Mark Hall's blog

Paula Update

Short Paula Update.


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.


URGENT - PLEASE HELP - Paula & Porphyria

Paula's porphyriai 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

Paula's porphyriai 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 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!)

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

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!

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 and the Samento now.  She is taking the Roxyi 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!

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

Porphyria Hell!

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 related.


Starting Cholestyramine

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!

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 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 abxi or Samento, Dr AW using his blood test, only found CPni in Paula.

Paula's Schedule

Paula's Daily Schedule.

As promised, here is Paula's supplement and CAPi 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.

Paula Has Gotten Worse

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 symptoms included:-

Terrible fatigue

Paula Had A Bad Crash Last Night

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.

Changing Taste Buds

One new symptom that Paula has had since starting the abxi 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?


Buckets & Buckets Of Mucas!

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.

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