I'm stepping off

I have been more debilitated, for a longer continual period of time than ever in my life, since starting the CAPi.

I have been bed ridden almost completely for 6 weeks. I am in pain, I am weak, I throw up almost every day. I finally learn which anti-porphyric and endotoxini measures work best for what, and how and when to take them, when the very measures that are supposed to help me end up making me sicker. I do all the things right so that I don't get side effects -- from anything -- and I am run over and flattened. I should not feel this bad, I'm doing everything not to.

I don't have it in me to keep this up anymore. I have to get back to work, to life, to being upright and mobile. The season is changing outside my window and all I can do is ask is what does it feel like out there. I lay in bed and monitor the blackberry -- texting messages to my partner so he can respond to clients on my behalf. I am pretending to work. I haven't prepared a meal, done a load of laundry or put away a dish in almost 2 months. My kids and grandkids fly out to visit, the first time meeting my new grand daughter, and I am in bed for more than half the visit and propped on a lounge chair the other half, all wrapped in blankets with a pale at the ready... I did NOTHING with them. For our anniversary they brought home take out from the place we were planning to go to. I threw it up. *sigh*

I think this isn't working quite how it's supposed to for me. I've done it all right but it's been too unrelentingly miserable. The effects from the ABXi, and the side effects from the moppers are too much. I'm not sure what to do but I can't keep going this way.

Comments

If you suffer from IBSi,

If you suffer from IBSi, take care with the psyllium, only use a tea spoon at a time or you will know all about it.   Also be careful with oregano oil.   From my experience this gets better in time but act cautiously.

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

Clean up your body with

Clean up your body with Pysylium and what ever other cleanses. Your stomach has told you it is full and cramped!!!  It is the most vital thing we all have to do:  throw away toxins and illneses!

Darling, you have the right to throw the white towel, it is good to do it too!

You have done your best and cannot blame your self nor push your self over the human limits!  Relax, think and re-think!

But, do not give up!  that you can't do.  Take your time to try other things; to change food or supplementsi and even, your time to cope - as a great friend here has taught me to- but this is not loosing the war; it is just a battle and you have the right to take a rest.  You cannot give up and we won't let you do it.  Yes it is hard and none sense, but that is the life you are living and it is worthy, you know it!!!!

Smile, try it.  Smile and think of how good you are going to feel and how wonderful your days are going to be.   This treatment you have done is going to be paid off, it is not for today, it is for a better future, and you know it!

Just have hope! It is all that is needed!

  May your day be good and your night better! God bless you.

God bless you all.

MariaPatri - living in a rollercoaster! (In Orlando, Fl).

Thyroiditis, sinus infection, heart, muscles and joints. 

The prednisone and tramadol

The prednisone and tramadol are helping. I am still not well though even after stopping everything. Chris, I appreciate you sharing that, it gives me some hope.

This has all given me some perspective. Firstly, I think it's VERY important to point out that I am adrenal compromised to begin with and I think that has a large role in what I've been going through. My story should not put others off. The pain of Addison's can be intense and this is why I am taking Tramadol. It's the least brain-fogging pain drug out there, it does only "okay" but the trade off (benefit) is that I am awake and alert while I take it. The prednisone and tramadol are giving me some QoL right now.

I am in bed today and most of last week but was up on the weekend and yesterday had a perfectly normal and active day. I did mountains of laundry, cleaned rooms, baked and puttered. I was exhausted last night but HAPPY. Today I feel like I drank too much alcohol the night before (it's been years since I drank beause of my rosaceai, but this feeling is that raw, less the exploding head).

I have a req. to get a full work up but have been unable to get myself to the lab in the AM. I will need to this week because my big appointment in Vancouver is next week.

My teeth look like I'm an extra in a dark ages movie. They went dark and moldy looking almost overnight. I was quite distressed about that. I gargled with an iodine tincture for the yeast and what I split into the sink was all black. Tim's was normal color so I'm trying to figure what in my chemistry is responsible for that. I'm getting them cleaned tomorrow, the dentist is confident that will bring them back to what they were before.

My shoulders and arms are tired so I'll sign off. Thank you all so very much for the well wishes and greatly helpful posts. I benefit so much for everything you do.

