Here goes....

Hello

I'm a newbie.  I was diagnosed with RRMSi last year but have had symptoms for 20 years.  Also have chronic sinusitis and UTIs and GI disturbance.  I have decided I am going to do the treatment for CPni.

I am going to see Dr Wheldon soon with a view to starting abxi.  I started NACi last week and have felt very strange indeed  (mucous, nausea, flares of old MS symptoms, palpitations, fevers, sweats..) which I guess is a 'good thing' as indicating the presence of CPn. 

I've been fortunate with the MS in that I'm not very disabled so far except in that the mental fatigue and brain fog are utterly debilitating - especially I find talking very draining which is a pity since I am a psychologist and talk for a living and I dearly love an hour or three of chit-chat with my friends.

Like others here I'm going to chronicle my journey through the treatment -  it has been so helpful to me to read other peoples' accounts of treatment on the site and I would like to add my story for the benefit of those who come after.  I also hope that some of you will jolly me through the rough patches - it's a wee bit daunting - though quite exciting too.

I look forward to getting to know you all.

with all good wishes

Agatha

Comments

Thanks for these welcomes. 

Thanks for these welcomes.  Yes, Yilmaz 20 years is a bit long to get a diagnosis - for the first ten years I thought I had CFSi, then when my legs started going numb the GP wasn't interested and a physio told me I had trappped nerves.  It was only when my whole face went numb that a trainee GP bothered to refer me to a neuroi - by which time my brain is peppered with lesions.  Interestingly for the first couple of years I was sure I had a persistent infection and kept asking for tests for this - but nothing ever showed up.

Hey ho, at least I'm onto it now..

Hope you feel better soon LouLou

Agatha

RRMsi diagnosed 2008 (symptoms for 20 years). Also sinusitis, recurrent UTIs, IBS  Wheldon protocol began 31/7/09 Doxyi 200mg, Azithro 250 3X week.  Supplementsi B12, D3 Vit C, multivit, Fish oil, probiotics, NACi, vit E, turmeric

Better late than never . I'm

Better late than never . I'm so ill right now in the middle of yet another pulse.

Thinking of all this as "exciting" is a good and beneficial outlook and perspective.

Loulou

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

  Welcome agatha; I beg you

  Welcome agatha; I beg you good luck.

 I was diagnosed with RRMSi<i< last year but have had symptoms for 20 years.

  I wonder your story, your first symptoms and why doctors could make the diagnosis so late?

 YILMAZ.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

AgathaGood news!  This is

Agatha

Good news!  This is long and not always a happy time, but you have good company.  It's even better when someone starts before there is great disability - when you can still walk, for example. 

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am