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Time to go intermittent?

Submitted by Malcolm on Mon, 2008-07-21 03:48.

I am beginning to think about moving from continuous to intermittent protocol. I took a Falgyl pulse last week and the primary impact was to make me feel a bit morose and I wonder if this is more an effect of the Flagyli alone. I am generally extremely well, and in some ways I fell better than I can remember. For example I cycle around my town, which takes me about 25 minutes (non stop, quite fast), and I find this easy but I am sure that prior to my MSi dxi it would have felt like much harder work, and it is not really about fitness, it is more that I am free of some sense of lethargy that I used to live with a fairly permanent basis (unknowingly).

I am left with a disability in that I can't move my right leg properly when I walk or play tennis, but I think this is a result of damage done and that this will or won't heal in time, but it is not something that the abxi can help resolve.

So I am wondering (after a year on the full protocol) whether it is time to go intermittent in the near future. Any thoughts?

 

___________________________________________________________

Malcolm

Wheldon Protocol since July 07. Doxyii 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

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  Malcolm, when I changed

Submitted by Sarah on Mon, 2008-07-21 04:29.
 
Malcolm, when I changed to intermittent after just over a year, I was not perfect physically and still aren't, hence the EDSSi rating of 2.  This was, as you  say, the result of preexisting neural damage and won't get better by throwing abxi at it until it does.  These deficits will get as better as they can over time and if you continue cycling around town without the lethargy you didn't know you had until it left you, that is a good start.
If you move onto intermittent therapy, you have the option of going back to full time at any time that you feel your condition might be worsening and a few people have done this.  I did so for a couple of months in the early days out of panic, because I was the first person to do it this way, but now, after nearly five years since starting, I am still showing improvements...............Sarah

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

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Malcolm, such positive

Submitted by Louise on Mon, 2008-07-21 06:16.

Malcolm, such positive questions to be asking yourself!  I looked at your timeline and see that a Full year on the complete protocol will not be up until October.  So I would ask if you are thinking of transitioning then?  That would give you a few more pulses to be sure that they are all at about the same effect.  

For myself, I spent so many years spiraling downward that I would want to be sure of my stability before contemplating intermittent, just to point out that dropping back and working back could cause some temporary loss if quality of life to make that discovery.  How many pulses have you completed since October 07? 

Just some thoughts for consideration and yes, you can always restart that is a real advantage.   With my CPni and also Bb I am going to take my time asking myself the same question.  Bb may need a longer consistent application with no breaks in coverage from the information that I have been given.

Will be looking forward to following your posts.  Please continue to post your encouraging report they are wonderful to read and inspiring to us.

Louise

___________________________________________________________

6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

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Hi Malcom        As

Submitted by farandwide on Mon, 2008-07-21 11:25.

Hi Malcom       

As someone that wants to get this process over with and just be better in general, I'm jealous that you're at the point that you feel like going intermittent.  However, I would be of mind to not do this yet.  I think taking time to make sure you've taken out everything that can be reached makes sense.  Be thorough, you don't want to be trapped into having to come back later because you stopped things too soon.

There's a saying in the business I work in.  Measure twice, cut once.  This applies to following a protocol.  Do it right the first time you do it so that you don't have to do it again, and that includes doing it for a long enough time to make sure you've done all that can be done.

I've read here that the Dr. Stratton estimates 3 - 5 years on his protocol for most M.S. patients.  I'm 2 years into my treatment, so I expect there to be 1 - 3 more years to go.  NOT an appealing thought but it's going to take what it's going to take.

___________________________________________________________

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

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John, intermittent counts

Submitted by Sarah on Mon, 2008-07-21 11:53.
John, intermittent counts as part of the three to five years: I did one year full time and three intermittent and for me and most people DW has tried it on, that was enough...............Sarah

An Itinerary in Light and Shadow

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

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So a question Sarah, much

Submitted by Louise on Mon, 2008-07-21 12:17.

So a question Sarah, much related to the topic of Malcolm's blog; is the full year counted from full ramp up date which includes full dosage metronidazolei or tinidazole pulses or from the start date of the first abxi at minimally accepted dose? 

Another question now if I may, now that I have your ear is; did you do clockwork every three week pulses and therefore maximized the total number of full pulses before transitioning to intermittent? 

