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John McDonald
Member Advocate
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Posted: Thu Aug 30th, 2007 17:22 |
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Sunday:
This is a boring post, which is to say a good post. May we all have boring posts.
I am starting my 6th cycle at these abx doses. I spent the last week working in Portland, OR, traveling on the Sunday before and returning yesterday, the Saturday after to maximize my time on site, and I must have worked about 50 hours, some of it quite physical. I did well. I may have mastered this set of doses, at least with respect to being able to work. I had some light sensitivity but it was manageable. I had a morning of 'impatience', that is I had emotional IP, but I could tell and I knew well enough to put my hands in my lap and behave. I haven't often been that self aware on phase-3. At 3PM Thursday I becamer very tired and sluggish so that night I succumbed and went to bed early. Later that night I developed a very short-lived fever and woke feeling fine. That was weird and reminiscent of when I have extended zith to 20 days, but much shorter duration of sickness. On Saturday (yesterday) I had RA type IP and this time my feet and hands weren't just inflammed they actually hurt. So I did have a fair amount of IP during the 7 days but my mind was mostly intact which was pleasant.
I did self-treat with 2 morning cups of coffee each day. I do that on the road partly out of consolation for traveling and I rationalize it because I want my neuro-herxing to be damped when I see customers. It does seem to dampen things some for about 6 hours which is about right for a work day, and I still get IP.
I can't remember if I have mentioned it but I am sleeping a lot on this set of abx doses. I seem to crave about 10 or 11 hours sleep per day. It is great, dreamless, restful sleep but wow, I never want this much sleep. So I guess this is IP too, except unlike most IP it feels good.
john
Today:
Something has changed and pleasantly. Sunday I related that I am having a kind of sleep herx in which I sleep 10 or 11 or 12 hours of deep, dreamless but restful sleep. This has been going on for weeks and weeks. Well the last few days I am sleeping normal 7 to 8 hours and dreaming prolifically to make up for time. Many of these dreams have been wild and very pleasant, involving old friends, good memories and achievements. In one I built a half scale version of the Petronas Towers on our property. In waking life I feel good and I was told yesterday that I look different and healthy. Every week on the MP is an adventure. I know that it is time to increase one of my abx doses but I may linger in this pleasant state just a bit longer.
I had an odd, short-lived fever episode last Thursday. I wonder if I cleaned out another viper's nest of bacteria that day?
John
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Mary21
Member in Phase 3
| Joined: | Sun Aug 26th, 2007 |
| Location: | USA |
| Posts: | 136 |
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Posted: Wed Sep 12th, 2007 12:48 |
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John
I have RA and sjogrens and plan to begin MP in the next few weeks. Please tell me that your joint swelling and progression of nodules as well as pain have reduced enough to make all of this worthwile!
Vicki
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RA, Sjogrens/Ph 1 1/7/07/Ph 2 12/4/07/,calcium & mag, Noirs 2%, 25-D-28.4. I-25-47.5
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John McDonald
Member Advocate
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Posted: Wed Sep 12th, 2007 14:32 |
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Hello Vicki,
The MP has been so worth it. My RA is 95% to 97% gone. What do I mean by that? Well, one measure would be that I hardly ever think about it. I keep a daily MP diary and I am still having RA herxing a few days out of every 10. But the only way I know is by clenching my fists or similar to detect small amounts of inflammation. Yesterday I had about 3 very brief stabs of wrist pain in a very rare wrist herx. I haven't taken an NSAID for Arthritis for over a year now, and then it wasn't every day. My arthritis is pretty much gone and it certainly doesn't rule my life anymore. I expect to be on the MP for another year, maybe 2 years. I may well have another bout of vigorous RA herxing before it lets go completely. Some of the other RA patients have had a sort of parting herx. But frankly I am not still on the MP for rheumatoid arthritis. I am now trying to kill the remnants of bacteria in other organs, especially in my brain, but wherever I can find them and kill them.
Since I have been on the MP I have had my RA resolve (95% to 97%), I have had my bowels improve enormously, I no longer need probiotics, my cognition speed has returned to what I remember from my thirties (I am 53), I may soon claim some big improvements in my emotions. I used to be pretty quick to anger, lyme rage maybe. I have had a lot of herxing like that this last 12 months and maybe, maybe I am emerging from that now. So far the MP has been very, very worthwhile for me.
Nice to see you here Vicki. Now, why are you using English as your moniker?
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Mary21
Member in Phase 3
| Joined: | Sun Aug 26th, 2007 |
| Location: | USA |
| Posts: | 136 |
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Posted: Wed Sep 12th, 2007 15:21 |
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John-
You have brightened my day!
I was having some real doubts. I am waiting for my lab results and expect them to be in this week. I have my meds and am having panics about having RA and since NOONE thinks this is a good idea outside of the MP world it has really added stress to the situation.
I needed to hear from an RA patient that this really works. Thanks.
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RA, Sjogrens/Ph 1 1/7/07/Ph 2 12/4/07/,calcium & mag, Noirs 2%, 25-D-28.4. I-25-47.5
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John McDonald
Member Advocate
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Posted: Wed Sep 12th, 2007 15:42 |
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Vicki, there are more RA patients. Look up Carol, Ival, Christina, and Amy Eliz. They all have had much worse RA than my own, and consequently they have had more dramatic improvements. Christina was pretty much bed-bound when she started the MP, and now she is a busy mother about to re-enter the work place. Their stories are pretty amazing. Right now I am riding a 'high' because I seem to have mastered a particularly difficult phase-3 herx. I can see clearly where I have been and what I have accomplished and in what is arguably a short period of time as seen after the fact. But when I am in the midst of a difficult herx it often seems as if I am sick, have always been sick, always will be sick, etc. At those times I need the encouragement of my friends. But each success brings confidence to weather the next bit.
