Understanding the Protocol

[katieb]

Hi All,
Here's another one like Mark, struggling a bit and looking for advice !

I have now been on mino 100mg MWF, and am now flaring quite badly. Taking 400mg ibuprofen 3 times a day, but this is not sufficient.

My GP isn't experienced in AP so I would like to have a clear idea how I think we should proceed before I see her later this week.

As I see it, there seem to be 2 options :

1. Quote from protocol on main roadback website :

An important guideline in successful treatment has been the avoidance of over-medication with paradoxical worsening. Too much medication can cause a delayed hypersensitive reaction to the drug itself and induce a flare of the arthritis with the development of symptoms closely mimicking the disease (Herxheimer Reaction). A therapeutic balance can be readily reestablished by the temporary interruption of the treatment for a week and then restarting at the same low dose.

ie stop the mino for a week, then restart – but does this mean still at the same does or should it be lower ?

2. Keep on the same regimen and take a stronger NSAID, or even Prednisone (quote from Dr Mercola's protocol in the book 'Rheumatois Arthritis The Infection Connection')

One can give patients with severe disease a prescription for Prednisone 5mg. They can take one of them a day if they develop a severe flare-up as a result of going on the antibiotics.

Does anyone have any personal experience of these, or any opinions please ?

A subsidiary couple of questions :

Patients with severe or long-standing disease are started with a series of daily intravenous or intramuscular antibiotic treatments for a period ranging from one to three weeks.Clindamycin is given to eradicate long-standing L forms of bacteria resident in the gut, respiratory tract, genito-urinary tract and other areas to allow greater permeability of the tetracycline family of antibiotics and diminish the variables of disease. Clindamycin is concentrated in the phagosomes of the neutrophils, and therefore accumulates at the site of inflammation.

Following the initial clindamycin IV or IM course, oral minocycline or doxycycline is most commonly prescribed, continuing the periodic clindamycin as an adjunct to therapy. Care should be taken not to administer any antibiotic drug at too high a dosage too fast to avoid an allergic reaction by the patient.

3. Can you gat a flare/herx from just clindamycin on its own ?
4. Can the clindamycin be started after the mino, if it hasn't been administered beforehand, and would this still be helpful ?

Many thanks,  Katie

[Lynne G.SD]

Hi Katie;
    Sorry I did not see your post earlier.Since I have been in remission I am so busy that I hardly ever get to the computer anymore.
    Are you sure you are flaring and not herxing.They are identical in symptoms and often at the beginning of therapy one does get worse for about 6 months before seing any improvementAny antibiotic will make you herx.I found it was 5 times worse on Zithromax.It sure can pack a punch!!!!!   Lynne

[Michele]

Hi Katie,

You quoted excellent information from the Protocol. The hardest thing can be balancing the amount of medicine that produces a tolerable herxheimer reaction.

I had some pretty significant die off / herxheimer reactions to minocin. A very experienced AP doctor had me start at 2 mg MWF (after a 5 day IV Cleocin) and work up my dose. The goal was to reach 100 mg Mwf. So you can see there is a lot of flexibility in dosing. Don't be afraid to split the dose into smaller amounts like 50 mg MWF or 25 mg MWF and work your way up. Before I met with the AP doctor I was dosing M Th. I was a really hypersensitive case and from my general observation of folks on this board, not typical. I'm posting just to give you an idea of how flexible this experienced AP doctor was with my dosing.

In my AP experience, when the flaring reached a hypersensitive state, no amount of pain medicine was helpful. So even now, my goal is to keep my reaction tolerable.

In addition to working with a very experienced AP physician, I have also had the opportunity to speak with a very experienced MP doctor. Both would use low dose prednisone if my inflammation became severe, and the MP doc mentioned if it was only a couple joints inflamed, a localized cortisone shot instead of oral prednisone.

I'm again one of those weird cases where I don't have the redness, swelling and visibile inflammation. Just tons of pain. (In joints, spine, muscles, and rib cage!) The low dose prednisone never seemed helpful and was rather unpleasant to go off.

It's helpful to keep a journal and track the time frame of increases of pain and dosing. When a pattern begins to emerge it can help in deciding the dosing. And you can see progress…but that does take months. The wisdom I learned on this board is that progress is “glacial.” It is…and very worth it.

Sorry you have to join this club…there are some wonderful people to bounce ideas off of on this board.

Michele

[katieb]

Hi Lynne & Michele,

Thank you so much for your replies – they are exactly what I needed to help me decide the next plan of action !

