Cpnhelp.org - Chlamydia Pneumoniae Treatment

John- Double up on the moppers, get cholestyramine if you don't have it, tons of H2O and EmergenC, and then look at how much of this is inflam and might require short hit with predinsone. You might also try pyruvate to counter symptoms.

1500 mg is a normal dose for Flagyli as it has a shorter half-life than tinii and is usually taken three times a day. At those levels the tissue saturation is probably what is hitting you harder: it is at enough concentration to reach some tissues not reached as well previously. Additionally, the rifampin probably pushed more Cpni into cryptic formi, yeilding more die-off from Flaygl. 

Don't let the fog of this phase distract you from the importance of the moppers. When I was in the kind of place you are, albeit without the  mobility issues, the sheer fog and misery as well as poor judgement from porphyriai somehow made the mopping efforts seem pointless. I suffered more because of this. We have ample evidence that those who redouble these in this kind of state can pull themselves out of it faster.

Hang in there.

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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

The 1500 dose of flagyli, I havnt been able to handle yet either. I however chickened down to 1000. Moppers do help alot.. charcol is fantastic for me, made all the difference in the world.

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBSi neutropenia, pus found in facial bone, Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.

Moppers are something I'll be paying more attention to in the future.  I tried 8 charcoal capsules this past time and will try 12 the next time in order to see if that helps.  Hopefully it will.

In addition, I'll be buying Lutimax and giving that a try also.  I have lots of buffered C and B vitaminsi so I probably won't try the Emergen-C route.  The C I have is the Calcium Ascorbate form of C.  I thought the mineral form of C was a better choice then Ascorbic Acid but I'll happily accept being wrong if that's not the case.

A really great person here has offered to send me a walker and I've accepted the offer.  I know what I said before and had I any choice, I would be so against it and the wheelchair.  However, I don't have any choice unless I want to quit my job and become home bound.  That's where I am at the moment and I'm hoping that over the weekend I'll recover some functionality.  I'm already a bit better then when I was on the pulse but still have a long way to go before being able to function pseudo-normally.  Hopefully that will change over the weekend.

Cholestyramine is not something I've tried before and have no idea as to whether it requires a prescription.  If so, I'll definitely ask my doctor for one before my next pulse.

C

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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

Hi John,

Cholestyramine does need an Rx and taking it every day is key. I take it with 4 buttered saltine crackers: I eat 2, drink the cholestyramine (with a straw because it's gritty stuff), then eat the remaining 2 buttered crackers. Because the medicine works with the bile, the buttered crackers stimulate the bile flow. Since beginning this stuff regularly it has made the biggest difference for me, my mobility and stability is enhanced. I take the charcoal every night right before I turn the lights out.

Best wishes,
Corinna

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

Corinna      

Thanks for the feedback on Cholestyramine.  I read up on it today on Wikipedia.  Nasty stuff but I guess it makes sense.  The intestines absorb nutrients and don't generally excrete fluids, so it has to come from somewhere.  Enter the bile acids.  I makes sense when you think about it.  Endotoxinsi have to get back in from somewhere.

This makes me wonder about the way in which porphyrins get back in.  I'm guessing they don't get reabsorbed like endotoxins do but maybe some smalle portion does?  Hmmm....

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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

Jim              

I tried 7 grams of Calcium Pyruvate today immediately following food.  It make no difference.  It might be that taking it with food didn't help and I need to have an empty stomach to get the benefits.  Not sure though, the label says with or without food.  Labels are often wrong though or misleading.

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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

I forgot to make the observation that pulse 26 was a milestone, both a highly unpleasant one but with highly positive ramifications.  Why so?  Well, the reason is that this is the first pulse I've ever had with significant reactions. 

I'm still trying to recover from pulse 26 and still not back to where I was before the pulse.  Is that bad?  It's definitely unpleasant but the ramifications are good.  I would only have had these reactions if A) Flagyli was killing something off and thereby doing what it's intended to do and B) I'm reaching part of the infection that I wasn't reaching before.  It's progress, unpleasant and threatening to my well being in terms of a job and income but it's progress.

I never would have been able to make it through this had a couple of things not happened.  First and most importantly, my girlfriend was really there for me in a way that nobody has ever been before.  I'm so very grateful to her for what she did this week.  Grateful and terrified, but grateful.

Next, a friend here and I spoke this week.  Her words were very encouraging and helpful.  I'm really grateful to hear from her and get her help too.  I suspect it will make a big impact.

So, pulse 26 is a milestone.  From everything I've read here and from the words of friends I've spoken to, every indication is that it's a turning point.  I can only look ahead with hopeful eyes.

