Weirdness

Hello all,

Apologies for not posting regarding my progress with the CAPi.

I've been on CAP for around 15 months(?). I have been totally haphazard and disorganised when it comes to recording dates etc. When people post about the number of pulses they have done I realise that I have no idea how many I have done! 5 or 6 I think? The whole year has been a bit of a fog. I guess I have been too 'scattered' to post. Suffice to say it's been a rollercoaster ride. But the fact that I am still hanging in here is testament to the fact that I'm still convinced that my illness is at least partly due to a chronic infection and even with my natural scepticism I still think that something good is going on with me even amongst all the bad.

I have not been able to go as hard with this treatment as I would have liked. But I am gradually getting there. I'm tolerating the doxyi and roxyi well now. I had a real problem tolerating the NACi so tried Amoxy which was fine for a couple of weeks until my digestive system went into meltdown and I had to stop taking it! I'm still having problems with my stomach, but have started NAC again and seem to be tolerating it better than before, although it is still making me feel very very fluey. I will attempt to persevere with the NAC this time though, my reaction to it makes me think that it is an important component to this treatment. I seem to be tolerating tinii pulses ok now, although I've had to cut it back to 2 day pulses every 3 weeks. I had a pretty bad reaction to a couple of tini pulses early on, particularly with extreme anxiety, depression and fatigue, plus a return of 'Lhermitte's sign' and other transient neurological symptoms. I have also had the strange phenomenon that others on this site have mentioned, the revisitation (usually in the form of stabbing or burning pain) in areas throughout my body that I have had injuries or problems with in the past. I have no doubt that the antibioticsi are working on these areas, the sensation and location is too defined and targeted to be anything else.

I watched the ABC Catalyst program here in Australia with interest. I even appeared on screen for a nano-second having my scan done! lol. 

My deepest respect and thanks to David and Sarah Wheldon and to my Doctor Paul Thibault for speaking out about their beliefs that MS is  caused by an infection. I, for one, am not prepared to sit back and slowly (or quickly) deteriorate whilst the various medical factions strut their stuff. Particularly as this combined antibiotic protocol, whilst definitely not a walk in the park, is not going to kill me and has more promise than any of the other alternatives.

The weirdness I referred to in the title is how I feel like describing my illness most of the time! Probably my most debilitating symptom is fatigue, both mental and physical, which makes it difficult for me to even begin to describe how I feel. When people ask me what's wrong with me my mind goes blank. There are simply too many symptoms to list! I am surprised by the number of times I read a post on this site where someone lists a 'weird' symptom that they have and I think YES! I have that too! Someone wrote recently about facial/scalp parathnesia and feeling like they are wearing a hat, YES. A weird taste in their mouth, YES. Chest pains, YES. Neck pain, earache, tooth pain, flashes of light in vision, feeling freezing cold, tinnitus">i, vertigo, word-retrieval problems, severe gastitis, transient rashes, strange nail spots... Just to list some of the weirder things! Surely only a systemic infection could cause these wildly variable symptoms.

Only other people facing these 'weirdnesses' understand how this feels. Both physically and mentally. A friend of mine has recently been through chemotherapy for cancer. My heart went out to her, what a terrible illness and treatment. The support she received was tremendous though, and I couldn't help thinking how hard it is to be on this CAP and to have this WEIRD illness that causes so many weird symptoms and have so little support and understanding from not only friends and family but from the medical profession. My thoughts go out to all of you who are battling this @#%&ing weirdness.

Apologies again for not posting. I think I owe it to this site, its founders and others on here to share my experiences with this treatment. If anyone wants information, has a question, needs a virtual hug or just wants to have a whine (wine?) or is in Sydney, Australia and wants to meet up don't hesitate to PM me.

I think I've hit the bottom of the curve, onwards and upwards!

X

Comments

To SG

Hope you get better

I have word retrevial problems too

Also when really depleted .. "electical shocks" all through my body

 

Thats "weird"

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Thanks

Sugarglider,

Thank you so much for you post. You've completely hit the nail on the head (or hat head - I get that too!) with regard to how difficult it is to explain the weirdness of our symptoms. It's easier just to say, "I'm fine thanks", when people ask how we're doing. There's also a temptation to say everything's great because there is so much scepticism about our treatment choices. I'd never wish chronic illness or cancer on anyone, but what you say about the support your friend who had cancer received is true. It's wonderful that the support is there for those with cancer. It will nice when chronic bacterial infectionsi are viewed more 'fashionably', then perhaps support would be easier to come by for us.

Keep trucking on, it sounds like you're making good progress. Onwards and upwards indeed, the view is usually better from the top :)

Alison

Mysterious symptoms from 1997-2011. MS Dxi 2011, Lyme and co-infectionsi Dx 2013, Mould sickness Dx 2014. Cpni CAPi 12 months, Lyme CAP 10 months, mould treatment 6 months, Cpn/Lyme CAP currently, lots of supplementsi for years.

Hi

Thanks for your reply Alison :D

Where abouts are you? Have you started antibioticsi yet?

It's good to have contact with others who are dealing with this stuff.

WE ROCK!

RRMSi diagnosed 1996. Many years of weird symptoms before this. Started CAPi around 6/11? Minoi 200mg daily, Roxyi 300mg daily, Tinii pulses started 11/11 (very tentatively!) Major problems with headaches 01/12, substitued mino with doxyi.&l

Hi again

Hi,

Slow reply, sorry. Uni exams are to blame, plus a post-pulse crash. 

Yes, I've started antibioticsi. I've been on them for 7 months now. I've lost count of pulses, but will count them up when I get the chance. I'll update my blog soon with how they're affecting me. I live in Brisbane but have a sister in Sydney so if I'm down your way I'll send you a message. 

I hope all is as well as possible for you.

Alison

Mysterious symptoms from 1997-2011. MS Dxi 2011, Lyme and co-infectionsi Dx 2013, Mould sickness Dx 2014. Cpni CAPi 12 months, Lyme CAP 10 months, mould treatment 6 months, Cpn/Lyme CAP currently, lots of supplementsi for years.