So I have only been on the mino 2 1/2 weeks, and have not kept a detailed journal, but piecing it together from other events which happened, I am certain I have been feeling gradually worse & worse. Now at the point of taking maximum ibuprofen, and still having pain, I have decided that I could be close to a hypersensitive state, and almost certainly herxing badly. Mind you they have been an awfully busy 2 1/2 weeks and I've not managed to sit down for nearly as long as I'd like to most days !

So your posts have made me decide to bite the bullet, stop the mino for a week, and restart next Monday at 50mg MWF. I know now it can't do any harm. I had originally planned to start on that, but the brand-name mino we have here only comes in 100mg capsules. So I will have to open them up and try & judge half. I'm sure I've read posts by others saying they've done just that.

This time I will keep a detailed journal, so that, as you say, I will hopefully notice a pattern emerging. Hopefully this time I'll manage more that 2 1/2 weeks ! Perhaps I am just wimping out !!

The other thing knocking about my brain is that it seems that it is important to keep the inflammation down to enable the minocin to reach the affected joints, and if I am herxing badly that is probably not the case. So best to lower the dose rather than increase the anti-inflammatories. It was interesting to hear that the Prednisone didn't do a lot for you either Michele.

It is wonderful that you're in remission Lynne. I pray that you are heading that way too Michele. I'll post to let you know my progress.

God bless,  Katie

[Michele]

Hi Katie,

One more important thought about dosing, in case you haven't found this yet.

High dose minocin (ie. 200 mg / day) has a suppressive effect on the immune system. Under 100 mg / day has the effect of killing bugs.

Interesting to me, when I had strep throat last month, Keflex at full dose for strep had me in a remission from arthritis by the end of it.

Don't forget the probiotics taken at least 2-3 hours after your mino. And no dairy near the mino dosing either.

Sorry for the short bursts of information, but I'm also packing for a trip!

Gotta run!

Michele

[John McDonald]

Katie, I too am in remission from AP. Maybe better than that.

I tell folks who are new to AP that the goal is to kill the microbes, not the patient. If doc agrees, the dose should be adjusted for tolerable herxing. It is up to you to figure out what tolerable means. I am not big on the hypersensitive state ideas. The disease model that I like suggests rather strongly that the microbes live intracellularly in the macrophages, in the exact same immune cells that are tasked with killing them. There is very good evidence for this for mycoplasmas and other cell wall deficient bacteria. These phagocytes live in tissues and do not return to the blood once they have reached tissue so perhaps that is why the disease becomes specific to e.g., joints. That I don't know. But I also believe that when the bacteria is killed that it somehow kills the host phagocyte. I actually suspect that when the immune cell detects that it has been parasitized it self destructs to end the infection.  But when it does so it necessarily dumps its chemical weapons and cytokines in situ, right in the diseased tissues. The result is dead bacteria but some nasty swelling and pain that we call a herx.  If indeed it works that way. These class of antibiotics including clindy, Mino and Zith interfere with the bacterium's machinery for making its proteins. I suspect that means that the bacteria cannot make or repair whatever sort of sack it lives in, and it cannot make whatever protein it needs to fool our immune system. I think the result is that once disabled, the immune cell detects the invader and does what it must to kill it, apoptosis. Or perhaps it is killed by the T1 helper white cells. Microbiology has learned a lot about these mechanisms since Dr. Brown passed away, a very great amount since then. But they have much more to learn as well. No one seems to know for instance why minocycline is somehow immunosuppressive while also being anti-microbial. However at the MP site they think that frequent dosing of Minocycline emphasizes it's immunosuppressive properties. So for example they adivse patients to try frequent doses, 2 or 4 times a day of tiny amounts of Minocycline as an anti-inflammatory aid to getting off of prednisone. Based on patient response it seems to work. If they are right, frequent dosing enhances immunesuppression and pulsed dosing enhances microbial killing. However the antibiotics does not somehow stop being tough on bacteria just because it is dosed to be immunosuppressive and vice versa.

Plenty to chew on and to learn about isn't it?

But the short version, whatever is going on, is that more abx isn't necessarily better. Kill the microbes. Don't kill the patient.

-john 

[Patti D]

Hi John,

I have watched with great interest the dosing issues as I have been given the 100mg 2 times a day and feel I am doing just fine.6 months of abx and I am still herxing and donot have any visible signs of inflamation just stiff in the joints and the pain now  waxes & wanes. I do not have the luxury of an AP doc and am lucky my 1st rheumy agreed to mino.

Please tell me I am still killing those little beasts just like the pulsed dose people?:shock: I sure better be. I don't want to drag this out any longer than I have too.

Happy days!

