As part of my service to new members (and sometimes old ones too) I try to gather as much information about doctors so that I can give them a starting point for their treatment.

I'm making an appeal to anyone who is lucky enough to have a doctor who prescribes the CAPi [2] for them, to ask their doctor if s/he is willing to have patients refered to them from this website.  Explain to them that the exchange of information is done privately and cautiously, and that the list is not available to anyone except me.

In this season of generosity, can you make a gift of a name? PM me your gift...

Thanks.....

Ella is struggling to fit pulses in now that she is working.   She only manages a pulse every six weeks (she has to arrange her working weeks before and after the pulse so that she can have 5 days off) and consequently they seem to hit her harder when she does them.   Is there any benefit in taking a smaller dose of Flagyli [4], say 400mg a day for two days once a week, or 400mg every other day for example... Or are there any negative aspects to this kind of protocol....

Your thoughts would be welcome...

Hamish heard about this [7]on BBC world service.

Alemtuzumab is Campath [8] by another name.   Campath is a drug used to combat leukaemia and is one of the drugs that Hamish was given during his treatment.

In my mind there is a question about the concept behind the use of chemotherapy, are they killing Lymphocytes because they think that lymphocytes are responsible for MSi [6] or are they killing them because they are infected....

Chemotherapy was an option for Ella's treatment when she was suffering the terrible relapse of 2006 which was showing no sign of abating.

 

 

Hi Pollywaddle, Welcome to Cpnhelp.

Your profile describes some of the ailment you suffer from, and those are all familiar to the people here.  

In your profile please enable the private message option so I can send you the welcome message which explains a few things about this site.   You will be safe, we do not sell anything here... You won't be receiving spam...

Recently we have had an influx of members who have come to us from other sites, with different experiences and different opinions.   I thought it important to include a little bit of a vision statement for this site as a paragraph in the welcome message I send to all new members.   I have italicised the paragraph.... Please let me know if we need something else in the message, but bear in mind that it cannot be too long or people wont read it.

*****

Well its party time, nearly....

I was going to send Cpnhelp a bunch of flowers but in the attempt managed to punch out every subsequent blog entry so here is the place to send your best wishes and wise sayings.

HAPPY BIRTHDAY CPNHELP.   Thanks a bunch for your very exsitence, your continued support and the community you created.

Russ Farris the author of the Potbelly Syndrome has sent me an e-mail about this internet Citizen's research group he has just established and asked me to pass the message on to whoever might be able to contribute.   This is aimed mainly at older people's experience but researchers with useful knowledge regarding this subject will be most welcome.

Here is his message:

Hi all,

Jim has officially declared Cpnhelp's birthday to be on the 24th August at 10 am EST.   So that translates to: (correct me if I'm wrong)

PST 7am

CST 9am

EST 10am

AST 11am

BST 4pm

I would be good to see as many of you as possible around that time for an online celebration.

We could use this blog to do the posting of whatever you think is suitable: pictures, stories, jokes etc... 

A few observations regarding Ella's latest pulse seem appropriate after the scary events of the past month... Just to be on the safe side she decided to return home to do the pulse taking into consideration the events that followed the previous one.

I observed that:

-the effects of the tinidazole kicked in much quicker this time than has been her experience in the past when a gradual increase of her fatigue, lack of balance and co-ordination was the expected course a pulse took.

-on day one, she suffered her usual loss of appetite, but because she was at home and her 'mummy' prepared and cut up her food, she ate fairly well.

-by day two she was staggering about, wall walking and not going upstairs except for bed

I thought this [16] was a step in the right direction.  Nothing new here but these pages are created and edited by student scientists and a link between Cpni [17] and MSi [6] in the minds of these people might result in more understanding.

Today we are feeling a lot better than we did yesterday.   Let me explain...

When we got home yesterday I gave Ella 50mg of methylpredisnolone (1/2 a tablet left over after a previous treatment) and by the evening she was walking better and able to lift her left leg, which she had not been able to do in the morning.   This gives me two pieces of information:

1. if 50mg makes a difference then the problem is not as big as it appears.   One hundred mg made no impact on her condition when she was given it on a previous occasion.

2.  This exacerbation appears to be the result of inflammationi [19] rather than a new infection.

We have been to see my doctor and he has given her a short course of high dose steroids that should put an end to this episode. 

Ella is back home with me once again, unable to manage on her own for the time being.   A bit of a shock, we firmly believed this kind of thing was behind us; but it appears from ours and other's experience that even two years plus into the treatment something can be so stirred up that you end up with exacerbations which floor you.

There are still signs of improvement in some areas, such as Ella's sight problems which are much improved and mostly stable and her right arm which took a bashing a year ago has remained strong and unaffected by the recent exascerbation.  

This all comes a fortnight after a weekend of sun and a few days after a three day pulse. 

Author: Norman Doidge, MD

Title: The Brain that Changes Itself, Stories of Personal Triumph from the Frontiers of Brain Science

Published by: Viking Penguin, 2007

Reviewed by: Michele Findlay

Norman Doidge is a psychiatrist and psychoanalyst who became interested in Neuroplasticity and decided to investigate the subject with a view to helping his patients.

He uses case studies to illustrate the various ways in which the brain can either repair itself or compensate for damage by commandeering adjacent areas.

Hi Barbara,

Welcome to the site, I note in your profile that you talk about Azithromycin therapy. It is important to understand that one single antibiotic is not going to do the job. Please read the Getting Started module which is on the blue tab at the top of the page.

It is also useful to be able to communicate with other members via Private Message, but you need to go to your account to enable that. You will find the my account heading in the blue edged box on the left.

Michele

I'm needing some help with dealing with Ella's fatigue. It seems that in the past three months she has been suffering from increased fatigue. I think it is probably down to porphyriai [24] and I should start the Charcoal once again, although that makes her constipated so not the best choice. But it would be great to hear what other people have to say about the fatigue. The anti histamine seems like it might be a good idea but what about the Chlorella - Daisy? I'll be looking at the Reactions and Remedies in a moment maybe I should take notice of my own medicine...