Hi,
Paula's porphyriai symptoms (or are increased CFSi symptoms) have got a lot worse these past few weeks, where her fatigue is concerned especially. (Had to get a commode chair yesterday)
Louise pointed me into the direction of Resincolestiramina (brand name of Cholestyramine, manufactured by laboratoriosrubio in Spain). I have tried many times to contact the manufacturers via email and telephone, with no luck.
Does anyone know if this product contains soya as Paula is severly allergic to soya?
Thanks in advance,
Mark
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNii dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07. 2400mg 1200mg NAC 200mg. Doxyii Jan08. 150mg Roxyii Dec 1st 08
Louise - any ideas? :-)If
Louise - any ideas? :-)
If we can't use resincholestiramina, we may have to go to using the Charcoal 3 times per day instead of 2.
Mark
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi Jan08.150mg Roxyi Dec 1st 08Mark, here are the inactive
Mark, here are the inactive ingredients of cholstyramine, whatever is brand name:
http://www.rxlist.com/cgi/generic/cholestyramine.htm
The one mistake in the list is that they left out wallpaper paste, but that isn't made from soy.............Sarah
An Itinerary in Light and Shadow
___________________________________________________________
Thanks Sarah for locating
Thanks Sarah for locating that info. I have no more specifics than I have shared with you directly from the package insert. I know you are busy Mark doing everything for Paula, her daughter and yourself. I think it might me helpful to blog with your corrent list of supplementsi, Abxs and extent of her diffiiculties so that members could see what is currently going on and from that information make some observations. Paula is a sensitive individual and that adds to the limitations for suggestions.
I really feel for you and Paula you are in a very hard place, and I don't even know the workings or your NHS medical systems so diffficult, hoping some of your countrymen can make some suggestions.
I only know what has worked for me and I know form me charcoal was limited in success. I think you could go up if you can get enough of a window away from the important meds and supplementsi yet if you have been as regluar as you have been with is so far I question what good another dose would do for her IMHOi.
How is her pain level these days amongst all this weakness?
Would she consider going into the hospital for an evaluation for porphoria? I know she would not want to do this but how much longer can you keep up the increasing demands of her incapacitation. Is it possible that she has one of the other incapacitating illness, I can think of several by name but at the moment do not recall the specifics except that there are a few.
What to do as she get more and more bedbound, I have the utmost compassion for the both of you as you sort it out. Again, perhaps a blog will get some other fresh ideas and insights.
Blessings to the both of you. Particularly you devotion and patience.
Louise
___________________________________________________________
Louise CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
Thanks Louise & Sarah. I
Thanks Louise & Sarah. I ordered some Resincolestiramina yesterday. I'll try to find some time in next few days to update things in a blog.
Mark
___________________________________________________________
UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi Jan08.150mg Roxyi Dec 1st 08