Break Time

[John McDonald]

Hi Joe,

Full dose – a great way to explain questionable calls that inexplicably consistently benefits your daughters' teams.  😀 I've actually had to ref her games briefly when the assigned ref didn't show up. Talk about awkward. But usually after a few minutes the correct ref arrives and that was much more common in Under10yrs (U10) when parents, coaches, and refs as well as kids are inexperienced. Now they play U12 and U14 and the ref situation is much better.

May I ask why you are continuing the benicar?  And how many mg is half a mino tab? The Benicar taken 20mg 3x per day increases herxing by (so we are told) activating the innate immunity through the VDR receptor. But if you take it 40mg 4x per day it provides sometimes dramatic palliation of herx symptoms by interacting with other transcriptional nuclear receptors. I can vouch for the patient side of all of that, more herxing at lower doses and more palliation at higher doses.  One of our group at the Road Back BB had intolerable herxing for a great long time with 4mg of Mino until she tried Benicar, and then she was able to ramp quickly to 25, 50 and I suspect now 75 or 100mg of Mino with acceptble herxing. This is complicated theory specific to the MP, not necessarily Road Back AP so apologies to the new comers, just skip this please. In theory, by now, by Marshall's model, my macrophages should be much less parasitized by microbes than early on the AP or MP treatment. And since I am deliberately reducing my 48 hour dose of Minocycline, I will also therefore be reducing that alternate day minocycline induced immune suppression.  I can vouch for the patient experience for that too. That is, for some hours after dosing with the Mino my herxing is suppressed. That's why patients often report greater herxing on the days that they do not dose.  So during my break I am at some risk of having my immune system recognize and destroy more bacteria than I might like at one time. At the MP site we speak of that as runaway herxing, I have experienced it and it is unpleasant and a little difficult to corral again. But remaining on the Benicar helps to palliate any herxing that I will get from my now healthier immune system. Again, the theory is what it is, but I can vouch for the patient experience.
Also, do you expect results similar to your last break during phase 2?  I hope so. On my phase-2 breaks I felt great, really great, and I realized that things I didn't know I was treating were getting better. For example it was during a break that I discovered that my GI tract was much improved and I had some nice improvements in my cognition.  But since on the MP we dose for something near but just short of intolerable herxing, as defined by the patient, you tend to feel crappy all of the time until you do take a break. I was a little confused by your post (I think I am confused now trying to speak to this:() and wasn't sure if you stopped herxing completely during your break and were asymptomatic; or the herxes gave way to some normal RA stuff? I haven't had normal RA symptoms for a couple of years now, break or not.  It was maybe 6 months into phase-2 (2 simultaneous antibiotics) when my RA symptoms pretty much vanished. On some really vigorous herx days now I can get warm hands or slightly swollen fingers but I have to make a fist to know that and the pain is a nearly immeasurable fraction on a scale of 10. For the last two years my herxing has mostly been cognitive and emotional herxing with some light sensitivity, muscle fatigue and general mallaise thrown in from time to time.d So I could argue that I am not even treating RA anymore. I know I still have a touch of it from the big herx days that I speak of, but it isn't as significant as the neuro stuff. Why do I do it? My dad died of Alzheimer's at a too young age, another idiopathic autoimmune disease. All the vigorous neuro herxing suggest that I am killing bacteria in my brain. So if the model is right and if I am lucky I will clear my head as well as my joints.

Best wishes – hope you stay in touch- I am taking a break from antibiotics and herxing but I plan on staying very much in touch. I will taper off the antibiotics to avoid runaway herxing and I may yet have entertaining stories to tell of the experience.

