You're all against me...but I'm encouraged by that

A full week after pulse nine and no physical symptoms of a reaction at all, but starting Thursday, a creeping sense of unease began which by this morning had blossomed into full-blown paranoia.  I slept through the night most of this week so I didn't get my middle of the night dose of charcoal.  I guess I'll have to start setting an alarm to wake me up in time to take it. 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazole completed 6/7/2008.

Comments

The one thing that truly

The one thing that truly amazes me about being on CAPi, other than the fact that just when you have real brain problems you find you need to become a semi-pro Pharmacist, is the sudden realisation of what certain foods actually do to your body.

Prior to CAP you chuck any old rubbish down without a second thought. OK, maybe the odd thing gives you indigestion so you take an antacid and get on with it but other than that you don't give it a thought.

The medical profession go on about eating less red meat but most people don't react to it so just carry on. We on the other hand see the effects pretty quickly. Maybe we should all be employed as dieticians.

My big problem at the moment is chocolate. I love the stuff but it bungs me up like concrete. I can take all the probiotics and Chlorella I like but a bar of Cadbury's and I'm in trouble. Without chocolate and I'm as regular as clockwork. Soooo annoying.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAP 20th April 2008.

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

"My big problem at the

"My big problem at the moment is chocolate. I love the stuff but it bungs me up like concrete. I can take all the probiotics and Chlorella I like but a bar of Cadbury's and I'm in trouble. Without chocolate and I'm as regular as clockwork."

Maybe you could try one of those chocolate flavored laxatives. 

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazole completed 6/7/2008.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

 HD- you sir are bad (in

 HD- you sir are bad (in the best way). 

Andesine - sorry but I had to laugh at that one. 

Daisy - Husband on CAPi 5/07.   Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-20, Minocycline,  Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

 Red I checked out the site

 Red I checked out the site you suggested and decided to see if the manufacturer had a site and they do. (second link)

 http://www.vitacost.com/NSI-GliSODin-SOD-The-Antioxidant-Catalyst

US $15.99

 http://www.gonsi.com/products/product-results.cfm/subcat-3861 Your Price:$15.99

I googled and found that one can buy it direct from NSI at the same price. 

 As a result of visiting that NSI site I am now I am captivated by all these neutraceuticals and realize that there must be an ocean of information on these energy and anti-aging substances.  How to know?     Anyone have any really up to date resources in print that they would recommend?  Red, have you done any nerdy reading on some of these neutraceuticals?  

Just fishing for information as I ramp up my activity level, made possible by my first year on Wheldon CAP, I am on the 3 to 5 year plan and not fooled by my current progress particularly given that Bb has also taken up residence in me along with CPni.  Activity is the order per MD as I need to start building bone as opposed to wasting it!  If I had been asked to do this last year this time I would have said bluntly no way, I have not enough energy to walk a flight of stairs without mustering all my willpower.

HD how are you doing as post pulse #9 continues?  I am missing you on your blog here!  Are you away on business and too busy to chime in I hope?

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

  • CAPi(TiniOnly): 06/07-02/09 for CFSi
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Hi Louise, Too funny!   I

Hi Louise,

Too funny!  

I take 1,000 mg (2x500mg) in the morning, and the only brand I've ever tried is this one (I believe Jim posted months ago that he tried some tablet form and didn't find them as effective):

http://www.vitacost.com/NSI-GliSODin-SOD-The-Antioxidant-Catalyst?csrc=GPF-835003003570

FYI, I believe the GliSODin probably works through decreasing the reactive oxygen species generated in large quantities by the secondary porphyra rather than by decreasing the secondary porphyriai itself, but it seems to help cut the vicious cycle of continuing problems with prophyria for me anyhow. 

FYI, I take the GliSODin in the morning because it makes me kind of hyper and can cause sleep problems if I take it too late in the day.  

Hope it works for you.   Let us know how it goes...

Hang in there...

 

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

Treatment for Rosaceai

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

By the way, hd, I'm against

By the way, hd, I'm against you.  I'm certain you're responsible for the heat, the bad traffic, the fact that we haven't received our stimulus check yet.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

The heat I'll take

The heat I'll take responsibility for, but not the humidity.

The traffic I'll take responsibility for, but not the crazy drivers.

And I'm typing up the stimulus checks as fast as my brain fogged fingers will let me. 

Seriously, if you got your refund by direct deposit (and didn't have return preparation fees deducted and didn't take a refund anticipation loan), you should have already received the stimulus payment by direct deposit.  Also, if you filed for an extension and didn't get your return in until after April 15, you will get your check later than those who filed early.  If you're expecting a paper check, they are being sent out based on the Social Security number of the first person listed on Form 1040.  You can see the schedule at: http://www.irs.gov/irs/article/0,,id=180250,00.html  If you get to mid-July and still haven't received it, you can call the IRS' stimulus payment hotline toll-free at 1-866-234-2942.  Expect a significant wait if you do have to call; IRS processed more returns this year than ever before and they did it with a staff that is 30% smaller than it was just a decade ago.

CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazole completed 6/7/2008.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

HI Red, I now remember

HI Red, I now remember taking a casual look at GliSODin, seeing some connection to gluten and looking the other way.  However I have had some testing done this past winter and I am at least not actively reactive to gluten just now anyway.  

