Tinidiazole, I am wondering if the fever that I have today might still be immunei response to pulse #4 started 1/301/08 and finished 2/3/08. That makes today day 15 since the start of the pulse.
I thought I was breezing through a viral cold, Monday and Tuesday, today I wake with fever 99.7, chills, headache, cold hands, achey shoulder, upper chest, neck area, in the locations of the lymph system. Also cold hands and feet, more fatigue.
So I wonder there has been talk that Tini takes longer to work and works longer after the pulse. Any folks that take Tini regularly have any comments to share about how it works for them? My first full pulse I had a higher fever on day 9 and a slight one on day 12. This may be a combination situation perhaps.
Has anyone had die-off so late in the cycle from Tini that they have identified?
Thanks for any insights you might share.
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Louise CFSii, CPN+/Bb+,Wheldon CAPii 6/07, Cholestyramine 1-2 pks @ HS for Porphyriaii & Endotoxinsii PRN, Doxyii 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
Louise CFSi/ME.
Louise
CFSi/ME. CPnPositive.BbPositive. Started6/24/07WheldonCAP. OnDoxy, Roxi, NACi, Tinii, 2/3/08 Tini Pulse #4 completed. Post pulse day 15 now. Cholestyramine 2 packets at Bedtime for Porphoria and Die-off Symptoms Of Fatigue, Brainfog, MoodDisturbances, BalanceFromApoptosis.
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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
Louise, I have tried only
On Wheldon regime [Doxyi, Azith, and Flagyl] for rrmsi since October '05. Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; EDSSi was 6.5, now 5.5. United States.
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Wheldon Protocol for rrmsi since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qd for Babesia.
Thank KK2, can you recall
Thank KK2, can you recall how soon that set of symptoms set in for you? During the period of taking the tinii pills or some time after you stopped?
I am trying to sort out this possible viral cold, in the past I rarely got any fever with anything for years. And actually rarely got ill with upper respiratory infectionsi (just cooking up a lot of stealth CPni though). I have quite a bit of Tini from my rx, enough for 9 to 18 months depending on the spacing. It agrees with me in general, can be taken on empty stomach without consequences and has no after taste.
I do plan to try Flagyli after a bit of time pases. And maybe alternate as some have suggested. I have that pesky Lymebug to contend with too so it may well be that in it's cystic form that is being sent on to antother reality
It is good to have a few choices of appropriate drugs to get the job done! Waiting for my Roxi to arrive, hope it comes before I travel to Boston next week.
Wondering if I should cut back to once a day until it arrives or go off for a few days any thoughts from the peanut gallery? all suggestions of course are just opinions, humble opinions, but there are some very bright and knowledgeable folks that hang out here. This impressed me even initally when I was in a high dose doxyi stupor.
Louise
CFSi/ME.CPnPositive.BbPositive.
Started6/24/07WheldonCAP. OnDoxy, Roxi,
2/3/08TiniPulse#4 completed.
Cholestyramine 2 packets at BedtimeforPorphoriaandDie-offSymptomsOf Fatigue,Brainfog,MoodDisturbances,BalanceFromApoptosis.
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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
Louise, have you read the
Louise, have you read the last paragraph of this blog by Joyce? Yes, of course you have: you posted on it, but I just thought what she is talking about might help answer your questions, since there isn't that much difference between metronidazolei and tinidazole apart from the taste..........Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Well Sarah, here is my
Well Sarah, here is my update, my fever is still minimal 99.5 F. and less chilly and less flushing and no nasal drips and clear nasal passages and much less dry small bronchospasm like cough, no phlegm from the lungs, less headache. I am beginning to vote for Tinii hammering the Bb cystic form and unleashing those little swimmers and my immunei system acknowledging them and my Doxyi, Roxi, exterminating them.
In my early treatment I know I had fevers I just did not track them. Reason; did not want to know, no other alternatives, sometimes ignorance is bliss.
So maybe I have two weeks to consider when taking my Tini. Like don't plan a special time or such perhaps wait till 21 day. and then start the pulse again around day 28. Trying to figure out an ebi and flow that can work for me. And if it takes me another year or two to get the job done well, what else am I going to be doing with my time as a CFSer?
Still I would like to hear more from folks that are going with the Tini option and their observations. Louise
CFS/ME.CPnPositive.BbPositive.
