Mark Hall's blog

Paula Update

Submitted by Mark Hall on Sun, 2008-12-21 09:24

Short Paula Update.

MONDAY

Placed call with Social Services to assess myself and re-assess Paula.  They said they would make it top priority.

NHS doc came out to see Paula.  Didn't recommend admitting to hospital - just to keep giving fluids and food.  Told her about the B12 injections again (which we now have in the house).  She said she would wait for a letter from Dr AW with instructions on the B12 injections and benefits, before deciding if she would get a nurse to either show me to inject, or for the nurse to inject.  Doc getting nurse to come out on Tuesday to do some blood tests.  Doc said she would phone Social Services to ensure that Paula goes to the top of the queue.

TUESDAY

URGENT - PLEASE HELP - Paula & Porphyria

Submitted by Mark Hall on Sat, 2008-12-13 20:08

Paula's porphyria is terrible - She won't take the dextrose - her pchycological issues are horrendous.

I have virtually been confined to the bedroom with her for the past few days as she is so unbeliavably scared.

She hasn't been able to keep the Chole down for the past 2 days because of "hockling" making her sick.

She is now having trouble eating because of her constant heart rate increase probably caused by the porphyria when she does so.

She barely slept last night.  She virtually needs 24hr care since Tuesday.

If things don't improve - my immediate choices are:-

1) Forcibly give her glucose

2) Call for an ambulance to give her glucose.

Help - Anyone With Chole For Sale?- + Paula's Plan

Submitted by Mark Hall on Sat, 2008-12-06 16:29

Paula's porphyria is as bad as ever, but was (just about being kept at bay slightly) by 2 sachets of  Chole twice per day (Laboratorios Rubio, Spain's Resincoletiramina).

We have just run out of Chole today - An order was placed with edrugnet.com and was shipped on Monday morning.  The problem is that it could take another week or more to arrive.

So, does anyone have any Chole we can buy in the meantime?  Please PM me and I will look into paying by PayPal.

Last night was Paula's last 2 sachets of Chole.  Today she has taken a large dose of Charcoal - twice so far.  Late tonight I am going to give her 1 sachet of Chole (we will then have 2 sachets left).

Paula To Start Glucose Saturday (hopefully!)

Submitted by Mark Hall on Fri, 2008-11-28 19:37

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:-

Paula's 24hr Urine Thyroid Results

Submitted by Mark Hall on Thu, 2008-11-27 07:51

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

Paula's Current Porphryia & Fatigue Hell!

Submitted by Mark Hall on Sat, 2008-11-22 13:44

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 Doxy and the Samento now.  She is taking the Roxy 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.

Cholestyramine Problems - Help!

Submitted by Mark Hall on Tue, 2008-11-18 15:17

Paula has been taking 2 sachets of chole twice per day since Sunday.  Some reduction in her porphyria 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 supplements or abx and at least 4 hours before supplements and abx.

Porphyria Hell!

Submitted by Mark Hall on Thu, 2008-11-13 10:37

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 porphyria related.

 

Starting Cholestyramine

Submitted by Mark Hall on Fri, 2008-11-07 07:07
Paula has given the Chole a go.  As of Wednesday she was on about a quarter of a sachet.  At 4pm she would have a slice of rice bread with olive oil spread on it just before the Chole, to help the bile production, but most importantly to alleviate any reaction from the sugar in the sachet.
We have temporarily halted the Chole for a few days, as Paula would get the following symptoms for an hour or two after taking it:-
Cold feeling in her stomach throat and tongue, as if she had an overdose of peppermint oil.  She would get sore gums and teeth which was a bit like the sensation you get when eating an acidy sweet.
As she is so sensitive, the above symp

Paula Has Borrelia!

Submitted by Mark Hall on Mon, 2008-09-29 06:48

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 Doxy and Roxy! - I bet if we did the NHS Lyme test again, it would be positive - I wonder if it is worth asking?

Prior to any abx or Samento, Dr AW using his blood test, only found CPn in Paula.