I was reading back thru my blogs to see what caused me to decide when to stop the last pulse at 2 days. So far, I'm halfway thru day 2 and I'm feeling OK. Actually, I may even be feeling a bit better than I did before starting this pulse but that might be stretching it, so I think I feel about the same as before pulsing. Looking back in my blog I wasn't feeling all that great before and then pulsing magnified it so I stopped. It felt like it took forever (about 3 wks) before I felt like I came back to my starting point, pre-pulse.
My bowel symptoms have improved and I think the cholestyramine is helping. (Thanks Louise. I appreciate your persistent suggestion.) I'm taking SAMe during pulsing too and Drenamin and I'm not using glucose. I can't bear to gain the weight like the last pulse. Hopefully I won't need the glucose this time.
Maybe I'm more mindful this time of what to expect and how to handle the moppers better too... who knows... but so far, I feel like I may be able to go beyond the 3 days. How does one decide besides nausea? I don't want to overdo it but OTOH, if I can pulse longer than 3 days, I would like to try, especially since the time in between pulses drags on forever, waiting for that feeling of returning to pre-pulse or hopefully even improvement.
So my question is, would I be overdoing it if I feel ok to do the whole 5 day pulse this time? TIA 
Update - Monday, October 13, 2008 - Completed 5 day tinii pulse
Well, I did it! I completed a full 5 day pulse! I can't even begin to tell you all how surprised I am that I was able to make it thru considering my 2nd pulse of just two days.
I feel I've had some minor symptoms but nothing too severe. I think it's so important to treat the porphyrin symptoms effectively.
Main symptoms during and some still lingering after pulse:
Sore and almost infected feeling of rt side of gums, waning now
Headache (gone now)
Sore spot on sensitive area of psoriatic lesion feeling much like fungus/yeast, but minimal
Slight bowel changes moving towards IBSi but very mild
Moodiness but minimal
Mucusy thick saliva and some nasal drip
Allergy/nasal symptoms, minimal but slight increase
Sore breasts
Achy knees, mostly gone now
Update - Monday, October 20, 2008
Symptoms are still lingering but my energy is much improved. I wanted to add that I think the sun exposure I'm getting as I work on my pool outdoors in 90+ degree spring like weather might be exacerbating die off which feels much like seasonal allergies.
In addition, psoriatic lesion are clearing with the use of Dovonex, a synthetic D3 cream and apparently, this pulse did not exacerbate it. When my skin is in a flare, nothing really helps much.
___________________________________________________________
NACi 2.4g, Zithii 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSii/FMSii, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
The answer is, no one
___________________________________________________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Reenie, if you can, keep
Reenie, if you can, keep going. I would have had I not been vomitting. I have to be able to function and one cannot if they are leaning over the side of the proverbial ship. I don't think charcoal agrees with me. I took it two hours after the flagyli and then would really start to feel sicker. I think I might change my mopping practices next pulse.
Hopefully you will kick some serious Cpni "hiney" this pulse. I hope it doesn't land you on yours though. Good luck comrade.
___________________________________________________________
SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month
Mac, Actually, 2 days was
Mac,
Actually, 2 days was my max last time but as I said, I was already feeling puny by this time and maybe even before this time, last pulse.
But I agree you can't unring a bell. OTOH, I got soooo sick my last pulse I was about to quit CAPi and thought I'd NEVER be able to pulse again and so maybe I'm more prepared for the worst this time.
Like Tody says, if it wasn't for the nausea, she would have done the whole darned pulse!
Tody,
I felt sicker too taking charcoal and cholestyramine earlier in the day so I only take it at bedtime now and sleep thru it's mopping. It might not get the porphyrins immediately but they supposedly make one sick by recirculating so I don't think it matters what time you do the mop up as long as it works.
"Clean up on aisle 3"
___________________________________________________________
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
I almost tossed my cookies
I almost tossed my cookies in Boston Pizza last pulse. I felt the saliva accumulating in my mouth and I started to pray, oh please God, not here. My girls insisted on going out for dinner when we had made a trip to the city for my daughter's orthodontic. I ordered soup as I was so ill and it came and it was a very thick cream based mushroom soup and it was too much for my ailing system. Let's just say, it will be a cold day before I will eat mushroom soup again. Ugh!
___________________________________________________________
SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month
Tody, I know what you mean
Tody,
I know what you mean about certain foods not sitting right. Heck, I'm even too chicken to try Flagyli!
I mainly had loss of appettite as aftermath of the tinii pulse and I had to force myself to eat light foods.
I have some frozen home made chicken noodle soup that I may take out of the freezer for later on this week. I think that would sit all right. Also, bouillion powder with a scrambled egg in a cup of boiling water. I make that sometimes when I'm sick and need something hot and nourishing.
I also have a protein supplement for my poor sick doggie with an absorption problem so I may try to use that too. It's pretty benign. Oh and I have some ginger tea I forgot I had in the cupboard too.
___________________________________________________________
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Hope things are going good
___________________________________________________________
FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF
MM, Sunday will be day 4
MM,
Sunday will be day 4 and so far I plan on doing it along with day 5, if all goes well. I have a slight headache this evening and maybe a little more porphyrin symptoms in my bowel but nothing nearly intolerable. So far, so good.
My skin hasn't flared up (I'm still working on calming it down from Aug pulse) nor have I been visited by either the gloom and doom monster nor the troll queen. It's still early yet, so as you know anything's still possible!
But for now, full steam ahead.