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

I will add my two cents and

I will add my two cents and say that I had horrific die off from Doxyi and Zithi and was in the hospital weekly during the first 6 months. At times I just went back to keeping up with the NACi and supplementsi and Zithromax (250mgMWF). I stayed on the Zith for a few months and felt increasingly better, then added the Doxy in SLOWLY at half dose and then full dose a few weeks later. At 1 1/2 years later I am 90% well. The slow approach WORKS. I was nearly bedridden before and now am in the gym 3-4 days a week with no fatigue afterwards. Some mild cognitive things are still there, but the body feels well again. Please consider this and go slow. But do not give up : ) Chris
CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.

Sorry you are so sick -

Sorry you are so sick - take care

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Paula, low dose prednisone

Paula, low dose prednisone (5-10mg) is used by a number of our members to combat inflammationi, at these low doses there is some evidence that it potentiates the antibioticsi slightly.   I don't know much about tramadol other than it is a painkiller for nerve pain.   Prednisone should be helpful in this situation so I can't see how it can be making things worse for Corinna.

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

Michelle, can you give a

Michelle, can you give a link to a study that shows low dose prednisone potentiates antibiotic effect on bacteria? This seems counterintuitive to me. But, hey, I am often wrong. I can speculate that a patient with LOW cortisol levels might need this, otherwise not a good idea and could make things worse over time. So I would love to see some support and details on your suggestion.

 Thanks,

Paula

Paula Carnes

Try this thread

Try this thread here:

http://www.cpnhelp.org/glucocorticoids_increase_< 

though to be honest I think the results in that paper don't have much clinical significance for us. In particular they found glucocorticoids increased abxi activity when the abxi was given in sub-MIC concentrations (MIC = Minimum inhibitory concentration). However in dosages larger than the MIC, glucocorticoids had no effect on abx activity.

Now in CAPi we use dosages larger than the MIC, so one shouldn't expect any major beneficial effect of glucocorticoids on abx activity.

Hunter: Don't think - experiment

Corinna, I am new here, so

Corinna, I am new here, so I may not know what I am talking about but...

 Have you explained why you are on prednisone and tramadol? Might these two drugs bear some significance in your difficulties?

Thanks for any input.

Paula Carnes

Paula Carnes

Thank you all so very very

Thank you all so very very much for your words of encouragement, support and advice. I was writing someone just moments ago that this is a bit new to me -- I'm so self-reliant in my day to day life and have only begun to learn how to ask for help, and be helped. Opening the door is scary, we open ourselves up and are vulnerable, but the experience has been so positive that I am stronger for it and I am enriched by it. I learn so much from all of you, your grace, your generosity, your support and encouragement are as important and healing to me as the CAPi is.

Words cannot adequately express what you all have given me. Thank you from the bottom of my heart.

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

Twick, This makes me

Twick, This makes me heartsick.  You've gotten some very good advice and a good demonstration of how much you are valued and cared for here.  Hope floats and so do CAPers, though some are known to make deep dives.

Steve's another "diver" who has resurfaced.  Last year was "Hell Year" for Steve (and me).  He had bad porphyriai that went untreated, unprevented, and flatly denied (by me).  He developed a very severe case of yeast overgrowth that took months to get under control.  Please stay on that Nystatin for at least 3 or 4 months, and start the WholeApproach anti-Candida protocol if you can tolerate it.  That protocol has kept Steve's yeast under control since he finished the Nystatin.  He can even use glucose now for porphyria with no problems.  Another thing that will soften your stool is a bit of apple pectin.  Here< is an excellent page for gut issues. 

It's heartening to read that you intend to stick with us and take a more reasonable stab at Cpni.  I hope you will keep up with your regular posting here while you recover, but if you take a break we'll understand (but miss you).

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. 

Corinna, really hope you

Corinna, really hope you feel much better very soon.

My best wishes for you and your family.

Maria

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid">i.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life

 Twickle you are not

 Twickle you are not alone, and thank goodness we have eachother to help us get the encouragement to continue the battle. I sometimes come to this site to cry out as well and just reading how horrible you are feeling, puts my emotions in check. Todybear is right ,your honesty encourages others. I know for myself, God gives me the strength to contine and your tears have touched me.  Take in the great advice by the elders and don't give up.

