I'm trying to be rational!

[Jennhere]

I stopped taking the mino for four doses.  Just four doses.  My joints began to hurt by the third missed dose, but I thought I was being overly cautious…

But I'm in pain.  I began taking the mino again.  Even went through three days of head fogginess with the mino just like I did three years ago.  Right away, the pain went away.  But here I am today.. and last night… In pain.  Can you believe it?????  I'm trying to remember how in the beginning, the pain ebbed and flowed while the mino did it's thing.  that lasted a year.  I can't imagine I'm back all the way to the beginning!!  Only after four missed doses…?  Seems insane. 

Has anyone done this?  Gone off… had pain… got back on…had more pain … then got back to normal?  I'm feeling like I made a huge mistake.  But, I have faith in Mino and this protocol… is it true that it stops working if you go off?  Even for just a few short days?????

[Lynne G.SD]

Hi Jen;
     I was exactly like you a few years ago.If I missed a dose I started to seize up the next day.I have been off AP for the last few weeks because I am battling an other bout  of bowel problems and so far ,so good.Not even a hint of SD activation
                                  Lynne

[spacehoppa]

Hi Jenn,

I know a lot less than you about this, as I've only just begun the AP, but do remember that stress can suppress your immune system and trigger a flare. So try and relax if you can and let the mino take the strain. Hopefully it's nothing more than this.

[Pip]

Jennhere!

You're here!  Hi!  And Hi Again!

Ok, in answer to your question.  Last Christmas. we went home and everything went crazy in trying to get ready for Santa, getting stuff out of storage, our parents needing work and wondering why we were helping the other parent (lol) – I mean, it was crazy.  We were there almost a month but so slammed we had the tree up and in the stand but didn't have time to decorate it for a week!  In the insanity, I forgot my Mino and my supps.  I started feeling off and was glad we were flying home on NY's Eve -but not in enought time because by NY's day I had a small flare. 

Freaked me right out.  I'm like, it's been a month, how could this happen???

Well, as soon as the mini-flare started, I started taking the Mino and the supps and was OK within 36 hours.  Took about a month to get everything totally under control.  Mostly my blood pressure because apparently I have HBP that I was controlling on Mino and the supps. 

So, don't worry, you'll get it under control and probably very quickly. 

Hugs,

Pip

[Jennhere]

Oh, Pip… thank you so much.  I took my pill last night and today, the pain is less than yesterday, but still shocking to me.  I am stunned that I could return to to this kind of pain after missing/skipping on purpose only four doses!  Wth?

Ok.  I guess, I'm just in it for the long haul.  I secretly hoped I was not truely a member of this club… !!!

I will have faith that I'm just re-booting my body with the mino and that this pain will go away and not progress.  I am mildly freaked out… but not the basket case I was three years ago!  You're pain free??? 

[justsaynoemore]

I am a recovering alcoholic (turned to alcohol to kill the RA pain as no doctors would help me).  I had the great honor after driving across state to Hazelden West Palm and getting a woman I was sponsoring into a 28-day treatment program, to be asked to come back to her family day.  It was over a Memorial Day weekend and they paid for the hotel, the meals, transportation, everything.

I learned so much about alcoholism.  And the craziest thing I learned was that your body “imprints” every drink.  You just keep filling up, your body never forgets a drop.  And like it happened to me, one day I crossed over the line, and became alcoholic and it took a decade to sober up.

Then I found out that alcoholism is a chronic disease that continues to advance EVEN AFTER YOUR STOP DRINKING.  So, if after almost 19 years I started drinking again, within a few weeks, all those drink-free 19 years would hit me and I would probably die or contract cirrohosis very quickly and die eventually. I know this is true as I have too many years on the front lines of alcoholism and AA and watched too many people “slip” and die very quickly once they stared drinking again after say 30 years of sobriety. 

RA is a chronic disease.  This is just my personal opinion, but I think all the treatments for RA just put it on hold, but it is still churning away in the background and if for some reason (like stopping your medication), it will come back at you.  All the time you were not disease-active comes rushing back and you get all that time back and your chronic disease moves up to this new end point.

I don't know if I am making sense, and this is all my theory from learning about the disease of alcoholism, but I have moved my theory over to my RA.  As long as I keep taking my medications, eat right, try to stay healthy, I will be okay, even though underneath it my chronic RA disease is still quietly churning along, waiting for a chance to pounce if I give it a chance, just like my alcoholism if I take that first drink.

