Oh What A Feeling!!!! Pulses 21 and 22 in my review mirror and BAM pulse 23 smacks me in the butt! Let me back up a bit, I’m getting ahead of myself. With pulse 21 I had a lot of muscle aches which is actually a thumbs up in my book as you may have seen some photos of me on a bike. I chalked it up to a forgotten work out kind of muscle ache. Not like I’m doing something wrong, just a hurts so good kind of feeling. I’m now experiencing a very strange sensation called period cramps! I always thought I was one of those lucky ladies who didn’t experience those monthly girly issues. Who would have thought someone would be happy to feel the things that most people bitch about?! YEA for period cramps 
I’m feeling like I’m turning back the clock and I’m loving every bit of it. Plumper veins mean I’m not so cold all the time, letting my thermal underwear for winter use only.
Pulse 22 was rather pesky. My day one felt like day 7 with all the attitude x10. I had the appetite of a 250lb body builder and on several occasions even ate Ken under the table! Something is happening but I don’t know what. I will suggest however DO NOT ride a mall escalator going down by yourself on the last day of your pulse. I felt like I was Mary fricken Popins riding her umbrella over the city—way scary.
This brings me to the my current pulse 23 which I finished about 5 days ago. My Flagyli pulse started out very hard again. Die–off was bad, I was bitchy! Big B bitchy. Ken had this idea that Tinii would help me to feel better. We got a Tini script, the farm’acy only had 4 pills, but we took them and started after 3 days of Flagyl. After that first Tini pill I didn’t feel a thing - I was completely desensitized to the world. Real bad die-off that lasted about 2-3 hours then I had lunch and it all got better. So we ran out of the 4 Tini’s and I took another Flagyl and …. DON’T DO IT! I was doing the glazed over can’t find my way around my own kitchen look. It was like taking Flagyl for the very first time. I finished the pulse with Tini and ….. let’s just remember that Ken had this brilliant idea to help me feel better. Now he’s trying to blame the weather. Gotta love’em! Tini tastes better than Flagyl, big points for this. I'm now on Tini going Forward - thinking of giving Ken my extra flagyl's for fun! 
Happy Holidays to all, Kim
___________________________________________________________
RRMSii since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyli Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5. Can't wa
Hi Kim, aside from the
Hi Kim, aside from the complaint switching back and forth in the same pulse which, I'll take a guess when you went back to Flagyli all the tinii which has a longer duration in the system had not been removed and you may have been heading to double dosing. It will be interesting to follow your next several pulses and read your updates!
Still with your report of muscle awareness and uterine cramping it does sound that it is something to celebrate, more sensory awareness, less neurological numbness, wow really a plus type of awareness.
Thanks again for sharing your youtube postings, a real testimony to your improvements from my observations.
I find tinidazole, the generic name (Tindamax, Fasygyn some of the brand names) very easy on my stomach, generally am able to take it first thing after fasting all night without any gastric irritation and also as yourself no yucky taste. I do envy those that have no troubles wth Flagyl.
Bet you get no agreement from Ken regarding a course of Flagyl!
Wishing you and your family holiday joy. Louise
___________________________________________________________
6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
Hi Kim,Lol!
Hi Kim,
Lol! Congratulations on your cramps, I think?
And about Mary Poppins, I beg to differ. I'm thinking there are fairly clear signs she was Flagyli pulsing:
http://www.youtube.com/watch?v=2T5_0AGdFic
Hang in there. Happy Holidays to you as well!
___________________________________________________________
Treatment for Rosaceai
KimYour post brought back
Kim
Your post brought back lots of memories - and I DO NOT mind that they are memories, meaning they are IN THE PAST! I suppose some day much of this will seem funnier than it does now.
My curiousity is still there about the flagyli/tinii dispute. I will never know, only suspect. that I would not have made such dramatic progress if I had done tini instead of flagyl. The - as Norman calls it and rightly so - "tail" of flagyl is so long that we don't really know for weeks or months how either affected us. I have been off of flagyl (!) for three weeks and know that it is still clearing. The weirdness/crankiness is part of the package. Richard says it doesn't affect "normal" people that way.
Rica
___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Rica, how do you explain
___________________________________________________________
6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
I don't. Obviously it
I don't. Obviously it works - they both do. My question is: does one work better or faster than the other? If I were a doctor who had been hands on as DW and Stratton have I wouldn't have to wonder, and could just accept the evidence. I seem to be either too dumb or too stubborn to do that! But, my self-experiment is over with that, and, for me, it was successful. I am never-endingly grateful. At the time I began the flagyli, I'm not sure I was clear-headed enough to do anything but the very straight path. I am progressing on Doxyi, Amoxi, Azith, Rifampin, and caffeine, so maybe it is not entirely done!
