I finished my 7th pulse today but it is now changed from flagyli to Tindamax. What a difference this pulse was! I had very little reaction to Tindamax compared to how I felt after the past flagyl pulse. I had one day (4th out of 7) where I was more tired than usual. But not wiped out like flagyl does to me. Also no nausea like I experience before. And it doesn't taste yucky! If I tolerate this well the doctor wants me to go for 10 days, which I would do after the next pulse or two if things go well. The only thing that worries me is if Tindamax is actually doing anything. At least with flagyl I believed the "feel worse before you feel better" mantra applied. What would be awesome is if Tindamax works just as well without the side effects of flagyl!
The reason I had to change is that I was experiencing recurring UTIs without knowing why. I had to take an additional antibiotic for the UTIi, along with the ones I take for CAPi. When it came time for flagyl I think the additional antibiotic ( usually macrobid) along with the flagyl put me over the edge. So the doctor wanted me to 1)change to Tindamax and 2)see a urologist for the bladder issues. So I did and for the past month have been undergoing several tests (3) to see what the issue was. Well it does appear to be neurological, so I now have gotten to add Flomax to the pile of pills I already take. But it does seem to be helping. Haven't had a UTI for a couple of weeks.
So it has been a challenging month, to say the least, but at least the Tindamax pulse wasn't bad. And I do have to say that I feel that over the past 8 months there has been improvement. Fatigue is pretty much gone (not that I don't get tired-it's just not overwhelming), double vision is much improved. Only experience it when I am really tired or really hot. Still have slight tremor. Balance is very good. My sister was here this past weekend visiting from out of town and she commented on how well I looked and acted. I feel glimpses of my "old self" coming back. Don't misunderstand, I am not "all better" yet so those of you who think this is a quick fix-it most definitely is not. But it is definitely strong improvement and encouragement to continue on! I wouldn't stop for anything!
Lori
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Lori, I love it!!!! Those
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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
Oh, Lori, this is good.
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Lori - Happy for you
Lori - Happy for you !!!!
Tindamax MAY (and I will only say MAY) be better tolerated because of the path it undergoes through P450 system vs Flagyli. As a result of Tindamax being processed by different P450 enzymes than Flagyl, it may create less of the porphyriai like side effects.
Just curious - What's your Tindamax dose?
Also - I believe others have reported your doctor is okay with longer pulses. Maybe extending your pulses down the road might give you more bang for your buck (if you want some that is).
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Thank you for your
Thank you for your support!
Daisy, my dosage is 250 mg 3 times a day for 7 days. Yes, my doctor does suggest longer pulses if tolerated. I think I will go for 7 days the next time just to be sure. Then if I tolerate it the same I will probably increase it to 10 and see how that goes.
Lori
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Lori, I recall last winter
Lori, I recall last winter when you were deciding wether to start this journey or go conventional path. You sound really upbeat and managing well. Still hoping to have lunch with you when I decide to visit your area of the world. I am getting better and may do that sometime in the next year.
Daisy, do you recall what pathway it used by metronidiazole in the body?
Louise
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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
Lori - In addition to
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Louise - Flagyli goes
Louise - Flagyli goes through P450 and has been historically widely believed to be a significant inhibitor of CYP3A4 although I found one small study that disputed this.
On the other hand ,an in vitro study, tinidazole was not observed to inhibit hepatic cytochrome P450 enzymes.
From Tindamax PI labeling, "Tinidazole is biotransformed mainly by CYP3A4. In an in vitro metabolic drug interaction study, tinidazole concentrations of up to 75 [micro ]g/mL did not inhibit the enzyme activities of CYP1A2, CYP2B6, CYP2C9, CYP2D6, CYP2E1 and CYP3A4. "
This is what leads me to hypoth that many here and on lyme boards find Tindamax much more tolerable than Flagyl.
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Louise-just let me know
Louise-just let me know when you can come! That would be so great! I have had lunch with Kim and Ken this past summer and it would be fun to get together with others also!
Daisy-good thought about increasing the dose. I have emailed Dr. S to tell him how I fared with this pulse of Tindamax so am waiting to hear back. On the other hand, if I go too high I may think "be careful what you wish for"! It may slam me another time. I can't get too cocky!
Lori
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Lori, I sure will let you
Lori, I sure will let you know when I plan a trip south to visit my friends. And it will be interesting to share what you hear from Dr. S. and how he manages your Tinii pulses in light of your response. I started with tini, had the intuition that my sensitivities would fair better, oh to be one of those that can stomach anything but....I'm not.
And Daisy I figured it had to be something related to how the body processed it differently. With my liver reactivity and elevated liver enzymes related to doxyi, I assume that it can make a difference to me which agents I might choose to go with. I have had such an easy time with Roxi that the change to Clari is just abit to be poetic scary for me. my next visit is in early October, I am going to hold off for that appointment and the likely resulting draw for liver enzymes. Do you have any easy links to charts with the ezyme pathways for the abxi frequently discussed here?
I'll let go of Lori's thread now. I's say pmessage but someone else might like to hear your response if there is one. Thanks for sharing YHO (your humble opinion). Louise
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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
Lori, So happy that tinii
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
LouiseWhat do you mean
Louise
What do you mean when you say " oh to be one of those who can stomach anything but...I'm not"? Did tinii bother your stomach when you took it? Or did it do something to your liver enzymes? Flagyl really was so much worse for me. I am hoping that this time with tini is how it will continue!
And Daisy, feel free to respond here if you have an answer to Louise's question. I'd like to know also.
Lori
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Hi Wiggy!Thanks! I will
Hi Wiggy!
Thanks! I will keep everyone posted on the progress!
Lori
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Hi Lori, I meant that I
Hi Lori, I meant that I would really like to be able to swallow medications, supplementsi, and exotic foods without having a stomach reaction, such as nausea, severe nausea, vomiting, and or discomfort to stabbing pain. When I heard about flagyli descriptions I assumed that it would not be easy on my stomach to say the least.
And there are many on flagyl that do really quite OK with the physical act of getting it past their stomach which was my first concern. I may try it in the future and perhaps it will set OK for me.
I too am on Tindamax pulses. And get some good energy after starting the pulse and some die off symptoms up to two weeks after. Louise
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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
Another poster did this for
Another poster did this for us.
http://www.cpnhelp.org/cytochrome_p450_drug_inte
If there's one you want me to look up, I'd be glad to - I have been researching this area quiet a bit and have references.
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Thanks Daisy, Yes that was
Thanks Daisy, Yes that was the link that I had lost in the Great Bookmark Changeover. I had it marked and scanning the thread I was the last to post to it. Would like to see more posts from that contributor!
Hm, From taking a look at those charts Rifampin and Clarithro might be a good balance to be taken together?
Any international data that you have read regarding Roxi in this picture that you might have found in your readings? As it is understandably not on this list. Thank God Daisy that you can read this biochemspeak, really. I stretch to read this depth of pharacological information. My background is thin so to speak in the biochem yet the info does intigue me, the chemical soup our our physical beingness.
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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
From Drug Metabolism and
From Drug Metabolism and Distribution
"These results suggest that roxithromycin itself is not as potent an inhibitor of CYP3A4 activities as are troleandomycin and erythromycin, probably because of the slower metabolism of" this compound to metabolites M1, M2, and M3 in humans "
From Journal Toxicology
"These results suggested that roxithromycin and erythromycin were relatively less potent to inhibit CYP3A4-catalytic activities in human liver microsomes, because of their low capabilities to form P450.Fe(II)-metabolite complex"
From the french version of a PI
"Roxithromycin and other macrolide antibioticsi have the potential to interact with a large number of drugs through their action on hepatic cytochrome P450 isoenzymes, particularly CYP1A2 and CYP3A4. Macrolides inhibit drug metabolism by microsomal cytochromes by competitive inhibition and by the formation of inactive complexes.
Concomitant administrations contra-indicated:
Concomitant administration of roxithromycin with vasoconstrictive ergot (alkaloid) derivatives is contra-indicated since symptoms or ergotism have been described with other macrolides.
Roxithromycin may inhibit the metabolism of pimozide, resulting in increased serum concentrations of this agent. Elevated serum levels of pimozide have been associated with adverse cardiovascular effects including QT interval prolongation, torsades de pointes, cardiac arrhythmia, and sudden death. The concomitant administration of roxithromycin with pimozide is contra-indicated.
Concomitant administrations not recommended:
Terfenadine and Astemizole
Enzyme inhibiting drugs such as roxithromycin and other macrolides may lead to the decreased hepatic metabolism of terfenadine and astemizole resulting in increased serum concentrations of terfenadine and astemizole. This may result in prolonged QT intervals, severe ventricular arrhythmias, typically torsades de pointe.
Cisapride
Cisapride which is metabolized by hepatic CYP3A isoenzymes has been associated with QT interval prolongation and/or cardiac arrhythmias (typically torsades de pointe) as a result of an increase in its serum levels subsequent to interaction with significant inhibitors of the isoenzyme, including some macrolide antibiotics.
Although such a risk is not verified for roxithromycin, combination of roxithromycin with such drugs is not recommended.
Precautions for use:
Warfarin
Although roxithromycin has a lesser inhibiting effect on cytochrome P450 enzymes than other macrolide antibiotics, some reports have suggested that roxithromycin may potentiate the effects of warfarin when given concomitantly to severely ill, elderly or compromised patients. Therefore the concurrent administration of roxithromycin and warfarin may result in the inhibition of warfarin metabolism, and increase the risk of bleeding.
In patients receiving oral anticoagulant therapy with warfarin, the prothrombin time ratio or international normalised ratio (INR) should be closely monitored with the addition and withdrawal of treatment with roxithromycin, and should be reassessed periodically during concurrent therapy. Adjustment of the warfarin dose may be necessary in order to maintain the desired level of anticoagulation.
Disopyramide
Roxithromycin displaces disopyramide from protein-binding sites in vitro. Concurrent administration of these two drugs in vivo may result in increased disopyramide serum concentrations. Consequently ECG and, if possible disopyramide levels should be monitored.
Digoxin
In approximately 10% - 15% of patients, digoxin is degraded extensively by bacteria in the gastrointestinal tract. Roxithromycin has the potential to decrease the amount of gastrointestinal flora, resulting in decreased digoxin breakdown in these patients.
Thus, the co-administration of digoxin and roxithromycin may result in increased serum digoxin levels resulting in digoxin toxicity. Serum digoxin levels should be carefully monitored when roxithromycin is added to or withdrawn from therapy. Patients should be observed for signs and symptoms of digoxin toxicity (nausea, vomiting, and arrhythmias).
Midazolam
Macrolide antibiotics may inhibit hepatic enzymes responsible for benzodiazepine metabolism, leading to increased plasma concentrations of benzodiazepines through reduced clearance, prolonged half life and increased volume of distribution resulting in benzodiazepine toxicity (CNSi depression, ataxia, lethargy).
Patients receiving concurrent macrolide antibiotics and benzodiazepine must be observed for enhanced CNS effects. Patients should be warned regarding the potential for drug hangover. Smaller benzodiazepine doses (dose reduction by 25% to 50%) may be required if the patient is receiving concurrent macrolide antibiotic dosing.
Theophylline
Caution should be exercised with patients receiving concomitant theophylline therapy as roxithromycin may increase theophylline levels, which may lead to theophylline toxicity.
Others:
The concomitant administration of cimetidine may increase plasma concentration of roxithromycin. Cimetidine inhibits hepatic microsomal enzymes and may reduce the metabolism of roxithromycin, leading to increased effects.
Concomitant administration of roxithromycin and ranitidine does not alter the pharmacokinetic parameters of roxithromycin.
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Thanks Daisy for sharing
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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
Not to hijack Lory's thread
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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