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Neurologist now a believer...Submitted by Karl on Wed, 2008-01-30 10:47. Hello all, I thought it would be helpful to share further good news following my last MRI report.
I had a visit with my Neuroi yesterday to go over my last MRI. I give him great respect for having the ability to look me in the eyes and say..., " you've made me a believer."
(in the CAPi treatment) After 2 years and no progression of lesions/disease from the start and you have improved so greatly, I am a believer." He then said patients usually in my case with such a severe onset only continue to worsen quickly and steadily from the beginning.
He further stated that he was in touch with the Vanderbilt clinic and spoke with them about my case and the CAP treatment and my Lyme treatment and ultimately referred a patient to the Vanderbilt clinic. I know that patient will only get better. He also discussed about a CPNi clinic in North Carolina that is working to have clinicals printed. I'm looking to get further information to share.
He referred a patient. This can only mean he will do so in the future. Will his practice change overnight...no. But, I'm sure he will now be able to offer this to patients as an alternative. And that is a HUGE start. Secondly, he instructs Neurology at Harvard University here in Boston. I believe he will work the CAP treatment in on some level. Again....a HUGE start.
He further said to me that at the stage I'm at now, I will not worsen and will only get better and for someone in my case it takes about 4 years to fully heal even though lesions might not really disappear as the damage has already been created-one can get around that. He essentially is confirming that I'm cured is my spin on it. Of course, I have a way to go yet but what validation and not just for me, but my wife who found and started me on this treatment but for everyone out there doing the same and pushing through...this is huge to see happening when from the start it was at my "own risk and good luck," and noted distinctly in my patient file the day I stopped the Betaseron Interferon injections and that it was my own choice to do so.
I believe, I recall Sarah talking about her neurologist in this light and a few others. Please share these stories, again, because this has to spread and continue.
Mainly it is immense validation for us all- whether patient or caretaker and simply family and friends.
All the best,
Karl and Alyson
___________________________________________________________ Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSii, 23+lesions, 5/4/06. CPNi past and new chronic infectionsii. Lyme suspicious titers and Babesiosis found. Started CAPi 6/06 »
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Karl, this is amazing and
Karl, this is amazing and wonderful! Congratulations on your personal progress and on your ability to progress the awareness of the medical community. A Harvard neuroi convert is quite a coup! Does he have any neuro friends in the DC area? And 4 years -- That's what I've been telling people!
PPMSi-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. 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.
Wow, that's wonderful, both
Wow, that's wonderful, both for you personally and for the MSi community, too.
Not to mention all of us CPni-other folks.
Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 7 days off.
Get the research results you paid for: support Open Access
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Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Began rifampin trial 1/14/09
Currently: on intermittent
Karl, Thank you for posting
Karl,
Thank you for posting the great review from your neurologist. It is truly reassuring. My own doc (not a neurologist) has communicated with Drs. Stratton and Wheldon via e-mail and feels convinced the CAPi is a valid treatment for MSi.
Tina-MS 37 years;EDSSi 4.5
1/1/08 Wheldon CAP; Azith 250mg 3 x a week; NACi 2000 mg daily
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Tina-MSi 37 years;EDSSi 4.5 1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.
Karl, this is absolutley
Karl, this is absolutley wonderful news, both for you and for us. How gratifying too for the heroic doctors in the UK and elsewhere who have enabled us to take part in this adventure. A neuroi from Harvard indeed, who could ask for more?
Three cheers for Drs Stratton, Wheldon and Sriram - in lieu of the Nobel prize of course.
Carol
New Forest, UK. Progressive MSi dxi 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 #23...I can because I think I can.
I am so pleased - excellent
I am so pleased - excellent for you, Karl, and excellent for untold others.
How wonderful that your doctor could admit a Damascene conversion! It takes someone of calibre to do that.
Sarah's neurologist couldn't bring himself to look at her repeat MRI which showed so much improvement. The radiologist was shocked.
D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 110/75]
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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]
Karl This is so awesome!
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Awesome, this is such good
Awesome, this is such good news for all of us in the MSi community. It also gives me a little boost in my confidence on my CAPi. Yeah!
