Cpnhelp.org

Reenie, anything I can say could not come close to describing how I felt when I had my first "whispers" of improvement. Six months before that I KNEW that any semblance of a decent quality of life was coming to a crashing end with blinding speed. I already coudn't walk but badly with a cane, would very soon need more help with the simplest things - bathing, dressing, eating, more personal things and I was having trouble holding onto objects, remembering anything, and was well on my way to seriously impaired talking and swallowing. All these were staring me in the face. THAT "sheer terror" is how we do it.

___________________________________________________________

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

"How do you folks stay motivated enough to keep this going?  I mean, it's quite difficult and I see only a small cohort of members here posting.  Is it because the rest have fallen by the wayside as CAPi casualties?  I could see how easily that could happen, but I imagine it must get better than this... ?  "

Those of us taking the medicine, but not posting much are simply getting on with our lives - not falling by the wayside Reenie.  As Rica said, it is the sheer terror of the alternative that keeps us going when MSi is in the picture; that and the "whispers" of improvements we get later on down the line. Finally as my sig says,"I can because I think  can" and we are a stubborn lot here.

___________________________________________________________

Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #17...I can because I think I can.

I stay motivated by knowing it's the only game in town. There is NOTHING out there for us but this. Since this makes total sense, the science is sound, people are recovering... this is my ONLY choice.  I should think, faced with the choice of quitting and declining into the abyss, or sticking with it and having a VERY strong shot at recovery, anyone would choose to recover, no matter what it took to gain that recovery.

I second the assertion that most people aren't posting because they are getting on with their lives.  (As a matter of fact, I was one of the first people to say that when newbies here started asking that question. I didn't think people were quitting or failing; I had noticed people like Astrodiana stopped by occasionally, but basically had better things to do with their lives once they recovered.  And that's really the goal here, after all.) 

Several of the 'original' patient/posters have made a conscious effort to stay here and be a supportive base for those who follow.  LifeontheIce, Sarah, JimK, Bleu, Red (hmm, I see a pattern here), Zdenika, Norman, Raven, Katman, Cypriane and others I am failing to name (yes, I'm on a long pulse of flagyli again), but who are no less important here...  all have made significant recoveries and have extraordinarily busy personal lives.  But there is a feeling of personal responsibility, too, that keeps them here, as a kind of lighthouse for those who follow. 

We could just move on, as many have, but I know for a fact that I'd have been SO relieved to have a dozen people to talk to, ask questions of, and whose successes I could point to, when I first began this treatment!   Instead, I badgered Sarah, David and LifeontheIce incessantly, and they were incredibly gracious about it.  We all know we could have so easily been lost and likely dead by now.  Right now, let us carry you when it gets tough.  Soon enough, you'll be the bridge for others who come behind YOU. 

___________________________________________________________

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, you said, 

Right now, let us carry you when it gets tough.  Soon enough, you'll be the bridge for others who come behind YOU.

YESSS.  And I will be only too glad to do so!  There are alot of folks that I still communicate with that are also looking for support so I really do spend extra effort learning how to be supportive, what to expect, what to do, what not to do, etc.  This is good for me, too. 

But... it IS really tough in the beginning I think and it is quite tempting to just give up although I'm simply not that kind.  In fact, if I stopped, I know I'd be angry at myself for doing so.  I look at the dates of you folks that have been here for the past 4 yrs and wish I had known of this protocol rather than the 4 yrs I spent on the MP. 

OTOH, everything happens for a reason.  Maybe someday I'll find out what that reason was, maybe not.  

Thanks for the support. 

BTW, I just got an email from another new CAPer and she didn't realize until just now that she felt worse all week long prob because of the Flagyli so at least I was able to send her an encouraging email, paying it forward.  

