progress so far

progress so far

In the midst of one of those not so good phases at the moment, I've been pondering on how best to explain to those who don't understand all of this (including my neurologist, who I'm due to see next month), that I really am making good progress - even though I still seem to be as bad as ever most of the time.  Words don't explain it very well, so I decided to draw a graph instead.

"ill" is at the bottom of the graph and "well" is at the top

Before CAPi, every 'flare-up' - over 23 years - left me worse off than the time before.  Since CAP, every improvement - glimmer of hope - has been better than the time before.  Still a way to go - but that definitely seems to be heading in the right direction!

Comments

Thank you so much to share this!!! I cannot wait for me to make such a statement too!!! I will wait until i am 100% sure. I do not want to give false hope but i have the feeling i am heading into the right direction .  I am only hoping for this msi to stop! 

Take care

 

MMHHPP

RRMSi since 2010. Asthmai sufferer during  2008-2012 - Free of asthma since started  Wheldon protocol- october 2012 doxyi 200mg, Azytrom 3x week, NACi 1200g day and vitaminsi-  January 2013 started Flagyli pulses. i s

Hi Boadicea

So now i am ingtrigued - what is it that is causing the bad (flat lines) bits inbetween the good spikes?  Increases in meds? pulses?  just the way it goes?  Overdoing things?

Am loving  the graphs -  i  have times out of bed figures i've made over the years and occassionally make them into a graph.  So similar.  I try and do another line to judge how much i get done in that time, so i suppose that relates to quality of life. 

Po

x

Female UK. High EBVi, CMV. In winter 12/13 waslow Lyme and Cpni-tx'ed 6mths. Sept 13 -ve lyme, +ve erlichia, bart &Yersinia, starting tx for co-infectionsi also aspergillus

Thanks so much for posting this - really gives hope to those behind you in this process - the graphs provide a good illustration.  Hope things continue to move in a positive direction.  atb Suzanne

diagnosed RRMSi 2000 - had v little trouble til 2009 when changed to SPMSi - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abxi 24.08.2

Many thanks for your encouragement.  Much appreciated.

Po – that’s a very good question you ask.  The reason for the bad inbetween bits seems to be just the way it goes.  The journey, for me, that is CAPi.  No other reason.  I’m not pulsing, so it isn’t that.  It always happens in the same way – I go from being fine to not, within minutes.  Starts by feeling worn out – can’t carry on with whatever I’m doing, and need to lay down on the sofa.  Then lots of shivering, nausea, sickness and can’t move for hours.  Then pain/inflammationi (a different bit of me seems to be targeted each time and then revisited at other times – including neck, right side of face, left ear, brain, spine, sinuses, left lung, left hip, right foot – all things which have cropped up or had injuries in the past). Then toxins, porphyriai, pain, sickness, fatigue.

I’m assuming that it’s bacteria dying and the consequences of all of that.  It does seem to be, and that makes sense to me.  And it does seem it is possible for bacteria to die, even when only taking the bacteriostatic abxi.  It used to take weeks to months to get over each time, but now I seem to improve within days to a week or two.  I think my body is gradually detoxing better than it did, so perhaps that’s helping.

In some ways, it’s all very similar to the way it used to flare-up before CAP.  It would be very easy to think of it as disease progression – but, before CAP, things just kept on getting worse and worse, until I was never even a little bit OK.  And now there are the glimmers of good bits in between.

I find the graphs helpful, because I feel they show a reality we don’t always see ourselves when we’re in the midst of it.  When I’m OK, I forgot how bad I sometimes feel and there’s no stopping me.  Then, when I’m not good, I sometimes can’t imagine ever being OK enough to do things.  We forget so quickly!

 

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Hi Boadicea,

I get the same sort of 'bad in-between bits' that you describe, in fact going through one right now. Sometimes they'll be preceeded by feeling extra good, and sometimes they seem to coincide with a general removal of stress like on the weekend. They occur in the absence of me taking anything specifically antibacterial, so my best guess is that it's the immunei system launching a mini offensive. I get the same crushing fatigue and localized sensations of inflammationi too, as if a particular area is staked out as the battleground.

