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August 31, 2008 at 11:19 pm #300940John McDonaldParticipant
Here following is a slightly edited post I made today on the MP site. Tomorrow marks the end of my 3rd year on the MP and a total of about 4-1/2 years on AP & MP. Just as the darned MP promises, it has consistently delivered evolving herxes of various kinds for 3 years now. I have previously taken some breaks during MP phase-2 whilst I traveled overseas but for the last 2 years I have only traveled overseas two times and I did not stop my antibiotics for those trips, so I haven't had much of a break from herxing for 2 years now. It was during my phase-2 breaks that I realized just how profoundly I had improved. Hopefully I will notice some nice gains from this break. But irrespective of that I am ready for a herxing vacation and look forward to being a vigorously active soccer parent for my daughters this month.
My MP progress report:
September 1 marks my second year on phase-3. I will be easing up dramatically on my antibiotics in September for a little break and to enjoy whatever I have achieved in these last 2 years. I know from unpleasant experience that stopping the antibiotics is a bit like leaving a moving car, some care is needed. So today, day-1 of 10, I am dropping my 10-day abx by half to 1/8 of a tablet and dropping my C by half to 1/4 of a capsule but am leaving M at the same dose for the immunosuppresive benefit. Next 10-day cycle I shall reduce more. Somewhere near the end of the month I may be off all the antibiotics for a bit. I will continue to take Benicar q6h throughout. If all goes well I will be enjoying outdoor exercise as a youth soccer referee for my two daughters' teams. I have found that I can referee on a reduced regimen of antibiotics. But I find it just barely possible and I perform poorly mentally and physically when I am at my full dose.
Including my Road Back AP portion, I have been on antibiotics for about 4-1/2 years now. I have gained enormously from the AP and phase 1 & 2 gains on the MP. My improvement from Mar. 2004 thru Sept. 2006 was absolutely amazing and included health improvements beyond my original rheumatoid arthritis diagnosis, especially improvements to my digestion and cognition. Those first 2 years were full of stunning gains.
These last two years have required very careful attention to dosing and more than a little apologizing due to cognitive and emotional herxing. It is harder to sell the advantages of MP to my friends and colleagues since my physical health is so much better as to be nearly normal, but I take the antibiotics and they see my mood swing, my judgment falter and my work and life attitudes sometimes take a blow. I've carefully maintained my dose at just tolerable cognitive dysfunction but that has kept me herxing at this level for 2 long years; an irritating perma-herx. Wouldn't it be nice to have a medically induced coma for a couple of weeks and have doc kill all the bacteria at once? Not! Nevertheless my IP problems at this dose are now very much improved. I'm once again willing to make big decisions without fear of ruinous judgment and I am consistently getting my work done. My IP is evolving to somatic herxing again (at my baseline dose) which gives me hope that I have cleared some of the spiders and their webs from my head. I expect more neuro-herxing at higher doses. I even suspect that it may include such icky and unpredictable stuff as siezures based on some previews I may have had. I am comitted to the treatment. But I shall enjoy a month's break to insert a bit of honest living, if all goes well.
-john
September 1, 2008 at 12:10 am #317732MicheleParticipant😀
Enjoy this well earned and well deserved break, John!
Michele
September 1, 2008 at 12:32 am #317733JBJBJBParticipantJohn,
So glad to hear your improvement. What are you going to do after your a month break?
Congratulations!
JB
September 1, 2008 at 12:46 am #317734John McDonaldParticipantMichele, thank you so much.
JB – I dunno. Maybe hit it again, maybe take another month.;)
You know, physicists have goofy humor. To wit (so to speak): irony in the universe increases like entropy. We just get more of it. So I figure if I spend 5 or 10 years recovering without a break, then when I'm done I will get hit by a bus or something before I can use it. So it is better to enjoy a little bit of this recovery along the way. It reduces that irony thing. Most likely after one or two months off I will dive back in and see what more I can clean up. Besides, my girls are 12 and 14 now. They are filling their life with their friends and altogether too soon they will be driving and too busy for daddy time. I want to get it now. This morning the 3 of us went body surfing. Starting next weekend I will be the soccer dad. This is the good stuff!
September 1, 2008 at 4:54 am #317735patchouleeParticipantJohn,
I so hope you enjoy your break! You have helped me so much in the past few months I can not tell you how much I appreciate everything. I wish you even more good health then you have achieved until now!
Angela
September 1, 2008 at 6:31 am #317736MazKeymasterHi John,
Your courage is a real inspiration and I admire greatly your wisdom to make the most of your lovely, young family while you have the opportunity. Such a truth that we can miss out on the journey while trying to reach the destination….for so many things in life. My eldest (22) had just returned to college and my youngest (almost 17) now has her own set of wheels…the baby birds now fledglings….and it's taking some adjusting for both Mum and Dad! 😯 Where did all those years fly? Gone in an instant, it seems.