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Reenie- I just know that you will be like one of those old timers like Mac said (she's one of the best of them) who will do what we can to pull people through the hard parts. To respond to your questions:

1.  How on earth did the early folks under Dr Stratton's care do the CAPi quicker?  I mean, really, just how so?  If it's possible to just "suck it up" and do it without harming one's self or were other measures used like a medical coma. (just kidding, but would really like to know. Dr. Stratton has said that this was the most difficult part of the protocol and took a lot of physician intensive encouragement. I think he would just modify how fast they were ramping up and slow it down as much as needed. Remember, they figured out a lot of this stuff as they went along, like the secondary porphyriai (which no other researchers have discovered), the B-12 needs, and so on. They had a lot of patient drop outs in those days. He even started a local patient self-help group at the time. He sees Cpnhelp as the support mechanism that was missing in the early treatment approach.So we are it!

2.  I would still like to begin Valcyte at some time and now am toally uncertain when to add it.  One idea would be to take a breather from tinii pulses and begin Valcyte now, or soon, rather than anymore pulses for awhile or the other idea would be to just do more of the tini pulses and forget about adding Valcyte.  Any ideas or thoughts on this?  Just one non-doc's opinion, but now that you know what effect the tini pulse has for you, and the improvement after your body recovers from it, I'd either do another pulse or two first or not pulse while you get the first month or two of Valcyte under you belt. Either way, it's about having a predictable baseline so that you can know what's what. If you do the latter, then you'll probably have gotten through the wave of die-off from Valcyte, if any, and continue on while you return to pulsing. If you choose the former, you'll really know the pattern of pulses so that you'll know whether to hold off if you start reacting to Valcyte. No harm either way.

3.  How do you folks stay motivated enough to keep this going? As Mac said, from help of others plus tracking the improvements, no matter how slight.  See number 1.

4.  The way I understand what happened to me is/was a combination of porphyriai and die off.  So, am I understanding this to mean that the bacteria killing went on after the 2 days of tini?  I mean, the past on and on of continued symptoms weren't just from aftermath of ridding the body of toxins, was it? As far as we understand it, apoptosisi of effected cells isn't an all at once thing and continues after the tini pulse is over; bacterial clean up and cellular repair seems to peak at some point along with inflammationi and is different for everybody; there is evidense that the dead bacterial "envelopes" from killed Cpn remain actively inflammatory for up to two weeks after kill.

 

___________________________________________________________

 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

all good questions ....

how to keep going ... it is tough.  i suppose i have done it partly by being an avid reader of the site, daily probably for the first six months, picking up hints and explanations there.  for me, i tend to have a 'benchmark' to look forward to.  xmas 2008 is the biggest one - i would expect, after a year to see improvement by then, though i have already, and hopefully enjoy it more than xmas/winter 2007 when i first started CAPi and looked and felt awful! !!! winter is usually especially bad for me - so there will be a relevant comparison.   thats what helps me anyway.  i think people have different ways of putting a positive spin on a hard time.  the 'what is the alternative' is relevant, so i would not really be put off, unless after a year i felt no better.  scientific explanations and other people's experiences and assertions that it does get better (however slowly) have also  helped me.

as regards CPNi apoptosisi - i am not brilliant at the science stuff - but i can testify that the killing fields can come later, sometimes considerably later, up to three weeks later i can suddenly get pains and a 'dead in the water' feeling like no other.  i personally would be interested in more research on this subject. strangely, this pulse (no. 9) hit me sooner!  i don't know what will happen in the next couple of weeks!

 

 

___________________________________________________________
M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

I can see the 'old timer's touch' in you already Reenie.  It really does make a difference to how you cope with the vagaries of the treatment if you can bleat a bit to people who have been there before you.   I think that the longer you have been sick the longer it is going to be before you start to see the improvements and at times it can be utterly depressing to be suffering for semingly no reason, and it is only the experience of others that keeps us/me going.  

I sometimes find it difficult to cope with Ella's problems and I always turn to this site for encouragement.   Sometimes I don't even need to post the problem on the site, but get the answers from reading responses to other people's problems.