Patti

[John McDonald]

Patti – as I said, kill the microbes and not the patient. If you are still herxing on that dose and given all my givens then we could argue that you are killing microbes. I figure that as immunosuppressive medicines go, Minocycline has a side effect. It is hard on bacteria. If you were a bacterium would you raise your kids around minocycline? But if you achieve remission on 100mg BID, if you reach a plateau wherein you don't have anymore gains or losses, then I predict that at that time if you try MWF dosing you will discover that you elicit some additional herxing. I have coaxed a few AP'ers to try this and it worked.

TM claims that killing bacteria will and must elicit a herx. I don't know how far to take that, but if it is true, then when you stop herxing then you should muck about with things a bit to see if you can elicit any more herxing. For example, adding a 2nd antibiotic at that time as they do. And by the way, I know that works. So does adding a subsequent 3rd antibiotic in combination. I don't know that I will be able to fly or play the piano or be a super model at the end of this, but I have managed to elicit lots more herxing this way and I have made some nice additional gains, some unexpected.

 

[Patti D]

Hi John,

Thanks and I guess I know what you mean as if I accidently skip a dose I am usually pretty uncomfortable…herx. I read with great admiration the people who travel a far for a good ABX doc. I wish I had the time & money to do this. I need to work with what I have. If I really make some gains, and my work load decreases I may have time to lesson my dose to a pulse as I can herx at home but when I am responsible for training others, running my own business and trying to be enthusiastic about what I do, I really need to feel somewhat ok. You understand right . I can't be any different from anyone else.:) As always, your advice is greatly appreciated:)

On a side note, just wondering if you surf:dude: 

Happy days!

Patti

[John McDonald]

I went to high school in Hawaii (about a century or 2 ago) and I got into sailing of all things, and neglected my surfing education. As a youth I joined the Waikiki Yacht Club for all of $12 per year and just hung out until someone needed crew for a race. I did a lot of body surfing and some snorkeling but I never learned to surf. It's shameful. Since then I have always thought California water too cold, and compared to Hawaii it certainly is. But I am happy to say that my girls got me a wet suit for Father's Day so I could join them while we all learn how to surf. It may be pretty comical. Bring a video camera. Oh, and I passed my AYSO Advanced Referee test on Sunday. How cool is that? Now that my girls are advancing up to U14 and higher age division I can move up with them. And the best bit? I'm 53 and formely had bad RA but I can run and play with the kids now. Uh, I meant referee. Very soberly. Yup! The best thing about being in the middle of the field is I can hear the girls eep! when they kick and miss the ball.

[Patti D]

John,

Your spirit is infectous:D opps! Shouldn't use the word infectous:sick:Being 53 myself I get your deal ! Water exercise is good for the joints but I agree having a lake cottage, there is something great about the warm water.  We would appreciate how a man with RA fares with the new past time of, did you say”body surfing” Wow. I really hope I get into a full remission and can maybe take up something new and challeging physically. Don't know what I will think of, but I just decided I should think of something totally out of character for me if I get healthy to that point.  I now have something to strive for. You are truly a “mentor”

Happy 4th!

Patti

 

[katieb]

Hi John & Patti

How wonderful to read all your posts on my thread. They are so helpful, though I think I will have to re-read John's long one slowly as I've just skimmed it now, but I think I understand the gist (so many people on this bulletin board seem to have become eminent scientists ! I think I am getting that way too, very gradually)

As I've mentioned earlier, I am trying stopping the mino for a week, aiming to re-start on 50mg MWF. So now it's Weds and my last dose was Friday. I still feel pretty awful. My knees are so stiff in the morning ( and the left one swelled up a week or so ago), and I can barely move my hands (most of my fingers are swollen up) & wrists until they loosen up gradually, after taking my morning ibuprofen. But they stay pretty painful all day. Feet ache but haven't really worsened since the start. One shoulder is painful, but feels more like the ligament than the joint.

As I was more or less fine on April 20th (painful metatarsals and 1 painful finger) and all this has happened since then, I am not sure how much of what I am feeling is the disease or residual herxing from the mino. Have you any idea how long it would take for the effects of last week's mino to wear off ?

I just wish my condition would stabilise so that I can make judgements as to whether I'm better or worse.

Your posts have now made me wonder whether I wouldn't be better on the immunosuppressive dose like you Patti. Although I am fortunate not to have to work these days (I'm just 55 by the way), I'd still love to feel like I could take on everyday tasks like gardening without a massive effort of will. If I was working, I don't think I would be managing too well with it right now.

Like you I am having to work this all out myself, just having an inexperienced GP, who also happens to be a sweetheart.

Do you have any views on NSAIDs? I am thinking of asking for some, as at present I'm on maximum dose ibuprofen (1200mg per day), but still having pain. I thought they might help bring down the inflammation/swelling to help the mino to reach its target.

I so love to read about all your activities John. Not a lot of surfing going on here in the middle of the UK, but there used to be a good deal of running, and you give me hope that I will one day get back to it, and perhaps, like Patti, something more challenging. I just need to get my treatment regimen sorted out and properly on to the 'road back'.

Happy 4th to you both and all roadbackers in the USA ! We remember it all well from when we lived in Okhahoma City from 1996-8 ! Enjoy the fireworks !!

Katie

[lynnie_sydney]

katie – a herx response on AP is usually NOT limited to a couple of days or simply when you have/have not taken the mino. Mine originally lasted for 6 weeks when I first started on AP. Others have different experiences. As for NSAIDs, if it were me, I would be careful of high doses of ibuprofen…..this may lead to more joint pain (as well as long term problems with the gut) that is a result of gut issues. You may be better with pain relief that is not a known gut irritant. Diclofenac and panamax are what my AP doc has suggested for me if I really need it because of this. You may even want to consider a small amount of prednisolone (think that's the UK name), which you can gradually taper off – whilst your joints are this painful. 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)

[katieb]

Hi Lynnie

Thanks very much for this help. I am gradually building up my knowledge base on all this, and the 6-week herx you experienced is very enlightening. When you don't have an AP doctor to consult, this sort of info is really important in helping to make a decision.

Re-reading the recent posts I think I will now stick to plan A and restart the mino on 50mg MWF next week, and assume I am experiencing quite a strong herx right now (the way the skin on my palms seems to tingle when I rub them together I think is indicative – I am certain I didn't have that before the mino).

From John I see that I will also be getting some of the immunosuppressive affect of the mino anyway. I will hope that on the 50mg regimen, the herxing will be less, so that the NSAIDs won't be so essential. But I am seeing one of the other GPs at the practice tomorrow (my own is on hols until 16th & I can't wait until then) to try to get a prescription for a different one.

I don't experience any gut pain from the ibuprofen, but I realise that does not necessarily mean it is not doing damage, and if that's leading to more joint pain I want to get off them quick !

By the way, I also put myself on a gut-healing diet several weeks ago – after reading on that australian nutririonist's website which I think I got from one of your posts on a different thread Lynnie – 'all arthritis pain is the result of a leaky gut' or words to that effect. Mine is actually an anti-candida diet, which is surprisingly similar to Dr Mercola's RA diet, with supplements of caprylic acid (which kills candida), and acidophilus. So I thought if it's good for both it can't be bad. We are very lucky here in the UK in that there are a lot of non-dairy alternatives from goats and sheep available, which are lovely (goat's cream – yum !) (until someone tells me I can't have those either !!)

Thanks again,  Katie

[Patti D]

Hi Katie,

I wish I could just reach across the ocean and make things better for you. I have felt the same  and know how hard it is to get moving when everything hurts. It did take a while with me and actually it is still different every day. I have been on the 100mg bid for 6 months now. If I miss a dose I am more achy. I still have swelling , a slight amount in the rt. ankle and on & off pain but daily pain in the left wrist. My RA has never been symmetrical, but who knows, anything can happen with this. Today I am trying something new, reflexology to try and move the fluid out of that ankle. I did reflexology once when I was in Cambodia/Vietnam on vacation and it really cleared my sinus. What I have learned from this whole experience, is nothing is off limits to consider when trying to get your health back, especially if it is not drug related.:) What I am happy about is my knees are back to normal for about 1 month now, my shoulder is also pretty good, and my fingers and toes are just a little stiff but pain is really minimal. The overall feeling of fever, chills, tired etc is gone. I have only been diagnosed since December. I started with Lyme last May, was ok after my 1 month of Doxy and then , wham 4 months later I was right back where I had started in May with the lyme.

Because of what happened to me with the doxy & the lyme, I am really afraid to change my dose to a pulsed dosage as I think I may go back to ground zero again and i just can't do that. So for me, I will stay a little longer at this dose until I see even more improvement. I do not see my doctor until October and remember he is not an AP doctor.

When I started on this I had some really bad days. The advice I got on this board was to cut back on the mino and give your body a break, just like you are doing. I remember getting really teary eyed in the morning after the second day thinking, wow, I can get down the stairs today! I am so grateful for the advice from Maz, John & A Friend.

I am also still not sure if the bad times are a herx or flare. All I know is , they are shorter in duration, less intense, and do not get to the all over body pain.

As far as your ibuprofen goes, I was on the max to begin with 800mg every 8 hours and eventually I got so sick to my stomach that I switched to Aleve. I started with 2 in the morning and 2 at bedtime, also the maximum dose. Now I take one in the morning when I need it and one at bedtime. See if this may help. Keep us posted as to how things are going and hoping you are feeling better real soon:blush:

Happy days!

Patti 

 

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