Joe

[John McDonald]

To gonnabhealthy and to Orchid,

The MP is a newer, aggressive and sometimes controversial version of antibiotic protocol that some think is the wave of the future and some think is cultish and just weird. I'm sort of the rheumatoid arthritis guinea pig at this bulletin board for trying the MP. Many are curious about it. The MP model can be very complicated and it is very much centered about a strong personality, Trevor Marshall PhD (not MD). I try to report my experience from time to time. I wish to be candid and to share the good and the bad of it. I don't advocate the MP for new people on this web site. I might if you phoned me, but even then I see great value to Dr. Brown's original protocol and there are those on this web site that will vouch that I am bullish about the AP. I got very substantial and credible remission from about 14 months of AP protocol before I tried MP. If you are curious then probably the best portal for the MP is Amy Proal's site, http://www.bacteriality.com. The main site is http://www.marshallprotocol.com. Actually most of us agree that the more points of view the better when it comes to informing your own treatment. Otherwise you are stuck with whatever doc offers.

[JBJBJB]

John,

How are you doing these days after off the medicine.

Thinking of you and please keep us posted!!!

JB

[John McDonald]

JB – thanks for asking. I am BUSY and enjoying myself. I am not completely off of my antibiotics. I may just lick the zith tomorrow. My last dose was 1/16 of a 250mg tablet, down from my usual 1/4 each 10 days.  I've dropped the C completely and I have been taking Minocycline at 25mg every other day but I forgot yesterday and decided to skip it today. So I think I have nearly tapered off of the antibiotics since September 1. My herxing have nearly disappeared, actually nearly from the 1st.  Aside from licking the zith pill tomorrow I think may be off the antibiotics for the balance of the month and perhaps half of October. I am still on the full MP dose of Benicar and will not taper off of that until I have had a week or two free of antibiotics. 

I have felt sharp and I have been running, walking and weekend refereeing in my daughters' AYSO soccer. Today I am just a little light sensitive but I was in daylight and sunshine all day yesterday and Saturday with no ill effect. I feel great. I am having fun. I am also getting a lot of stuff done that somehow dragged on and on when I was herxing.

So I take this as good news in several ways. Feeling great is, well, really good!:) I don't have RA symptoms at all while on break though I had only minimal RA herxing  at this point anyway. I can confirm that I have recovered some ground in my brain, emotions and gut that I thought lost to old age. In the local AYSO soccer organization I am eliciting respect for my weekend refereeing abliities that were a little beyond my grasp while herxing. The coaches, parents and players have been very happy with me and I am having great fun. I still have some career stuff more or less on hold. I mean, I don't want a challenging new job when I might neuro-herx it to failure. This job that I do have with what was a tiny San Diego company has evolved to something rather dull and not-so-promising but it is easy.  That can be nice when I am feeling mentally compromised. I don't know what to do about career quite yet.

But I also know with my break clarity that the only thing that is different is that I am taking less antibiotic. I doubt there is an antibiotic side-effect that can account for all of that strange herxing, especially on such trifling small doses, so I am more convinced now than ever that it is real herxing and real bacterial destruction. I don't want microbes thinking and emoting on my behalf, as it were, so I will want to resume the MP in maybe mid October or early November. But I might just do a maintenance dose until the girls' AYSO season is finished. I am having too much fun.

I should add that zith is taken at very long intervals, but from experience when I took a break two times before, a peculiar thing happens. Herxing from zith tapers away to nothing after 10 or 15 days but right around day 20 I got a parting gift, a kind of flu mixed in with vigorous herx symptoms. One other has claimed a similar experience. So to prevent that I will take the tiniest bit of zith tomorrow or sometime next week. That worked to arrest the “parting gift” the last time I did this.

Fun note: yesterday my 12yo and 14yo daughters both got certified as referees as well. So now they are both players and referees. I am trying to arrange a game this weekend after their regular games where Dad will be the center ref and the girls will be my two flag-waving line referees. It will be a daddy-daughters team of referees all uniformed alike.  It will be their first game dressed as the bumblebee team and woe to the parent or coach who questions their calls. But we have great parents and coaches so it will be loads of good fun.