Undoubtedley there are people who have fallen off the radar, but there are also people who have been on the treatment for years and are still making progress.   For all the reasons you and others have mentioned this is a hard treatment to follow and none of us could do it on our own.   I've been doing this for 2 and a half years, done 40 pulses and still this latest pulse has hit me with a broadside, so much so that I had to cut it short....

So even the old timers can feel insecure and need the help of others.

___________________________________________________________

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 6.5 Wheldon CAP 16th March 2006

Jim, Michele, blackfoot, et al, 

I opened up my browser to morning coffee reading and was pleasantly surprised to read all of the wonderful "warm fuzzies" and splendid explanations here. 

Yes, this is definitely a difficult thing to do alone, but we are not, as evidenced here, once again, and I thank you all for that, from the bottom of my heart. 

Your answers are most encouraging, exactly what I needed to hear.  Not everything has to be positive all of the time, just encouraging and HONEST which is what this site exudes knowing I'm doing the best I can for myself and that I too can be honest and doubtful at times and that it's quite alright and even encouraged to share, so that we all learn from one another.  This site rocks!

Jim, I appreciate your opinions on Valcyte and pulses.  I'm not sure exactly which way to go but it helps to have an expert patient's thoughts to bat around to help me decide. I'll definitely let you all know which way I decide to go. 

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Hear, Hear Mac!  Well said!  This is indeed the only game in town that has any real shot at restoring people with MSi back to functionality again and is MORE THAN ENOUGH to motivate and keep those of us with MS on track, continuing through the abyss until the light becomes visible ahead.  Sure, we may stumble, trip, fall down along the way but we get up again and go forward, one careful step at a time.

I too hope that I get to the point where I can log in and tell new people the hell I went through and the reasons to go ahead and bear through it.  It's true, I know the reasons but living them and knowing them are two different things and I want to say that I lived through it.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Reenie, If you want a startling view of what Jim is talking about, you should go read his posts from 2005 on ThisIsMS. I wanted to drive a few hundred miles and go give him a hug, he was so miserable. Unbelievable. And he lives to tell the tale! And he PREVAILS.

Jim is a whole different person now than when I first 'met' him on line and that's what you have to hang onto. Change comes, sometimes with great difficulty, but you have to weather the results of the die-off and plow through it.

P.S.  Thanks, Jim; made me blush. 

___________________________________________________________

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

Reenie, I'm not certain, but it might be Astrodiana. You might try sending her a private message and asking. If she gets notifications, she'll know you sent it.

If anyone else here knows of someone beside Astrodiana, Reenie just updated her blog, asking who here recovered without taking flagyli or tinii.

___________________________________________________________

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

Reenie~

My 2 cents would be to do a couple more tinii pulses.  Get a real feel for what those will consistently be like, then consider adding another drug (valcyte) to the mix.

Timaca

___________________________________________________________

Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

Thanks Mac!  As always, you're very helpful. 

 

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Hi Timaca,

I'm not sure if you read the latest part of my blog which bumped it up. (it's dated today's date in the main body of this blog)

I would have agreed with you on the tinii then Valcyte but for now, I'm trying to survive and just survive!  At this point, I couldn't do either and I'm contemplating whether or not the minoi and Z are causing too much reaction or is it still tini aftermath or something else altogether. 

I have to schedule a follow up MRI, bone density, mammogram, chest x-ray and I'm waiting for labs to come back and will discuss maybe more with my endocrinologist as well next week.  For now we're rechecking thyroid and Vit D.  I'll see if she has any other ideas as well or if anyone else has any other suggestions, words of wisdom, enlightenment, encouragement, etc.  

Thank you 

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Reenie- I still don't buy the "runaway immunei system" explanation, mostly because the only evidence being pointed to is inflammationi, which can be caused by so many different things. Treating inflammation, however, is important. As much so that you can continue in the process of killing the buggers as to also prevent tissue damage from it, as it is the tissue damage from inflammatory process that probably causes most of the Cpni related diseasesi.