Can you say the # of full strength pulses that you did before transitioning to intermittent?  These are questions that I have had about transitioning to intermittent for my general information when thinking this question through for myself at some point?  Thanks for whatever you choose to share. 

Louise

___________________________________________________________

6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

»

Sarah         I

Submitted by farandwide on Mon, 2008-07-21 13:46.

Sarah        

I understand your point and don't disagree; however, my take on it is that given a choice of putting the disease behind you or putting the protocol behind you, I would rather put the disease behind me.  Yes, one can do both; however, since we're talking about an inexact science and process at this point, my opinion is that being more rigorous is the way to go.

Doing that is not in any way a "fun" thing.  I sucks, there's no ands, ifs, or buts about it.  I see it as what one has to do to better ensure the outcome.  Just my opinion as I have no idea how anyone can conclusively offer anything but an opinion.

___________________________________________________________

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

»

If one stops, or goes

Submitted by Twickle Purple on Mon, 2008-07-21 14:03.
If one stops, or goes intermittent, prematurely does one just step in again at the point they left off or is it required to ramp up again?

___________________________________________________________

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

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I have been over a full

Submitted by ruthless1 on Mon, 2008-07-21 14:44.

I have been over a full year, 12 pulses down & by no means as I thinking stop.

I have read that stopping & starting actually makes the bacteria resistent.

I want to be sure that my pulses for a number of months are of no consequence, without moppers, so as to see sxi before I even think about stopping.  I want it gone! gone! baby gone!!!!

 

___________________________________________________________

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

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Thank you all for you

Submitted by Malcolm on Mon, 2008-07-21 16:53.

Thank you all for you replies. I am not planning to go intermittent quite yet, I will keep going certainly until October so that I will have had on full year of regular flagyli. I do feel though that I have entered a different stage and that starting the slow reduction of abxi is probably appropriate. The intermittent protocol is still pretty aggressive I think, it is just the beginning of a slow down.

I was interested to get some feedback about this as there is not much talk about winding down and for all of us it is quite an anxiety provoking question. I will monitor my reaction to the next few flagyl pulses and if I have no reaction I will go intermittent after the summer.

Malcolm

___________________________________________________________

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

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Where to start?   Louise,

Submitted by Sarah on Mon, 2008-07-21 17:45.
Where to start?
  
Louise, a full year was counting from when I started period, but I didn't ramp up at all, full dose roxyi and doxyi from the start, full dose of flagyli three months later.
  
My three week pulses where three weeks from finishing one to starting the next one, I also never did more than five days.m I must have done about twelve pulses before going intermittent.
  
Now that all sounds like a fairytale, but its true: I was taking 4000iu of D3 and lots of chlorella for some time before, though and I never and any coinfections.
  
John, I agree with you totally, because it is far better to be safe than sorry but I did have DW watching over me.  Also if I had felt the tiniest bit of worsening I would have restarted straight away, not waited until I was much worse.
If I had restarted, I never ramped up to start with but for anyone else, if you started again, you could probably do the same.  I don't know.
  
Ruth, I never had any reactions after the seventh pulse.  I was frightened about going intermittent and cut the first break down to just one month because of that, but I never felt any downturn after stopping full time treatment.
  
Malcolm, you are quite right: there hasn't been much talk about this and I know it was anxiety provoking for me, but once I did it, it was plain sailing.  Of course, I still can't run properly, but my brain is even clearer than when I went intermittent and I did replant all our herb garden today, crawling around much of the time. So now I am ready for bed!...............Sarah

An Itinerary in Light and Shadow

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

»

Sarah, thanks for sharing

Submitted by Louise on Mon, 2008-07-21 17:59.

Sarah, thanks for sharing those details.

Louise

___________________________________________________________

6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

»

Malcolm - Happy for you

Submitted by Daisy on Tue, 2008-07-22 18:17.

Malcolm - Happy for you that you are feeling so great you are at the point of contemplating this! 

My only comment would be - to be on the safe side - given the hideous nature of MSi - to add continuous Rifampin to your protocol for several months to make sure you have truly slain the beast. 

If no effects from Rifampin - move on to intermittent with a clear concious!