MS since 2001, Rebif 3 last years, Doxy 200mg, azith MWF, NACi 600mg, B12, Bcomplex, multi vit, quercetin, Vit D, Omega 3s, charcoal
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MSi since 2001, Rebif 3 last years, Doxy 200mg, azith MWF, Flagyli pulse #2, NAC 600mg, B12, Bcomplex, multi vit, quercetin, Vit D, Omega 3s, charcoal, chitosan. No Dr. oversight - Going it solo
Karl This is great! I'm
Karl
This is great! I'm glad you are getting the chance to open eyes wide shut..Keep up the good work
Karl, fantastic! I envy
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 48 pulses NC USA
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PPMSi EDSSi 6.7 at beginning - now 1. Began CAPi Sept, 2004 with Rifampin 150 mg bidi, Doxyi 100 mg bidi, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 56 pulses LDNi Rifampin 8/08-1/09 again. Finish abxi 1/11
Karl, the competition is
Karl, the competition is going to be tough, with Joyce and Daisy around and Rica's Richard in the background, but I would hereby like to nominate Alyson as "Caregiver of the Year" because she will have helped so many other people with MSi besides yourself.........Sarah
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Holy Cow!!! Karl & Alyson,
Holy Cow!!!
Karl & Alyson, this is soo amazing on so many levels. A seed is planted, I am praising God. This site was my answer to prayers.
GOOOO MADcapers! we ROCK!
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, 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, 1-3-08 5th pulse 1 X 375 mg 4day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT peri-M, NAC 3 gm,Full CAP 6-2-07, all supplementsi+Sea Kelp, Inositol, Chitosan, L lysine Pulse#18 3-29-09 1gm Flagyli/day-4 days.We do, indeed,
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 48 pulses NC USA
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PPMSi EDSSi 6.7 at beginning - now 1. Began CAPi Sept, 2004 with Rifampin 150 mg bidi, Doxyi 100 mg bidi, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 56 pulses LDNi Rifampin 8/08-1/09 again. Finish abxi 1/11
Karl and Alyson-
Karl and Alyson- Congratulations on this milestone! Thanks for sharing your story in a public forum. It has helped me tremendously and probably many others as well!
Just wondering if your neuroi had any insight into the headache/spiking pain youo have been experiencing?
Daisy-Caregiver- Balo's Concentric Sclerosis. CAPi 5/07. Minoi 100 BIDi, Roxy 300 BIDi, Rifampin 600 QDi, Bactrim DS BID,
Diflucan,Novantrone,Doxyi,Azi___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Hello everyone, Thank you
Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/1/06.
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Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi, 23+lesions, 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/06
Karl, I'm a little late to
Karl,
I'm a little late to the party here, but this is indeed excellent news. Congrats!!!
On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
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Treatment for Rosaceai
Karl- this is great news for
Karl- this is great news for you personally, lack of new lesions so unexpected in the "standard course of the disease," and for the rather touching scene of your neurologists frank and willing statement to you. David's Damascene metaphor has been around since an earlier thread of his on medical convention, and I was reminded of that time a few years ago when so few were here trying to make headway in the MSi community. Doctors, like many of us, need to see the results unequivocably in front of them to step out of the shadow of the sword of convention, and this one is a true scientist who can look at his evidence. Bravo to you for your persistance and bravo to him for his moving ahead and taking action.
I might add, Bravo/Brava to all of you with MS who have taken your treatment choices into your own hands and are generating the N=1 experiments that will, one by one, get your doctors attention. The tidal shift in medicine that Dr. Stratton has spoken of, and David Wheldoni as well, will come about not only from the Vanderbilt MS studies getting published eventually, but by the pre-existing groundswell of well, previously sick people. Well against all the odds. Or perhaps well, and a little bit odd! For who else would throw themselves into such a protocol except those a willing to be at the bleeding edge.
CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3
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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
Actually Jim, from what I've
Actually Jim, from what I've been told there are no odds for getting well from ppmsi or even better. The odds are 0. So I'm a conundrum already (or they'll change my diagnosis to fit their odds).
PPMS-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.