Mostly, I think the problem is that we completely underestimate the extent to which we are infected. Cpn is so insidious, and accumulates in a large number of endothelial cells in a host of different tissues and organs. CFSi and FMSi are, to me, diseases of slowly going down under an enormous bacterial loadi of Cpn, whereas MS is more a disease of damage from focal infectionsi (of course, a lot of MS folks here find they have broader infections as well. 

So, if you have a broad infection and high infectious load, just knocking down the amount of replication through protein synthase inhibitors will give you back more ATP, more organ efficiency, better cellular functioning, more energy for life, in the short run. After getting onto basic treatment you feel better generally, but the deeper problem of Cpn is just beginning to get addressed.

I don't believe that if you take them long enough that normal cell die-off will do the trick because what you get is an accumulation of highly inflammatory cryptic/persistent Cpn, and the tricky little bastards "immortalize" the host cell so it doesn't go through apoptosisi. 

Why are you still feeling like crap so long after a pulse? Killing Cpn, especially in CFS, means actually killing infected immune cells. The problem may not be overly active immune system but temporary immunosuppression (macrophages and neutrophils) and increase in viral load. This is a temporary state as fresh uninfected cells get produced, but if you have bone marrow infection (I'm certain I did) this can take a long time to really get at. A good reason to do the Valcyte too while you are killing the Cpn, until your own immune cells are not parasitized. By the way, if I recall correctly, Astrodiana used INH as part of her protocol and in the patent research INH was the fastes and most effective antibiotic in clearing (along with flagyli and amoxi) the macrophages and immune cells of Cpn.

It is also apparent to me from my own experience and watching others here, that the triggers for apoptosis after a pulse are not at all related to the presence of the flagyl/tinii. My speculative notion about this (from a cursory understanding of the biology) is that is that the DNA degradation from the bacteriocide is overwhelming for a bunch (immediate die-off symptoms) then another set of cells lamely struggles along trying to repair damage from the flagyl for a couple days before croaking (a technical cell biology term), and others struggle along even longer with the bacteriostatics making repairs difficult before they succumb. Then there's getting rid of all the junk which creates inflammation as well -- both the junk and the immune processes themselves. 

When you have such a broadly screwed up system as you do, tipping any one thing has effects on other problems. It's very hard to sort out what's what when there are so many things going on. The lower the bacterial load, for me that took about two years, the clearer the patterns were.

___________________________________________________________

 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim's very clear explanation answers most of your questions I think.   I also took about two years of constant CAPi with regular 5 days pulses of Flagyli to be able to see the wood from the trees.   What was causing what was a mysetery to me until recently.  Now I can take a medication or supplement and notice whether it has any effect or not.

The only onther thing I would like to say is that the MPi doses are small compared to the quantities of antibioticsi we take here so there is bound to be more reactions from this protocol.   And because of the lack of apoptosis of Cpni infected cells it requires either INHi (which you might find as difficult to tolerate) or Flagyl/Tinidazole to induce necrosisi which Daisy once ventured to explained is much harder of the body because it happens without the usual warning and protective measures that the body usually employs when going though the process of apoptosis.

Here is how she explains it:

My personal theory is something like this... 

When you have pockets of stealth infection and you add bactercidal antibioticsi such as Flagyli you create a good deal of unplanned cell deathii which is called necrosisi.

The human body undergoes apoptosis (planned cell death) of diseased, old, deformed, etc... cells at the rate of 1 million per second.  Not to worry though - you have around 50 Trillion from which to work. 

Apoptosis is a very orderly process.  Appropriate chemical signals are sent well in advance and the cellular clean up crews are there and waiting to claim the cellular debris from the death of the cell. Collateral damage of neighboring cells is none to minimal.