Rica
___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Well I have always seen both
Well I have always seen both of them as equal alternatives in the printed information for the Stratton/Wheldon CAPi as outlined in the information pages contained on this website and Wheldon's website.
And therefore, it has never never crossed my mind that one was more effective or worked faster and both were viable options, however that some folks have reported tolerating Tinidazole more comfortably that Flagyli as I have read here over the past 2.5 years. And Yes they both work!
Rica I am thrilled that you are progressing and tolerating your doxyi, amoxi, azth, rifamp and caffeine regimen, you are one determined trooper whose commitment is paying off!
And Kim you sure are showing improvement is the ways that you have reported in this post so cheers for both of you! Louise
___________________________________________________________
6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
Hmmm... I believe painful
Hmmm... I believe painful menses can also be a symptom of porphyriai. (I had cramps as a young girl/woman and they were intolerable to the point of having to go home from school)
Funny that you are enjoying them!
Pulse on Kim, kill the buggars....
JeanneRoz
___________________________________________________________
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi;250 AzithM/W/F; Tindamax Pulses, B12 shots,
Armour ThyroidERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<FYI, especially Louise
FYI, especially Louise -When I was diagnosed with what is often met with political uncertainty, aimed at ILADS, etc. by Igenex labs, seemingly meeting all CDC standards and termed a positive western blot with subinfections, I had to sign a waiver for my lyme literate doctor in U.S. saying flagyli is never prescribed(causes cancer in labs.) Only tinidazole is ever prescribed! So for me, it was way more than tinidazole being easier on the patient.Never flagyl.
I have, however, used both and have not noted big differences between the two.
Interesting but I'm sticking with tinidazole. My lyme doctor has done research for many years and is not easily convinced.Flagyl is cheaper and prescribed much more often than tini. Is this yet again, a pharmaceutical hierarchy?Who knows?
___________________________________________________________
diagnosed MSi Jan.2000 , chronic neurological lyme disease Nov.2002.
doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,
Loulou, thanks for sharing
Loulou, thanks for sharing that information. Flagyli is several decades an older pharmaceutical. And yes at Tindamax the brand and only form available here, least in NorthAmerica, does seem seems to otragiously and unwaurantedly expensive on a cost comparison, pill per pill basis, I know I have done the prepayment of it before insurance reembursement and it is outragious for 60 tablets, the 80% payment co-pay was over three hundred dollars (thank goodness that is 6 months worth of pills). My own experience with the political medical community limitations was with azith, my state allowed the insurance company to say that any more than 6 azithro caps in a months' time was not medically indicated and therefore they could dis-allow 6 caps forcing the plan member to pay 6 doses out of pocket and that 6 doses was as much as 6 weeks of brand name Roxi from across the the pond. I have not heard of any other States that it is legal to limit Azithro but it is here! Now I am on Clarithro to get around that limitation aimed at those with long term Lyme treatment by an insurance mandate!
Yes Flagyl is cheaper for those that detox it easily. Interesting, Flagyl was/is used by vaginal protozoan infectionsi (communicable) and even in the 1970's had a reputation for great effectiveness for that illness but with horrific side effects. Your right, likely those with those side effects were the patients with detoxification challenges and difficulties and/or co=existing CPni that was not even discovered back in those days.
Anyway, I envy those that can take Flagyl with little of the side effects that can be atributed to the normal removal of it from the body, certainly a more cost effective route which is certainly a consideration, and if you were toughing it out for a single course of treatment no big deal, but if you need it repeatedly or daily as in some advanced protocolsi then it does become an issue and it is good that there is another option, even at the expense.
Everything in medicine is a trade off that is for sure, one has to weight their options in all cases. I wonder how expensive the Tinidazole is North of the border Loulou? I think it may be prescribed more because there may be better compliance for the full course, compliance or completing your prescription is a well know reason for treatment failures of all kinds in medicine. And not to play down if it is easier to tolerate the prescribing provider is going to get less call back with complaints about the nasty side effects that many experience. Certainly nothing is simple but there are many ways to look at all questions.
I go with both are effective, and if you can metabolize and detox flagyl without being very challenged by the sometimes more dramatic side effects, then certainly it is a way to go. If you have the untoward generally accepted and noted side effects of Flagyl (not the expected therapeutic effects, which are very similar from taking both, and rightfully so) then the option to substute Tinidazole with confidence is something that was not available 20 years ago!
Loulou thanks for giving me this added perspective in the Tini/flagyl discussion. Louise
___________________________________________________________
6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
First, flagyli versus tinii:
First, flagyli versus tinii: I only started taking tini after more than a year, so I can't honestly claim my improvement was due to it. It didn't slow or hinder my improvement, though and it tastes so much better I was less inclined to stop a pulse early. Logically, they are both prescribed for the same things and tini is a newer drug, so should be an improvement.
Physicians are creatures of habit, though and David never prescribed tini until I made him get some for me. He carried on using flagyl for himself because it was less expensive. For this reason he gives a prescription to patients for flagyl more often than tini.
Second, I used to have frightful menstrual cramps right from the age of 13 and when they became less I was glad. I wasn't thinking it was due to numbness then but now, after having a hysterectomy and starting and then completing CAPi, every month I can feel when I am ovulating. When I stop feeling that I will have to take care to distinguish between the menopause and my MS getting worse, but it should be obvious..........Sarah
An Itinerary in Light and Shadow
___________________________________________________________
Scary Mary, that was good.
Scary Mary, that was good. Escalators should have signs to warn Flagyli users. Ken
___________________________________________________________
In pursuit of ABX
Don't Allow What You Know To Get In The Way Of What Might Be
Hi Kim, My experience is
Hi Kim,
My experience is that it may not be a good idea to switch drugs within the same antibiotic category from a longer half life to shorter half life drug. I think that Cpni tends to attempt to pump out the shorter half life drugs more aggressively and this may be the cause of many of the side effects as the active transport of molecules across the cell membrane uses up much of the available ATP. This may induce production of more HSPi-60 and/or lead to porphyria as hemei production is interrupted by lack of ATP.
Some examples of changing drugs that might be avoided:
Macrolides
Zithromax (68 Hr) -> Biaxin (3-4 Hr)
Nitroimidazoles
Tinidazole (12-13 Hr) -> Metronidazole (6-7 Hr)
Rifamycins
Rifabutin (48 Hr) -> Rifampin (3 Hr)
Probably metronidazolei is a little more effective as an adjuvanti as it may "stress" Cpn more. However every part of the therapy is a trade off between speed and side effects and if I were taking one of these I would personally choose tinidazole without question.
- Paul
Kim, our first really cold
Kim, our first really cold and icy winter's day yesterday made me think of this: as well as menstrual cramps I used to be ultra itchy if I wore wool next to my skin. This also grew out of in my twenties and at the time I was glad, but now it is back full force and cashmere is the only woolly thing can wear without an underlayer.
Well, its a good excuse to buy cashmere and silk thermals.........Sarah
An Itinerary in Light and Shadow
___________________________________________________________
Sarah, that winter mess is
Sarah, that winter mess is headed straight to us TONIGHT!! they are predicting 2 feet of winter bliss by tomorrow. I'd definatly choose cashmere over wool any day! I wonder if these skin conditions are related to detergents or moisturizers. Ken had a bit of the itchy problems including itching to the point of blood! His doc prescribeed a phosphate lotion that helps immensly. just a thought.
Kim
___________________________________________________________
RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax
FlagyliCopaxone,Avonex,Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5. Can't waThanks for the suggestion,
Thanks for the suggestion, Kim! I don't think my itching is that bad, to the point of blood, but I know two people's whose is, so I'll phone them and tell them to try a phosphate solution. Another person found her skin problems improved greatly with chlorella, but her brother, one of the others can't stomach the stuff.
You are right about detergents and moisturizers so I always wash wool in detergent free liquid and avoid anythng perfumed.
Looking at the weather forecast, you are getting even more winter bliss than us, but these are the times when old houses with tall windows like ours, probably aren't the best idea!.........Sarah
An Itinerary in Light and Shadow
___________________________________________________________
Sarah, We are getting a
Sarah, We are getting a hefty dose of the white stuff but we so love it! Ken is out shoveling and i'm in baking,wrapping gifts and enjoying the fire. oh yea, taking my vites and drinking green tea too --- keeping up with the protocol even if you feel like your in siberia for a day.
You are SO AMAZING and INSPIRING to me! Thank you for keeping tabs with all of us folks here........
Kim
___________________________________________________________
RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax
FlagyliCopaxone,Avonex,Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5. Can't wa