Blurred Locomotion, Fuzzy Reality

Submitted by katman on Tue, 2007-05-08 13:52
It has happened again - tinadazole is easy for me but the aftermath is no gain. Last year I did three pulses of tini because of the National Dairy Goat Show - I simply did not have time to be "out of the loop" - (loopy, that is!) so it was an excellent time to try this magical drug that didn't send you reeling to the bottom of the well. After days of waiting for events to occurI realized they weren't going to. They didn't; nothing happened that I could tell, except that my walking became - well - mushy. So I went back to flagyl. I have done nine or ten of flagyl with very clear- cut inprovements since then. Spring came (?) again, bringing 23 kids (one of these days, we will figure out what's causing that!), hours in the barn, classification, etc. and I used tini again - twice. Nothing happened except that my balance was not very good, I was never airborne, and I thought better of climbing a ladder, something that has not bothered me for months. After a week of status quo physical ability I began a nightly flagyl pill, thinking one a day every day would be manageable. Boy, is that funny?! The first was 500mg and each succeeding was 250mg, because 500 was out of the question. It is undoubtedly the increased Vit D that made it feel like a full pulse (for me 375mg 3x day, 5d) but the point is I think I can tolerate 250 mg each day and still function. My question for the community is: would 250 mg per day be a beneficial and useful dose or do I need to wait for a time when I can take the time to be at my usual level of more-than-usual disability? I can certainly feel this amount.
Several people, especially Jim, Guner, have been doing daily flagyl. I believe there are a few more who are trying daily doses. That says a lot about how far we have lurched down this long path.

I am taking one 500 mg flagyl a day every day. More than one pill a day makes me vomit out of control for several days. I am getting better results this way than with pulses or with tini. It will be useful and interesting when we learn how low a dose we can take and it still work. Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline, Zithromycin, Flagyl

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

Rica, so glad to hear you are settled on the Flagyl effects. For me it is the same--undeniable improvements after Flagyl pulses, but it is different for everyone. For some, Tinidazole is the only tolerable one of the two. I wish it made more sense to me, but I have been kinda foggy lately, so am content just knowing what works for me. It is very interesting how so many here are having tougher pulses with increased vitD. Wow, pretty much across the board! Spring is such a beautiful season..more time to lavish in the great outdoors and hang out with your cute kids. I'm sure you're enjoying every minute of it! Best wishes to you and R. kk2 :)

 

On Wheldon regime [Doxy, Azith, and Flagyl]  for rrms since October '05.  EDSS was 6.5, now 5.5.  United States.

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

 I'm on a couple days of break from the daily flagyl so currently "on break." Reaction built up since I started daily Tini in February, and switched to flagyl mid April. This all may have been potentiated by D3 (2000mg/day). Flagyl did seem more potent, or at least differently potent! 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl daily (Continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hi Rica,

I'm taking 400mg a day with a 5 day pulse of 1200mg a day every three weeks.   During the down time of 400mg I am still getting regular die off, but the side effects are bearable, even the foul taste is tolerable.   The continuous dose also has the effect of making the pulsed dose kick in much sooner than when I was just doing a pulse.   My 'pulse' reactions are much more like the start of the treatment than the latest one I did before starting the continuous.

I seem to be getting some discomfort/pain in areas that have appeared untouched until now.   In the veins of my legs, fasciculation in my thighs and lower abdomen.   I am quite encouraged.

I'd be interested to hear how things change for you if you take the metronidazole again.  This may be relevant to Ella.   The main reaction she seems to have on tinidazole is loss of balance and weakness.   This disappears very quickly after she stops taking the tablet but it may not be as effective for her as Metronidazole in terms of physical improvements.   We are not contemplating changing things just yet as we have only just reached some sort of stability, but for the future it might be useful knowledge.

 

Great news about your kids.   I have a friend who has a small flock of sheep, usually she has a great crop of lambs each spring (18), but only 5 thins year, lots of still borns.   She was told that the weather has not been good for sheep, too dry???   Maybe she should switch to goats too.

Michele: Wheldon CAP1st May 2006 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Cap Started 16 March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I have been taking flagyl (1500mg) daily since september 2006 and i took a break from it 2 times in the middle . I can say it was hard to handle the die-off symptoms in the beginning ,i felt too toxic and had to take charcoal daily. But now i don't feel toxic and i don't take charcoal. I think cpn load got lowered faster by daily flagyl ,but i still feel the strange activity in my middle and lower spinal cord area which indicates that cpn bugs are hard to eradicate and are stubborn organisms.: ) I really like this continuous protocol .

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day(Continuous protocol) - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Can anybody convert my D-3 vitamin pills 0.25 mcg to the units ? I have been taking 0.25mcg D3 pills for the last 18 months and i still don't know if it is a proper D3 dosage in units.

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Guner, 10 mcg equals 400iu, so the dose recommended by DW and many others and the dose I decided to take before starting on CAP, is 100 mcg or 4000iu a day.  Is that what you are taking?   As for all you lot doing continuous flagyl, I just couldn't.  I'm glad you are feeling the benefit, though, but I certainly am glad it isn't a necessary thing, although it seems to help some.  As to how much you should take, if its continuous it probably accumulates in your system, so you could take less per day than you would when doing a pulse.  I don't know, I'd sooner get it over with in five days, personally!......Sarah   An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 Thanks Sarah, it is written alpha D-3 0.25mcg on the label , i think i better increase my D-3 dosage a little bit..Image removed.

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day(Continuous protocol) - Istanbul / Turkey

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)