There are some other terrific non-RA threads here. You'll want to watch Barbski's progress. Barb brings some much needed and much appreciated, dry British wit to a difficult case of Chrnic Fatigue. You will find it easy to love her. Amy Proal is a young lady with a very difficult road but with enormous courage and a beautiful heart. Her observations and writings, however difficult they may be for her, are always extremely insightful. You will find many more interesting threads here. This is an amazing group of people and you will add to that your own story and make us more amazing.
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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BARNEY
Member in Phase 3
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Posted: Wed Sep 12th, 2007 22:07 |
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English & John,
I am a sarcoidosis patient and I have too have severe joint pain.
I will be on MP 3 yrs as of Jan 1st 2008.
MP is the best thing that ever came in to my life and I promise you never regret it.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY (Bonita)
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Mary21
Member in Phase 3
| Joined: | Sun Aug 26th, 2007 |
| Location: | USA |
| Posts: | 136 |
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Posted: Wed Sep 12th, 2007 22:53 |
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Barney-
Do you still have severe joint pain? Thanks for the note! I am anxiously awaiting my lab work for a baseline. I was in the sun today and realized how photosensitive I am already before I even begin the MP.
This is much better than methotrexate right?
Vicki
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RA, Sjogrens/Ph 1 1/7/07/Ph 2 12/4/07/,calcium & mag, Noirs 2%, 25-D-28.4. I-25-47.5
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BARNEY
Member in Phase 3
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Posted: Fri Sep 14th, 2007 02:39 |
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English,
I rarely have joint pain and gets better all the time.
Methotrexate is very harmful to the body. Would not even consider it for myself.
I still get very tired from the sun, but I think my altitude (4,700 ft) also adds to it because I went to Tennessee in January and did not have as much trouble with the sun. Still tired but not drop dead tired.
MP is hard to do but make sure that you cover up and also protect your eyes with Noirs. IMO, winter is the best time to start MP cause you need plenty of clothing to keep warm and makes it easier to keep your skin free from sun exposure.
It is my promise to you, that if you go thru all the Phases of MP, that you will not regret it. You will eventually feel like you are human. Just remember, you have all of us MPers for support to get thru it. Ask in your own thread whenever you need advise...the moderators or the MPers will be glad to help you thru all the herxes.
Hang in there, we will make it!!!!!Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Mary21
Member in Phase 3
| Joined: | Sun Aug 26th, 2007 |
| Location: | USA |
| Posts: | 136 |
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Posted: Fri Sep 14th, 2007 02:58 |
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| Thanks Barney. You sound like an angel. Assuming I get my lab back I plan to begin on Tuesday.
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RA, Sjogrens/Ph 1 1/7/07/Ph 2 12/4/07/,calcium & mag, Noirs 2%, 25-D-28.4. I-25-47.5
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Knochen
Member Advocate
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 306 |
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Posted: Fri Sep 14th, 2007 17:50 |
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Vicki,
Don’t concern yourself so much with RA specifically. The formal names given to these diseases stem from a time when the underlying cause was unknown and was assumed to be distinct for each “disease”. The disease is throughout the body and may manifest itself in many ways.
I’ll point to the parable about the Blind Men and the Elephant. Except this time, the blind men (mainstream medicine, get it? <nudge-nudge> ) have stumbled into the elephant’s pen after it has been enjoying some highly fermented fruit and is in a feisty mood. General mayhem ensues.
Blindman #1: “Help! Something’s picked me up and keeps dashing me on the floor! OW!”
Blindman #2: “Help! Something huge, flat, and round is stepping on me!! Argh! Now my cane is broken, too!”
Blindman #3: “Help! Something heavy, wet, and warm keeps dropping on my head! Eww!”
The blind men compare notes after their escape and are certain that it couldn’t have been the same thing attacking them because of how radically different their experiences were. The zookeeper (gee, to whom could I be alluding?), who is very familiar with the habits of the elephant and knows exactly what happened, has great difficulty getting them to even discuss the elephant in the room.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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John McDonald
Member Advocate
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Posted: Mon Nov 10th, 2008 21:41 |
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I resumed minocycline and Benicar a few weeks ago. Now near mid November I am resuming phase 2 meds. I haven't decided when I will resume phase 3, perhaps within a few days or I may wait a bit more.
Since my last post on Oct. 17th I have been busier than ever, sharp, productive and happy. My athletic aches and pains have ebbed right away with conditioning and I find as referee I can keep up now with the young men and young ladies and NOT ACHE the next day. I now think my problems were more about being desk bound and getting now exercise for years while exorcising bugs. I feel great. I do have just a wisp on inflammation still in my hands and feet, but it isn't much, just a reminder that I am not done.
I am ramping back in to full phase-3 at roughly half-maximum dosage, but I am easing in slowly because it has been so darned good to get stuff done after 3 years of this incessant herxing. But like all busy people as I emerged I saw more stuff that needed attention and started doing it. Now I have to shuck some responsibilities so I can resume and finish herxing. I have carefully watched my diet, avoiding D with passion but I have also been out in the sun a lot while refereeing this season so I plan to remeasure my 25D to see how it may have moved. I bet it has remained as is or gone up. As long as I can maintain just tolerable herxing I am content but my D has been unreasonably high, given my diet and if my herxing ebbs away I shall have to figure out how to force my D down to ensure that I have killed all the critters.
So there it is, I still maintain that I am something like 97% to 98% cured of RA and related Th1 maladies. That is a purely subjective measure that just happens to sound like science, but it tells it like I feel. And I know I have more microbes to kill in my head and yet some more in my RA hotspots.
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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