I hope you get over this hard patch soon.  Take care ~~ Cathy

[Pip]

Yep, I'm pain free.  I want the med-free remission so I study and study this stuff.  LOL  Me!  That's hilarious!  All my artsy friends laugh at me and nobody ever mentions their health anymore!

I was freaked out that I could only go a month without meds…but…better to know now and tinker with the program.  Don't feel too bad tho, remember it took you longer to get relief than it did me.  You'll get there quickly and can try med free later!  If it's any chronic AI disease club…this is the one I'd want to join.  LOL

As Cathy says 'we're all just individual RA snowflakes'.  I LOVE that saying. 

Cathy – I understand your reasoning.  Yes, it's waiting to pounce BUT eventually we beat it into submission. 

Hugs,

Pip

 

[maz.aust]

Hi Jen,

Sorry you are having a bit of a hiccup, but as Pip said happy to report you should get back to where you were in short order.  Although I am not taking mino I am on the AP programme and can assure you that I had what I called 'mini flares' when I started back on my abx – after that period of time I had run out of abx credits!  However with a tweak of meds I was back on track & pain free again.

I am sure if you have any concerns there are plenty of people on this site who will talk you through it.

Good luck,
Maz – Aust

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Jennhere]

Ok, guys!  I trust you!  It hurts pretty badly tonight.  ((:()) 

I'm kinda bummed out tonight because the pain is pretty intense.  I forgot how bad it can get.  Should I take the mino every other day rather than mwf while I try to reset myself?  It's so weird.  I missed Four Doses!  How can my remission be so shallow??  It was two years pain free.  I divorced an alcoholic so I appreciate the alcoholic analogy.  Ok.  I'm trying to avoid coming here, but it's a safe place to be afraid.  Kids don't need grownup stress. 

I see that I posted here on the 18th..  It's been about a week.  I think I took an additional mino. 

[lynnie_sydney]

Jenn – it just occurred to me that what you may have been experiencing is a herx. Most docs say that any change in dosing is likely to elicit a herx response……..and that includes dropping to zero. Adding back the mino again is another change in dosing, so possibly is eliciting another herx response. Maz yesterday talked about her doc asking her to sign a 'herxheimer contract' – I'm quoting a relevant section of that here: I'll also requote one doc's approach to managing a herx response:

Management of Non-life Threat ening JH Reactions or Clinical Flares

The more typical JH reactions to anti-infective therapies are: worsening of symptoms, febrile states such as night sweats, flu-like picture, hot swollen joints, mental depression and fatigue. I recommend home therapies designed to clear the blood and make the patient more comfortable. My routine calls for baths in hydrogen peroxide and Epsom salts. These baths are very effective and have tremendous anti-infective effects. They may work for only a short time at first and may need to be repeated. The peroxide easily enters the body through the skin and rapidly detoxifies and sterilizes the blood. There will be a marked reduction in tight muscles that can be a part of a JH reaction. Unfortunately peroxide can have a JH reaction of its own, but this is more pronounced when it is used IV rather than in a bath. Magnesium in the Epsom salts also passes easily systematically; it has a local anesthetic, antispasmodic effect and an overall improvement in the performance of most systems. Oral peroxide is available but not discussed here. The IV route for both peroxide and magnesium is used to stop the JH reaction in office management. The same benefit of blood detoxification and general enhanced clearing of tissue toxins and bacteria can be claimed for high dose ascorbic acid (20-50 GMs IV). Vitamin C can be given in oral form too. Ascorbic acid powder equals about 5 grams per level teaspoon. This dose can be taken with water or juice as often as needed or until there is GI intolerance such as diarrhea. The clinical effects are similar to peroxide. In fact, the two can be given to a patient on the same day with excellent results. It must be remembered however; the vitamin C will also neutralize peroxide and thus should always be given after the bath. Mild JH reactions are also seen with vitamin C therapy again mainly when given IV. Such therapies as peroxide baths and vitamin C are easy to do at home and extremely effective at helping patients make a quick, safe recovery from a JH reaction.