As that makes two of us are
As that makes two of us are we a conundra?
Change diagnosis to fit? I my view all the MSi categories are only fictional labels - the medics just didn't join up the dots and spot the RR bit when it was happening to us. Mind you I am thankful that I wasn't ever offered the standard 'treatment'.
New Forest, UK. Progressive MSi dxi 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 #23...I can because I think I can.
And the collective is
And the collective is called...? A flock of conundra? A puzzle of conundra? No, I've got it, a consternation of conundra!
CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3
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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
And this makes three! Last
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 48 pulses NC USA
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PPMSi EDSSi 6.7 at beginning - now 1. Began CAPi Sept, 2004 with Rifampin 150 mg bidi, Doxyi 100 mg bidi, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 56 pulses LDNi Rifampin 8/08-1/09 again. Finish abxi 1/11
The one clear difference is
The one clear difference is that it has been proven in the last 4 years that medications for the other kinds of msi are totally ineffective with ppmsi. The medical establishment thinks that is because ppms is not caused by inflammationi but by damage to the myelini sheaths. And that is what has prevented them from saying that we've had rr all along and has therefore made it somewhat easier to get a doc to prescribe this protocol. Of course, with the cpni theory, whether we've had ms all along is irrelevant. But how we respond to even this treatment may be different which is why I ask, is there even a hint of statistics for the length of time for recovery from ppms?
PPMS-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.
Rica, no more tap dancing?
Rica, no more tap dancing? I've been practicing!
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.
But is there any place
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 48 pulses NC USA
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PPMSi EDSSi 6.7 at beginning - now 1. Began CAPi Sept, 2004 with Rifampin 150 mg bidi, Doxyi 100 mg bidi, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 56 pulses LDNi Rifampin 8/08-1/09 again. Finish abxi 1/11
Nancy, after here:
Nancy, after here: "Eventually we will raise our voices louder than those and will limp together onto the stage with Sarah and David and Karl and Alyson and Daisy and her husband and ...." I think Rica meant to go on and say "......we will all do a tap dance routine together, with nobody falling off stage."
So you nd Sid must come and join in!............Sarah
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Cute, Sarah! And, yes,
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 48 pulses NC USA
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PPMSi EDSSi 6.7 at beginning - now 1. Began CAPi Sept, 2004 with Rifampin 150 mg bidi, Doxyi 100 mg bidi, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 56 pulses LDNi Rifampin 8/08-1/09 again. Finish abxi 1/11
Hey guys, maybe we could
Hey guys, maybe we could say that one of these days the conventional understanding of MSi will move out of the con-umbra and into the light.
Tina-MS 37 years;EDSSi 4.5
1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; NACi 2000 mg daily
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Tina-MSi 37 years;EDSSi 4.5 1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.
ooooh. PPMS-misdiagnosed
ooooh.
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.
Again,
Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/1/06.
___________________________________________________________
Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi, 23+lesions, 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/06
lol, you all are
lol, you all are funny.
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, 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, 1-3-08 5th pulse 1 X 375 mg 4day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT peri-M, NAC 3 gm,Full CAP 6-2-07, all supplementsi+Sea Kelp, Inositol, Chitosan, L lysine Pulse#18 3-29-09 1gm Flagyli/day-4 days.Thanks so much Karl for
Thanks so much Karl for sharing the details so vividly. A joy for you and a joy to read!
Louise
CFSi/ME.CPni positive.Bb positive.
Started 6/24/07WheldonCAP.
Doxyi, Roxi, Tinii pulse #4 currently in progress.
Cholestyramine 1 packet at Bedtime for die-off symptoms and Porphoria sx of Fatigue, Brainfog, mood.
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CFSi/FMSi 20+yrs/ CPn pos Bb pos/CAPstart 6-21-07/Doxi,Clarithro,Tinii/11-22-07 Cholestyramine HS PRNx7days for porphyrin reduction/ 5-08 BHRT/ Progressed to HD D3-10,000IU /Iodoral 25mg/ 2-4-09 Intermittent CAP At20MonthsWheldonCAP/2-17-09 LDN4.5mgForCFS