Michèle's blog

Treatment protocol updated

I was told that something happened to the lay-out of the protocol in Getting Started. I have removed the table and laid out the text in a different way which should make it OK again. I'll have a look at the rest of the content as and when I have time. Best wishes to all.

Ella's adventure in Katowice

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Anyone for lower blood pressure?

For the past three weeks I have been trying out Inclined Bed Therapy (IT)<, it started out as an experiment because I do not like to recommend anything to Ella that I do not understand or experience.  IT does not cost anything, is unlikely to hurt you and may well help MSi symptom, arthritis, oedema and a host of other personal conditions.  

All I can vouch for is that my blood pressure has come down quite dramatically in the past week, from 145/90 with medication, to 120/65 with medication.   If it  continues dropping in the near future I am going to have to go and see my doctor to consult about either coming off it or finding something less potent.

Out of touch for a while

I'm changing over my internet service provider and it is taking longer than I was hoping, and I suspect that the service will only be back in place just before I am going away for a couple of weeks to Portugal.   If there is anyone out there who is willing to send out the welcome message I will be eternally grateful.   I've only got intermittent connection as I am using a borrowed mobile internet service, so far I have managed to keep up with new members but won't be able to do that when I am away...

Michele

New Member's Angel and Spam Demon.

Drug depletion chart

Whilst doing some research into some puzzling events in my recovery I came across this chart< that shows which drugs cause what vitaminsi or supplementsi to be depleted.  In my case it answers some of my questions.

Elinor's link.

Elinor has asked me to post a link <to an English newspaper article about a 5 year old diagnosed with MS.

Strange New Members

Over the past couple of months we have had a number of 'unusual' new members... Some of them selling a political message, some of them trying to sell us something, and recently some purporting to be on the look out for quack sites or maybe sites that are 'breaking the law'.  

I would urge you all to be vigilant... One way to find out about a member who is posting that you have not seen before is to click on their screen name, this will take you to their profile and you should be able to tell what kind of person this is from what they write in the profile.   The less information there is there the more likely the person is not going to be a member looking for information about Cpni and it's treatment.

Off to warmer climes!

Four am Monday I'm leaving frost bound Seaford for sunnier climes in Portugal.   I'm not going to post anything much after this as I have a number of things to finish before I leave.

Speedbird is welcoming new members, but there will be no information about doctors given out as this is not a straightforward job and requires several large files of possibilites and suggestions.   Maybe other members who have a doctor treating them could help out with any requests....   As Mac said in reply to Fox's message if you have a doctor and s/he is willing to be placed on our list that we use with discretion, please send them to me.   At the moment I have a list of a dozen or so doctors so we could do with more.

More Ella drama

Picture this: me vomitting and suffering from severe diarrhea, when my husband hands me the phone with a teaful daughter at the other end.   I am suffering from this bug and trying to aim projectile vomitting and the other stuff too whilst at the same time trying to find the words to bolster my daughter's spirits.

There is no doubt that she is suffering from some noticeable deficits at the moment, so it is difficult to make small of her concerns, especially as her last  'pulse' 2 weeks ago was only one pill and the subject of giving up the protocol came up again.   Half an hour later she is on the phone again saying that she can now see the bigger picture.   Sigh of relief....

Inspirational Message for 2009

A friend sent me this<, it made me all emotional....

It was filmed at his brother's school.   

End of year update on Ella's condition.

It is difficult to write this report as I am always trying to relate the positive, but sometimes you just have to say it how it is.

Is this the end game?

I've got a pretty severe cold again, the 6th in as many months (Hamish has had the same experience).   In the first two years of treatment I had not one cold.   I'm just wondering if these past 6 months have been the turn of my immunei system/bone marrow to get hit by the Flagyli.

I expect it does not help to be living with someone whose immune system is not too strong and picks up every bug going.   But Hamish has just been infused with 20g of Immunoglobulin so I'll see if that makes a difference to our joint health.

The gift of a name.

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 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.....

Any advantage in taking a small dose of Flagyl in between pulses?

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, 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...

Chemotherapy for MS

Hamish heard about this <on BBC world service.

Alemtuzumab is Campath< 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 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.

 

 

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