I never wanted this day to ever come to pass, but I have to get ready because I know that before long, I'm going to be in a panic because I didn't get ready in time. Maybe it's already too late, I don't know, but I'm at least trying to find out now. So what am I talking about? Well, let me tell you...
...over the last 3-1/2 years, I've been on the CAPi, fairly consistently, almost always taking drugs on time, never skimping out, never expirimenting with dosage. It has almost always been...200mg Doxycyline 7 days/week, 250mg Azithromycin MWF, 150mgx2/day Rifampin 7 days/week, and at least 1200mg NAC but eventually for the last couple of years, 2400mg NAC 7 days/week. I've also worked my way up to 10,000 IU of Vitamin D3 and have been taking the supplementsi daily the entire time. I started taking 250mgx3/day Amoxycyllin in July or so this year.
I've also done trials of tocotrienols (an alternative vitamin E that has activity against Cpni) , Lauricidin (an antimicrobial substance), Calcium Pyruvate, and INHi 300mg/day at various times. I have found that those all had an effect but in the interests of being able to continue with having a life where I could actually care for myself, I stopped them after a time. Well, try as I might, I know that time is rapidly approaching a point where I won't be able to do it anymore.
Will it be 3, 6, 12 months or longer, who can tell for sure? There are days when I feel better then others, days where I feel like I'm at my concistent level, doing well enough to keep on the way I have, while other days it's a struggle to do everyday things and sometimes I simply can't do everything.
I think I need to ask about my options. I don't know any of them, other then getting a disability rating from Social Security but I've heard that takes eons to obtain. I've already got a disabled parking tag so that I don't get stuck in the parking abyss that I find at most places I go to and can park close enough to get in and get out as necessary. But even having that is only one small step towards what I know I'll eventually need.
So, that's about it. Feel free to write back here or by PM if you have any information or suggestions. Thanks for any help!
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best, John
RRMSii/EDSSii 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
metronidazoleii 3x400mg/day then 3x500mg/day
John, I think most of us
John, I think most of us have had to think about this same thing, due to our close encounters with cpni. I actually think it's a healthy thing to do, rather than be blindsided by whatever ills befall us and have to make uninformed decisions under undue pressure. The simple things are a living will and a determination of who you can trust to carry out your medical wishes in the manner in which you yourself would.
When I confronted these issues, I realized I would not trust my best friend to make informed decisions due to her personal prejudices in some matters. I would, however, trust someone who's been surprisingly supportive through this whole ordeal, who is also an only child and who is an optimistic realist. He would be compassionate but honest in his assessment of my situation and my intentions for my medical care. He would also not milk my resources dry for his own purposes.
I'd say put your affairs in order so as not to worry about them unduly, but get thee to Sriram's practice, posthaste.
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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
I know how hard these
I know how hard these decisions are, but sensible and we all hope temporary. It is better to have them in time than too late.
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
John, aside from Mack's
John, aside from Mack's great advice, here's something you haven't done: follow through on the recent research on CCSVI (see forum posted by Red). My husband just sent me this with the advice to pass it on to my neurologist:
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now (3/10) doing 100 doxyi; 125mg. azith; pulsing tin
Thanks Mac
Thanks Mac
My reply to the suggestion from you or from anyone else about going and seeing Sriram and most doctors is this. Why? What do these doctors know that nobody else knows that could possibility benefit me? I've already been following the protocol devised by him and his peer, Dr. Stratton, as well as Dr. Wheldon for 3-1/2 years. What secret magic do they have that they hide only from those special cases like me that come along? I'm definitely not thinking that Dr. Sriram has any more information then I've already been given. He doesn't have a magic wand, which really sucks because I could use one. So tell me what he's going to do that nobody else has or can do that makes it necessary to travel down to see him? Making that trip will not by any stretch of the imagination be easy.
At this point, I don't feel like anything most doctors can or will do will make any positive impact in my life. It hasn't so far, I've only gotten worse over time. I know I don't know everything but I just need to know what reason I should give this yet another chance? Should I just put blind faith into him? Is that what I need to do because I have nothing else and you've given me nothing else.
I've tried for years, following the protocolsi devised by Dr. Stratton and Dr. Wheldon and here I am, worse then I've ever been and getting worse every day.
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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
Well
Well Arttile
Ive made the decision that I'm going to try to reach Dr. Dake at Stanford about CCSVI. I've already tried to reach his assistant, Alex, but that was a week ago. With the holidays, it may make it difficult at best to reach anyone but I'll keep trying.
I picked Dr. Dake because I have family in California who will help me to get around town while I'm out there. Of course, I've also read about some of his patients so I know he can do the Liberation treatment.
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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
More information about what
More information about what I'm doing. I've gotten a test scheduled for next week, Tuesday, to have an MRV procedure done at my local hospital. I think that radiologists and doctors here will likely miss the stenosis so I plan to send the test results out to Dr. Dake's office, when I reach him.
