"Getting a Handle"

Caffeine has played a big role in my life for the last eight months or so, with no end in sight. However, there are small reprieves that show themselves now and then. As a matter of fact, I am beginning a "now", now, and it is good. Caffeine is easier than flagyli, but not a carefree walk in the park. Since I began with flagyl and only used caffeine after nearly five years, I can't say for sure that caffeine would have been easier then. It has its own problems - but problems associated with this protocol, at least for me, would never compare to what life - or the lack thereof - would be like without it. Heartfelt and eternal thanks to all who have had a part in bringing it to the world.

Last May (09) I began my days with 1/2 calleine pill and spent most of my day feeling vaguely - well, yuck - if not flat. I think we all know only too well the real definition of those scientific terms. After a month or so, I tried a whole pill, daring soul that I am. Same thing. It has taken quite a few months to get to where I was this past week and the one before - THREE caffeine pills each day. Maybe my mind has cleared to the point that I can see the effects more clearly, but I realized thia week that all this bears a close resemblance to a flagyl pulse. Each day is a little deeper and a little more effective than the day before. And somehow, the caffeine affects stomach bugs. I haven't figured that out yet and may not. I took lots of acidophilus, ate twice as much yoghurt, and blamed it on my new bottle of acidophilus. But I think the queasiness was related to the caffeine.

This morning, after NO caffeine yesterday, all is normal. That NEVER happened so fast with flagyl. There has been a small amount of discussion about the final amount of caffeine, with a possible ten. I won't even think about that yet, but I'm doing three comfortably - well, ok - so will "soldier on" at that level, till my body says "Please, can I have some more?".

Rica

Comments

Hi Louise       Before

Hi Louise      

Before I started the CAPi almost 4 years ago, I had thought that I would use Roxi.  I was disappointed to find out that it's not approved for use in the U.S., which really sucks...but I was able to go forward with Azithro and Doxi in the first 3 or 4 months and have used that combination since.  I added Rifampin about 2-1/2 years ago and still take that twice a day.  And now, I've been using Amoxycilling since July and taking everything with a 200mg caffeine pill every time.  It works out to 3 times/day. 

Of course, I also take NACi with every dose and I've now also added Iniosine too.  The Inosine is so that I can increase my serum Uric acid levels.  There are a number of studies that have been done which show that in the animal model of M.S., which is induced in part by lowering Uric acid levels, increasing Uric acid levels can counteract the symptoms of the animal model of M.S.  So, why not make sure my Uric acid levels are high enough. 

I have to be careful about it though as if I don't pay attention to my levels and get tested frequently, I could raise them enough that it causes Gout, which would be BAD.  Not going to do that if I can help it.  I got blood drawn on New Year's Eve and haven't heard back yet what my levels are.  My doctor has checked 10 or more of his M.S. patients and they were all very low in the normal range which is 2.5 - 7.5.  I'm guessing mine will be too but I will be watching for the information to come to either my mail box or my inbox so that I can know for sure.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John, you might consider

John, you might consider Roxi it was the macrolide of choice that Sarah used and I found that I made good progress on it.   Rifampin alone is not advised as it easy to develop resistance if taken that way.   No reason not to add Roxi or Azith even with the possibility of a caffeine combo.  Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Interesting and good news

Interesting and good news Rica!  I have been giving caffeine a try when paired with my abxi every day, three times a day, and a whole 200 mg pill.  Maybe that's pushing a bit too hard but it would explain my drastic decline over the last 2 or 3 months, perhaps.

Paul had suggested that I take just caffeine and rifampin, and drop/discontinue the other antibiotics but I never thought that was a good idea.  Still, I decided that continuing with the antibiotics while also pairing the caffeine I take with the timing of those might not hurt to try, and so I have been.  But if that's the reason I've been having the trouble I've been having, it's a high price to pay in the short term but potentially worth it down the road.

Any thoughts on this, from anyone, would be welcome, thanks.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Thanks. You might want to

Thanks. You might want to remove the "flagyli 500" from your signature.

I have had no flagyli since

I have had no flagyli since going back on abxi, which I stopped Jan 11, 2009.    After my two truly glorious months off abxi, I realized all symptoms were returning at an ever-accellerating speed.  Richard spoke to Dr S who increased my abx from my standard Doxyi, Rifampin, and Azithromycin to include Amoxicillini and caffeine, taking away flagyl in the same paragraph.  I also take as close to 30,000 B-12 as I can each day, almost never reaching my goal of it.

The "tail" of the caffeine is much, much shorter than that of flagyl.   Next week I plan to treat caffeine more as a substitute for flagyl and will take is for probably four days - until the queasiness gets really bad.  It is gone today.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica, thanks for sharing

Hi Rica, thanks for sharing your caffeine story. I noticed a sick feeling in my stomach after I began drinking two strong cups with my abxi. I did not have this yuck feeling before starting the coffee so I guess somehow the caffeine does affect the stomach. Do you use caffeine everyday or just as a substitute for flagyli? All the best,Patti
FMSi,CFSi, 15 years,CPni antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAPi end of Dec. 08 minoi.100 daily, azith. 250 MWF all supplementsi,compounded T3 therapy.

I'm not clear as to whether

I'm not clear as to whether you're on flagyli and caffeine simultaneously, or just caffeine.

Rica, as always, so

Rica, as always, so eloquently put. Thank you so much for your update. Bravo!!!!!!!!!!!

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,