Update from Finch

Submitted by Finch on Tue, 2008-06-10 19:13

Hi everyone - I just wanted to check in and let you know I'm stll working at this!  Here's what I've done with the Flagyl so far:

Pulse 1 – 3/28 (one tablet) 

Pulse 2 – 4/18 & 4/19 (1 tablet per day for 2 days) 

Pulse 3 – 5/9 to 5/11 (1 tablet per day for 3 days) 

Pulse 4 – 6/1 to 6/4 (1 tablet per day for 4 days) 

Nothing really noticeable so far that I can put down to the Flagyl.  I’ve been very, very fatigued.  I’ve been very sleepy during the daytime.  I feel as though I could sleep around the clock with short periods of being awake.  I manage to get through things when I need to.  I’m getting through work but not feeling well at all when I’m there.  I’ve had more headaches again.  I get stomach pain during the first week following the pulse.  Also, my upper respiratory symptoms increase during that week.  After that, I just feel totally drained, weak, exhausted, and in overall pain.  It gets slightly better, then it’s time to go again. 

I saw my CFS doctor in May.  He’s “not impressed” with the CAP, but he agreed to continue prescribing.  I guess he thinks people get better fast using this.  He said I'm his only patient using the CAP, and I'm basically on my own - my own doctor.  Then I had to pay him.  He thought I was taking an awful lot of supplements, too.  He gave me information on a simplified methylation protocol developed by Rich VanKonynenburg that I’m also giving a try right now.  It can also cause detox, so I may be setting myself up for some rough times.  I’ll just have to continue to take it slowly and see how it goes. 

I’ve been having a lot of trouble with GERD.  I decided I needed to stop using Nexium.  My acupuncturist suggested betaine, and I was having some success, then I got a different brand, and things went all bad.  I’m still trying to figure out how to live without Nexium.   

I plan to do a better job on the anti-porphyria measures in the next couple of weeks.  Also, I need to do some traveling, so my next pulse will be delayed a bit.  I’ve been taking the pulses every three weeks, and maybe that’s pushing it a bit too hard anyway.  I think I need to give my body some time to get some of the toxins flushed out.  The next pulse will be a full five days, but at only one tablet per day.    

 

I realize this is a pretty dull post, but I just wanted to get on the record what I've been doing so far, if only for my own future reference.  I hope I didn't put everyone to sleep!  Then again, sleep isn't such a bad thing, is it?

 

Thanks!

Finch  

Hi Finch,

This isn't a dull post at all!  This is great information for someone coming up behind you in treatment.  

I also have GERD to a troublesome degree. Do you make dietary concessions for it?  I find that can help me alot. I've opted off taking Rx meds and grab OTC Zantac now. It works on the spot with less concern for side effects.  I have a tendency to often get it the worst at bed time and have taken to propping up my upper body ever so slightly with an extra pillow. It doesn't take much just change the flow of gravity a bit.  The GERD splashing can set the stage for esophageal cancer later on.

Have you tried, or do you take, B12 shots for your fatigue?  That may help... 

--
Corinna. May 2008. NACx2400mg, D3x5000mg, B12x1000mcg. :: Allergies, Generalized Inflammation/Eczema, Chronic Sinusitis, BiLat/Trigeminal Neuralgia, FM, CF, Arthritis, Rosacea.

Corinna | GFA. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Thanks Twickle Purple, and it's nice to meet you!  I haven't been hanging around here as much as usual lately.  I guess maybe I'm just feeling dull - I'm glad you didn't find my post to be so!

Thanks for the GERD tips.  I'm so used to using the Nexium that I forget about the dietary concessions sometimes, but it does seem to come and go for no apparent reason, and it usually happens in the afternoon or later at night.  I do find the OTC Zantac to be a help, but I try not to use it too often.  I know the GERD can cause big problems if you let it go unchecked, which is why I was so happy to use the Nexium, then I found out all the problems that can be caused by having no stomach acid!  There are so many ways we have to walk a fine line with that. 

I've never tried B12 shots, but I do use the sublingual B12 as recommended in the protocol.  At first, I found it to be a great help, but not so much lately.  I do notice when I miss it though, not only with the fatigue, but with pain. 

Thanks again!

Finch - Western PA USA

ME/CFS since 1991 - CPn dx 6/07 - began Cipro 1500mg per day - added NAC 7/07 - switched to Doxy 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

 Finch- glad to see your post! I read it as "steady" not "dull." Maybe you are responding to your doc's implication that the CAP should be more dramatic in results? Like your progress is dull compared to his expectations? Your steady approach is what will pay off, given how sick you were at start. I've heard good things about the methylation protocol as an addition, so this might be better than just adding more B-12. Others have reported some detox at first, but then it really can help with keeping up with detoxing from the CAP. Steady on!