I've asked about having the doppler sonogram done also but haven't gotten those tests written yet. I may just wait for Dr. Dake to do it since he'll likely do it anyway, in order to have first understanding of what is needed.
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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
JOHN keep us posted about
JOHN
keep us posted about your SSCVI test results. I really wonder whether there would be any difference between CAPi responsive and unresponsive MSi patients with regard to SSCVI.
yilmaz
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KEREM'S TAKECARER;
Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.
Hi John, Definitely keep
Hi John,
Definitely keep us posted. We're all pulling for you...
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Treatment for Rosaceai
John, Sriram knows more than
John, Sriram knows more than how to type up a protocol. He is one of the few on the cutting edge of the research and, therefore, has a vast amount of collected KNOWLEDGE, about this disease, particularly as it relates to MSi. (You should probably discuss this privately with Ken and Kim, who have been there and have experienced it firsthand.) The protocol is not the sum total of his work! Today, he adjusts the treatment and sometimes doesn't even use the protocol, as we know it.
I am reminded, by your question, of college professors who lectured by reading from a page (or pages) they'd already passed out to the class to read. I hated these people. One could assume they knew nothing more about their respective fields because they shared no more knowledge than what was already on the page.
Then, there were the great ones. They passed out the pages, or assigned reading as 'homework', and they talked and rambled and drew on years of knowledge and experience, to the point you just hated for the hour to end.
I'd say Sriram has that kind of vast knowledge, and fortunately for those of us with an MS diagnosis, he specializes in MS.
P.S. If you're going to California, is it possible for you to also see Dr. Powell in Sacramento, while you're out there? At least you'd have a wealth of input to mull over.
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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
Mac
Mac
First, surely Dr. Sriram has far more knowledge then is incapsulated in the protocol and research he and Dr. Stratton did at Vanderbilt. No disagreement with that. Still, am I such an unusual case as to require special contact with Dr. Sriram? Is the situation I'm dealing with that unusual? Hmmm...
Yes, Dr. Powell has been something I've been considering doing. I have yet to reach Dr. Dake but I do intend to contact Dr. Powell also. If I can, I would like to contact both and see what they tell me. Dr. Dake, to review the venograms I'm going to have this week and give his opinion of whether I have CCSVI, and Dr. Powell, to talk to and discuss something he may have a different take on, which is something that I should do with Dr. Sriram. Dr. Powell is a step removed from the CAP though, but involved in treating people dealing with what we deal with here. It would just be another way of looking at it, maybe.
Anyway, I emailed Dr. Dake and his assistant Alex but have heard nothing from either one. I'll be sending Dr. Powell an email soon.
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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
John~ Some think that
John~ Some think that HHV-6 plays a role in MSi. Have you been tested for that ? (use Focus Diagnostics Lab). Since you've treated extensively with antibioticsi for Cpni and have not seen improvements but have gotten worse, perhaps you could look at this possibility.
http://www.hhv-6foundation.org/hhv6_ms.html
Best, Timaca
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Dx lyme disease 3/05. Dx HHV-6, EBVi, VZV, and HSV1 6/07. Dx with CPni 5/08 and enterovirus 2/09. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyi bidi for Cpn, acyclovir for viruses, oxymatrine for enterovirus
my very best wishes for you
my very best wishes for you John,
I hope you get into one of these docs who are in the know. I am going to get tested for the XMRV retrovirus in December. It may just be another piece in the puzzle of Me. Could there be some more viral components that are contributing to your health worsening?
I think katman & sarah's journeys are great examples for us all as to how much time & what can go sideways as we plod along toward the light.
God speed,
peace
r
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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<
John, I think you have many
John, I think you have many options still waiting for further investigation. I found myself not having much improvements with the capi and decided it was time to see Dr.Powell. He tought me how viral infectionsi and heavy metals can make the treatment less effective. My treatment was geared to my onset of issues and I am seeing some improvements. If you have heavy metal poisoning your killer cells are not functioning to full capacity, which can make the antibioticsi less effective to treatment. Also, viral components can cause some issues with treatment.
I wish you all the best.
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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell. Nitro patch, restore gut, 6000 D3, supplementsi, T3, , 1/13/10 biofilm protocol, 1/10 Amoxicillini 500mgs. 1/23 Azith. MWF. Chelation for heavy metal
John, I think you have many
John, I think you have many options still waiting for further investigation. I found myself not having much improvements with the capi and decided it was time to see Dr.Powell. He tought me how viral infectionsi and heavy metals can make the treatment less effective. My treatment was geared to my onset of issues and I am seeing some improvements. If you have heavy metal poisoning your killer cells are not functioning to full capacity, which can make the antibioticsi less effective to treatment. Also, viral components can cause some issues with treatment.
I wish you all the best.
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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell. Nitro patch, restore gut, 6000 D3, supplementsi, T3, , 1/13/10 biofilm protocol, 1/10 Amoxicillini 500mgs. 1/23 Azith. MWF. Chelation for heavy metal