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If there is no wind..............row
New Hampshire USA on CAPii since 2-4-2006 for MSii Currently on doxyii 100mg 2x day, rifamapin 150 mg 2x day, azithromicin 250mg, m,w,f and 500mg flagylii 3x a day for five days every three weeks, NACi 2400 mg, most of the sup
Seem to be at a stand still.......................
Submitted by doglover on Sat, 2008-05-03 18:50. I don't seem to be going one way or another. Started Rifamapin February 22, 2008 to see if it would jump start things and it hasn't done anything. Except I did notice more weakness when I did my pulses.
Any suggestions-should I change to different antibioticsi then what I am on now???
Or just assume this is as good as it gets-no progression but no improvement???
Also how do I get my signature line to show on my blogs???
Linda
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Doglover, Someone with more
Doglover,
Someone with more experience with the meds will come along for those questions.
As for the signature, it seems when you start a blog your signature won't automatically show, so there are two ways to work around this:
1. After starting a blog, reply to the blog and the reply will show your sig.
2. Open another window in any thread showing your "post new comment" box with your signature in it and copy the signature and paste it in the window of your new blog entry. This is a little more complicated for folks not used to posting but either way will work.
MP for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do
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NACi 2400 mg, Zithi 250mg MWF, minoi 100 mg/2x day, Iodoral 25 mg, Recommended Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I doThis is so puzzling to me,
Rica PPMS EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 50 pulses NC USA
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Rica PPMS EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 51 pulses NC USA
It certainly is good news
It certainly is good news you have not gone backwards! the more technically minded should be along soon to help with that. In the meantime, maybe reply to your post so that your signature shows up.
Blessings
CFIDSi/ME 26yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#12 2 gm oops then 1250 mg 4 days 6-14-08Linda- you may want to
Linda- you may want to have your doc consult with either Dr. Stratton or Dr. Sriram at Vanderbilt. If you aren't getting reactions any more it's either time for some other angle, like a course of rifamycin if you you can afford it along with some other agents that increase it's potency, or perhaps time to move to intermittent protocol if you think you've killed off the bug.
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Wait, wait, wait - you've
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
In my experience Linda you
In my experience Linda you have to expect the unexpected. My second to last Flagy pulse passed with no real impact and I was feeling good, but just as I am thinking maybe I have got through the worst of this, I have a pulse that knocks me sideways.
So my advice would be not to jump to any conclusions yet, just keep going and enjoy the quiet times.
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
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Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Hi Linda, Jim advises you
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Cured of multiple sclerosisi, on the intermittent Wheldon protocol since March 2006, EDSSi 0 for over 4 years.
Doglover - I agree whole
Doglover - I agree whole heartedly with LifeOntheIce advice above!
Sending you a PM.
My husband was on Doxyi, Azith and FLagyli and continued to get worse - it took high doses of several antibioticsi to arrest (knock wood) his disease and to begin to turn things in a more positive direction.
Daisy - Husband on CAPi 5/07. Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxy, Azithromycin, Flagyl, Minoi___________________________________________________________
Daisy - Husband on CAPi 5/07. Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-23, Tetracycline 7-3,
azithromycin, doxyi, minocycline, diflucan, mepron, prednisoneHang on a minute:
Hang on a minute: Daisy's husband had very active disease when he started, so did I in a different way and we both made rapid, if in his case, surprising improvements.
I noticed quick improvement not only because I was so bad to start with, but because I was rapidly getting worse, yet I hadn't been that bad until about six months before I started. Your progression has been more gradual, so your improvement will be as well. You sound as though you are still getting reactions, but in a likewise subtle way but it won't do you any good to keep swapping and changing antibioticsi because you think you aren't getting enough improvement: you can't just stop rifampin and then go back to to because you thought you made a mistake.
