Thank God It's Monday? Does anyone else here get worse on weekends, or is it just me?

Given my social anxietiy, it could be just me, reacting to the "stress" of getting together with friends and loved ones, odd as that might sound. Or, maybe I just physically exert myself more on the weekend, or maybe I'm more likely to neglect some portion of the protocol.

Or maybe it's my pulse schedule; I generally start on every other Saturday morning and finish the following Wednesday night. However, I tend to be worse on weekends even when I am on a "pulse vacation" for some reason.

 It's wierd, anyway, and it won't surprise me too much if I am the only one, but I thought I'd ask.

I'm getting the NHS doc to come out again tomorrow to have a look at Paula's teeth and ears again as they have both got worse (especially in past couple of days) since coming off the 150mg daily dose of Roxyi.

We are both almost certain that Paula's hockling issues stem from either her ears or teeth.  I only wish when she was well, she had seen an ENT specialist.

When her hockling first started back in 2007 (pre CAPi) her NHS doc perscribed the abxi Flucloxacillin 250mg (which Paula wouldn't take but we still have and doesn't expire til May 09).

I have a question:-

If when Paula's NHS doc sees her tomorrow and advises the above abxi, is this anti CPni?

Dr AW wants Paula to start DHEAi because of her adrenal test results, but I am a bit confused which to get - DHEA or 7-KETO DHEA?

I have found these on this UK website:-

http://www.biovea.net/product_detail.aspx?PID=419&CID=0

http://www.biovea.net/product_detail.aspx?PID=52&CID=0

What do you guys take?

Dr AW's clinic is closed for another week.  I saw a brief copy of a fax he sent to Paula's NHS GP which showed he wanted her to take 25mg of DHEA.

I just want to make sure we at least have the stuff before my phone consultation with him on Mon 5th Jan.

Thanks,

Mark

Paula is having a lot of trouble keeping the Chole from being vomited up at times.  Sometimes she hacks it up from the very bottom of her gut.

My questions, are :-

1) For the porphryns to be ejected from the body, do they have to move from the bowel and out?

2) If any Chole is still at the very bottom of the gut and vomited out, will the Chole still contain the porphryns and be vomited out, or will they be re-absorbed on their way out?

Paula is allergic and/or intollerant to soya, shellfish, dairy, gluten, coffee, chocolate and (unspecified) mixed nuts.

Since I now have a laptop with broadband in the bedroom and Paula can tell me what she wants asking on this site directly, she wants to know of the people who have gotten better on the CAPi (not just CFSi), have you been able to tollerate any foods that you couldn't before CAP?

Please specify.

Thanks,

Mark.

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

As its coming (for me) to the end of Year 1 on CAPi, I am in a thoughtful mood about many things.

I am really considering the effect of Flagyli on me - my mental and physical 'health'.  I have experienced this for a year.  The question is - can i go through with it for another year, seemingly with no let up.

I have been looking at a website "Askapatient.com" on Flagyl, and the majority (for different conditions) are less than complimentary re. flagyl.

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.

My poor body is protesting again. Basically, I have been ill since November 3rd with a severe bout of bronchitis, almost as bad as when I first became ill in Nov. of 2006.

Doc told me to double up on my azith and take it daily -- which I did. I also became SEVERELY constipated being in bed most of the month. Was starting to have "spells", nausea other wiggy symtpoms, so I took milk of magnesia... I got relief but it also threw my colon into spasms. Luckily I had some hycosomine from a previous "spastic bladder" after a bladder scope. The drug helped the spasms which I am contining to have 2 weeks later. I continue to have nagging pain in left descending colon area and splenic flexure area.

Dec 24, 2008 marks the completion of my 18th month of treatment.  I am antibody positive for CPni and Bb.  I started treatment on bacteriocidal level of Doxycycline 400 mg/day for almost 4 months before cutting back to 100 mg BID and adding Roxithromycin 150mg BID daily.  Those first 4 months were incapacitating and perhaps advantagious it is water under the bridge and I would not recommend it to others. 

Plus an ME recovery story, told by another mother of a daughter with ME:  LINK

Maybe CAP could have prevented the former and might secure the success of the latter.

--Minai

Whilst looking through http://www.thyroiduk.org.uk

I have come across some people using hormone free natural products instead of Armour or Thyroxine etc for the Thyroid like this :-

http://www.nutri-online1.co.uk/Portals/1/3201.pdf

Also instead of hydrocortisone, I found this:-

http://www.nutri-online1.co.uk/Portals/1/3206.pdf

I know that Paula will need the proper meds instead, but I wondered if anyone had taken anything like this before?

Thanks,

Mark