Started6/24/07 WheldonCAP. OnDoxy, Roxi Tini 2/3/08TiniPulse#4 completed. Cholestyramine2 packets BedtimeforPorphoriaandDie-offSymptomsOf Fatigue,Brainfog,MoodDisturbances,BalanceFromApoptosis.
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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
Metro vs Tinii... Hi
Metro vs Tinii... Hi Sarah.... I hope I am not hijacking this thread, LOL but with reference to your statement that "there isn't that much difference between metronidazolei and tinidazole apart from the taste"... what about the discussion that was held on this link? Seems like some people have had less difficulty starting out with Tini and then moving to Flagyl after their cryptic load has been somewhat decreased? Again perhaps a difference in reactions based on having MS verus CFSi/FM? Just curious.....
http://www.cpnhelp.org/flagylvstinidazole
Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupI hope you are feeling beter
I hope you are feeling beter soon. I probably don't have to remind you to take your toxin sopping aids which will help.
Blessings
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08I've been on Flagyli
I've been on Flagyli pulses since Oct. I've had a mild depression since starting flagyl. I got a script for Tinii. I'm seriously thinking about using tini for couple of pulses to see if some of depression lifts.
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun,
estriol, progesterone, synthroid, and pulsing w/flagyl.___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 2400mg, doxyi 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli pulses
Thanks Sharon for sharing.
Thanks Sharon for sharing. I will be looking for your Tinii pulse reports!
Louise
CFSi/ME.CPnPositive.BbPositive.
Started6/24/07WheldonCAP. OnDoxy, NACi,Roxi,2/3/08 Tini Pulse #4 completed.
Cholestyramine2packets at BedtimeforPorphoriaandDie-offSymptomsOf Fatigue,Brainfog,MoodDisturbances,BalanceFromApoptosis.
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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
I was just reading some of
I was just reading some of the post that people have referenced on this post. I think I have had the anxiety as well. I find myself taking deep breaths all the time. It's like a need a deep calming breath to relax my insides. I get this way when my TSH goes above 2. but my tsh is 1...i'm not wondering if it is the flagyli now. the last flagyl pulse I did, I got severe pain in my thigh muscles. (i felt like I had worked out and should have the thighs of arnold). here it is 4 weeks later, and the ache in my thighs is almost gone. ok, i just talked myself into switching to tinii for couple of pulses.
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun,
estriol, progesterone, synthroid, and pulsing w/flagyl.___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 2400mg, doxyi 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli pulses
Louise- I'd vote for the
Louise- I'd vote for the tinii hitting your cystic Bb along with the Cpni. Temp elevation is classic with Bb herx (which is a true herx without the porphyriai add on!), so I think a mild fever is good news. It means your immunei system is working! Like Sarah, I've always tolerated the tini better than the flagyli: little nausea, less dosing, no depression.
CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3
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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, I am quickly going
Jim, I am quickly going down with the Temp. It went up to 100.5F then began to decline. Now it is down to 98.5F heading back to the 97F range that I usually run.
I have less of the bronchitis like dry unproductive cough may have been coincidence and with the "cold" too. Two pulses ago I did not have a cough, just the fever and that was higher, I believe 102F a the peak. And it too was short lived. That was day 9 of the pulse. This was day 15. I decided to take an extra doxy with my evening dose to catch any swimmers that may have been released. The cystic form of Bb released by the flagyli/tinii is a filamentous form within the cyst as I understand it and it is mobile just waiting for friendly conditions (such as you stop taking abxi). Very clever critters these stealth bacteria. Facinating, except for the fact that I have them.
I too like the twice a day dosing of Tini and the fact that I can take it on an empty stomach and have no nausea and I was concerned about possible depression. I may switch off after a time and maybe even alternate after a while. Many of us CFSers are a tender canarie like lot!
LouiseCFS/ME.CPnPositive.BbPositive.Started6/24/07WheldonCAP.OnDoxy, Roxi,2/3/08TiniPulse#4 Cholestyramine2packetBedtimeforPorphoriaandDie-offSymptomsOf Fatigue,Brainfog,MoodDisturbances,BalanceFromApoptosis.
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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
Ella's MSi like symptoms
Ella's MS like symptoms always come some 8 to 10 days after the end of her tinidazole pulses, they usually take a week to resolve themselves.... and then it is time to start again. She says she feels at her best for the first two days of the pulse, after which time she gets the usual nausea and strange 'distanced' feelings.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006