I hope your break from routine brings the time to enjoy every single second with your growing brood and a much deserved reprieve from herxing!
Peace, Maz
September 1, 2008 at 12:15 pm #317737lindaParticipantHi John,
I know you've earned a break, hope it's a good one! My 2 youngest were 12 and 15 when we first moved to SA, TX, 8 yrs ago. Now they are both out of the nest and it seems like I just blinked. You are wise to take this time with them, and create good memories. Maybe you should get a scrapbook or video to fill with pics and whatever from your MP vacation! Soccer Dad sounds like fun. I was baseball mom and Band mom. Marching Band in TX is as big a deal as football. The first season (my son plays trumpet) I was too sick to get to any games, and that was tough. The last 2 years I was able to go to all the home games- the last year he and a friend played the Nat'l anthem as a duet for every home game, and I saw every performance. He knew I was there because I would stand by rhe rail and watch him, and give him the thumbs up as he would walk back to the bleachers. You're going to get some great stories to tell and remember- make sure you share some of them with us.
Btw, I so understand what you're saying about the irony thing-Cease the day!!!:cool:
September 1, 2008 at 8:03 pm #317738KimParticipantDo hope you enjoy this break, John. You've been such an ambassador helping so many of us through AP and MP and I, for one, thank you.
After being on MP for 6 months, I too am taking a break. My plan was to take a break in October in order to help my daughter with a new baby, but with my sister's recent diagnosis of SD and the stress of this stupid storm hitting all of my family in the gulf coast, I just couldn't deal with that level of herxing right now.
Enjoy being 'super-dad' to your adorable daughters. That is what it's all about!
kim
September 2, 2008 at 1:44 am #317739lynnie_sydneyParticipantJohn – seems like a life-affirming decision and I really hope you enjoy your break to the fullest. 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)September 2, 2008 at 2:04 am #317740JBJBJBParticipantJohn,
Good luck to you. Hope your remission will last forever!!!
I know how much you will enjoy being with your kids. My two kids, 12 and 15, need us more than ever. We love every moment of it. We know how hard it was for you to miss out a lot of outdoor activities. You are wise to “steal some time” from your treatment to be with them. I admire your courage.
JB
September 2, 2008 at 3:23 am #317741JBJBJBParticipantKim,
Hope you will have a smooth break from your treatment. I know how stressful you are going through. I have a younger sister, too. I know how devastating you are. You are going to pull all of these through. I am rooting for you.
Hugs,
JB
September 2, 2008 at 3:53 pm #317742orchidParticipantI'm glad to hear this, but can't say I entirely understand it. I'm new here so can anyone explain what his post means (in the grand scheme)?
I'm learning about AP, don't know as much about MP (except that it take a lot more effort).
I thought that once you're on abx, you stay on abx…otherwise you could have huge issues. But from what I'm hearing here, he's made great strides, but the herxing is so terrible that he needs a break?
Please help a newbie understand what all this means? Thanks!
John – you seem to know your body well and know what you're doing in terms of AP/MP so I wish you well… 🙂
September 2, 2008 at 6:21 pm #317743sueraParticipantJohn, good luck to you. I certainly know how it feels to want to enjoy your kids instead of just praying for the day to end because you are in such pain. Thanks too for all the help and encouragement you have given to so many here.
Sue
September 2, 2008 at 8:38 pm #317744Joe MParticipant[user=3]John McDonald[/user] wrote:
If all goes well I will be enjoying outdoor exercise as a youth soccer referee for my two daughters' teams. I have found that I can referee on a reduced regimen of antibiotics. But I find it just barely possible and I perform poorly mentally and physically when I am at my full dose.
Full dose – a great way to explain questionable calls that inexplicably consistently benefits your daughters' teams. 😀
May I ask why you are continuing the benicar? And how many mg is half a mino tab?
Also, do you expect results similar to your last break during phase 2? I was a little confused by your post 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?
Best wishes – hope you stay in touch-
JoeJoe
September 2, 2008 at 8:41 pm #317745gonnaBhealthyParticipantI'm with Orchid! I am in the learning stages and haven't jumped on the bandwagon yet. I am trying to learn about AP, have read both books (actually about 6 yrs ago -sounded so scary, I did not procede) I am looking at both AP and MP and trying to weigh out the pros and cons of both. MP sounds like AP with more drugs and living like a mole, in complete darkness.
It's all a little overwhelming at this point. I have been wading thru posts on this site and they are helpful. It does sound like a great community of people and supporters.
If anyone has any advice or comments on the AP/MP thing, I'd love to hear from you. The idea of a break is a new one to me. I guess that comes with alot of experience and learningto know your body and what you can and can not do with all of these meds.
By the way, I have Limited/CREST scleroderma. Any one else dealing with that and using AP?
Would love to hear from John about combining the 2 protocols.
Thanks to all!
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