Nice charts btw! Next you should create an infographic on the journey of killing Cpni :)

--

Positive Lyme test via IGeneX Western Blot, Cpni probable but unconfirmed by ELISA testing, Babesia also likely.

Buhner and Cowden herbal protocolsi, NACi, Artemisinin, Xylitol, Lactoferrin, other supps, essential oils, sauna

Thank you so much for posting, Dylan. That's very interesting to hear - and very reassuring for me.

Glad you like the charts!

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Thanks so much for your graphs.

I'd been trying to imagine once to show cpni lowering on one axis and improvements on the other but I can't quite figure it out..... your graphs help to simplify a complicated situation.

My question is do you loose all your improvements everytime you fall back?  For example do you loose your handwriting everytime you fall back?

I have so much to learn about all this!

Thanks again.

Thanks for explaining Bo.  Nausea not nice and i too get the not being able to move for hours.  I'm ME/Lyme not MSi though.  Sounds horrid, the bad bits. 

Yes you are so right, we do forget and yes it is good to be able to compare, for me the years and any differences.  Po - x

Female UK. High EBVi, CMV. In winter 12/13 waslow Lyme and Cpni-tx'ed 6mths. Sept 13 -ve lyme, +ve erlichia, bart &Yersinia, starting tx for co-infectionsi also aspergillus

Thank you Boadicea for posting this and the charts! 

I've been feeling a little leary lately as to whether CAPi is making any difference, since I haven't noticed any real improvements and still feel like I'm getting progressively worse.  However, since our symptoms and history with this illness are very similar, you're post here has given me back some needed hope!! 

When I'm ok and then suddenly go down hill, it happens just the same as you described (within minutes, can't continue with what I'm doing) and then I'm back in bed for the rest of the day or sometimes a few days.  Then to see Dylan say that it happens the same for him...well, at least I don't feel so alone.

I've only been on CAP for 5 months, so maybe it's just too soon to notice those "glimmers of hope" that seem different from the occassional OK days I had prior to CAP.  I'm still planning to devote at least a year to the protocol.  Providing I can continue to afford it...losing work right and left...and with being so sick and unable to drive or use my arms and legs most of the time (or limited amounts of time) job prospects aren't looking to good.  Filing for disability but not holding my breath to get it!

Anyway, didn't mean to start rambling and get off topic, so once again...thank you for this post and keep em comming!!Smile

Best wishes to all!

Lori

 

FM/CFSi/IBSi/Reynaud's/suspected Lupus and many neuroi problems, disabling muscle & joint pain and weakness.

Started CAPi 4/10/13 - Doxyi 100mg bidi/Clarithromycin 500mg bidi/NACi 1800MG per day/Flagyli pulse 500mg bid once per month,All supplementsi<

Big question would be if people not doing the protocol would also have this up&down or not.... 

 

MMHHPP

RRMSi since 2010. Asthmai sufferer during  2008-2012 - Free of asthma since started  Wheldon protocol- october 2012 doxyi 200mg, Azytrom 3x week, NACi 1200g day and vitaminsi-  January 2013 started Flagyli pulses. i s

I don't quite get the graphs.  The before-CAPi one would imply that the first time you fell ill you immediately sunk to the lowest point and felt as ill as you have at any time since.  That isn't the usual course of decline; is that really what you mean?

Thanks for all the responses.  Much appreciated.  I’ll try to respond to each:

HealthyGirl – I suppose the bottom of my graph is a combination of feeling ill and debility – with the balance of those two things varying, but adding up to a whole.  I tend to be as ill each time, but, in answer to your question, no, I haven’t found that all the improvements are lost each time things fall back.  It’s very variable and really depends on which bit of me seems to be targeted.  I’d say it tends to be one step backwards, before a couple of steps forward again.  My walking is a bit worse again at the moment – but that seems to be more because my left leg is tiring more quickly than because of any more weakness.  I’ve had lots of pain inside my head the last few weeks (it’s in a very specific spot and has recurring for 25 years) and now the cognitive problems have returned – all the info is in my brain but there seems to be missing bits which is stopping me accessing some of it, so that I can’t remember stuff I know that I know.  Handwriting is still fine – but I keep transposing all the letters and numbers when I write anything!  But it’s been like this before, and improved, so there shouldn’t be any reason it does improve again.  That’s the thing which reassures me.

Po – my original diagnosis was ME (in the days when most doctors didn’t believe it existed!).  Things changed very much about 8 years ago, and my neurologist now believes it’s most likely MS.

Lori – as you say, it’s so good and reassuring to know that we’re not alone in the way all this happens.  And yes, there do seem to be lots of similarities in our symptoms and histories.  Yes, ‘glimmers of hope’ are different to those occasional OK days we used to have.  In fact, I’ve found that they’ve made me realise that even those OK days weren’t as good as I’d thought.  They’re glimpses of being properly OK and suddenly being able to do things without it being the struggle it always used to be.  I think, for some of us, it probably takes more than a year to see those glimmers.  But once you’ve seen them, you just keep on wanting more!

MMHHPP – not sure what you mean, but the only thing which changed, which could have caused my graph to change overall direction, was starting abxi.

Norman – yes, that is what I meant.  I went from being a well person, with a job I loved and a busy and active life, to being too ill to do anything at all, within the space of about 2 hours.  One day in January 1989 I left work one day feeling fine, caught the train home, and by the time I got home I felt really poorly and flu-like.  And I never got better, or was able to return to work, again.  Diagnosed at that time with EBVi, eventually ME, then, about 8 years ago, the neuro symptoms changed and increased and it became more MS than ME.  Over the years the lowest points have evolved to be qualitatively different, with far more neuro debility now, but yes, I immediately sunk to one of the lowest points and stayed there for at least a year or so before any improvement.  Lost my home, my career, everything.  With hindsight, I’ve realised that, even before that, I probably hadn’t been completely well, with a long history of frequent chest infectionsi and sinus infections, interstitial cystitisi at least 5 or 6 times a year from about age 13 and lots of other weird stuff.  I had pneumonia at age 2.  I now suspect that something had been lurking for a long time and that the EBV tipped the balance of things.  But, yes, the graph is how it happened. 

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Boadicea,

Thanks again for the info, it is reassuring to me also to hear that others are going through similar things, esp. because I'm following a different course of treatment. I just wanted to further comment on the feelings of localized inflammation that you mentioned.

Lately my body has seemed to shift to focus on these sinuses that I hadn't even realized I even had, the ones in the forehead. I guess they too are infected. The strange thing about the course of treatment for me is how area specific it is. My lungs were completely untouched until 8 months in when all hell broke loose. And now, after my cheekbone sinuses have been the battlezone for months and months, these frontal sinuses all of a sudden seem to be the strategic target. It all makes me think that it's really the immune system doing most of the work. If it was purely the antibacterial effect of the compound that you take, you'd think the die off and these localized feelings would consistently be distributed equally throughout the body. On the contrary, it seems like things proceed based on specific bodily structures, like a SWAT team clearing a building room by room.

When an area first gets 'discovered' it seems like for me this is when the most die-off occurs. Lately with these new sinuses under attack I've had an increase in all sorts of die off related symptoms, including reacting to again NACi, which hadn't been happening for a while. I suspect that these virgin areas have more actively replicating Cpni and thus more EBs are released initially. Eventually the easy targets are eliminated and its then a matter of slowly picking of the Cryptic forms which have stopped replicating due to the assault.

You mentioned that one of these spots you noticed being worked on was your brain. I'm curious what you feel in this case. I don't know that I've noticed this and am not sure what it would feel like. But I'm trying to assess what other areas could be potentially be infected but are still dormant.

Dylan

--

Positive Lyme test via IGeneX Western Blot, Cpni probable but unconfirmed by ELISA testing, Babesia also likely.

Buhner and Cowden herbal protocolsi, NACi, Artemisinin, Xylitol, Lactoferrin, other supps, essential oils, sauna

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