Apoptosis is a natural process that goes on all throughout your body every moment of your life. The key words re Apoptosis - planned and orderly response.

On the other hand necrosis - it's unplanned cell death.  Nothing at all orderly about it and a ton of different inflammatory reactions can and do occur.  The key words re Necrosis - chaos and massive response.

In a non stealth bacterial infection, the body knows an infection is at a particular site.  All of the bodies natural response team are in place and waiting to do their jobs including the cellular debris clean up team. 

In this situation, when you add a 'cidal agent such as Flagyl, the fall out is brief and the body is prepared so the response is just a clearing and resolution.  In other words, you do nothing but feel better quickly.  Order is the rule.

On the other hand, in a stealth bacterial infection such as CPni, the infection is hiding from the immuneii system.  The alarms have not been sounded and the full immune system response team is not in place.  Signals have not been sent to the cellular debris clean up teams. 

In this situation, when you add a 'cidal agent such as Flagyl, the body isn't prepared.  It doesn't know there is an infection in that site (remember CPn is hiding in immune cells).  The unplanned cell death process necrosis occurs.  It's disorderly.  The body is unprepared. 

The lack of pre-signalling making it more difficult for the immune system to locate, clean up and clear the dead cells which die via necrosis as opposed to orderly apoptosis.

The difference with the bacteriostatic agents like azithromycin and doxycycline are that they are interferrng with the bacteria's protein synthesis and making them vulnerable to detection and elimination via the normal immune system.  Pre-signalling occurs and the body is better prepared to clean up the aftermath.

When cells parasitized with stealth pathogens such as CPn release their toxic contents this can lead to a cascade of effects and secondary damage.  Other special enzymes come in to play including those that call the immune system to create inflammationii as a protective mechanism.  It's messy and there is collateral damage to neighboring cells.

I haven't found any thing that says how long it takes the immune system to suss out the source of the sudden necrosis and to send in an appropriate clean up team but the response must be rapid and likely much greater than the response to normal apoptosis.  Strokes might be a good example of this.

My personal theory is that when Flagyl hits the CPN parasitized cells, the body isn't ready. 

The immune system is caught completely off guard and is unprepared to quickly clean up the endotoxinsii and other toxic cellular contents.  The immune system isn't sitting there waiting to do it's job. 

The endotoxins, parasitized cells toxic sludge, debris etc... sit there in your tissue with no clean up until the immune system catches up and gets to it.  This allows for extra inflammation as well as the death of more cells that didn't need to die in that moment creating more immune system reaction.  It becomes an over the top dramatic response.

It's perhaps a little like spilling bleach or battery acid on the rug and then waiting a couple of days to clean it up. While the spill is there, it's not only damaging the exact spot where the spill occurs but the damage from the sludge is seeping into other areas . 

The reaction to necrosis of CPn infected cells is likely too much too late.  Nothing to be done about it that I can think of.  Anyway - this is how I have tried to explain it to myself.  My own personal hypothesis/best guess.

Could even hypothesize that the more delayed the response to Flagyl is, the more parasitized and subotpimal your immune system might be and the slower your cellular repair and healing processes might be.  All again just a hypothesis. 

Could also hypothesize that the more delayed the response to Flagyl is, the better your immune system is working, it got there quickly to minimize damage/response but was eventually overcome by toxic sludge leading to the delayed reaction. 

So what is happening in the folks who don't show a Flagyl response until day 14, 21, etc.. of an extended pulse.  Could be a number of things - pathogens different than CPN, length of time it takes to overcome the efflux pumps of a particularly recalcitrant area of infection, etc...  who knows... I am just throwing personal ponderings out here.