Other oxidative office therapies can be alternated with these modalities or with antibiotics to hasten detoxification of bacterial toxins. Ultraviolet blood irradiation (UBI) involves removing a small portion of the circulating blood and cleaning it under UV light before returning it to the patient. The mechanism of action is not well known, but such treatment has been used for over fifty years mostly outside the United States for improvement in immunologic function. This treatment also ameliorates the JH phase of anti infective therapy. It is further noticed that direct exposure to sunlight has a similar effect to UBI in many patients. Therefore my patients are asked to get sun exposure if the climate allow s not using sunscreen up to the point of mild burning. I caution them that minocycline will cause them to be sensitive, but that they can go out with care and receive great benefit. And as I had expected, I do see stable patients develop mild JH re actions after such activities as fishing trips which cause a huge UV sun dose and large destruction of circulating bacteria.

Another approach to treating worsening of symptoms after oral antibiotic or other anti-infective therapy is the use of IV a ntibiotics. I have used IV doxycycline for quelling such problems. Other physicians have used IV minocycline, IV clindamycin and others for this purpose. In my practice the antibiotics are the drugs of last resort. The most preferred treatments involve the home remedies with peroxide and vitamin C.

I have tried to avoid the use of anti-inflammatory remedies for the JH reaction. The corticosteroids will control a rash, but I have noted a general deterioration of the patient's condition weeks later. Such topical steroids as are given in inhaled or skin medications are certainly absorbed. Their use will be a quick fix at a high cost due to the setback they cause. The nonsteroidal anti-inflammatories that are used orally have the effect of irritating t he GI system and are implicated as one of the causes of the leaky gut syndrome also linked to many of the chronic pain states. Again they are drugs of a last resort. Topical soothing lotions such as aloe vera can do no harm and may make a rash feel better.

Yeast overgrowth must be considered when new symptoms develop after antibiotics are started. I put all chronic pain patients on continuous oral acidophilus supplements before starting any anti-infective therapy. We were noticing yeast emergence i n nearly 100% of the patients. With the addition of acidophilus, this problem is becoming a lot less common.

https://www.roadback.org/index.cfm?fuseaction=education.display&display_id=124

I feel for you Jenn. My AP Doc and Naturopath both try going without their abx over the Christmas break ( the longer summer one here when they dont have to work) to test whether their remission has reached the point where they can be drug-free . So far, they both have to re-start the regime, but they continue to 'test the waters' each year. Hope things settle down again for you quickly. Lynnie  

[/color][/color] 

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)

[Jennhere]

Maybe it was a herx thing like you suggest, Lynnie.  I was having those other symptoms of sweating and confusion and moodiness…and crushing fatigue.  I fell asleep midday for several days and that is very unlike me.  It would have helped if I'd come right back here and read those words of wisdom from you Lynnie!  Haha.. but I chose to avoid everything and chose to hunker down and wait it out.  Bad choice on my part! 

I feel worlds better.  The pain has subsided to nearly zero, my mind is clear, I'm not exhausted to the point of disability and my mood/temper is more even.  I feel like myself again.  Never underestimate a herx. 

I wonder if I treated myself for a herx as I came down from the mino, would I find I'm better?  In anycase, I will never quit overnight again!  That was a really bad idea on my part.  I suppose a gradual reduction would have been the way to go.  I was a little overconfident in my remission!

[JBJBJB]

You may want to space out and gradually take the mino off. You go cold turkey when you suddenly stop taking a drug which you had been taking regularly. So perhaps you could develop a plan, like every other day.

 

Week 1-week5

Every other day

Week 6 – week10

Every two days

Week 11-week15

twice a week

………………

then once a week,

once a month…..

 

 

 

 

 

[Jennhere]

I may give that a try… The flood of pain was so scary though.  I think I'll need some time to consider a reduction plan.  It's debilitating for me and I have three kids.  Single parenting.  It would have to be the right time to give it a try.  I was totally unprepared for a negative result.  I had put a lot of faith in my two years of remission!

[SusanSD]

JB, I like your plan, but for me, when I get to remission and think about reducing dosage, I will try every other day for 6 months and see what happens. I am too worried about giving these bugs a chance to develop resistance.

Like Jenn, I have little kids to think about. But at least, I am not a single parent. Kudos to Jenn for keeping everything together!

[Jennhere]

I think I'm back to normal.  Feeling great again.  😎

[Author]

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