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tini 1000mg/day pulses; Vit D2000 units, T4 & T3

 

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 Jim - and thank you for the affirmation on the methylation protocol.  I didn't realize others were using it as well, and I was afraid I might be making myself a guinea pig.  I'm glad to know it might be a helpful addition.  That's what I was hoping.  I think it is knocking me down a bit right now, but I did think it sounded like something that could be good together with the CAP. 

Finch - Western PA USA

ME/CFS since 1991 - CPn dx 6/07 - began Cipro 1500mg per day - added NAC 7/07 - switched to Doxy 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

Hey Finchy!

glad to read your post!  sorry about your Pens, they are young yet & they did a good job against the red funny pants!  I was rooting for them right along with you!

Keep on & take your moppers.  My schedule is messed up & so I haven't taken my usual dosage & started pulse #11 today with 1 gm of flagyl.  I am feeling it in my lower rib cage left side so I am upstairs to down some Emergen C as soon as I post this!

Keep up the good work!

CFIDS/ME 32 yrs, FMS, IBS, EBV, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Hey Ruth - thanks for the condolences!  We really had a great ride this season.  Only two teams get that far, so they have a lot to be proud of.  The old guys in red pajamas are really very good, but now our guys have gained some experience and showed they really can play with the best.

I am increasing the moppers.  I used charcoal last night and know it was working to clean things out by this morning.  I need to get some Emergen C.  I haven't worked hard enough to find it yet.  I asked at my pharmacy once, they didn't have it, and I really didn't look aywhere else.  I'll have to try harder since it seems to be something people really find to be helpful.  Also, I'm packing up lots of glucose tabs to take to work with me (I'm out of Smarties).  Hopefully all this will help.

Best of luck with Pulse #11! 

Finch - Western PA USA

ME/CFS since 1991 - CPn dx 6/07 - began Cipro 1500mg per day - added NAC 7/07 - switched to Doxy 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

Finch- Walgreen's pharmacy, Costco, almost any health food store and even some grocery stores will have Emergen-C. Call around. Also easy to order over the net. 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tini 1000mg/day pulses; Vit D2000 units, T4 & T3

 

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

Thanks again, Jim.  There's a Walgreen's here, so I'll check with them today! 

Finch - Western PA USA

ME/CFS since 1991 - CPn dx 6/07 - began Cipro 1500mg per day - added NAC 7/07 - switched to Doxy 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

Hey Finch, nice to have you posting again.  Glad you are taking measures to get that slow creeping porphoria under control! 

Louise USA.CFS.CPn Positive.BbPositive.WheldonCAP6/24/07.NAC,Doxy,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent  use of Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxins. 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Finch, good to hear you're still trucking.  I have not been so great either on CAP so i know where you are coming from.    Re. the moppers - ATM I take charcoal every day!  Often twice a day.  I felt I had to do something about how I felt.  Jim suggested it to someone else to do it for a week and see.  It does seem to have helped me doing it on a regular basis.  But I too suffer from tiredness and weakness and pain in my legs still if i do anything involving a bit of exertion.  So lets just wait and see .... all the best.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.

Finch, it is good to hear from you, and this is definitely not boring. I, too, am told by my doctor that I am my own doctor. He, too, thinks I take a lot of supplements, but writes it ALL down. The fatigue is a major part of this and for me continues to this day, but is 10% what it was at the beginning. I believe it has to be from the work that goes on in our bodies. It may be a long time until you realize that you are on a higher plane than when you began - several lifetimes ago - but it is comparable to the "aha moments" at the first readings. Even now, after 45 months, I am tired after flagyl.

 

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 51 pulses NC USA

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

I just wanted to update due to the fact that I've had a couple of better days.  Thursday was the best day in quite some time (excluding the migraine and the sore throat and the chest tightness and pain on taking a deep breath in the evening).  The reason it was better was that I didn't feel like I had to go to sleep all day long.  The fatigue was noticeably less.  I was actually able to do some things in the evening. 

Yesterday was also not as bad regarding the fatigue, although not quite as good as Thursday was.  I had been using the charcoal, and I added the EmergenC.  I used some glucose tablets on Wednesday, but not Thursday or Friday.  I guess I got some of the junk cleared out.  We'll see how it goes today, as I'd really like to accomplish some things.  I'll try not to push it too hard, though!

Finch - Western PA USA

ME/CFS since 1991 - CPn dx 6/07 - began Cipro 1500mg per day - added NAC 7/07 - switched to Doxy 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.