 

 

___________________________________________________________

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 6.5 Wheldon CAP 16th March 2006

I have taken Cholestyramine with all my tinii pulses starting on days 3 to day 5, except one this summer.  It was unplanned but I just did not start and the longer past pulse day 5 the worse my fatigue etc got, finally I woke up and took my Cholestyramine 2 packets for several nights in a row then backed it off to 1 packet it took a full week to feel that I was improving and several weeks to feel "normal less than full but the norm, energy again.  I personally need the support of cholestyramine to prevent reabsorption of the fatty by products of the pulse.  Between pulse I now realize when I feel a little porhy ( yes, my term and I take a nightly dose to keep up with it.)   Also the methylation supplementsi simple protocol have been most helpful.  I attended a High School reunion and danced and danced.  When people asked what I was "doing" I talked about treatment for CFSi and long term abxi, folks looked like their jaws were dropping.  (Like she doesn't look sick to me!) 

Reenie, taken once a day cholestyramine should cause you no problems as long as you keep your Bowel movements regular with stool softeners if necessary.

I know I write this over and over but I guess that since this made such a dramatic shift in my ability to maintain somewhat consistent energy and come back to life on CAPi I keep saying it once again. 

With the Cholystyramine results well most of the folks that made comments about it not working never post about their experiences of cap in general from my observations.  Quick to poo, poo it but are really not in the converstation here.

Best Healing to you.    Louise

___________________________________________________________

Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

A fantastic thread! Thank you everyone. I don't have the wherewith all to add anything at this time - too much brain fog, anxiety and suffering. I will read over later if I can do so with cognition?I remain afraid of all the drugs. I am in midst of 11th tinii pulse. Very difficult time. Perhaps cholestyramine would work now?

 

So many thanks,

Loulou

___________________________________________________________

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BID,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, no rifampin as yet, just doxy and 1 gram daily of IV ceftriaxone, soon to

cholestyramine made me very ill.  In some people (especially if lyme is a problem) taking cholestyramine can make you "sick as H***" to quote Dr. Richie Shoemaker.  

I tried it several times, and it made me quite ill each time (CNSi problems).  This does not happen to everyone.  But, it did to me.   

I guess it was binding enough toxins to create an imbalance of some kind...that is all the doctors could figure out.  At any rate, I don't take it.  Plus the probiotics cause enough constipation issues without adding that into the mix! 

Best, Timaca

___________________________________________________________

Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.

Timaca how many times a day did you take it and how much with each dose?  Did you take it with meals?  I only take mine once a day away from major meals with a little cheese to get the bile flowing.  I  have had not problems.  I am Bb postive.  I am sure glad that it is able to clear my thinking and allow me to come up to speed some with energy.  Sorry you didn't get good results from your way of taking it.

Louise

___________________________________________________________

Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Michele- Thanks for reposting Daisy's Hypothesis (I officially name it!). I don't know if I missed it entirely before or I read it and it went through my sieve without a trace, but it's really quite a brilliant, clear rendering of some very complex biological processes. I'm bookmarking this thread to keep it available. Dr. Stratton sent me a bunch of articles a while back on the differences between apoptosix and necrosisi in cell deathi, but I was a poorer student than Daisy and didn't put it together so well as she! Very useful in trying to think through the complexities of what happens here in our varied reactions.

___________________________________________________________

 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim, Michele, Louise, Loulou, Timaca, (and Daisy)

Thank you for all of your replies.  I'm still unsure what to do or how to proceed.  I guess from what I'm reading is that all of you think I need to just ride this puppy out as the CAPi is doing its job?  I tend to feel that something is happening too, yes, but it's quite puzzling and so the musings of what, how, why, who and so on... 

Jim, I think what you and I are saying may be similar to one another and different than the MPi states.  I'm saying that maybe the so called runaway immunei response may be what you are saying (more appropriately) necrosisi and aftermath of the tinii pulse and the continued effects of the bacteriostatics.  I would agree with that.  I would also agree with you that the infection could not be eradicated on its own without the aid of the bactericidals if this is the sort of response I get from taking only TWO DAYS worth of tini regardless of what is actually happening, and for the length of time I've been ill and who knows what I did to myself with the D deprivation for nearly 4 yrs.  

