That's when I walk into my GP surgery and find out if he's willing to support me on this. Thanks to David Wheldoni I have paperwork ready to back me up.
Now all I need is for the rest of you to keep your fingers and toes crossed. Well, as far as you can manage without falling over.
By 09:50 I will be out, either with a decision or having to wait while my GP checks it out further. At this time you may uncross anything you crossed. If you're in brain fog mode can't remember why you crossed it then bookmark this page so you can get a reminder. 
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Berkshire, UK. Diagnosed RRMSii Feb 4th 2008.
NACi 2400mg. All supps. Doxyii 200mg. Zithii 250mg. Metroii 400mg.
No GP/Neuroii support. Self medicating with help from David Wheldoni.
Started CAPii 20th April 2008. First pulse June 2008
Andesine, I suggest seeing
Andesine, I suggest seeing him in your minds eye handing you the prescription papers. I went in ready with the paperwork and release in hand with Sarah's help and a positive expectancy and it worked for me.
So I will see him smiling as he hands you all three prescriptions with refills, as he says keep me informed of your progress! More effective than fingers and toes
!
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Me, too, Andesine! Best
Rica PPMSi 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 49 pulses NC USA
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Rica PPMSi 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 55 pulses LDNi Rifampin 8/08 again NC USA
Andesine, I think I will be
Andesine, I think I will be asleep est but I will be sure to cross everything while sleeping. That's the only position I don't fall from anyway. Good luck!
Nancy
PPMSi-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 4 pulses. Rockville,Md. Loo
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.
Well there is now one
Well there is now one somewhat stunned GP sitting in his surgery with a pile of paperwork. He didn't say no. But he didn't say yes either. He's going to do more research and talk to David Wheldoni before he makes a decision.
He said that it's an unlicensed treatment which is why GPs will have a problem with it. He also said it can't be done on the NHS, interesting given that some on here are getting the abxi on the NHS.
Now we wait. I should have a definite decision by next Friday.
Berkshire, UK. Diagnosed MSi Feb 4th 2008. NACi first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
Just keep on taking the NACi
Just keep on taking the NACi because I suspect that if he actually contacts DW and reads the information the science behind it will reassure him. I was fortunate with my GP probably because the bottom line was that there was nothing else offered to me. He is also an examiner for the GMC, so I hope that when I get better he will begin to spread the word in those circles.
Bottom line though is that you can still self prescribe, as some on here already have to do although it's tough on the bank balance.
New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAPi 6/07: Wheldon
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #17...I can because I think I can.
Andensine, not saying no is
Andensine, not saying no is very optomistic. And only a week to hear the decision is really quickly. Keep seeing those prescriptions being passed over to your side of the desk and see both of you smiling!
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Some GPs do have a
Some GPs do have a problem with it, some don't. It depends how limited their thinking is, but it isn't something that is forbidden and stands a good chance of doing infinitely more for you than any of the licensed treatments. He must get in touch with DW and then get you started..........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 slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Thanks Sarah. He put David's
Thanks Sarah. He put David's email address down in my notes and said he was going to read through what I gave him in more detail as well as get in touch for more information. He said if I hadn't heard from him before that I should contact him next Friday.
Berkshire, UK. Diagnosed MSi Feb 4th 2008. NACi first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
How tough? Do I need to sell
How tough? Do I need to sell the house?
Berkshire, UK. Diagnosed MSi Feb 4th 2008. NACi first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
No it's not like the
No it's not like the 'standard' MSi teatment costs but maybe no more jewellery until you are better.
It's also good to point out the cost savings for the NHS when doing the CAPi.
New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAP 6/07: Wheldon
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #17...I can because I think I can.
It seems very encouraging to
It seems very encouraging to me he didn't say no & he is going to consult DW!
You will make it happen!
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysSince you asked... I
Since you asked...
I actually ran the numbers for the Wheldon protocol when was considering it. I assumed the patient was doing the full protocol (200 mg Doxyi per day, 250 Mg Azi, three times a week and 1,200 mg Metronidazolei per day for five days, more or less, once a month) along with the recommended supplementsi. I used prices from one of the internet pharmacies frequently recommended on this site along with an internet supplement provider.
I came up with a daily cost for the protocol of about $4.50 if using generic drugs and $7.50 using brand-name. The quantity purchased, various shipping options, taxes, sales or promotions could all effect your actual costs. This is certainly not an inconsequential amount, but given the potential benefit of the CAPi, it seemed to me to be worth a spin of the pharmaceutical roulette wheel - especially since I knew that Copaxone or the Interferons cost $50+ per day.
CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Fifth pulse metronidazole completed 2/19/2008.
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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Sixteenth pulse metronidazolei + INHi completed 12/20/2008.