agatha's blog

Still doing well

Hi there everyone


Just a note to say I'm a year post treatment now and still doing well.  No return of MSi symptoms and feeling quite good.  Have also introduced a paleo-type diet and this is adding extra gains in energy and general health.


It's all good.

Wishing you all good health too.


progress report - doing well

Hello everyone

I haven't posted in quite a while - I've been catching up on my life as I've been feeling better!

I came off full time abxi (Wheldon protocol) two weeks ago after two years of treatment and I will now do the intermittent protocol for a couple of years.

How long is it OK to take flagyl for?

I have recently had a flare up of recurrent sinusitis which responded well when I started my pulse and then flared again after the pulse stopped.  

 My GP has prescribed amoxicillini for the sinus infection but I want to add a longer course of flagyli sinc e this seemed effective - clearly one week isn't enough - can I take the flagyl for 3 weeks at a stretch to try to knock this infection on the head?  Do I need to ask Dr Wheldon about this -  I hesitate to trouble him with queries.

Thanks for all replies


Weird dreams?

Hello, does anyone else out there get weird dreams during a pulse?  Any theories why this might happen - perhaps the brain processing toxic rubbish from the die-off? 

Red Nose Day

Hi there all you doxycycline dudes.  Just a reminder to be careful in the sunshine now that summer is on its way.  I started doxy in August last year and didn't react to the sun  - probably because I already had some tan.  This year however, I have a bright red nose from just a short time in the sun last weekend. 

Also, weirdly, after being in the sun, when i went out in the cool of the evening, I felt like it was raining even though the sky was clear - I could feel each raindrop on my face and arms even though it wasn't really there - weird or what! A very pleasant cooling sensation nonetheless.





A couple of queries

Hello - a couple of questions for all you old timers: 1. Are we supposed to take Vit D on days when we've been in the sunshine? Are we supposed to get levels checked periodically? 2. Does anyone have any ideas about comforting sinus pain during a pulse - the flagyli seems to stir up horrible pain but aspirin and paracetomol don't seem to have any effect. Thanks Agatha

out of hibernation..

Hello again  everybody I have just emerged from a SAD induced hibernation ( I was a dormouse in my previous life) - the May blossom is here, life is beautiful and it is wonderful to be back on the site again!

Hooray, I've got swine flu...

..and it's really not too bad.  I've had full blown flu 8 times in my life and this is the first time  I've ever had a 'mild' dose - normally I either think I will die or I hope I will because I feel so bad!   I wonder if it could be the beneficial effect of NACi - Dr Wheldon must be  right about its protective effects against the flu.  Anyway I mustn't count my chickens - I'm not through it yet, but so far so good. 

Reactions to immunisation/infection

I'm sixteen weeks in and was doing really quite well until a few days ago when I had a slight MSi relapse - slightly slurred speech.  When I thought about it I realised that I had had the flu immunisation a couple of days earlier and I strongly suspect this has caused my immunei system to go beserk ( I thought I had got away with it this year - usually I feel very unwell for a few days afterwards but this year felt OK until the neuroi symptoms started).

 Here is my question - has anyone else experienced this and as CAPi treatment progresses does the immune system  become better behaved in response to immunisations (and new infectionsi)?  If so, why is this?

(I'm sure Ken will have researched this thoroughly!)


Is it normal to feel bonkers?

I have been feeling very strange this week  and I'm a bit scared - heart racing, a feeling of talking too fast, emotionally labile (tearful, irritable), a feeling that I'm trembling all the time, nausea, agitated and unable to relax.  Does this sound like porphyriai?  Has anyone else had this sort of thing.  If I wasn't on the CAPi I'd suspect I was developing an episode of mania.

Online Pharmacy?

Can anyone recommend a reputable online pharmacy - I would like to buy an anti depressant called Bupropion (Wellbutrin).



Antibiotic resistance

Could I ask a question about antibiotic resistance - I know many of you are very knowledgable about this kind of thing.  I am currently taking low dose Trimethoprim on a long term basis to manage chronic UTIi and I add D-Mannose when the symptoms flare.  I would like to reverse this pattern and use the D- Mannose daily and just use the Trimethoprim (probably in a bigger dose) when symptoms flare up - I'm guessing it will about once a week.

My question is whether this way of doing things would reduce or increase the likelihood of resistance to the Trimethoprim. 

Any ideas anyone?




In the past few weeks I have been finding that I get giddy when I turn my head suddenly - is this a known herx symptom or a medication side-effect or more likely a new MSi symptom?  I'm fine as long as I keep my head still or move it slowly.


Next pulse now?

I am due to start my next pulse tonight and I have mostly got over the herx reaction from the last one  except that my lungs still feel very raw and painful and I feel quite dizzy (I'm assuming these are a CPni die off thing - does that sound right?).  Am I supposed to start the next pulse even though I still have some reaction or do  I wait until my body has recovered before starting it?  I'm more inclined to just press on and do the pulse  if that is OK. Advice would be welcome.


Global domination of my left tonsil

If you see something large and pink coming over the horizon that would be my left tonsil - it is making a bidi for global domination (not the right one - that is perfectly well-behaved).  This is the weirdest die-off symptom yet (why just the left one?) - except perhaps the sensation that an ant is dancing the samba on the side of my tongue..

What is everyone else's oddest die-off symptom?  Cheer me up guys - I feel dreadful.

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