 

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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

Hope you get some mobility back soon, John. What a wonderful girlfriend you have. There are a few of us here who are fortunate enough to have such a person in our lives. They are definitely cherished. Hope the walker works for you.

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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

John- I have a slew of articles from Dr. Stratton on porphyrins, and one of them reports that up to 60% of porphyrins are reabsorbed along with the bile acids they are bound to. That's a lot. So this would mean you are only getting rid of 40% of the porphyrins you are generating, and when you are generating more via impact of a pulse the concentrations returning to the blood stream and re-stressing the liver (which has to reprocess them) are greater. It's the easiest thing to underestimate how much these chemicals can effect you.

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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 info.  I noticed the survey in the upper left corner of the page on it.  Ten percent have negative reactions versus 19 percent who don't.  I'll have to investigate some more to find out what sort of negative reactions but I can't expect anything wose then this past week has been.

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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

John I've had mostly positive reactions to cholestyramine. Its great at reducing porphyriai (like nothing else). I also get die-off from it, I suspect from its cholesteroli lowering effects. The only down side is that if I take too much (e.g. 2 packs every day) then my cholesterol gets too low, and I get increased adrenal fatigue.

And I don't know what everyone is complaining about - I actually like the taste/texture!

 

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Hunter: Don't think - experiment

Thanks Garcia   

If my doctor gives the go-ahead, I'll likely use it on the next pulse to mitigate the symptoms and keep me functional.  I've got some time to prepare for that and will likely also have a few other options in hand.

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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

I spoke to my doctor over the weekend.  He suggested that I delay taking the next pulse in order to give myself more time to recover.  I'm not eager to go through this again should it be as intense so I'm inclined to take a pulse holiday coming  up.  We'll see how I feel.

It's been a week to the day since I got so back that walking was nearly impossible.  I'm feeling better now but I'm not walking unaided.  I'm walking with a walker that a friend here loaned to me.  It's been a big aid and it was very unexpected.  But it's been a huge help at a time that I really needed it.

I asked my doctor about cholestyramine\questran and he's willing to prescribe it; however, the dosing I don't know anything about.  I posted a question on the forums about it.  Once I've heard anything, I'll reply to my doctor about it and go from there.

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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

John, So good to know you are keeping mobil and getting around, amazing what friends and their friends can share when needed, Even supported by upper body strength moving  keeps those neurons firing, that is important in reactivating them as I understand from reading many comments over this site during the past year here.  Your doctor sounds very co-operative, that is a real blessing.

Louise

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

John -

Questran/cholestyramine - perhaps discuss with your doctor prescribing you 4 scoops per day taken on a "PRN" (as needed) basis x 90 days.  This will give you tons of flexibility with finding the right dosing for you.

You can purchase it from the pharmacy in a canister with a scoop or in a box of prefilled packet/sachet.   Each scoop or packet contains (don't quote me on this) 4 grams of cholestyramine.

You mix the cholestyramine thoroughly in water (ice cold makes it more palatable) 

I have my husband take a big drink of ice cold plain water to wet his mouth and esophagus, give him the cholestyramine in a cup with a straw (straw is key), he drinks it down and then I follow with another big drink of ice cold plain water.  I tried it -it's not that bad and there are for sure worse things. 

Dosing - My husband started with one scoop/dose per day.  His weight crept up to 240lbs so he ended up taking two scoops per dose to be effective. At times he took 2 scoops twice a day ( hence why you might ask your doctor for 4 scoops per day to have max flexibility).

For porphyriai,  some people think it's a good idea to take a scoop a day for a couple of days before you pulse to get on top of the porphyrins and then 1 to 2 scoops per day during pulse, you'll probably end up experimenting to find the right dose for you.

Dosing Timing - package insert says to take all other medications at least 60 minutes/1 hour prior to drinking cholestyramine.  It then says to wait 4 to 6 hours before taking any other meds.

I ended up giving my husband his antibioticsi at dinner between 6 and 7 pm, probiotics and seizure meds at 9:30 PM and Cholestyramine at 11 pm.  With the 11 pm cholestyramine, I also gave him a bile trigger - usually some 1 tablespoon of olive oil drizzled on whole grain slice of bread. 

When at times I also gave him a lunch dose of cholestyramine, I split the 4 to 6 hour window till next meds and waited 5 hours to give him any medication.  Say cholestyramine at lunch at 1 pm, then no more meds until 6 pm (5 hours).

 This drug really helped the porphyria quiet a bit for my husband.

If you try it and it doesn't help, you are probably having some pretty brisk endotoxini releases that are affecting your walking and you may need to reconsider some short burst of steriods. 

All just my personal opinion of course.

Hope this helps. 

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill