It has been some time since I have updated my blog so here goes.  What to say???, breath, wind me up &&& …. I have been disengaged on the site as I just haven’t had the mindset to handle the stress.  I apologize for this as I know that my support has made a difference to some.  I found myself reading the posts and was getting stressed out & frustrated with it all.

This is a short blog of hope for those of us who are having a hard time seeing far ahead.

Last Sunday night I finished my 53rd pulse of flagyli. After more than three and a half years, I was back on Rifampin. Vertigo had hit me fairly hard as soon as I took my first capsule so I was curious how this pulse would affect me. Last fall and this spring I did extended pulses and was not mightily affected, which was encouraging in itself.

Last month I added Rifampin to my arsenal again, after taking it twice a day for sixteen months and stopping it in Jan., 06. A few things have happened since I started Rifampin a few weeks ago. I decided I should set them to paper while I am lucid (so to speak).

This is the news:  In England, possible antibioticsi to be sold over the counter, to treat CHLAMYDIA!

This is the story form http://www.guardian.co.uk/society/2008/aug/06/health

Oral antibiotics are to be made available for the first time without doctor's prescription under guidelines approved yesterday by the medicines regulator.

A pill to treat chlamydia, the most commonly diagnosed sexually transmitted infection, will become available for purchase in pharmacies across England later this year.

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.

We got our FIRi sauna set up last weekend and I have been eagerly but cautiously using it for 10 min. at the start of my day after drinking water to hydrate first thing. Probably the most interesting result thus far is it restarted the eye burning, sneezing, bronchial irritation with resulting cough. These are all at minor degrees but nevertheless it is a direct response to using the sauna I believe as nothing else has changed in  my environment. The heat from the sauna feels soothing on my sore back and shoulders but causes some itching and then later in the day they ache again especially at night. But less so than on the MPi and prior to starting the NACi, supplementsi, etc.

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.

Six days after surgery for double mastectomy in Jan, 08, I "did a pulse", thinking since I would be out of action for a while, I wouldn't waste time doing nothing. Boy, did I get the pot stirred! I think all the flagyli went straight to the surgical site - and I understand that cpni bugs are found in cancer cells. I don't know if this is common, but maybe the experts can comment. In my last blog I mentioned that I am the third known case on our site of this kind of cancer (DCIS or a close cousin), and have since learned of at least three other stage four cancer cases of close friends or relatives of members.

With Springtime finally here and things going so well for me I thought it was about time for an update. Since the inclusion of Prilosec OTC and Calcium Pyruvate six weeks ago I have improved tremendously! I also added in Inositol and Ribose, and have doubled the Norwegian fish oil caps to support my nervous system while I discontinue antidepressants. I am still waiting for the other shoe to drop but here are the changes: 1. Able to successfully discontinue Wellbutrin XL 2. Able to tolerate Flagyli pulses now [timely and full dose] 3. Able to tolerate 600mg NACi daily[first time since I began CAP] 4. Beginning to gradually reduce Zoloft and Trazadone 5. No more strep-throat type neck aches, etc 6. Previously chronic low grade temp. is now a RARE event

Yes, I broke into my stash of INHi from last fall and took my very first dose of INH tonight with my second dose of Rifampin for the day, hence the Rifampinianaut. Isoniazid is the full name of INH and I just couldn't bring myself to label myself the Rifampiniazid. Of course, if one want's to be completely accurate, I would have to also work in Doxycycline, Azithromyocin, N-Acetyl Cysteine, and Metronidazolei. Hmmm....the Metroxyzithricetylfampiniazid, lol!!! O-kee, D'O-kee, I think not, lol

Today I had my post-op checkup - "spectacular", got the drains and the Iron Maiden (my name for the ace bandage) removed, permission to drive (hot dog!), restrictions - don't lift 50# bags of grain for 4 weeks - not even 25# buckets. Will do. The very best part, though all that was pretty good - absolutely clean path report.

Today I am eighty days post twenty-six day flagyli pulse and though I have not been around the world, I feel as though I have climbed my share of mountains. I was going to do another long pulse in January but have postponed it for two reasons: the first reason is that I have noticed, as have many of us, that the longer and more intense the pulse, the longer the recovery. It has been no exception with this extended (for me) one. I find this as a signpost for us - don't feel that "this is not working" if you choose to go outside the boundaries of the written protocol. This applies with the regular protocol, also, especially early on when this foe is lining up its defenses. We are writing in blood the new rules.

look inside the box and see what's in there .........

SUPPLEMENTSi!!!

All sorts of pills in different shapes and sizes, and BRANDS.  So here's the question - Does anyone detect differences between one or the other?  Does it matter where we buy them? Is NACi the same regardless of where it's bought?

Went to my Dr on Monday after six weeks of Doxyi 200mg/MWF of Azith 250..time to add the  bad boy.  Flaygl.  He voted for 250 1x day for 5 days since I had only minor reactions to the other meds.

 Went straight to CVS and took my first dose Monday night.   Tues, Wed, Thursday came and went, I have been working about 50 to 58 hours the past couple of weeks and still doing reasonably well.   Sat in the infrared sauna for 30 mins on Tues evening and got shaky so no more for the week.  

I have been counting the days since pulse 19 and waiting for some sign of improvement to indicate when pulse 20 should commence,but no such luck. The myalgia/inflammationi set in within 3 days of starting #19 and has remained firmly entrenched. Advil round the clock helps a bit. Pain has cropped up in surprising places: neck, shoulders, tight, ropy spinus erectus muscles have been the name of the game making ambulation so trying that I have found myself in tears just attempting the simplest things. I think I feel worse than I did two weeks post pulse. I admit some of it must be posture-related as I have been too tired to do much. I can be tough about this, but I fear another pulse may just worsen things further?? Am I wrong? -kk2