 

 

___________________________________________________________

Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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Malcolm- a great thing to

Submitted by Jim K on Tue, 2008-07-22 18:58.
Malcolm- a great thing to be discussing! I'm inclined to go with our best indicator of infection: reaction to the stronger anti-chlamydials. Of these I think flagyli and the rifampin drugs are the ones for the acid test. So I would want at least a couple of months of rifampin and either pulsed or continuous flagyl to test the edge. Other than that, there is no reason really that one has to stay longer on full protocol beyond one's point of no-reaction. Some of us don't seem to ever get there (I include myself in this group) and some of us may get there in a year, with the majority falling more in the middle of the curve-- whatever that might be. Sarah has helped pin down the short-timer (if we can call a year+ antibioticsi short!) end of the curve and you might be helping to anchor that side of things. More power to you!

___________________________________________________________

 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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Is rifampin different to

Submitted by Malcolm on Wed, 2008-07-23 11:09.

Is rifampin different to flagyli? Is it worth swapping? Also what tests can I ask my doctor to take, should I have my titiers tested? If so what do I ask my doctor for?

I have 2 weeks off in August, I might take this opportunity to start on continuous flagyl and see how it goes.

Thanks
Malcolm

___________________________________________________________

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

»

Malcom        

Submitted by farandwide on Wed, 2008-07-23 11:34.

Malcom        

Flagyli and Rifampin are very different and used to fight Cpni in different stages.

Rifampin is taken daily to fight Cpn in the RB stage.  Actually, my understanding is that it hits it going from EBi to RB stage but I believe I've also heard that it gets it in RB stage as well.

Flagyl is taken in pulses usually.  You're on it for 5 days, then off for the remainder of a month.  That process is repeated each month. 

Flagyl fights CPn in the CB (Cryptic Body) stage.  It's anoerobic in that stage whereas in other stages, my understanding is that it's the opposite.  Other abxi do not fight CPn in the CB stage, only Flagyl or Tinidazole (Tini).

Consequently, I would suggest you take both before changing to intermittent therapy.  Better safe then sorry.

___________________________________________________________

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

»

Rifampin is sometimes

Submitted by Louise on Wed, 2008-07-23 12:21.
Rifampin is sometimes substituted for doxyi at some point and continued with the flagyli pulses as I understand it.

___________________________________________________________

6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

»

Malcolm, Reading the

Submitted by Reenie on Wed, 2008-07-23 12:47.

Malcolm, 

Reading the various   Treatment Protocols might help you decide what to do and when.  I think if you follow one of the protocols vs another, it may help you decide which way to go.    

I see on the bottom chart that the Stratton Protocol says: 

The Stratton protocol starts off in the same way as the Wheldon Protocol. However the aim is to build up to a point where you are taking all three antibiotics (ABXii) continuously. Once you have achieved that you add 

Rifampin and INHi.   

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

»

Malcolm- As noted by

Submitted by Jim K on Wed, 2008-07-23 13:39.

Malcolm- As noted by others, Rifampin is usually substituted for one of the antibioticsi and continued along with the flagyli pulses. It is considered a more potent antichlamydial than either doxyi or zithi/roxyi, and because it attacks the organism at a different phase it may cover Cpni that has adapted to other agents. Think of it as upping the ante to test your lack of response to the other agents. If you have not reaction to Rifampin you can feel more assured that it's time to go intermittent.

Your primary diagnosis being MSi, I think titers are a waste of time and money unless you had high titers to begin with. It has seemed to me that people with MS may have Cpn more sequestered in the central nervous system where it is less widely exposed to the immunei system and so titers may not develop. If you've had much broader symptoms beyond MS then you may have a more diseminated infection and more likely titers might indicate something. But the true test is reaction to CAPi agents, so that's your best bet.

___________________________________________________________

 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

»

On the other hand, I did

Submitted by Sarah on Thu, 2008-07-24 06:23.
On the other hand, I did swap doxycycline for rifampicin for six months (no, actually it was five) before going intermittent, but I had by that time stopped getting big reactions with metronidazolei so I can't say how much it helped me.  I know it made me walk worse for a few weeks due to the lack of immunomodulation.
Also, I have never done more than a five day pulse and in the periods of not taking abxi, I never suffered a down turn and neither have I now that I have completed the treatment.  I did never have anything wrong with me apart from MSi so I think I really did have smaller titres than David, for example.
Another thing to bear in mind is that Malcolm's GP might be quite happy to treat on David's regime at the moment, but adding rifampicin is a different matter.  TB is on the rise and rifampicin needs to be kept useful for that as much as possible: for C Pn there are many other options.............Sarah

An Itinerary in Light and Shadow

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

»

My Doc had agreed top 

Submitted by Malcolm on Wed, 2008-07-30 03:23.
My Doc had agreed top  replace Doxyi for Rifampicin, 300mg a day (is 300mg a day ok or should it be seperate doses of 150mg?). I plan to take the Rifampicin for 2-3 months (with Azith & Flagyli pulses) then all being ok go intermittent and revert back to the Doxy.

