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Pulse #33

Pulse #33 here we go ...

Yes, I am rather late this time but then I have had very little energy; rather like a wet rag.

I have been rather depleted lately, so I haven't even logged on for a while. Having just started a pulse, it was necessary for me to log on in order to post. I went out into Swansea yesterday but today I am back to just basically doing almost nothing.  Here in the UK, the popular and universal get-out seems to be Brexit; I don't think I'll be blaming my lack of energy on that.  Hopefully, in a week's time I'll be singing from the tree tops.

Wink

G.

Tini Pulse 18 - 14th full 5 dat pulse

Up to 4th day... not much to report on this one...

49 done changed to ramphin

ok so started raferpin - not a whole lot of difference so far but seem to have regained apperite which has to be be good, still not walking,pain in feet as gefore sill living in hope.   I hope for more improvements,  especially walking and brains seem tolive in confision - not good anyway still convin yced that I will recover its a very slow process for me  anyway best wishes to all on this marathon, love Suzannne

Keeping a Lid on Cpn

Hello again,

just checking in this month. I have been really busy extracting myself from my teaching job. I retired and I'm finally free. Now I will have the time to take better care of my health. Had some Cpni testing done earlier in the year and levels have been rising. I did a few rounds of Ivermectin and it cut the testing amount in half but Ivermectin only goes after the elementary bodyi form of Cpn.

Simvastatin anybody taking this?

hi there

 Is anybody taking Simvastatine for is SPMSi ?

 Any benefits ?

 I would appreciate your replies....

Pulse #32

This is more than just a little bit early but, hey-ho, I completely missed pulses at the start of the year (due to lack of drugs).  I started my previous pulse on the 5th of June and I popped my first tinii tab of this new pulse earlier this evening.  I haven’t been feeling great anyway – very tired, weak legs and slower than ever – but as I don’t tend to suffer greatly when on a pulse, why the hell not?

physiotherapy

Hi there,

Before I started CAPi I was going to physiotherapy 3 times a week and got by pretty well with my cane....

Once I started NACi I became too weak to go to physio and now use a walker for short distances and a wheel chair for everything else.  I have now found a physiotherapist who makes home visits and she is coming today to do an assessment.

I live in denial about how I am deteriorating and I am sure she will make me face this. so I am not looking forward to her visit.  On the other hand, maybe just maybe, she can help strengthen some muscles or bring back some flexibility to the spastic ones...

Wish me luck!

I'm almost cooked

Jeez, how time flies. I ramped up pulses to every other week and have now done at least 24 and will start another this weekend.I r        eally think that I have just about done it. I remember being told that I would finish with what I started with and i am breaking out in patches of psoriasis and that is what I first had. M    y MSi - balance is still off and my eyes are still damaged. Rheumatoid - my joints are much better, my knees are still deformed but they are working. I have started to lift weights and I have been able to do the gardening this year. I am walking without my stick most days too. I have more energy, I can focus much better and I feel well mentally.

Tini pulse 17 - 13th full 5 day pulse

One week until the house and nursery are sold.... I started this pulse 2 days ago... so far not so bad - but the pyruvate does seem to increase the pulse effects a little...

2nd pulse

hi I'm currently on my 2nd pulse am able to do the full 5 days with no side effects could anyone tell me if this is normal taking doxyi daily azithomycin  3 days a week  then the full 5 days of metronizole was very sick the first few months but now everything has calmed down is this supposed to happen

Mark's update after 24 months on the CAP

Guys I thought I would post this –it might help some out there. I live in Australia. I have had CFSi for around 20 years & have always been able to hold down a job (at times coming home early for a nap). I have still been able to get out & exercise (I love cycling & skiing!). I live in Australia. Often it takes me a while to recharge after these activities. You could say that I was running at about 70% of where a healthy person would be. My main symptoms are fatigue & brain fog. After visiting 18 different Dr’s finally one diagnosed me with CPNi & I ended up seeing a Dr who is happy to treat this in Australia. He started me on the tinidazole, roxythromycin & minocycline. After not herxing on any of these he switched me to a longer pulse using the metronidazolei.

Crushing Bore

I just noticed that it had been a while since I was last here and posted anything so I figured I needed to just say, "Hi".

In the winter of 2014/2015, I had several instances where I lost control of my legs (the most severe MSi symptom I had when it started).  This winter, I had no problems whatsoever.

I assume everything is going along okay since I still get up every morning and go to work and my performance hasn't suffered. 

48 nearly over - still living in hope1

Nothing major to rport this time, however things in genaral have improved.  Still not walking but bladder control is still ok.  Cam now get up off the foor, am sure that this protocol is working - just v slow which I know now is connected to chamo I had bacl in 2003.  Have seen several posts recently connecting alheminers with cpni, am sure this connection exists,  My granmother suffered from it  now faher is loaing his imind and I have MSi.  Anyway continue living in hope,  best regards to all. love Suzanne

CHronic intraocular CHlamydophila felis, non - reactive to WP - HELP

So after years of Wheldon Protocol with Rifampicin and my sight worsening anyway, i had a PCRi analysis of the aqueous humour and the result is - an intraocular infection by Chlamydophila felis. These bugs clearly had only fun on all the treatments until now.  Veterinary medicine uses  Enrofloxacin to eradicate this pathogen; i was told there a 100% eracication in six weeks in cats. But then again, im not a cat and my infection is very chronic. DOctor put me on Ciprofloxacin for now, but i wonder, if that enough. Should I possibly add Metronidazolei? Not sure about Penetration of Metronidazole into the eye (of course, i will sort it out with doctors, too, but i wonder about anyones experiences). I nearly didnt do Metronidazole because of horrible herxes.

Pulse #31

Earlier today (5th), I popped my first tinii tab of this, pulse 31. I have been very tired recently and been sleeping for England. Today in Swansea there were big road closures due to a Triathlon. I think that I should have been allowed to participate in the sleeping part of the contest ... but apparently, there's no such thing. I shall have to book my place for Rio; when it comes to sleeping, I shall go for gold.

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