 I like the turtle, Speeedy. I'm looking for a horse clip. 

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

See Twickle, people care,

See Twickle, people care, your honestly encourages others on thier journey as well. Keep checking in with us all. We are a community that needs to see the lows and the highs. I know that you will have both, as will I. Blessings on you for this day.

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

I was going to post you a

I was going to post you a link to my blogs in the beginning but i started reading them and I couldnt stand it so If you want to, maybe you might search them and read a few of them and you can see how ill i was too ( exact same as you )and how much better I am now, might make you feel like its worth it. I was so sick from capi I was going to the emergency room, but... I didnt stop and didnt give up, so please dont ok?

 

 

 

 

 

&nbs

I was also very sick at

I was also very sick at first, die off can be really rough in the beginning. I think stopping at this point might be harmful, I wouldnt if i were you. Dicetel is a med that i took in the beginning- its for irritable bowel syndrome. I had to take that for a good few months before my stomach could hold itself down. Alot of the time we feel sick from the toxins in the gut caused by the gut upset. Dicetel simply stops the gut from spasming and the result of that in my case was not vomiting. Had i not had the dicetel in the beginning i would have also been vomiting every day. I also could barely pull myself out of bed. I really had to fight off the vomiting even with the dicetel, but again the dicetel managed to help me keep my stomach down. There were some days where i also had to take ativan as well because the spasms were so bad. Ativan is also helpful for the spasms but in some people can affect porpheria so its hard to say what is best for someone in that aspect. So yes,  it wasnt easy in the beginning for me either and again, I know that if I hadnt have had those meds I would have been with my head in the toilet. Dont give up, please try the dicetel... it will make a huge difference until you can wean yourself off it. Wishing you welll and dont give up.

 

 

 

 

 

 

&nbs

Hi Corinna,I don't think

Hi Corinna,

I don't think you should feel like a wimp at all.    I was a total wreck on just 4000iu of Vit D3 + the abxi, so I cannot imagine 10,000iu + abxi, particularly at such an early stage.  I'm thinking about adding the abx back in now, and I'm still nervous because of my previous experience (at the lower dose of Vit D3).  The secondary porphyriai this combo causes is not something to be underestimated.  

I thought you might be handling it better because of the cholestyramine, but now I can see this wasn't the case.  I'm sorry, I should have been more "vocal" in my caution.    But my hat goes off for your fortitude.   I know I could not have done the combo you just did.  As I said, I'm nervous about doing even now, but I won't give up the Vit D3 since I know it has antibacterial, antifungal and antiviral qualities.  It's like taking a fist full of antibiotics, antifungals and antivirals all in a few little pills. 

Since I know I'm infected with more than just Cpni, I think Vit D3 is an important part of returning myself to good health.  And, because I don't have a disease like those dealing with progressive forms of MS, I can afford to take the time to let the Vit D3 work its magic.  As we keep saying, this is not a race.   Whatever form of treatment you choose, it will likely take 3-5 years before you are done, and you cannot spend this entire treatment sick in bed...

The good news is the secondary porphyria will pass quickly with your break.   Hopefully then you will feel much, much better...

Hang in there...

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-

Twickle, to get the black

Twickle, to get the black marbles rolling, I take a lot of magnesium. I find it takes a day or so to really kick in. I gave up on charcoal because it stopped moveage completely. It sort of defeated the pupose since it kept the toxins hanging around for days. When I first started CAPi, I had not heard of cholestyramine. I had major vomitting problems. Now I can keep everything moving in the proper direction, although sluggishly. My stomach's behavior has been labeled "lazy stomach." I don't think our digestive systems are lazy. Some of our biochemical emotion centers are in our bowels, not all in the brain. The King James Bible says things like bowels of compassion and his bowels yearned for his son. If our bowels are suffering carrying around compacted toxins, no wonder we are unhappy in our brains.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Hey TP,I'm very much in the

Hey TP,
I'm very much in the same boat as you. Only I've been at this for 18 months. You think I'd have learnt by now!

IMHOi the weakness we experience is caused by adenal stress (though obviously things like porphyrins can stress the body). I've had overwhelming weakness these last couple of months - to the point that I was dreaming that I couldn't lift the duvet off myself because it was so heavy.

Also like me you've lost a lot of weight which again is a sign of adrenal stress. Finally yeast problems too can be caused by underfunctioning adrenals. I'm not saying you have anything wrong with your adrenals, just that you are clearly under more stress than your body can handle right now. The result (as it has been for me) is totaly misery.

I think backing off is a great idea. For you and me too. Its only when we are not under severe stress that we can look at things more objectively.

Hunter: Don't think - experiment

Corinna, I remember reading

Corinna, I remember reading your first blog when you described all the things that were wrong with you and thought then that you must have a heavy load of this nasty little bug.   It is tempting to plough on ahead when you realise that there may be a way out of feeling ill all the time, but Ella took six months to work up to a single tinidazole pill... and then another 4 month to work up to a full pulse.   It seems to take forever to see any results and even now she suffers new symptoms practically every pulse but going any faster would make it impossible to live independently and so she takes it step by step, does pulses when she feels up to it, and on occasion has taken a complete break  from all medication.

Once you feel more stable you will be able to see the wood from the trees and decided what is your way forward, but you know now what you are battling with and that is a good lesson learnt.   You know your enemy... 

I will continue to think of you and send you love and light and hope that in a couple of weeks time you will have come to a decision about what to do. 

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

I've read more and feel

I've read more and feel that going clean for a while is the way for me. I already feel better today for having taken nothing all day. I was able to get out of bed tonight and do some work and felt optimistic about participating with getting my garden ready for the winter this long weekend. There's hundreds of lavender to prune and many yards of mulch to put down. I made a promise to myself tonight that no matter what I will get outside everyday, even it's just to take my little dog to the corner of the street -- I think being cooped up in bed has really gotten me down. I read Red's treatment blog again and felt very encouraged that my emotional state is not just my own -- but to have it so early on is almost embarrassing -- you are all so brave and I feel like a wimp right now. But, we're different and I am comforted in the fact that there are folks that can take it on and push through while others must go slowly, even more slowly than one would consider effective. It's a new paradigm.

Thank you everyone for your pushes, your support, your encouragement and your very excellent words of wisdom -- I would be so lost without you all right now.

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

Hi Corinna!Gosh, I'm so

Hi Corinna!

Gosh, I'm so sorry to hear you're feeling so badly.  I was worried this would be the case.   You have been hitting the Vit D3 and abxi really hard.   I'm sure the fungal/yeast problem only compounds things so I've been even more worried since that showed up.

Take a look at my treatment blog starting @ month 17 here.   It's very similar to what you are mentioning:

http://www.cpnhelp.org/cpn_treatment_for_rosacea#comment-18679 <

I was ready to throw in the towel too.  After being on abxi for @ 11 months before starting Vit D3 and only doing 4000iu for 6 months, by month 18 I was an absolute mess, physically and mentally.   It built up continually over the 6 months I was adding in the 4000iu of Vit D3, until it was unbearable and I could no longer really function well either, and I was much, much better after the 11 months of abx to begin with!

I now realize I was suffering from huge amounts of secondary porphyriai.  When I mentioned to Dr S a few months later that I decided to switch from the abx + Vit D3 combo to just Vit D3 (+ NACi of course), he said (as he had said to me prior to starting the Vit D3) that Vit D3 seems to really cause the die off and secondary porphyria to ramp up greatly so he wasn't at all surprised.

Because I have continued to improve greatly on just the Vit D3, NAC and FIRi Sauna, and because you were doing pretty well up until you started the abx, it would be my best advice (and you know I have no medical background) to think about holding off on the abx, ramping back up on the Vit D3, NAC and FIR Sauna, and wait until you are much, much better before starting the abx again.   Hopefully at that time you won't have to worry so much about additional fungal/yeast problems, and god knows what other infectious problems you have going on.

Take a look at Dr Powell's discussion of the use of these other agents to get patients to the point where they are ready for CAPi here:

http://www.cpnhelp.org/comments_on_cap_variation<

I've been toying with going back on the abx lately.   I thought I'd give the Iodoral a good try first though to see if it can help take me to the next level first.   I'm hoping that these non abx agents will improve my health to the point that when I do add the abx back in, I won't experience nearly the troubles I did @ month 17...

Given what my family is now going through though, I realize just how important it is to enjoy every single day we are lucky enough get.   I like Dr Powell's cap variation because it seems to focus on getting people better quickly, with fewer side-effects so they can start enjoying life as it was meant to be enjoyed.  Just my thoughts, and frankly what I decided to do myself...

Please take care.  Take a break if you need it.   Drink plenty of water, and get yourself well enough to get back on treatment, whatever form of treatment you choose!


 

 

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-

Thanks Dan.  It seems so

Thanks Dan. 

It seems so long ago that I read your blog!  This time there will be a comprehension that I was not capable previously. I will take what you suggest very much to heart, you've been my role model in this and, whether you knew it or not, a bit of a mentor too.

I'm just finished wrapping up some urgent work and am ready to pack it in. I'll bring my laptop to bed so I can read the links you included.

I'll let you know how I do! Smile

 

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

So sorry to hear you have

So sorry to hear you have had it so totally rough Corinna. Things sound beyond horrid for you. I don't recall you ever letting on that things were so overwhelmingly bad. To say it bluntly ... I was quite shocked, hurt for you and also very concerned . You are one smart lady so I know you will get things figured out for yourself. Your Tim sounds like a wonderful man. The folks here have given you very helpful suggestions as usual. I agree ... if I get into deep troubles I think I would try to see Dr. Powell.  

You know that I am a newbie here but I had 3 1/2 years of experience on another CAPi protocol. So from it I am gun shy. I feel I made a huge leap when I recently took a whole tablet of Bactrim DS for a bladder infection. It is so odd to me that it hasn't been as bad as the tiny doses of antibioticsi I use to take. Which brings me to say that during those times I never was as bad as you are ... But I had the worst time of my life many days and nights. I know that feeling of "I have had enough", "I can't take no more." I think you are wise to take a break and form a new plan of action. It will do you a world of good. You cannot ruin your health while trying to gain it.

For me it is like a war. We fight until we are battle fatigued. Then we need to rest and recooperate. That does not mean the war is won or we quit. Every warrior needs to recharge/regroup before the next battle. You have killed many enemies this first long battle. Once you rest, plan your new strategy maybe you can kill the enemy a little slower this time.

The main reason I am going very slow and with caution is I have been told most probably my liver is infected. Sounds like you too. That means detox measures are all the more critical. Constipation for example has made me very ill at times so now I avoid it with purpose. Not to say with brain fog that I have not messed up. <wink> I hope you can keep your plumbing running on a regular basis. That alone will make a world of difference for you. It is one measure I cannot mess up on without paying a high price.

Well, I didn't write because I have any great suggestions. I just wanted to tell you that I care. I feel your pain. I trust you will find your way. I appreciate all the helpful tips you have shared with me since I came here. I would really miss you if you weren't around. So glad you will stick around. You seem like a very nice person Corinna. Feel better soon. 

 I hate these teeny tiny monsters in us! But I won't get mad ... I'm going to get even instead.   Wink  MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Miying Meng, you are an

Miying Meng, you are an absolute sweet heart!  Thank you for your very kind note and for your rally call with the warriors analogy -- that was very helpful.  I'll keep up with your progress, you have certainly fought some hard battles already and you have great courage. You are a real inspiration. Thank you for that.

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

Corinna, please stay with

Corinna, please stay with us, or come back to us after your break. I fully understand the hell you have been going through. Four years ago I began my version and started flagyli just where you are now. I sank like a rock with cockleburrs. We will be waiting for you. When your head clears some, you may feel otherwise. Nine or ten months later I had a great time of realization that EVERTHING WAS BETTER and that began my two steps forward and one back which still continues. It's really, really hard and long, but worth it.

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica,I didn't mean to be

Hi Rica,

I didn't mean to be melodramatic. I am just stepping off for a bit, I am overwhelmed.  For the past week the tears have come quite easily -- great shaking sobs, something I didn't think I was all that prone too...  I will absolutely continue to count on all of you for insight and wisdom.  Your guidance and experience has been unbelievably helpful. Reading the stories has made me feel validated in what I've been going through for so many years.  Your journey, Rica, has been, and still is, remarkable and inspiring. Thank you for your kind words of encouragement.

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

Hi Corinna, I've read all

Hi Corinna,

I've read all of the comments and will try to add info for you rather than repeat the good advice.  Smile

I personally am helping folks that have been so sick and myself too, from a previous protocol so although I'm new here I feel CAPi is not a new concept although some of the measures here are quite different.  

For starters, I was well aware that doxycycline can be more difficult with porphyrin symptoms than minocycline for some and can be especially more difficult in the sunny regions so I opted to start on mino although some folks say that mg for mg it can be more potent.  Stratton says either is fine to use.  

Then, I opted not to do the Flagyli as many have so much difficulty with that one too!  I was scared of it, really, and the possibility of nausea and throwing up!!! ICK!!! So, I opted for Tindamax.  

I was a big mess long before starting the CAP and so read and reread about taking ALL of the supplementsi and their antimicrobial effects and titrated the doses of Iodoral, which I am still doing along with rereading Dr Brownstein's book and taking cofactors and detox measures he suggests.

My Vit D was purposely lowered to 8 on the other protocol so I've been working that level up too with sunbathing and now recently supplementing.  I'm very careful not to ingest too much because I know it can bring on HUGE die off results and so can some of the other supplementsi including the Iodoral.  

What I did was to slowly add the supplements and even use the porphryin measures long before taking any antibioticsi and definitely before pulsing anything.  

I think it sounds like you've done too much too quickly FOR YOU.  I don't know how long you took to get yourself up to full pulsing CAP but it seems for you it's been too quickly.  Some of us are sicker than others and some of us are more toxic and have more trouble eliminating toxins.  

I just talked with a friend last night that is only on supplements and ended up in bed feeling like she was dying for 3 days from taking one little measly iodine pill!  Surprised  She is starting over.  She is only on supplements but she also realizes that if she is getting this sort of reaction from the antimicrobial agents she definitely needs to be careful and go slowly.  

I think one week might not be enough of a break for you, C, if you decide to go back to the same CAP.  Maybe you need to go slower or try some other combo.  Please don't leave us, though.  We are all sick and we WILL get out of this h*ll hole of an existence.  It just takes patience and a plan... a slow plan for starters for sure.  

Here's my favorite backwards walking tortoise which was made for me by someone who lost his life on the other protocol.  I leave it with you as a reminder to walk slowly and sometimes going backwards you win the race... like the tortoise!  Wink

 

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!  

Thanks Reenie,I know this

Thanks Reenie,

I know this was a cry for help and I really was looking for sound advice and concrete support, which I most gratefully have received.  I made some notes while I was reading your post and will ask about switching to Minoi and Tindamax.  Also, I will only start only one supplement at a time and really give it time to reveal any reaction.  My husband and I are going to come up with a game plan this weekend, he's been a real sweetheart in all this.

I have read that Dr. P. goes very slow with some folks and I may go see him still.  I am a very toxic person (boy that sounds awful), but I mean that my load is full.  I get blazing red lymph along my jawline at the drop of a hat.  I start glowing before our noses even pick up a hint of any aerosol toxin and my entire face will join in. It's clearly demarcated and swollen.  It took me 5 years before I could go into a hardware or big box store, and some I still can't.  My liver is something I will ask about getting checked. I was reading about my stools (lovely subject) the last few days because of my troubles in that area and I have for years had episodes of very pale stool, and twice they were completely white.  I know that this is an issue with bile but there are other things that point to the possibility of liver involvement.  I have a history of malabsorption and the diet change may have got me into a bit of trouble. 

On the plus side, all the sweating I've been doing is fantastic for my skin, I have rarely gotten into the steroids, and I am getting sun tolerant.  We were thinking that at the end of the day I may actually be free of my lifelong affliction.

Thank you again Reenie. You have given me excellent advice!  I love the tortoise.  I had one growing up -- I called him Speedy!  Laughing

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

Hi twickle! In regards to

Hi twickle! In regards to hard stools take magnesium. Promise your hard balls will be remedied almost immediately. Also Vit D are you taing 5000 per day or week? 10000 per day is an a wful big ammount. I take 4000-6000 people siriam recommened 50000 per week for msi. I am only finaly getting the begginnings of relief at 9-10months. I was bed bound quite a bit from abxi. Oh with probiotics take maybe 4 times a day at least 21/2 hours from abxi. Aton of vitamin B12, b1, and multi B get the energy back! Feel better! Barbara

NACi and glutathione push for years all supplementsi in protocol)IV vitaminsi b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bidi, doxybid 7/2008

Hi Corinna,I am so sorry

Hi Corinna,

I am so sorry this has been rough on you.  One thing I have learned is that every one of us is different and each of us may react differently to this protocol.  So you need to do what is best for you and take this much much slower than maybe others have.  Take a break, give yourself some time to feel better then start out slowly, as others have said.  I know that I sailed through rifampin and azithro but had difficulty with flagyli.  And although I was supposed to take it for 7 days I could not do that the last 3 months I was on it.  Switching to tinii has helped.  So you, too, may need to tweak the protocol to suit your needs.  Don't give up, just take it easy.  It sounds like that is what you plan to do.

Lori 

 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin Di 50,000 IU weekly

Awww, Speedy!  What a

Awww, Speedy!  What a great name for a tortoise!  Wink

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!  

Short for SpeedyGonsalos,

Short for SpeedyGonsalos, ma'am.

He was a cartoon mouse from the Bugs Bunny Saturday morning cartoons.  I'm totally dating myself with this one... LOL!

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

OMG, I totally know who you

OMG, I totally know who you mean!!! LOL

BTW, I used to breed and show Jack Russells and got on a kick naming puppies after cartoon babies and dogs. 

I kept one dog named "Sweetpea."  Do you remember what cartoon that baby was in?  Wink

And another puppy I named was "Precious."  I don't recall what cartoon that little dog was in but I sure do remember that dog and how he used to laugh!   Smile

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!  

LOL! "I'd gladly pay you

LOL! "I'd gladly pay you Tuesday for a hamburger today!"

I am a serious dog person -- pathetic actually. Get me started on about them and peoples eyes glaze over. :o)  I love Jack Russells -- terriers in general really. They have the best spirit.  Our little fellow is a terrier mix, we don't quite know what exactly because he's a rescue. He's 16 1/2 now and everyday we have him is a gift right now.  He's been on his own version of CAPi for 7 years, takes alot of the same drugs folks here do!

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

YES!!!  Popeye and Olive

YES!!!  Popeye and Olive Oyl's baby!  HA Wink

Here's my Sweetpea 

And her daddy, Sly Wink 

These are my fur kids in their show dog days.  Now they're getting old... he's 10 and she's 8.  

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!  

Corinna- A break from a

Corinna- A break from a CAPi when you have gotten plowed under by it has been used legitimately by CAP physicians, including Dr.s  Stratton and Powell. I think you ramped up faster to a full protocol and all the adjunct treatments, which really amplify the bacterial kill, underestimating the bacterial loadi you are dealing with. I struggled and suffered to maintain a professional life while doing the CAP, and many times I had to pull back from my own overly ambitious timing, my impulse to go to war with an enemy who was better armed than I, and my enthusiasm for getting well that over-rode my body's capacity to detox. Dr. Powell had me take a week break to give me time to clear the huge porphyrin load I had built up, despite measures I had taken, and restore me to sanity and functioning.

Weak, throwing up every day, etc. means saturation with porphyrins and endotoxinsi. Your liver probably is overloaded too, possibly infected and making the whole process much harder. I know that was true for me. Dr. Powell may have patients on Iodoral, FIRi sauna and supplementsi only for months before they bring down their load enough to tolerate antibioticsi. There are a lot of ways you can take a break and restart a more graded protocol: restart more gradually, lengthen time between pulses and shorten pulses, etc. You can look at this more clearly when you aren't plowed under by the onslaught.

But don't give up on the CAP, as your response to it clearly shows how infected by Cpni you are. Perhaps like me, you felt a full frontal assault would rout the enemy more speedily, not realizing the scale of the enemy you were confronting. Retreat, lick your wounds, get functional again, and go at it more strategically and gradually.

I've not had a chance yet to go back through your blog, but I'm not sure why you have the glucose, cholestyramin and charcoal struck out. These are the things you will need to help clear what's flattening you. You might to better to cut back on the Iodoral, time in FIR sauna, and stop the metronidazolei, and see if you can get back on your feet this way. 

Anyway, hope these comments help you sort through what you need to do this thing but be functional. I can tell you, even with a huge Cpn load, that it's possible. I'm doing it. It's been a long haul, but I was able to stay working and growing my family through it, even if not always as fit as I would have liked. The first year or so was hard, but it shouldn't be nonfunctional and hellish except in moments. You may have to do this more slowly than you would like, but it pays off eventually. I know.

 

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

Jim, thank you for your

Jim, thank you for your input on this. Your words are wise and I am going to truck ahead with the new game plan.  I thought I did do it slowly, but evidently not so much.  I was floored by NACi immediately and after a short couple of months I added the Doxyi, and was floored again... once I began to rally I added the Zithi. My first Metroi pulse was 1 250 tab a day, I was going for 3 days but I cut it short, it was all to much.

I munched the glucose tabs all day long, they were wonderful and more helpful than I could have imagined.  I learned that I needed to precede my meals with 2 tabs as well and had stashes in all the cars and purses.  My diet changed radically and I followed the carb requirement and kept proteins light and to a minimum. Still it wasn't enough. The Emergen-C is amazing, my husband wakes me with a glass of C each morning and makes sure I have at least 2 more in the day.  The Cholestyramine was what gave me the best results by far, we learned that we needed to take it regularly and had one dose at 2pm each day.  I added in 6 Charcoal caps at bed time and felt improved (until my skin went extremely dry and my stool turned black and hard).  I was still in bed though, still aching, in pain, tired, vomiting and weak.  My weight loss stabilized with the Cholestyramine, in total I lost 24 pounds since starting the CAP.  But soon my mouth got very sore and my tongue became raw and covered in blisters, it hurt to swallow or talk, and yawning was like glass breaking in my throat.  It was yeast.  So I started Nystatin (1.5million units 3xday) and quickly realized the glucose had to stop too. The yeast quickly spread and 'other' treatments were added. I also started gargling with Magnascent Iodine -- OMG that burns but I think it helps too.  In all of this we realized I had stopped having bowel movements (sorry, it's part of it).  I had progressed to black marbles and then stopped going altogether.  It took a few days of real misery to begin to sort itself out, but I think it is.   The result is though, no more glucose, no more charcoal and no more cholestyramine.  I'd lowered my dose of D3 to 5,000 units from 10,000 thinking it may have been contributing to my misery but it made no difference. Still, I'll stay on the 5,000 for the time being.

I'm going to take that week you mention, and in that time nothing but food and beverages will pass my lips, and hopefully in only one direction.  I will keep up the probiotics though. Next Friday I'll start with Iodoral again and after a week I'll add the FIR Sauna.  Would it be too long if I waited til October 1 to start the NAC again?

I really appreciate your advice and guidance with this.  I thought I was taking the right amount of time, and doing the right counter measures, but I didn't give my body its due -- I was more focused on the end game I see now.  Thank you for your help.

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

Twickle Purple, you have my

Twickle Purple, you have my utmost sympathy. I am so sorry you have suffered so greatly. I do not have any words about the treatment, just wanted to say that I feel really bad for you. I have been very sick and bedridden at different times in my life, even losing a very good job over it. I would imagine you have been a mover and a shaker in your past so you would feel like the barnacle on the bottom of the boatride to success these days. I hope for you to find your way dear one. Hugs.

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

Thank you for you kind

Thank you for you kind wishes Todybear. Your warmth and much needed hug was very appreciated.

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

No pleading or wheedling. 

No pleading or wheedling.  If I were in your shoes I would: continue with NACi and high vitamin Di intake, plus the supplementsi, I would keep filling my prescriptions, so they are available when needed (down the road a bit) and I would stay with the sauna.

Once you stabilize a little, your head will be clearer and you can make a tolerable attack plan.  Start more slowly, ramp up only when you can't bear 'standing still' any longer, do it gradually and limit your pulses to short ones with extended recovery times.

As Jim says, you know for a fact you have a boatload of disease. I doubt you intend to let the cpni take over; you just need to regroup and restart with a comprehensive plan.  The goal isn't to half-enjoy seasons changing and grandchildren's visits.  The goal is to snatch back the future years and years of those things that you could lose to this miserable disease.

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

Kicked in the pants I am. I

Kicked in the pants I am. I probably need that.  I doubt it will be the last time...

Thanks Mac.

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