Could you share what you use for amounts when you take it?  I know it is probably here somewhere but my luck at searching is limited.   I would like to pick up a small bottle at the health food store and try it the next time I start to get that old irritated at nothing of consequence feeling. 

When I look back in my life and that emotional presentation I can see I must have had CPni for some good long time!  I do so enjoy your posts.   I am doing the D3 approach to bone health ( and whatever else it is good for Wink and starting to walk and bike in my long driveway (a round trip is almost 1500 ft). One year into the 5 year plan now.

HD, now that I have kidnapped your blog, I want to say glad you are getting that adverse feedback that makes you a stronger believer in your program.  Hope you are coping well!  I do so enjoy our discussions too. 

And taking the chance that I will evoke your irritability and negativity, I will take this opportunity to diagree and say you got it wrong, (we are all)  I am FOR you! (And stand corrected Smile).

Cheers to all of us that are on or about the time of our first anniversary on CAPi!

Blessings,

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

  • CAPi(TiniOnly): 06/07-02/09 for CFSi
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

P.S.  The only thing more

P.S.  The only thing more sure than red meat to bring on a sudden attack of porphyriai for me is cabbage.   Don't think that I haven't had a hankering for a big vat of slaw for quite some time, but even I'm a little afraid to go there...

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

Treatment for Rosaceai

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Too funny, Joyce! I've

Too funny, Joyce!

I've been pretty much de-Bubba-fied after living in SoCal for @ 18 years, but as you know, you can take the boy out of the south, but not the south out the boy. Last Wednesday the lady who runs the cafeteria where I work made her famous Kalbi Short Ribs (Korean BBQ - not exactly pulled pork, but beggers can't be choosers!).

Well, I started salivating (yes, much like Cujo), and next thing you know, I made history of a big plate of that wonderful stuff. If I could only have had a long-necked Bud and some Brunswick Stew too, I would have been happier than a pig in knee deep mud!

Well, needless to say, I, and everyone around me, paid for it all Thursday and Friday. I had a big fat headache, lots of congestion and other aches and pains, and I was totally pissed with everyone. You know the story. By Friday, I realized it really wasn't that everyone around me was completely ignorant, it was ME (OK, many - alright at least some - really are kind of stupid! Bless their ignorant hearts...).Laughing

Anyway, after just trying to ride it out, I finally took a couple of GliSODin (thanks John for reminding me about how well these jewels work for me!) on Sat morning and my headache and other symptoms faded away quickly. Porphyriai's a pain in the neck. And when I'm porphyric, I'm kind of a pain in the neck too..Wink

Were those short ribs worth it? Probably not, but they certainly were GOOD! Will I do it again? Maybe not soon. Or maybe I'll just take a couple of GliSODin chasers with a big swill of Bud after downing another big plate of Kalbi! Guys will be guys, after all.

Hope Steve is feeling better...

On Combined Antibiotic Protocol for Cpn in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Treatment for Rosaceai

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

ohh my goodness Joyce, the

ohh my goodness Joyce, the visual on Steve's driving!!  I know it was a little scary, but reading about it with all the other funny comments, finally I LOL. 

Hey HD, if you are popping all that charcoal, drink lots of water or you will be burping coal dust, lol  It gets up your nose!

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#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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<

hd,  My husband Steve is an

hd,  My husband Steve is an Italian upstate New Yorker who has been in the Dallas area for about 25 years.  He's so "bubba-fied," he ate 2 steaks Sunday afternoon along with his double helping of fried okra.  After a better than usual weekend, he's paying the porphyriai piper today.  We carpool to work, and this morning, his driving truly terrified me---fast, aggressive, all over the road, and the angry look on his face was enough to squash any joy out of my day.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

HD, luckily (sic) I have

HD, luckily (sic) I have always had, and still get reactions to Flagyl, but even if I hadn't the change in the colour of my urine would have convinced me that something was happening.   Over the months this has improved, but there is still a marked difference between flagyl days and non flagyl days.

I on the other hand have not suffered from paranoia, which is just as well as Hamish makes up for both of us...

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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

 More accurately: the

 More accurately: the perfectly paranoid pitter patter of porphyriai.

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 300mg BIDi Roxithromycin, Bactrim DS 2x/day, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

hdwhit, I always love

hdwhit, I always love reading your titles of your threads

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli, tinii<

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

Ah - is that the pitter

Ah - is that the pitter patter of porphyriai's ugly feet I hear ? 

Daisy - Husband on CAPi 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Almost certainly.   And to

Almost certainly.  

And to make matters worse, I had beef for dinner. 

Good thing I can go back to bed after church tomorrow, pull the covers over my head and pop charcoal capsules like they're Smarties.

Still, I've been asking for something to happen to confirm that the metronidazole was still killing something for the last couple of months and I got it.  As bad as it is wanting to lash out at everyone around me, it gives me encouragement that I'm not wasting my time.   

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazole completed 6/7/2008.

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

 "I had beef for dinner." 

 "I had beef for dinner."  - he he - you're definitely a Texan.

HD - seriously add the smarties to the charcoal - it'll break the porphyriai faster.   

Daisy - Husband on CAPi 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012.