___________________________________________________________
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Its an individual thing
___________________________________________________________
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 6.5 Wheldon CAP 16th March 2006
So curious ... typically
So curious ... typically are the porpyria symptoms you feel during pulses equal to what you experience following them? Or you don't know ... as it a crap shoot? Can you feel ok during pulse and get slammed later?
Yes, good thoughts and I do realize we are all different. It is obvious it will be a long while before I can pulse at the rate I am going for example. Just Minoi gives me much trouble. But I like to read everyone's experiences so I can learn as much as possible for when I actually join you pulsing someday.
Unfortunate for you Michele with the taste & nausea intolerance. It is something I can relate to very easily. Along with bad odors my tummy flip flops easily. I suppose you must do the Metroi but I am going to start with Tinii as my liver is unhappy already.
So Reenie ... hang in there & hope you didn't bite of too big of a chunk with the 5 days you plan to pulse. Hope the Cholestlyramine pak makes a big difference for you this time. Thoughts & prayers for you. MM
___________________________________________________________
FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF
Hi Michele, I see from your
Hi Michele,
I see from your sig line you do Flagyli, which I'm too chicken to even consider.
The way I felt last pulse I have NO DOUBT I would have lost my lunch from that 2-day pulse if it was Flagyl, by how sick I got from just the Tindamax but it was mainly loss of appetite, fatigue, emotions run amok.
I do think you're right with each pulse being an individual thing although I think some of the added supplementsi and cholestyramine might be helping. Also, hopefully I got rid of alot of cryptics that I had lurking around which had never been touched before.
This time, I have a very sore spot on the right side of my mouth. The gums feel almost infected. I've been cleaning it and rinsing it with Scope mouthwash several times a day. But, at least I appear to be managing inflammatioin better in my skin and intestines. I'm taking milk thistle daily which may also help with the liver/skin and I'm also using Dermatrophin for skin support along with Drenamin for adrenal support.
___________________________________________________________
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Hi MM, You know, it's hard
Hi MM,
You know, it's hard to get this pulsing understood until you actually do it for yourself. I know I tried to prep myself and had really no noticeable impact from my first 1 day pulse although I never really felt right (increase in fatigue mainly) after it and before I pulsed the second time but then I surely got slammed.
If you recall my posts and ems, MM, I wasn't really sure what was affecting me. I think I had more emotional/mental porphyrin symptoms along with skin flaring (typical with cytokinei/inflammationi) mainly, so it sort of crept up on me. I didn't realize how much it affected me until it was already happening, but I only pulsed 2 days anyway.
I think, (and that can be dangerous esp during pulse!) that if you get thru the pulse without much issue, keeping porphyrins to a minimum, then, hopefully, they will decrease over the days and weeks after the pulse. So, I think it's important not to continue on too long if you're already having a rough time during the pulse. I hope that makes sense. And I hope I'm right since so far, this pulse is very tolerable for me. I think for now I'm getting to something in my mouth/gums but the inflammation seems to be minimal by my other symptoms. I hope I'm right. I guess I'll let you know if I overdid it afterwards.
But for today... I'm going to go outside and do some front yard cleaning up vs bed hugging!
___________________________________________________________
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Re Flagyli, I tried
Re Flagyli, I tried tinidazole and it made no difference, it was no better. I think the problem is to do with my mouth and tongue rather than the drugs themselves, although of course they do taste nasty.
I have had a lot of problems with my mouth and gullet. At one time I had a large bump on the side of my tongue which was very itchy... How do you scratch your tongue???
___________________________________________________________
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 6.5 Wheldon CAP 16th March 2006
Yes, good thoughts Reenie
Yes, good thoughts Reenie ...
Yes.... that is why it is better to plan ahead... not when you are actually doing the pulse when the brain is in P soup. (P = porphyriai)
Michele ... you scratch your tongue with a tongue scraper of course.
LOL
Take care ladies. Slainte! MM
___________________________________________________________
FM dx 2002. Started 2008: NACi 4/19 (2400 mg daily 7/21) Start list supplementsi + Iodoral 12.5 mg. daily: 6/19 FIRi sauna, 9/4 100 mg Minoi, 11/3 Azith - 12/1 MWF
> How do you scratch your
> How do you scratch your tongue???
I use a soft bristle toothbrush.
___________________________________________________________
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Sixteenth pulse metronidazolei + INHi completed 12/20/2008.
Reenie, Glad to hear you
Reenie, Glad to hear you have made it through 5 full days of tinii. I too did that with my second pulse with the aid of Cholestyramine once a day as per my signature below.
I will also say that I had a late manifestation related to the pulse. I believe it was on day 9 the first full pulse (first test pulse was one tablet, followed by the first full pulse of two tablets per day x 5 d.). I spiked a temp of 102F with chills and flushing as the major event. Held the fever for 12 hour then it came down to a baseline of around 98F (this was last Dec 07). I just continued my abxi and took nothing else to bring it down, I wanted my immunei system to continue to do it's thing. It will be interesting to see if you have any post pulse events. With tini, some folks have found events post pulse.
There have been some speculations about this. It was not really that bad an event. Louise
___________________________________________________________
Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Hi Louise, Yes, it'll be
Hi Louise,
Yes, it'll be interesting to see what happens. I just updated my blog above, to include my symptoms mainly for record keeping and also to remind myself that although the fatigue didn't worsen nor did I feel the gloom and doom this time, I definitely DID feel something.
Thanks for your persistencei on cholestyramine. I really do think it helped make the difference.
___________________________________________________________
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons