Long-term Mino – How long is TOO long ?

[katieb]

Hi everyone,

Ages since I posted on here, but I am at a sort of crossroads now.

I was on Minocycline for 2.5 years up to November 2010. Doing really well, but not quite in remission due to lingering arthritis in wrists. Wrists swelling up for a few days approx once a month – and this started happening just before I stopped the mino.

On the advice of Dr D at Breakspear I switched off mino because ‘it can cause arthritic symptoms’, and instead went on to the Lyme protocol Clarithromycin plus Hydroxychloroquine (Plaquenil). No noticeable change in symptoms or any herxing over the 4 months since then.

So Dr D retired at the end of 2010, and this week I went to see his replacement, Dr Y, who is really a nutritionist with knowledge of Lyme. She now wants me to stop all abx (but continue with the Plaquenil), but also recommends a whole plethora of very expensive supplements (plus stool test which I probably will get).

I am now thinking that my recent flare ups are most likely due to my original good diet lapsing, in a big way (re sugar, carbs etc). I’d rather like to return to the mino, plus restricted diet that I did so well on in the beginning.

So – my question is – would you agree with Dr D about taking mino for more than 2.5 years ? I don’t recall reading anything about it CAUSING arthritic symptoms, unless he is talking about the stated side-effect of ‘Lupus-Like Symptoms’. Seems to me I have seen plenty of people on mino for much longer than that.

Have you been on mino for longer than this ?

Many thanks.

Katie

[hopefulmama]

Hi Katie,

I am a relative newbie so not experienced in anything but book learning, but from what I have read (Dr. Brown and Henry Scammell) it seems that you can be on AP for the rest of your life and continue to thrive. Isn’t Pat Ganger (one of Dr. Brown’s original scleroderma patients) still on AP today, like 50 years later? Sorry if I have my dates wrong on that, but my point is I don’t think he felt that AP was necessarily a “cure” rather it was a way to put his patients into remission and keep them there. So they could live long, healthy, productive lives.

Hope this helps at all. Warmest wishes.

A

[Maz]

@katieb wrote:

I was on Minocycline for 2.5 years up to November 2010. Doing really well, but not quite in remission due to lingering arthritis in wrists. Wrists swelling up for a few days approx once a month – and this started happening just before I stopped the mino.

On the advice of Dr D at Breakspear I switched off mino because ‘it can cause arthritic symptoms’, and instead went on to the Lyme protocol Clarithromycin plus Hydroxychloroquine (Plaquenil). No noticeable change in symptoms or any herxing over the 4 months since then.

So Dr D retired at the end of 2010, and this week I went to see his replacement, Dr Y, who is really a nutritionist with knowledge of Lyme. She now wants me to stop all abx (but continue with the Plaquenil), but also recommends a whole plethora of very expensive supplements (plus stool test which I probably will get).

I am now thinking that my recent flare ups are most likely due to my original good diet lapsing, in a big way (re sugar, carbs etc). I’d rather like to return to the mino, plus restricted diet that I did so well on in the beginning.

So – my question is – would you agree with Dr D about taking mino for more than 2.5 years ? I don’t recall reading anything about it CAUSING arthritic symptoms, unless he is talking about the stated side-effect of ‘Lupus-Like Symptoms’. Seems to me I have seen plenty of people on mino for much longer than that.

Hi Katie,

Sorry to hear you’re going through some blips (not uncommon) after doing so well. It does sound like Dr. D. was talking about DILE (drug-induced lupus), but there is no way to confirm this unless one is tested for it. There are some specific labs that can be run, but unfortunately, they have to be run within a few weeks of stopping mino for it to be confirmed by bloodwork, as when one stops the offending drug (other drugs, like BP meds and thyroid meds can also cause DILE), the symptoms resolve within a week or two and labs quickly normalise. In your case, your symptoms remain, so my guess is that it wasn’t DILE, but that it might have been better to have added plaquenil and biaxin to the mino in a combination approach (this is similar to the protocol I am on now except using tetracycline as I did have confirmed DILE). You might well have experienced some herxing then, as such a combination approach hits cell-walled, cell-wall-deficient and cystic forms of Lyme all at once. This is why LLMDs usually use several anti-microbials at once.

