Roxithromycin

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An antibiotic used in Europe to interfere with bacterial replication.

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.

 

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 Roxyi! - 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 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

All Multi-Factored Up

As I'm in experimental mode a lot with the CAPi, I don't report in often on my own protocol. This is partly because I like to wait a bit longer to see how things play out before posting observations. And partly so that people new to the CAP don't get confused that these experiments of mine are any kind of example! So here's the warning: this is not intended for anyone new to the CAP, and is not a model of anything anyone here should follow! As you will see, I'm not always the best example to follow anyway.

Antibiotics to be available without prescription

This is the news:  In England, possible antibioticsi to be sold over the counter, to treat CHLAMYDIA!

This is the story form http://www.guardian.co.uk/society/2008/aug/06/health<

Oral antibiotics are to be made available for the first time without doctor's prescription under guidelines approved yesterday by the medicines regulator.

A pill to treat chlamydia, the most commonly diagnosed sexually transmitted infection, will become available for purchase in pharmacies across England later this year.

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?

Mark

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.

Fatigue And "Women's Things"

Paula has been on the full dose of Roxyi 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.

D-Ribose, "Hockling" And Other Issues

Paula has been on the CAPi for about 6 months now.

She started on the NACi November 28th 2007, added Doxyi in Jan and has been on the full 300mg daily dose of Roxy 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.

Chestpain from Roxithromycn?

My husband has been taking Doxycycline for one month. This morning he decided to start with Roxithromycin.

One hour after 150 mg Roxi, he got very bad chest pain ,like coming from the heart. Not in the arm. He had to stop what he was doing and just focus on breathing. After 30 minutes it got better but he still has some pain now three hours later. Whe I touch his ribs they hurt to, hard to say what the origin of the pain is.  

He did an EKG only a few months ago and everything was fine. He has no known heart diseasei.

What I would like to know, is if anyone here has experienced chest pain in close connection to Roxithromycin.

   

Secondary Porphyria So Soon On Protocol!!

Paula has been on Roxy 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 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.

Skin Poo!

Just a quick blog entry.  For most of Paula's life, she hasn't produced very much sweat at all - virtually unnoticeable in fact.  She always complains about mine though! :-)

Since starting on the Roxi, she is sweating again, much to her disgust, but to my delight, as I know that this means she is getting rid of more toxins in her body than she used to.

She calls it skin poo!

:-)

Mark

I've been stood up!

For months now, Endo(toxin) and I have had a once-a-month rendezvous in which she would find some new way of causing pain and discomfort.  I'm now six days past pulse #7 and I think I've been stood up.

It's not that I really miss feeling like an uninvited guest in the former East Germany for a few days, but something like this really makes you wonder whether the antibioticsi are doing anything anymore.  I can't believe the CPni have waved a little white flag and have decided to go quietly. 

Hmmm. Do you suppose they're just regrouping for a spring offensive?

 

Reactions To Roxi - Paula Is Better At Writing Than Me!

1st Roxi -  Sunday afternoon.

It's now Tuesday night and so many of the reactions talked about on this site Paula has had since Sunday, including strange pains in her muscles from many a year back when she had injuries when she was a kid.

She is in quite a lot of muscle pain at the min, which started these past couple of days - She is normally free of pain as her main symptom is massive fatigue which still continues.

Her muscle pain is manageable though.

All her symptoms do seem to have upped quite a notch since starting on the Roxi which she will slowly increase the dosage of when she is able - It's not the Great North Run, but the London Marathon, never mind a race where this protocol is concerned -  we both understand this.

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