Finding the right dose of minocycline.

[Anonymous]

I had a long, helpful thread on here in August but it was lost unfortunately. It set me off on the course I am now trying but I need some more advice please.

I’ve been on the AP for RA for 3 years with no benefit. First it was just Minocin (branded) M/W/F. Then I introduced clindamycin IV every 2-3 weeks in Oct 2009. In the whole time since, I’ve had maybe 8 herx reactions only to clinda and with no benefit. I changed to doxycycline for a while but on a different AP doc’s advice I am now back on Minocin but at a much higher dose at 100mg twice a day every day. I started this only 3 days ago. And it hurts!!! At least my body is showing some kind of reaction. It has mostly ignored all AP stuff. So, how do I best find the right dose for me? I understand the principle behind pulsing so I assume this daily protocol is to get some DMARD effects.

It is possible that this worsening of the arthritis is caused by something else but I keep a careful food, drug, and symptom diary because my body tends to be so reactive. I can’t see any other likely candidate to explain the flare. It is like a flare and not any kind of fluey, detox feeling like I’ve had so occasionally with the clindamycin.

What is the goal here? A low dose but high enough to kick a tolerable herx? As high a dose as possible that I can live with? Is there a difference? Pulsing at the higher dose? Daily but lower? My clarity of thought leaves something to be desired these days.

I skipped this morning’s Minocin. The flare (herx?) keeps getting worse.

[DiamondTNT]

Ouch! Wish I had some suggestions / answers for you. The only thing I can think of is that whatever causes a herx is what is working on whatever bugs you have and that would be the med to concentrate on. (?) Testing to find out exactly what bugs you are dealing with would probably help determine which drugs would be the right ones to use. Hopefully Maz and others much more experienced with AP will jump in with ideas for you soon. All I can say is to hang on and don’t lose hope. There are way too many here that have achieved full remission to discount this protocol. Sad that it’s so individualized and we have to spend to much time in pain to find what’s going to work.

[lynnie_sydney]

What is the goal here? A low dose but high enough to kick a tolerable herx? As high a dose as possible that I can live with? Is there a difference? Pulsing at the higher dose? Daily but lower? My clarity of thought leaves something to be desired these days.

I skipped this morning’s Minocin. The flare (herx?) keeps getting worse.

lightrider – I feel for you. This must be very frustrating. And, from your signature line, it seems as if you are dealing with some additional issues, such as celiac, food intolerances, headaches, all of which indicate that perhaps there is more going on for you. I am wondering whether you’ve been tested for HLA B27 or HLA B51 (Behcet’s; “Silk-Road Disease”)? You may wish to search John’s posts – forum name DragonSlayer – in this regard and/or perhaps send him a PM. Another thing you may want to consider is emailing Dr S of Iowa (U.S. Volunteers can give you the details). He is retired from active practice but is great at responding to patients’ enquiries and also will consult with other docs. A third point: have you ever been tested for Lyme Disease? That may be worth you now considering, after 3 years of seeing no improvement. Other pathogens may be indicated here that the tetracyclines alone will not address.
Finally, there are some other suggestions on our main site for patients who are not seeing improvment on AP. Here’s the link:
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

It sounds as if you are now experiencing a rather big herx. What generally is found to be helpful if this occurs is to have a washout period of a week, detox as much as possible (water, water, water, lemon/olive oil drink, epsom salt baths) and to re-start at a lower dose. It’s impossible to say what dose will suit you as results are very individualised. Tweaking is part of the process of this road.

I’m sure others will chime in with their thoughts. Hang in there!

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)

[Patricia.Ann]

Hi Lightrider 🙂

I remember that long helpful thread back in August. There was some really good advice so it is a shame that all the posts were lost. Still, these things happen and fortunately the board is all up and running again so we can be thankful for that 😀 😀 😀

Seems as though you have yourself an AP doctor which is good (something I haven’t done yet!!!) and he has set you off on a ‘regime’. I agree that it is most difficult to distinguise what is a flare or a herx especially if your flare has lasted for a long time. I am guessing if things are worse then it is a massive herx. I absolutely agree with Lynnie about contacting Dr S in Iowa. I emailed him and he replied within a week. How brilliant is that???