There are some instances where people do need to rotate out their current tetracycline and replace it with a different tetra for a period of time, but this is usually suggested around the 5 year mark:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

10. Does the drug need to be rotated? Antibiotic therapy is a long-term therapy, months and years in most, – even for a lifetime in some. After 5-6 years, a patient can become tolerant of an antibiotic. Rotating to another antibiotic even within the same drug class can keep response optimal and avoid plateaus.

So, no, just a layman opinion, but not sure I agree with Dr. D’s opinion that mino can “cause arthritis” (other than DILE) after 2.5 years. It may be enabling breakthrough arthritis if the dose is inappropriate or there are other underlying infections that are now revealing themselves:

15. Are there multiple organisms involved which respond to different antibiotics? This can be the situation in some patients, and using more than one antibiotic can prevent an overgrowth of the untreated organism (e.g. mycoplasma and ureaplasma – mycoplasma and yeast or mycoplasma and strep).

Some other thoughts…the monthly cyclical nature of flaring is very common with Lyme disease. The bugs are thought to be more susceptible, too, to abx at certain times in their growth and reproductive cycles, aligning themselves, as women’s cycles do, to confer survival to the community (potentially in bio-film communities). In women, herxing might be more evident at certain times, too, due to fluctuating hormone levels, as when hormones drop at certain points in the cycle, some natural hormone steroidal protection is lost.

Yup, diet is pretty important, too…I don’t think it is the full answer, but it definitely supports gut and overall health and will alter microbiota balance in the gut if bugs are being fed foods that enable them to flourish (e.g. sugars, gluten, dairy). Or, leaky gut (and candida) is an issue and food sensitivities have arisen, as a result.

So sorry to hear that Dr. D is now fully in retirement and no longer treating Lyme patients. I think Dr. H in Guildford is also recovering from surgery, so that really leaves you Ukers in a fix unless you have local docs willing and open to help. Have you thought about flying to the US, Katie, to see an experienced doc?

Do hope it won’t be long till you find your answers, Katie. It’s always lovely seeing you posting here, but just sorry you had to come back due to these blips.

Andrea….you’re right….it’s possible for people to be on low dose maintenance AP for life…there are stories in the book that mention this, too. When I got the opportunity to speak with Millie Coker-Vann a month or so ago, who still heads up Dr. Brown’s old mycoplasma labs, TARCI, she did confirm, however, that Brown’s goal was not to keep patients on AP for life and that once patient labs had normalised (disease markers and infection markers) and they had been symptom-free for a significant period of time, his hope was to get them off all meds. Clearly, some folk can do this successfully and other can’t (and re-infection or something re-compromising immune function is always possible)….seems that Scleroderma (or other severe rheumatic disease) is one disease that most people would probably agree it isn’t worth taking a risk over. 😉 Pat Ganger had SD and I spoke with her last summer…I think she’s now been on AP for 30 odd years with no problems and her SD kept well in check.

[lynnie_sydney]

Katie – nice to see you and sorry it’s because of this hiccup. My understanding (info from Ruth in January) is that Dr D is still treating patients one day per week at Newcastle-upon-Tyne.Is that where you were seeing him Katie or at Breakspear? If you are going to Breakspear, Wayne Hargraves is seeing a Dr M. there who he likes very much. If you like I could PM you her details. (Also, if you don’t have Dr D’s Newcastle-Upon-Tyne details, I could also PM you these).

In terms of mino, I was on it by itself for 5 years with no problems. (I did have to cease taking mino and doxy after around the 7 year mark (I was taking in a combined protocol) because I have apparently developed an allergy to both). I do know the historical protocol view is that it is wise to think about ab. rotation after 4-5 years.

Drug Rotation (toc)
Thomas McPherson Brown, MD, originator of antibiotic therapy, found rotating the antibiotic every 4-5 years, even within the same classification, decreased the possibility of developing patient tolerance to the drug. After a rotation period, the original drug may be reinstituted.

. https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Tetracycline-46919. However, am not sure where Dr D was coming from with his 2.5 year statement.

Re diet: the longer that I’m on this road, the more convinced I am that diet is a critical component – both in terms of contributing cause and symptom provoker. And that gluten (or rather gliadin) is a primary damage causer here for pretty well every kind of chronic disorder. My personal experience certainly bears that out. One thing that is making alot of difference for me these days (in addition to being gluten and dairy-free) is eating a primarily alkaline producing diet – something A Friend used to frequently try and get our focus on 😉

Hope you get back on track soon, Katie. Lynnie

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)

[richie]

HI–No such thing as too long —I take 200 mg daily now for over 12 years –no side effects at all —Certainly a far far better alternative to having the ravages of diffuse scleroderma —The risk of relapse is fairly great in scleroderma so even though I am in remission I prefer to be as certain as I can that a relapse will not occur —
richie

[lynnie_sydney]

Richie – yes you certainly are the poster boy for long-term mino success! 😀 However, I think the lean towards rotation after 4-5 years for a period of time (certainly from the Dr Brown historical perspective) has tended to be for those with the inflammatory forms of rheumatic disease. Lynnie

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)

[bonnielou]

I have been on minocycline (and plaquenil) for 3 1/2 years now, and I plan to continue until I hit that 5 year mark. Then I think I will try to switch to doxy for a year before coming back. I have done pulse dosing the entire time, just 100mg MWF — it has worked fabulously for me.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[katieb]

Thanks so much to all of you – hopefulmama, Maz, Lynnie, Richie and bonnielou – for your very helpful replies !

It’s quite difficult to decide what to do, as Dr Y at Breakspear is keen to eliminate allergies she thinks I have and possible leaky gut, as a way to treat the RA/Lyme, but for that I need to stop abx 😕 . I’m having the stool test done anyway, so that should tell us something. And I may be able to have a food sensitivity test too.

However in the meantime, like I said, I’d like to try returning to a (different) tetra, plus diet (now that all you guys have confirmed that it’s OK to take them for many years). I am seeing my GP tomorrow, and will take the New Arthritis Breakthrough along for him to read. It was his predecessor (now retired – aren’t they all !!) who read it and prescribed the mino in the first place. So I’m going to see if he’ll prescribe doxy for me (don’t think actual Minocin is available in the UK at present). He is pretty easy going so I’m hopeful !

Something I didn’t mention before is that, interestingly, my Rh Factor had started creeping up again when these swellings began – not quite into the zone considered ‘too high’, but up from ‘negative’. ESR and CRP both stayed normal. But I just had another blood test yesterday, so I’m looking forward to seeing those results. 😎

Thanks Lynnie for mentioning that Wayne is seeing Dr M – I can contact her if I wish. I was seeing Dr D at Breakspear. He’s being quite selective about who he sees in Newcastle – it was more important for Ruth to continue to see him there – I’m not sick enough !!

It’s a nice idea to come out to the States for treatment Maz ! If I did that, perhaps as part of a vacation (though I’m afraid it’s wishful thinking at the moment, with 2 young people now at university !) which Dr would you recommend me to go to ?

Richie and bonnielou – I am SO pleased to hear how well you are both doing – it’s fantastic !!! 😀

I’m wondering now about the Plaquenil, but going to put that in another post.

Thanks again !

Katie

[Maz]

@katieb wrote:

It’s a nice idea to come out to the States for treatment Maz ! If I did that, perhaps as part of a vacation (though I’m afraid it’s wishful thinking at the moment, with 2 young people now at university !) which Dr would you recommend me to go to ?