___________________________________________________________

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

»

I know somepeople take it

Submitted by Michèle on Wed, 2008-07-30 04:53.

I know somepeople take it in one dose and if you find that difficult to tolerate you may be able to just chop the tablets in half, if that is what he has prescribed for you.... If you get it in the form of capsules it might be a bit more difficult.   But if your condition is good, then once a day may well be fine.

Suck it and see.... 

___________________________________________________________

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

»

When I did Rifampin I

Submitted by garcia on Wed, 2008-07-30 05:08.
When I did Rifampin I started off on the 300mg capsules. After 3 weeks realised I couldn't hack the dosage and had no way out other than to quit. My advice is to either start lower than needed and build up (with docs approval of course) or either get tablets which can be split, or the 150mg capsules.

___________________________________________________________
Hunter: Don't think - experiment

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Malcolm, if you are going

Submitted by Sarah on Wed, 2008-07-30 07:10.

Malcolm, if you are going to do this properly it really should be 300mg of rifampicin twice a day, but beware of fluorescent orange bodily fluids.  I did take that amount straight off, but I never had any IBSi symptoms, so perhaps that's why I could............Sarah

An Itinerary in Light and Shadow

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

»

Sarah, so should these

Submitted by Malcolm on Wed, 2008-07-30 07:20.
Sarah, so should these doses be seperated or can I take them in one go?

___________________________________________________________

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

»

Sarah, Malcom       

Submitted by farandwide on Wed, 2008-07-30 08:42.

Sarah, Malcom       

First Sarah, I don't know why only 300mg constitutes doing things properly but I'll "chuck" that up to a British colloquialism Wink   I have a friend who lived in England for 6 years and came back with such terms.

Malcom, I've been on Rifampin for almost a year.  I take 300 mg, total a day.  I take 150mg in the morning, and 150mg about 8.5 hours later.  If you're on other bacteriostatics, it might not be necessary to up the dosage to 300mg, twice a day.  It's all in how aggressive you want to be and how much you can handle doing.

 

___________________________________________________________

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

»

The Rifampin doses must be

Submitted by Jim K on Wed, 2008-07-30 08:43.
The Rifampin doses must be seperated, 150/300mg morning and 150/300mg evening, and on an empty stomach. Bear in mind that they upregulate liver enzymes and other meds will be metabolized more rapidly so look up or ask you pharmacist about this. I'd split the roxyi dose to start with, but Sarah has taken it at one go with no problems.

___________________________________________________________

 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

»

Well, maybe I have a cast

Submitted by Sarah on Wed, 2008-07-30 09:38.

Well, maybe I have a cast iron stomach!

John, you could swap "correctly" for "properly" but to me "chuck that up" sounds more like "sicking that up" Frown............Sarah

An Itinerary in Light and Shadow

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

»

Sarah          I

Submitted by farandwide on Wed, 2008-07-30 12:56.

Sarah         

I have no idea what someone would mean by "sicking that up" lol!  Ahh....the idiosyncrasies of language!  Too much! lol Smile

___________________________________________________________

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

»

Malcolm - My husband takes

Submitted by Daisy on Wed, 2008-07-30 16:24.

Malcolm - My husband takes 2 of the 300mg capsules of Rifampin about an hour before breakfast.  It's the only dose of the day and this is consistent with Rifampin dosage in other intracellulari infectionsi such as TB.

Also - Jim was right - Rifampin interacts with tons of drugs so you will need to watch your spacing of meds.

___________________________________________________________

Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

»

How long can you take

Submitted by lee mcghee on Wed, 2008-07-30 17:02.
How long can you take flagyli for?

___________________________________________________________
Fibro, CFSi,  Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day,  Still cant shake it but improving.

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