The title was suggested by a conversation between two of our most battle-hardened warriors, and I couldn't resist it. This has been one of the most eventful years of my life - busy, too. Beginning in January with surgery and moving through kidding season, then a very, very good show season, this last taking a temporary break after the best Nationals in years, then linear classification of our goats, now a break for the really bad August heat (this is AFTER the really bad July heat), then a resumption of show season next month, which wil begin my fifth year of MSi treatment.

OK, we're now well into this and the pill taking is becoming very tiresome. I have to admit to lapsing with some of the less important supplementsi, mainly because I just couldn't face taking another pill which is maybe why I'm currently driven mad with what feels like ants running around under the skin of my left leg.

I have to keep checking to make sure nothing is running around on the outside of my leg, and there isn't, or, if there is then I have eye problems instead.

If this normal? Or is it me being odd again?

 

Day 3 of pulse 25 is well underway.  Over the weekend, I had two days of taking the higher dose of Metronidazolei and it continues today with 3 x 500mg, this time in pill form as opposed to the capsule form.  I can now say from first hand experience, there is a major difference between taking the capsule form and taking the pill form.  The pill form is NASTY.  Horrid, horrid taste!

I've started attempting to toss the pill back in my mouth to my throat in hopes of missing my tongue entirely and washing the bugger down.  Uggh!!  I had it easy with the capsule form!  Unfortunately, when my doc increased my dosage, he also increased the amount of pill prescribed so that I get a 4  month supply at a time.  Now, all in pill form....yuck!

I am beginning to think about moving from continuous to intermittent protocol. I took a Falgyl pulse last week and the primary impact was to make me feel a bit morose and I wonder if this is more an effect of the Flagyli alone. I am generally extremely well, and in some ways I fell better than I can remember. For example I cycle around my town, which takes me about 25 minutes (non stop, quite fast), and I find this easy but I am sure that prior to my MSi dx it would have felt like much harder work, and it is not really about fitness, it is more that I am free of some sense of lethargy that I used to live with a fairly permanent basis (unknowingly).

I'm on the fifth day of my second full pulse.  I've had no problems and am wondering if I should continue the pulse more days.  The reason for the question is that I think I have read here (someplace) that more days are better.  I'd like to be off the pulse, I guess because I keep waiting for negative reactions and feel that days are consummed with taking pills, but if it would be effective to stay on, than I will.  BTW because I am not having negative reactions, I worry that this "isn't working" for me.  So, 2 questions: 1) should I go more days and 2) is it common to not have negative reactions.  This site is a lifeline and I actually feel close to you all.  Look forward to hearing from someone.  

OK I wish to complain. There I am, happily doing CAPi. Everything going along swimmingly and then I start my first pulse.

Well day 1 was fine. 1 Metroi - no real issues.

Day 2 - 1 Metro - also fine apart from a sticky eyelid problem

Day 3 - 1 Metro - feeling decidedly odd. Very queazy in the morning which drove me back to bed. Fine later on.

I decided at this point that 3 days was enough of a pulse for the first one. However, I now seem to be having queazy issues every morning. I can only assume the Metro has set off a reaction to Doxyi that I never had before as this feeling seems to come on after my morning abxi.

I'm thinking of moving them to late night so I can sleep off the queazies. Anyone else do this or have any warnings about night time abxi?

I'm now on full doses of both of the main two antibiotics. So far, so good, however, it's so very difficult to tell right now whether my symptom increase is coming from my extra daily activity, (been doing repairs on a rental) the extremely hot weather we're having here in hell, er, Phoenix right now (was 115 this afternoon in the shade) or is it simply the antibiotics are now catching up with me?

At first I thought I was having allergy symptoms from cleaning the filth and dust in the rental which I do believe is part of it but I'm wondering if some of the symptoms I'm having are actually an increase in NACi flu? Has that happened to anyone as they increased the abxi?

Well here I am again but this time on the brink of the first pulse.

I just took my jaunt over to the Pharmacist. After the last debacle I was a bit of a coward and took this scrip to another branch of the same group which is smaller so I figured that there'd be less people to get embarrassed in front of.

As it turned out, when I arrived it was empty so I didn't have to adopt the disguise but I did have a chance to have a long chat with the Pharmacist. What a nice man.

Well end of week 8 and this seems to be doing nothing for my brain. I'm still completely ditzy and yesterday Forumed when I should have Blogged.

Energy levels are odd. Some things I can do with great gusto, others have me puffing and panting like an old boiler. For example, Saturday evening I was running a gig in Bedford. It's at a club on the 3rd floor of a building and there's no lift. (3rd floor UK... 2nd floor US).

Day 2 of pulse 24.  Nothing remarkable to report, the pulse is going much the same as most of  my prior pulses have gone.  I have a bit of heaviness and burning in my legs but otherwise feel about the same as I did before the pulse.  This being the second day, that could easily change come Monday when the work week begins again, as does my work schedule.

I stopped INHi about three weeks ago and have been having less inflammationi.  What I had before made it really difficult to function on some days, I just wasn't able to get around the way I was before INH and since getting off of it.  I think the combination of abxi was just too much.  I even did two pulses while on continuous INH.  Better to scale back a bit.

OK you loony pill poppers, I have a question.

Anyone else experiencing faster nail growth on CAPi? I seem to be cutting both finger and toe nails far more frequently than before.

The other weird thing is my armpits have gone bald. Not that I'm complaining, I hate having to shave them but we're off out tonight so I hopped in the bath and pulled out the razor, directed armpit toward mirror and...

rubbed eyes, looked closer. Rubbed mirror. Went and got glasses. Peered again. Checked other armpit...

Nothing.

Now I've never had a huge pile of undergrowth there but I did at least have some. 

Oooops, missed a week, slapped wrist.

End of week 7.

Week 6 shot past in a blur as I was so busy. I guess that says a lot as I was actually able to be busy and not constantly get bugged by the MSy shakes.

Week 7 I've been just as busy and week 8 gets worse as I'm busier, however, I've had a couple of reminders that I'm not 100% over the last few days.

Five weeks down, ??? more to go and this week I've actually been feeling really good. The eyelid flicker has decreased since I increased the CQ10.

I've spent most of the week gardening. Done a lot of heavy digging and sack dragging and I hardly experienced any left side weakness. Once or twice whilst trying to stomp the shovel into a particularly recalcitrant patch of earth I noticed a reluctance from my leg to provide the necessary force but other than that, fine.

I had been expecting problems as last weekend I ran out of NACi and my new supply didn't turn up until Thursday. As soon as I started taking it again, back came the sinus headaches so I suspect my previous euphoria was NACless related. Still feeling fairly energetic though so onwards and upwards.

Forgive me if this information is covered somewhere else but I have not been able to find it. I have CFSi/ME/Fibro and am desperate to find somewhere to get tested for mycoplasma and someone to treat me.

I can not find a clinic in the UK where Dr Wheldon works. Does he only treat MSi patients? Does he have a contact email? Does he recommend other practitioners?

Can anyone tell me how I can get testing done in Europe? I am from the UK but live in Switzerland. I am soon to be moving to Belgium!

If people can not find a Doctor to help them, do you self treat?

It feels like there is a carrot being dangled in front of me that I can't reach.

I already have to self treat for heavy metal poisoning but it would be so nice to have a bit of help.