[JBJBJB]

John,

Thanks for the update!!! It's really great to hear that you are doing very well and working carefully with your med to avoid withdrawal setbacks. Glad you've been enjoying outdoors with your girls. They grow up so fast and before you know it, they will be out to college.  Whatever the sacrifice you are making is worthwhile.

Cheers!

JB

 

[John McDonald]

MP/AP Vacation Update:

Note to Newbies, I did very well with Road Back AP and I achieved considerable remission in about 14 months. But I decided to try a more agressive type of AP known as the Marshall Protocol and I have been at that for about 3 years now. The MP reduced my RA to a much more complete remission than I achieved with classic AP but the MP elicited altogether new herxing in other tissues that were not describable as RA at all. Most notably I have had 2 [corrected from 3] years of vigorous mental herxing while taking a 3 antibiotic combo plus Benicar. I have routinely periodically reported on this adventure here in this forum and this is just another installment. I am not selling MP here, simply describing my experience. The classic AP was very effective for me in terms of restoring my life and getting off of the nasty DMARDs. I am about to resume the MP after just about a full month of antibiotic break. Here is my journal note today.

---

Still on a full MP break, tapering abx from Sept 1 to mid Sept and free of meds incl Benicar from mid Sept to now. On the plus side I have had some excellent health, I have been athletic and I have been focused and productive at work and home. I have felt quite sharp and generally happy. My light sensitivity has abated tremendously though after 3 years I find I don?t like real bright light, indoors or out. Nevertheless the only real penalties for refereeing (youth soccer) outside with no hat and no dark glasses is a bit of sunburn on a thinning part of my pate and a headache. I pay a higher price for being 54 and running to keep up with 14 year olds.

 

However after a month I find that I have slight swelling in my hands pretty much all the time, not just on days 3 and 5 for example, and something approaching discomfort. Some of my post exercise discomfort might be a bit of arthritis in my feet. So hands and feet, I can safely conclude that I am not cured of RA. I am nearly cured, but not cured. But I suppose my patterns of herxing were telling me that.

 

Also when I started my break I marveled at how clearly I could focus my thoughts and attention. That has been hard for 2 years and I have been badly distracted from work by bulletin boards, email, friends, music and what have you. But now I easliy I turned off the bulletin board ?watched topics? and began giving very abbreviated advice to email requests from Road Back and MP patients. It seemed great. I have been very productive on catching up with many important things. But after a while I realized that I hadn?t just gained focus, I have lost much ability to connect with friends, colleagues and family. They seemed so engaging while I was neuro-herxing and now I am more self-absorbed and more hyper-focusing on my work. People are less engaging for me, less interesting right now on this break including friends and family. It frankly feels a bit empty compared the warmth of friendship and family, but it does feel familiar. I have lived this way for many years before phase-3. Indeed it is a typical engineer / scientist trait. I frankly would rather be a little less focused and more in tune with people, friends and family. So I wonder if the people connection is herx, a temporary exacerbation of symptoms, or cure, perhaps some benicar palliation of mental compromise due to inflammation. When I spoke of this people connection and softness before, some including me have wondered if it is naturally due to aging. This MP break puts that idea aside.

 

I also find that I am reaching for Advil much more often than I have for 2 years. Frequently it is for headache, sometimes because of bright light. Sometimes it is from stress from ?getting stuff done? and sometimes it is the appropriate response to athletic induced pain. But nevertheless, I haven?t had regular headaches for years.

 

I believe that starting next week I will begin easing myself back onto the MP, at first with just Benicar and Minocycline. I want to be whole and I still think that is the way.

[Kim]

Thanks for checking in, John, and glad to hear you've had a relatively nice summer.

Your observations are extremely interesting to me, having tried MP for 6 months myself.  The neuro-herxing is what I couldn't deal with, because frankly, it scared me to death.  I couldn't stand me, so my husband probably didn't think I was very nice to be around either.  My relationships with family and friends are too important to me, and being psycho b*-#^@# any longer was going to jeopardize those relationships, and too big a price for me to pay.

