When Paula wakes tomorrow, I am going to give her a very small amount of glucose in a 75cl bottle of spring water and build her up like I did with the ribose earlier in the year. I will do this when she wakes, as this is the time of her greatest energy for the day (not that it's very much though).
I plan to do it like Reenie advised me below:-
Volume = 3000 ml Ref range = 600-2500
T3 = 639 pmol/24h Ref range = 800-1800
T4 = 1634 pmol/24h Ref range = 1800-3000
T3 % mean ref. value = 49.2
T4 % mean ref. value = 68.1
T3/T4 ratio = 0.39 Ref range = 0.63-1.00
Almost 1 week after starting the Chole, things haven't gone as well as hoped. The main reason for this has been life stress. Paula's 13 year old daughter is now a typical teenager, causing myself and Paula massive amounts of stress.
I haven't been taking this stress very well at all.
Anyway Paula has stopped taking Doxyi [6] and the Samento now. She is taking the Roxyi [7] split into 2 doses on an empty stomach, which she now has immediate reactions to. She takes the Chole about 1 hour after each dose of Roxy.
She is still taking the 2 sachets of Chole twice per day, which does seem to lower her porphryins. Unfortunately the stresses mentioned above seem to have cancelled out most of the Chole benefits.
Paula has been taking 2 sachets of chole twice per day since Sunday. Some reduction in her porphyriai [9] symptoms include psychological issues, chest pains and breathing trouble. Her fatigue is still massive, but the reason for this blog is the new symptoms after taking Chole......
She takes Chole with a slice or 2 of rice bread with an olive oil spread. It is taken 2-3 hours after any supplementsi [10] or abxi [11] and at least 4 hours before supplementsi [12] and abxi [13].
Paula has had some bad days this past week. There were times she thought she was dieing.
Those dieing like symptoms were:-
A) Rapid heart beat that wouldn't slow and she would wonder if her heart would take it.
B) Her fatigue would get so bad that she would have trouble catching her breath.
These symptoms would last between 30mins and an hour. It was during this time that she would also get the classic porpyhria symptoms including paranoia issues. This led me to believe that the 2 major issues above could also be porphyriai [9] related.
Just a quick update. Just got off the phone of Dr AW's clinic.
It appears that in the blood sample that Paula produced a couple of weeks ago, using his dark filter microscope, he found BORRELIA!
Paula was bitten by about half a dozen ticks in the summer of 2004!
When she first became bedridden, she was tested by the NHS for Lyme but nothing was found. I wonder if the little blighters have been forced out of their slumber like a massive kick up the arse, by the Doxyi [6] and Roxyi [7]! - I bet if we did the NHS Lyme test again, it would be positive - I wonder if it is worth asking?
Prior to any abxi [11] or Samento, Dr AW using his blood test, only found CPni [20] in Paula.
Paula's Daily Schedule.
As promised, here is Paula's supplement and CAPi [23] schedule.
Please have a look at the below and let me know if there is anything anyone thinks we may be doing wrong.
As an aside, she is allergic to Soya and is both gluten and diary intollerant. She is also Glycemic, which means she currently can't take glucose, but is instead replacing it with d-ribose (which currently doesn't seem to be helping from what I can see).
We have Colestyramine on order and hopefully Paula will be trying it very soon and replacing it with the Charcoal.
A couple of weeks ago, she suffered from a couple of crashes, whilst on her daily trip to the bathroom. Luckily her daughter was in the house both times, to help her back to bed. At that point we decided to get a commode put in the bedroom.
Over the course of the 2 weeks, she was able to use her usual jars by the bed for the "No.1" and the commode for her daily "No.2".
About a week ago, she started taking a 3rd dose of powdered activated charcoal (2 teaspoons at a time). I have ordered some Colestyramine to try at a later date, when it is delivered. We are doing this to try to bring down her porphyrin levels as much as we can. Her porphyriai [9] symptoms included:-
Terrible fatigue
I know that the reason for a blog is so when things are getting a bit better, you can look back to how bad things were.
Or, when things are going bad, you can look back to how worse things used to be.
This is my reason for this post.
Paula doesn't like me "airing my dirty laundry in public", but when she is better that's when she can tell me off for doing it.
The way I see it, this blog is for both of us.
One new symptom that Paula has had since starting the abxi [11] that is pretty noticable, is a change in her taste buds.
Many foods that she used to like, she now cannot stand and make her feel sick.
Anyone else have this happen to them?