But I still do wonder if the MP did something to change my immune system's reaction.  I do think I'm different now but not sure exactly how.  For example, I have alot less inflammationi and my 1,25D remains in the normal ranges even in the sun and w/o Benicar, when it used to be quite high.  Maybe someday I'll be able to sort that out, maybe not.  

As I compare my latest labs, one from March (before CAP) and one from August (drawn the 2nd day of tini) I see small subtle differences which may be confirming what you and Michele are both saying here.  

1.  It looks like my hemetocrit and hemoglobin are both a little higher but still in the normal range.  I think this would indicate some pophyria tendencies from what I read in Strattons' porphyriai explanations. 

2. Some of the counts within my CBC might be indicative of more apoptosisi occurring.  Although they are all within normal ranges, WBC and neutrophils have dropped. RBC is up but if the immune cells are working and being killed off (necrosis) this would make sense because I don't believe RBCs are effected by this.

It would be intieresting to have the last labs drawn just this past week to compare, but I don't.  I just know that the tests (Sept) were still within normal range.  I won't have the actual numbers until my next Dr's appt.  

I think that maybe the reason for my strong responses may be that I have alot more cryptic formi of this infection which is only being touched by the tini pulse and now also the weakened bacteria are continued to be destroyed by the bateriostatics I'm still using.  So, in a sense, this would be a runaway or run on immune response...sorta.    (IMOi, it depends on where we come from as to how we use this term) 

So, the question would still remain the same...

Do you think I ought to ride this puppy out until I feel I can tolerate the next tini pulse?  (and yes, I'm doing the adjuncts)   I think that Timaca's idea of a couple more pulses before adding Valcyte would still be a better way to go than stopping the pulses or adding another unknown variable right now.  That is also why I'm not willing to add Questran, Louise, but thanks for the idea.  I just don't want to add another unknown at this time.  What do you all think?  TIA

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Reenie- sounds like you are working your way to a decision: getting a sense of the trend (I won't use the term "predictability" here) before adding another variable. This sounds fitting to your nature. God knows, if it were HDWhit or myself we'd be experimenting away first and then posting "Help me figure out why I'm so f---ed up!" You, at least, like to think it through before you put your foot in it!

___________________________________________________________

 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim,

Thanks for the chuckle. 

You're absolutely right.  I TRY to figure things out in advance.  But that can also be BAD...

I often, "feel my pain in advance" anticipating the outcome in a certain experience.  OTOH, sometimes I can avoid ending up in the ER, I think, maybe, hopefully...

"When in doubt, don't" 

BTW, I HAVE thought that I was asking AFTER rather than before, feeling so puny this time, but I suppose I'm not, really.  I simply want/need a little understanding and reassurance that what I'm doing is the RIGHT thing.  I think many can relate to that.  

And yes, I realize that the reactions I'm getting mean SOMETHING IS HAPPENING.   I just wish I could know what that something was!  You know, been there, done that, have the t-shirt... boy, do I have ALOT of t-shirts!   

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Well, Reenie, I guess this is pretty good proof that Cpni is a major player for you! No way you'd be reacting to flagyli like this otherwise. Glad the clouds are lifting.

___________________________________________________________

 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Well Jim, you are absolutely correct, again. 

Actually, I only took tinii, thank God.  Can you imagine??? Let's not even go there. 

Btw, my titers aren't very high at all, within the lab limits for CPni (1:64) and with showing past infection for "the other" Chlamydia bug, (1:128) which is not really all that high either.  

So, I either have a boat load of cryptics now, maybe from all of the years I did the sub clinical doses of abxi without any bactericidals or... who knows... but I never did have much reaction from any of the other abxi before this, nor very much from NACi alone.

Thanks for putting up with me.  Yikes, this was a real test. 

___________________________________________________________

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!