Hi Katie,

Some of the top LLMDs are in and around the NYC area, so coming from UK, it would make reasonable sense probably to see one of these guys. Really depends on where you’d want to vacation, though. The east and west coasts have some really good LLMDs. 😉

[katieb]

Hi again,

Maz – I hadn’t realised that Biaxin was the same thing as Clarithromycin, until I looked it up. Then I twigged what you were saying to me was I should try re-introducing the mino, as I clearly don’t have the DILE, but stay on the Clarithromycin and Plaquenil.

So I went to the GP today and asked if I could go back on the mino as I don’t have DILE. He was most happy to oblige, and seemed in a very good mood generally. So I asked if he would be interested in reading The New Arthritis Breakthrough. He seemed delighted, and said he would whizz through it by Monday !

What a result ! I am so pleased. 😀

Also my blood test result today showed RF back down almost to ‘negative’, so perhaps the Clarith/Plaq combination was just starting to work.

Going to start on the new regime on Monday after doing my stool test, and keep off the sugar/starches too, and see how it goes for a few months.

Checked back over Wayne’s posts, and I can relate to what he seems to have been told by Dr M/tests done etc. If I can avoid spending a lot of money at Breakspear, I’d prefer to do that – but I’m interested to see how he gets on – and interested to see what my stool test shows up too.

Thanks everyone for your great advice, as always !!

Katie 🙂

[Maz]

@katieb wrote:

Maz – I hadn’t realised that Biaxin was the same thing as Clarithromycin, until I looked it up. Then I twigged what you were saying to me was I should try re-introducing the mino, as I clearly don’t have the DILE, but stay on the Clarithromycin and Plaquenil.

So I went to the GP today and asked if I could go back on the mino as I don’t have DILE. He was most happy to oblige, and seemed in a very good mood generally. So I asked if he would be interested in reading The New Arthritis Breakthrough. He seemed delighted, and said he would whizz through it by Monday !

What a result ! I am so pleased. 😀

Also my blood test result today showed RF back down almost to ‘negative’, so perhaps the Clarith/Plaq combination was just starting to work.

Katie, excellent news about your bloodwork and had an embarrassed giggle over the Biaxin/clarithromycin thing 😳 …sheesh, sorry about that. I usually put clarithromycin in brackets, as it’s the generic form of biaxin. Strange how generic names are so vastly different from the original brands much of the time.

This kind of worsening really does happen after one has done well on mino alone for a while and it can take a little detective work, as sometimes it’s just an untreated coinfection having its day in the sun. In this sort of scenario, it would be a shame to give up on AP without giving it a good go with an additional, supportive abx. This is why so many use the tetra/macrolide mix, as it’s nice and broad spectrum, especially if response to mino is slow or disease is severe..but also if new symptoms arise later down the track.

You’ll be the best judge of how you feel if/when you re-introduce the mino, but some herxing could re-occur. Any changes (additions or increases in dose) can stimulate more herxing. As your pain symptoms didn’t abate when stopping the mino over the course of the subsequent weeks, my best layman’s guess is that it’s likely not DILE. It can be hard to differentiate between lupus-like pain and RA sometimes, especially if RA is still bad, but if it had been DILE (and your RA was pretty close to remission), then the symptoms would be expected to resolve within a couple weeks…sometimes days…DILE labs can take longer to follow.

GREAT news about your GP!!! Please work on him! We need more AP docs in UK…and if Lyme Literate, all the better. 😆

[katieb]

Hi Maz,

Oh no – it was just me being dozy as usual !

I’d been off the mino for 4 months, so I guess any DILE would have definitely subsided.

I’ll consider any herxing to be a positive thing !

I’ve been dispensed a different generic (Acnamino), so guess that could cause some change in reaction too.

I’ll let you know how it goes.

Hope you’re doing well yourself !

Thanks, Katie 😀

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