Mark
Paula has had a pretty bad week where hockle is concerned. Her mucal discharge seems to be never ending. She doesn't seem to have had a break from it for about a week now. When I say a break, I mean even an hour or so!
Most of this week, it has been constant hockling up into a tissue every few seconds. At best, she may get a break for about a minute, then it starts again every few seconds. As the day goes on, it may subside to a hockle per minute.
To re-iterate, this mucas seems to come down the back of her throat from either her left ear, or from her nose - we are unsure of this.
Paula has been on the full dose of Roxyi [7] for nearly 2 months now.
Her "hockling" continues - some days not so much and some days quite a bit, but I feel and hope that in general it has slowed these past couple of weeks - here's hoping!
She continues to build up on the D-ribose - still 3/4 teaspoon of the stuff in a 75cl bottle of water.
She does seem to "crash" a lot more lately. She would only crash when not pacing enough, but she is pacing as well as she used to, but still crashing - meaning that the time that I see her and can talk to her these past couple of weeks has reduced a lot - I hope that this is die-off, as there doesn't seem to be any other reason why her fatigue would increase so much lately.
Paula has been on the CAPi [23] for about 6 months now.
She started on the NACi [15] November 28th 2007, added Doxyi [6] in Jan and has been on the full 300mg daily dose of Roxyi [7] for 5 weeks now.
Not many improvements in her condition to speak of as yet, but as she is so severely effected we are taking this protocol very slowly.
As she is tollerating the Doxy, Roxy and NAC so well, we plan to start the next stage of the protocol (Tinidazole) towards the end of July as it is said to give the Roxy 2-3 months before adding Tini.
Paula has been on Roxyi [7] for 2 or 3 weeks now. These last few days have been as Ruthless1 would call Troll Queen days. I realise for the people who are suffering from secondary porphyriai [9] that it is a horrible thing to go through. It is nearly as bad for the carers sometimes.
Until the night before last, Paula was only on 12 caps of charcoal once per day. We have recently increased it to 12 caps twice per day, and last night Paula plucked up the courage to take some D-Ribose and she didn't have any bad reactions from it. She plans to take the recommended D-ribose dose and we hope that as well as giving her some extra energy, it may help the porphyria symptoms to abate a bit saying as she can't take Glucose because of glyceimic reactions.
Links:
[1] http://www.cpnhelp.org/paula_to_start_glucose_sa
[2] http://www.cpnhelp.org/chlamydia_pneumoniae/chro
[3] http://www.cpnhelp.org/taxonomy/term/28
[4] http://www.cpnhelp.org/paulas_24hr_urine_thyroid
[5] http://www.cpnhelp.org/paulas_current_regime
[6] http://www.cpnhelp.org/taxonomy/term/39
[7] http://www.cpnhelp.org/taxonomy/term/40
[8] http://www.cpnhelp.org/cholestyramine_problems_h
[9] http://www.cpnhelp.org/glossary/term/175
[10] http://www.cpnhelp.org/taxonomy/term/63
[11] http://www.cpnhelp.org/taxonomy/term/38
[12] http://www.cpnhelp.org/taxonomy/term/57
[13] http://www.cpnhelp.org/glossary/term/93
[14] http://www.cpnhelp.org/porphyria_hell
[15] http://www.cpnhelp.org/chlamydia_pneumoniae/supp
[16] http://www.cpnhelp.org/starting_cholestyramine
[17] http://www.cpnhelp.org/paula_has_borellia
[18] http://www.cpnhelp.org/taxonomy/term/58
[19] http://www.cpnhelp.org/taxonomy/term/27
[20] http://www.cpnhelp.org/glossary/term/167
[21] http://www.cpnhelp.org/paulas_schedule
[22] http://www.cpnhelp.org/taxonomy/term/36
[23] http://www.cpnhelp.org/glossary/term/168
[24] http://www.cpnhelp.org/paula_has_gotten_worse
[25] http://www.cpnhelp.org/taxonomy/term/55
[26] http://www.cpnhelp.org/paula_had_a_bad_crash_las
[27] http://www.cpnhelp.org/changing_taste_buds
[28] http://www.cpnhelp.org/node/4669
[29] http://www.cpnhelp.org/fatigue_and_womens_things
[30] http://www.cpnhelp.org/d_ribose_hockling_and_oth
[31] http://www.cpnhelp.org/secondary_porphyria_so_so
[32] http://www.cpnhelp.org/blog/mark_hall?page=1