeks.

I decided to add proteolytic enzymes to the mix. (Serrapeptidase and bromelain) ..bad move for now.

The Serra was taken for a week so far, and its helped with pain yes, however the antibiotics have gone a bit crazy. Im getting acne ..only very slight. Its giving me weird dizzying headaches and eye pain not to mention my productive cough that has redeveloped.

I should be more patient, but im trying not to take these NSAIDs ..

If the antibiotics are doing too much, you should talk to your doctor about reducing the dosage and maybe taking the pulsed approach..just so you can tolerate it better. Its also very important to detox during herxing. Lots of clean filtered water. Try to eat foods high in fibre (not psyllium) as good sized bowel movements are important.

Anyways, you’re going to see good and bad days. Its good you’re reacting to the antibiotics, it proves you’re a good candidate. It may plateau for a bit and you might see no change. The important thing is the treatment seems ti be working. Be patient. Goodluck. 🙂

[SPDF]

Thanks Lynnie and Matv,

I did stop taking it today (Sunday) and will do as suggested (50mg am/50mg pm) and will do this on Monday/Wednesday/Friday and see how that goes.

I am not totally sure what to expect. Watching Dr Mercola on You Tube, he suggests it can be quite fast the change, and some others I have read testimonies claim this, while others (probably the majority) it does seem to take longer.

Today was a really bad day for me. It seems to be extending to the insertion points of my thigh muscles into my hip joints, as well as really painful feet (archilles/plantar fasciitis) so presume this is definitely a herx reaction.

I am pretty opposed to the MTX treatment, however many I have spoken to say that given under careful monitoring it is quite safe (this is in direct contradiction to what I read in The New Arthritis Breakthrough). So, all a bit confusing.

I am just hoping that I might see some improvement with it by the end of the 3 month initial trial so I can at least ask my rheumy to extend the period another 6 months to really ensure I give it a good go.

Thanks for your very helpful advice and encouragement,

Sean

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