I really hope you can find some compromise so it doesn't have to be either/or and you can avoid the scary neuro-herxing.  If anyone is smart enough to figure out how to balance it all, it is you, my friend.

Take care…..

 

[Jo]

[Trudi]

Hi John–

What a bummer that some of your symptoms are returning.  I hope the restarting the protocol will again ease any inflammation and discomfort.

My son is an engineer and I used to work with scientist.  You are correct, being non-social comes with the territory; it takes extra effort to socialize.  When I was told that scientists have a hard time with conversation–I told them not to worry–I'd talk for the both of us :roll-laugh:!

Good luck,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[JBJBJB]

Sorry your symptoms are creeping back on you when you have nothing on under the sun (meaning when you are off the medication). Have you tried to reduce your physical activities? I know how disappointing you must be feeling. However, I would say it's a good thing you took off your med and tested how well you could do without it. Perhaps you may need a little more time to completely take off.

I am sure your daughters were really happy to see what you can do now. Just take it easy, don't over do it. I am sure your cells and muscles are still not normal no matter what your assumptions are. 

JB

[John McDonald]

JB – I am not so dissappointed. The symptoms are incredibly mild. I would never connect them with RA if I had never had the full blown disease. But I have had nasty RA with all of the disabling pain and fear that comes with it so naturally I am super-uber-attentive to see if I have any signs whatsoever. I do. I have the barest bit of inflammation. But over the last few months of MP my neuro-herxing has been ebbing and herxing in other tissues has been taking its place. I have had a small resumption of RA herxing, the first really on this particular 3 antibiotic combo. That seems to be a normal pattern and by the MP lights it just means that I have some more microbes to kill in my joints. Hopefully a resumption of the MP will do that.

Kim – The only solution I know of to keep the neuro-herxing within tolerable limits is to GO SLOWLY; the same old saw, kill the microbes, not the patient (or the marriage, or the career, or the…). I know that the worst is over. On my first 3 months of phase-3 I was really compromised (with some embarassing but great stories to tell). But among my problems was that I was unable to tell how compromised that I was.  It took about 3 months for me to realize that I had intolerable herxing. I was like the drunk at the party who was too drunk to know that I was drunk, as it were. Once it dawned on me I cut back severely on the 3 antibiotic combo and resumed level flight again. That is why it took me two years to make the same sort of neuro progress that I did with my joints and gut in 6 months on phase 2. I just couldn't stand to be psycho. Ugh!I am still only about halfway through phase 3 if you measure my progress by the amount of antibiotic I was taking.  For all I know the 2nd half may be much faster, about the same or much slower but I will meter my dose so that I am not too wacky. Anyway, I restarted the Benicar today. I will ease very gradually back on to the 3 antibiotic combo. I can't blame you for quitting.

[JBJBJB]

John,

You could take a test to measure your neurotic level.

http://www.neuroses.org/cgi-bin/sfesurvey.cgi?theneurosespsychologytest

JB

[John McDonald]

You could take a test to measure your neurotic level.

Too busy being postal in a fast food place near me:doh:

[JBJBJB]

:roll-laugh:

[John McDonald]

On Dec. 1st I resumed the MP phase-3 right where I left off in September. My AP/MP vacation is over. Oddly enough, I had more obvious herxing when I was on only 2 of the 3 antibiotics. I didn't have much herxing on those wee doses but my hands had just a noticeable amount of arthritis. That vanished when I started all 3 abx. It is weird, almost as though the abx can only target one set of microbes in one organ at a time. I am not yet experiencing much neuro herxing again (yet) but maybe I will not until I ramp up a bit. I think I had very nearly mastered this dose before I took my break. Also, I got a great deal of sun and exercise during my break so I suspect that my 25D levels have risen. In the MP lore that is supposed to slow microbial killing. I was asked about just how I ramped down for my break.

Sept 1          Starting break – ramped Z & C to

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