The reason I am posting though is to remind you of some advice that was given by one of the members back in that August thread and which I kept a copy of. It was about the Wheldon Protocol. It is an ‘add on’ approach if this one you are doing doesn’t suit you. Think you will find it on http://www.cpnhelp.org/treatment_protocols Not sure if this would be suitable for you at all but you could ask your AP doc and Dr S???

Hope all goes well for you. Take care.

Patricia

[Anonymous]

Thanks everyone! This is such a nice bunch of people on here. Not always the case with online forums! I’ve been formulating something of a plan. I’m on my third day in a row of not having much of a headache at all and it’s such a relief. So I’m taking advantage of it to think on this. I even managed to re-read some of the salient points in The Road Back/Arthritis Breakthrough. It was good to remind myself of the bacterial allergy aspect. I’ve also been taking advantage of the unseasonably warm weather for the last several days and made a special effort to just be, absorbing the feel of it all with the trees, and sounds, and all such hippy things. I’m feeling much better for it.

@lynnie_sydney wrote:

lightrider – I feel for you. This must be very frustrating. And, from your signature line, it seems as if you are dealing with some additional issues, such as celiac, food intolerances, headaches, all of which indicate that perhaps there is more going on for you. I am wondering whether you’ve been tested for HLA B27 or HLA B51 (Behcet’s; “Silk-Road Disease”)? You may wish to search John’s posts – forum name DragonSlayer – in this regard and/or perhaps send him a PM. Another thing you may want to consider is emailing Dr S of Iowa (U.S. Volunteers can give you the details). He is retired from active practice but is great at responding to patients’ enquiries and also will consult with other docs. A third point: have you ever been tested for Lyme Disease? That may be worth you now considering, after 3 years of seeing no improvement. Other pathogens may be indicated here that the tetracyclines alone will not address….

It sounds as if you are now experiencing a rather big herx. What generally is found to be helpful if this occurs is to have a washout period of a week, detox as much as possible (water, water, water, lemon/olive oil drink, epsom salt baths) and to re-start at a lower dose. It’s impossible to say what dose will suit you as results are very individualised. Tweaking is part of the process of this road.

I looked up Behcet’s. Lovely illness to have, but I don’t have nearly enough of the symptoms to think it likely. Thankfully! I was recently tested for Lyme. Not sure what test, but I’m sure it was a basic thing. Not detected. I also don’t feel my symptoms and history really indicate Lyme.

Regarding detox, I drink quite a lot of water but am trying to drink more. I don’t drink coffee, tea, sugary drinks etc. Nothing artificial either. I have an Epsom salts bath every night (1 lb salts). I do a juice fast 3-4 times a year and plan to do one again fairly soon. They range from 5-9 days. I’ve been pondering a FIR sauna but can’t quite convince myself I’d use it.

At Maz’s suggestion in The Lost Thread, I have already contacted Dr S in Iowa and he was indeed lovely and helpful. It was on his recommendation that I started the Minocin again at 100mg twice every day. He said azithromycin might be added in the future.

My thinking is this: If this recent flare was indeed a herx brought on by the mino, then hurrah! At least my body’s not ignoring it like usual. The much higher dose was started on the assumption that the original 100mg M/W/F was pointless to go back to. But my body and disease conditions may have changed. So I will try the low dose pulse again now. I will then increase it gradually to see how I do, with the knowledge that 100mg M/W/F may have been just under some threshold that my body required (what a frustrating notion!)

Re-reading part of The Road Back reminded me why I thought the AP approach perfect for me in the first place. My body is so highly reactive to things, allergic in so many ways. The progression of this allergic state fits the book’s description so well. I was very disappointed initially when I got no herx from the AP (not the overall aim, but such a good indication) but settled in for the longhaul knowing it could be a very slow process. I was too patient and let too much time pass without making changes. It almost feels like starting all over again now so I am bracing myself for the “worse before better” time that I had expected a few years ago.

Of course, if this flare turns out not to have been a herx, then azithromycin and the Wheldon Protocol may well be in my future. I need to set myself some targets so that time does not again get away from me while I exercise unhelpful, zen-like patience.

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