A few observations regarding Ella's latest pulse seem appropriate after the scary events of the past month... Just to be on the safe side she decided to return home to do the pulse taking into consideration the events that followed the previous one.
I observed that:
-the effects of the tinidazole kicked in much quicker this time than has been her experience in the past when a gradual increase of her fatigue, lack of balance and co-ordination was the expected course a pulse took.
-on day one, she suffered her usual loss of appetite, but because she was at home and her 'mummy' prepared and cut up her food, she ate fairly well.
-by day two she was staggering about, wall walking and not going upstairs except for bed
-by day three she had difficulty lifting her legs into the bath, she was nauseous and ate very little. Very tired, dozed a lot, yawned a lot, struggled with food, had to make several attempt at standing, wall walking got slightly better after a few moments.
-By day four she found it difficult to do much at all except watch the television and doze. Ate very little, felt nauseous most of the day, her left arm was uncontrollable and when attempting to walk had no control over her direction.
-By day five the symptoms stabilised, nothing got any worse, but nothing got better. We took anti porphyriai and anti-inflammatory measures throughout. We noticed that the worse time of day was around 3pm probably about 6 hours after taking the first dose. She usually felt better in the evening. I took note of the colour of her urine which was maybe slightly darker than usual for her, but no where near as dark as mine when I'm on a pulse. This might indicate that the load of Cpni is not that great but just located in very sensitive areas.
-By the middle of day six, day one of the recovery time she was feeling a bit better and moving around more easily, although her left arm was still lurching widely whenever she needed to use it.
-Day seven, 2nd day of recovery she was more or less back to her condition previous to starting the pulse. There are still some aspects of her ability to move which need to recover to her condition before the frightening step back that she took 4 weeks ago but at least we can see that this will happen with some time and exercise and that the latest pulse has not made things worse.
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Michèle (UK) GFAi: Wheldon CAPii 1st May 2006. Daily Doxyii, Azi MWF, metroii pulse. Zoo keeper for Ella, RRMSii, At worse EDSSii 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Michele and Ella, you are
Michele and Ella, you are both so couragous! A few questions, was this during a heat wave to compound the strength of the pulse? Would you mind talking about the anti-porphorin measures with some specifics that seemed to keep the prophorin load managable for her and how you structured that? I know we talk these things over and over but oddly enough when I am in the mist of it i even get somewhat "confused" once again.
Just to state for any readers who need to know I do not have known MSi dx. I have been recovering from severe CFSi with unrelenting fatigue that made it near impossible to move (yet I had the neuroi capacity to still do it.) I pulse with Tinii as dose Ella. I have treated all of my pulses since Nov 07 with Cholestyramine 4 to 8 grams at bedtime (1 -2 packets) generally starting around day 5. This has kept my porphria in check. However, This past pulse I started later on day 11.
Did not plan that way, I just kept putting it off until suddenly I crumped, rapid decent into the incapacitated pit and energy sinkhole, irritability, emotional lability, mental clouding and can't get out of my own way inertia. It took me 5 days taking cholestyramine at the 2 packets/HS dosage to climb out of the pit. For me it was a scarey revisit of sorts. I cannot imagine on top of such the incapacity and severity of limitation with MS such as Ella and KK with porphria. My admiration to you both. Secondary Porphoria effects show us the true cross over in sypmtoms that some of us can have regardless of "diagnositic catigory" and the speaks once again to the individualization of expression of the CPni infection which makes the sypmtomatology so "distinctly undistinct" that the medical establishment cannot put it neatly in a diagnostic catigory that it illudes diagnosis!
I am fairly well back up to a moderate speed again with energy. I did some yard work yesterday with my wide brim hat and even pulled my low back in the process, however some yoga postures, aspercream patches and a nights rest seem to have put me back into allignment.
This month I have decided to take a nightly packet of cholestyramine and continue on a nightly basis through the next pulse. I have a small slice of cheese before the cholesty to get the bile flowing.
Beyond all my current and previous talk about cholystyramine I continue to be in amazement at the impact that porphoria load from massive CPn infection has had on me, during the ramp up of the infection and even now during treatment.
I would never have ever made this connection without diligently reading almost each and every post for about 3 months. I picked up the comment on Cholestyramine somewhere here, looked at the medication and realized that it was well capable of absorbing and removing fat soluable substances including porphrins and liposacride endotoxinsi excreted in the bile.
Thanks again Michele for doing the hours of work that it must have taken to pull all the information and format in a wonderfully understandable summary for quick reference. I am so greatful for the ability, even now, to go to the quick list of reactions and remedies and sort through my current condition.
Currently I have had a shift of symptom pattern. Just this pulse I have been aware of a low grade (99+)fever in the late afternoon. This is different this post pulse as it is later and more regular than the Bb related fevers around day 9 - 15 that I have come to expect. These repetative low grade (under 100 F.) and may have something to do with mid afternoon Pyruvate 6 gm as well as having begun to take my 200 doxyi and 300 roxi two hours after my evening meal. It started once a day dosing because one day I forgot my morning Doxy and I went from there.
I decided to try this to get past the nausea of the morning as an experiment and it has helped that. I know that many folks have taken abxi all at one hour of the day with no precievable difference, I have read that response on numerous posts. I have thought that more coverage over the day was better so stuck with BID dosing for the past year. I may return to it or maybe do doxy all at once and the macrolide BID. Ah, we are all works in progress.
It has been pointed out to me the fever response is likely to be pathogens other than C.Pn. and that my B.B. may be the stimulus there. That seems logical to me. Good to know I am working a reducing these bacteria with one approach.
I really appreciate your updates which are so helpful for us as we all ride the waves of this treatment approach. We all want to be the exception to the challenges and this connective website show us these period of distress do ebb and flow. When you are in the immediacy of the distress it is inspiring to once again hear that this is not a straight line process.
Louise
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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