Understanding the Protocol

[Patti D]

Hi Lynnie,

Are you saying that all herxing is the same? It has to last longer than a couple of days? This is news to me as I have had a full week of feeling horrible but never 6 weeks as described. Does this mean I have not herxed yet? I thought a herx was a step backwards after two steps forward and then, improvement is shown.

Example_ I had a horrible week with lots of pain back, fever , chills and teary all week. I increased exercise, water, Aleve, and one week late my knee pain of 6 months was gone. Does a herx elicit improvement?

Thanks!

Patti D 

[John McDonald]

I was going to say much the same. In truth the minocycline half-life is 12 or 14 hours or so. It takes about 3 or 4 of those, say, 3 days, for the minocycline molecules to be pretty much gone from your blood serum. But sometimes the herx response lasts longer. My MP experience is in many ways different than my AP experience I suppose because of the Benicar. On AP what I now think was herxing didn't have a strong time response to the antibiotic dose. But my RA did get worse and unstable after I started AP and after 7 or 8 months or so it started getting a lot better. I had only two very distinct time related herxes on AP. The first was right after my first AP dose and it lasted about 4 or 5 days (while daily dosing). The 2nd was about 10 months later when I stopped taking Plaquenil. That led to an immediate arthritic herx that lasted for 4 to 6 days. It makes me think that the Plaquenil was granting safe harbor somehow to the microbes. Other than those 2 clear episodes I didn't have clear, time and dose dependent herxes. On AP my disease got unstable with good and bad days and after 7 or 8 months it started getting better.

On the MP I dose each 48 hours and I routinely experience herxing on that 48 hour cycle. These days it is light sensitivity and cognitive stuff, the arthritis is mostly gone.  All that herxing tends to cycle for me each 48 hours. One of my 3 antibiotics has a very long half life so that one produces herxes that cycle about every 10 days.  But I have also had a few runaway herxes that lasted for weeks as well. One theory is that my immune system in some tissue area has suddenly wakened and realized that there is infection and merrily kills these things without the benefit of antibiotic. You might just as well imagine that it is the same sort of long-lived pleasure you get when you miss the nail and hammer your thumb. It may just take a while for the swelling to ebb away. Also on the MP I usually have the strongest response on the dose day but sometimes in some tissues on the off day. It evolves. I have seen AP patients report this too. The MP theory says that right after you dose both the immune system and the microbes are knocked out, immuno-suppression and microbial suppression at the same time. That gives the patient some relief for a while, the easy “dose day”. Then as the story goes at some serum level the immune system recovers before the microbes and can take them out, producing the nasty but welcome herx. This is a story, what in science we would call a hypothesis. Science knows why and how Minocycline suppresses microbes but no one seems to know why Minocycline is immunosuppressive, let alone if there is factually a race between which cells recover first. But I do like this story as true or not it describes my experience.

On AP I have seen people report every kind of variation between these. Some people experience cycling herxing with the MWF dosing, especially on the weekend when the serum level is very low. Others have an AP experience more like mine. Your own experience is bound to be unique in some way and if doc agrees it might behoove you to experiement a little with dosing to see what fits you best.

What I know from years of following this bulletin board is that the vast majority of patients improve in something like 8 months to 18 months, and most around 11-14 months. It may matter in detail whether you dose daily or on alternate days or MWF but most people just get better anyway no matter how they dose. Maybe the speed or thoroughness of your recovery may depend on your dosing schedule. But certainly your comfort, whether your herxes are tolerable or intolerable will be affected by your dosing amount and frequency and for that knowledge you and doc have to experiment.

-john[/color]

[Maz]

Science knows why and how Minocycline suppresses microbes but no one seems to know why Minocycline is immunosuppressive

Peace, Maz

 

[John McDonald]

Good lead Maz.  Thanks.

[Patti D]

Maz & John,

Hi guys:) this explains why if I am behind on a dose and miss it or take it say just in the evening I do feel more joint pain as there is more inflammation, especially after a busy day:? I think a herx is a very personal experience that can be brought on by additional exercise, change in medication(ie different dose)  obviously for me any way barameter change. This is all in Doc Browns book so I can't be the only one that has 3 or 4 miserable days(hence herx) and then feels better.  sure hope I don't go 6 weeks with a herx but I do see how that could be possible.

Maz,

I will tune in to see the “medical wizard” tomorrow too discuss lyme. We can share angry faces on the board:angry::angry::angry:

These emoticons are such a hoot:roll-laugh:

Patti

[John McDonald]

[herx]…that can be brought on by additional exercise…

Patti – not just exercise, but also heat and massage. There is a lot that has happened in microbiology since Dr. Brown passed away. He had brilliant insights but for example, the human genome hadn't been sequenced yet. There has been lots of activity exploring the way that bacteria change their behavior when they are part of a community as opposed to being individuals; especially bio-film communities. There is some thought that the bacteria that are giving us our rheumatic disease are bio-film bacteria and that they derive considerable protection from their communal biofilm. But exercise, heat and massage can break or fracture these biofilms and make some individuals more accessable to our immune cells. Hence we can get a nasty herx after a soothing massage or after vigorous exercise. This is not proved, it is a story. A story is what scientists call a hypothesis before it has been tested. But it is appealing isn't it. It is a story that might explain some of our experience.

[Patti D]

John,

You have me worried. I am on my way for some reflexology. I have some stubborn fluid in one ankle that has gotten in the way of some serious walking, and bike riding. If you ever  have this done it is intense message in the legs & feet. The chinese have some this for a long time and they believe they can tell what is wrong with you an massage the heck out of the area to get rid of it. So are you telling me tonight may be peppered with a herx? I am also doing a steam aroma treratment what ever that is. I am always trying something new to move this along.

Thanks for the info.

Happy days! 

Patti 

[John McDonald]

Patti,

It doesn't always work the same way. A massage can be a wonderful thing. But it is uncanny how many of us were surprised early in our AP by rather the opposite of what we expected from a massage. I can't tell you how yours will work out, but I suggest trying all new experiments in moderation. Put your toe in the water and check the temperature before you jump in. Even though my first couple massages on AP had unpleasant results I couldn't resist and after a few months on another trip to Asia I got another. That one and since then they have mostly been all pleasant. But I recall a foot massage in Thailand in which I discovered that I had a lot more RA in those thousand little bones in my feet than I thought I did.

[Rose66]

Hi All

This herx/flare business must surely be the most unnerving thing for us newbies.  I'm about 6 weeks into mino at 100mg MWF and have just started tipping downwards.  I was on meth for 10 weeks following diagnosis before transferring to mino, perhaps the meth was protecting me for a while but all those former aches are back with a vengence now.  Sometimes it feels like some kind of fairytale, that so much pain is in fact good!

I get the feeling we're all pretty tough-minded people and can brave it out if there's light at the end of the tunnel, but one thing really does worry me:  erosion.  I had a slow start to this disease with niggly toes from about 7 years ago – annoying but never really thought much about it.  Always felt fine – full of energy and good spirits.  Then over the last 2 years single joints decided to join the party one by one every few months – but still feeling fine otherwise, then suddenly wham! sick all over and with a shocking and sudden descent into a depression-like state.  It was this rather than the joints that got  me repeatedly to my well-meaning-but-slow-to put- it- together GP.  A familiar story to many I'm sure.  Unsurprisingly, quite significant joint damage was shown to have occured in my feet over this time, but what spooks me is that it includes the left foot in which I have never experienced any pain.  How/when did that happen!?!  I've had a badly swollen knee and shoulder for a couple of years now and last x-ray from 6 months ago didn't show any obvious degeneration but I feel as time passes and the joints remain angry that surely my luck will start to run out. 

Soooo, now when I'm woken up at night with a pain in some joint its very hard not to visualise evil creatures munching through a tasty bit of cartilage and not really caring whether they're operating under the guise of a herx or a flare.

Does anyone have any idea whether herxes have the potential to be any more or less damaging in this sense than flares? I am very hopeful about AP in the long run and have every intention of sticking it out (besides I want to be a roadbacker too like all my BB friends) but this aspect of the protocol ie. its length, does scare me a bit.  Bring on the pain but please, please leave my cartilage alone!

Best wishes to you all, and a great weekend to those in the US

Roisin

[John McDonald]

Rose,

I think erosions or damage are a serious concern while herxing. I have friends on the MP who have heart, lung and stroke involvement and heart, lung and stroke herxing. It is damned important that they get their herxing just right, enough to heal but not too much so as to kill. I reckon it works about the same for us RA types. That is a big reason why I think patient and doc should find a dose and frequency that is effective but which does not produce too much herxing.

Kill the microbes. Don't kill the patient.

john

[lynnie_sydney]

sure hope I don't go 6 weeks with a herx

Hi Patti – surely you'd take a 6 week herx if you never had another one? And during that time, I started to feel better even through it. My energy levels started to rise and I started to feel terrific. I knew it was a herx because it was just different from a flare. It migrated gradually through my body, seemingly every joint from top to bottom. There were other slightly odd symptoms too, in addition to slight nausea and dizziness the first week. In the 5 years from that time, I have only had the very odd minor flare (yes flare, I can tell the difference) maybe once or twice a year and in one joint. They tend not to last very long and are nothing like the agony I used to go through. I have documented my herx in my testimonial (my bloodwork went through one also) and you will probably find others who have documented theirs, which may be helpful. 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)

[Rose66]

Hi John, thanks for your comments and nice to 'meet' you by the way, I always enjoy your posts so much.

Lynnie:  I'm delighted to read your description of the initial long herx as that is precisely what I've been experiencing over the last while, just as one joint starts to ease off another begins.  Must say the energy levels increased almost as soon as I started the mino with a couple of really great days here and there – oh bliss!  These new pains drive me crazy but are perfectly bearable (mostly) and all in a good cause we hope, but just a little anxiety-producing.  Of course everyone at the beginning is haunted by the same worry “what if this isn't working …”. 

Best wishes all

Roisin

 

[lynnie_sydney]

Yes Roisin, I know we always do worry about the 'what if's? I most certainly did. I do urge you to read some of the testimonials from the main site. They can give alot of comfort…………just skim until you read something that resonates. One of the reasons I documented my herx response by the week in my testimonial was to hopefully give others something to relate to (as well as document my own journey). So glad my description resonated with you……..it does help, doesnt it? Hope things settle for you mega-quickly! 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,

Please could you give us the title of your testimonial, as the names of the authors don't appear in the list and it might take ages to find yours. Can't wait to read about the 6-week herx !!

Just read your personal thread about the doctor & naturopath – what a fantastic pair to find – worth travelling for !

Thanks, Katie

[lynnie_sydney]

katie, I surely can….BTW re names: I think that is something that is being looked into for changing on the testimonial section of the site. My story is entitled 'History of my Palindromic RA and my AP Journey'. It's probably on the second page by now.  I have also just saved it as a pdf and am going to add it as a link on my personal history and progress thread on the Board. 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)

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