On the other hand, Barbara could well be right about the coinfections: Daisy's husband had them, I, the city girl since birth, didn't, but you breed dogs. Where are you - Maine? Should be lots of LLDs about..........Sarah
An Itinerary in Light and Shadow by a real "Painter of Light"...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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I think it's time for a
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If there is no wind..............row New Hampshire USA on CAPi since 2-4-2006 for MSi Currently on doxyi 100mg 2x day, rifamapin 150 mg 2x day, azithromicin 250mg, m,w,f and 500mg flagyli 3x a day for five days every three weeks, NACi 2400 mg, most of the sup
As you are from the
As you are from the northest, there is certainly an increased risk of Bb and related co-infectionsi being involved with your condition. It appears that CAPi is pushing all of the right buttons for the Bb part of that, but some of the co-infections require significantly different treatment.
Babesia is a malaria-like bug that responds to anti-malarial trreatments, but generally doesn't respond as well to conventional abxi. As with many of these intracellulari bugs, Babesia is notoriously difficult to diagnose.
As was mentioned previously Bartonella is another one to consider, as well as Erhlichia.
I came at this from the Lyme side, so I have already been down the road of ruling out these common co-infections. The sense I get from my research is that having multiple chronic infections becomes even harder to deal with because they tend to protect or mask each other. For instance, I have heard that it is virtually impossible to eliminate Bb until the Babesia has been dealt with.
But bring your motorhome on down, you'll be right at home! We get many, many folk from the northest visiting our fair state. While you're in the neighborhood, be sure and stop in the Gatlinburg/Pidgeon Forge area. My baby sister got married yesterday in Pidgeon Forge (home to Dolly Parton's Dollywood and some of the largest outlet stores in the country), and man was that place a zoo. Took me an hour to get there, and then an hour to get across town...and the town is about 5 miles across. And it gets even worse after school is out...yikes! But folks apparently enjoy it...they keep coming back!
Tennessee, USA - Bb positive w/neuroi involvement, suspected CPni
Doxyi/Samento for Bb 2005-2007
Started CAP 4/19/08 - NACi 2400mg, Doxy 200mg, Zithro 250mg M/W/F
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Tennessee, USA - Bb positive w/neuroi involvement, suspected CPni
Doxyi/Samento for Bb 2005-2007
Started CAPi 4/19/08 - NACi 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi pulses @ 3x500mg
"I'm not as good as I once
"I'm not as good as I once was, but as good once as I ever was" -- I'm sorry, but after reading your blog again this AM, this came to my mind -- current favorite country western song -- this was about 30 minutes after I threw up my meds. I think I'm going a stop having my one cup of coffee as it seems too harsh on my stomach. Linda, if you go, travel safe.
Mary Ann
SPMS. Weldon CAPi; 3/10/08 NAC 2400, Doxy & Azith. Phased in with little to no reaction except am weaker.
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Mary Ann
SPMS. Dx 1991. Weldon CAPi; 3/08 NAC 2400, Doxy & Azith. 1st metroi pulse 6/08
Hi Mary Ann--I'm a counry
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If there is no wind..............row New Hampshire USA on CAPi since 2-4-2006 for MSi Currently on doxyi 100mg 2x day, rifamapin 150 mg 2x day, azithromicin 250mg, m,w,f and 500mg flagyli 3x a day for five days every three weeks, NACi 2400 mg, most of the sup
Thks so much, Linda. I
Thks so much, Linda. I thought I had read it's best to take w/o food! Am glad you fnd dr in Conn. You need to save your big trip for the Grnd Canyon. Maybe I'll meet you there as I haven't seen it either. (actually I'll probably not)
Mary Ann
SPMS. Weldon CAPi; 3/10/08 NAC 2400, Doxy & Azith. Phased in with little to no reaction except am weaker.
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Mary Ann
SPMS. Dx 1991. Weldon CAPi; 3/08 NAC 2400, Doxy & Azith. 1st metroi pulse 6/08
It is strange isn't it.
It is strange isn't it. Sometimes the doxyi just hits you like that, even with food!
CFIDSi/ME 26yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#12 2 gm oops then 1250 mg 4 days 6-14-08Great Linda, Yes, It seems
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.
Linda, I don't know
Linda, I don't know about the comparative distances, since many of your bigger states are larger than our entire country, but there is someone in Chicago you might be able to see: get in touch with Mackintosh if she hasn't already contacted you...........Sarah
An Itinerary in Light and Shadow by a real "Painter of Light"...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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