All - at least mostly - in my head

Submitted by katman on Sat, 2008-11-15 10:47

Unexpectedly, in my 55th pulse, I got - as Jim K colorfully calls it - slammed.

Last Monday I returned home from an exciting week of over 6000 miles air travel and a wonderful visit in Palm Springs to see my daughter open her beautiful new veterinary clinic. I met some of her clients and patients and told many of them of our own ground-breaking site with its adventures. There is NO litter in Palm Springs. My home-coming was very different from those in the past in that I did not need "recovery days" after landing and then driving 170 miles home after a 15 hour all-day two flight day from coast to coast. Amazing.  Not only is there "one is never so blind as one who will not see", but there is never one as grateful as one who has been to hell and back.

A few days after my adventure, I began my flagyl which has been put off for months because of the Dairy Goat Nationals, a couple of other shows, the State Fair show, my trip to CA, my first artificial insemination (4 of them) in 25 years, and barn cleaning. All those things are done - and I remember them. It has been noted many times here that we never know what is coming. This pulse has gone to my head. Before I knew I had MS, one of my symptoms was the ceiling "flowing" from left to right. In the last few years, that has stopped - today it is back in full force, taking the whole world with it, revolving endlessly.  Richard escorted me into the house and put me here on the couch with my book and sone carbohydrates (whole-grain toast and orange juice) because I had to sit frequently because of the spinning of my world.

My sister at age 69 has just had a diagnosis of "possible or probable MS" - don't remember which. This makes 5 of 5 with cpn-related diseases. After emailing me with the news, she said "Thanks for not being pushy. I will decide what to do".

One of the benefits of recovering from this rotten disease is that we can decide for ourselves whether or not to use/abuse our strength. Last month I walked the 400 feet to our front gate to loosen the tension on our electric drive-through gate and injured my thumb over-using the wrenchs. It has hurt increasingly for weeks, so I went to see about it and got a steroid shot at the base of my left thumb. Ouch. I am left handed.

We are all accustomed to some level of pain, and in our case it is usually a barometer of sorts in our recovery.  This has been and is a great adventure and every day that we wake up breathing is a victory in the face of our would-be defeat.  The roller-coaster ride comes to a halt, albeit slowly.


Rather than a possibly redundant new blog,  I am adding to this a few days later.  However, it may be redundant anyway, since I am very definitely feeling flagyllized - I attacked a barn wall with a whisk broom last night and am again in the house during morning chores because of a gentle revolving of my world both ways at the same time.


I haven't checked the dates, but this is my first really serious pulse since re-adding Rifampin to my regimen in August.  At this moment, I have a piece of advice for those of us who think we are almost done - be certain to do Rifampin before you get too cocky.  If this pulse follows my previous history, in about six weeks I should feell clear of mind and light of foot.  Now I feel neither, BUT - compared to four years ago, it is NOTHING.

While I am here, I will mention that this afternoon I have a regular appointment with my doctor.  I will, for the first time, be on Day Four of flagyl when I go.  I am somewhat weird and staggery.  I'm not sure if this is reward or punishment for him.  I have always tried to be on, if not best, at least good, behavior.  I will also "turn in" our second survey of the "Questionnaire for MS Patients"   Thanks to all who updated - anybody who didn't and wants to, we have a few hours.  After lookinhg over the latest Lyme treatment decision posted on our site today, by people who have not one clue of the subject at hand, I have an even more heroic opinion of my doctor who is trying to help our cause.  Therefore, I will be approaching Jim for a collaborative effort on CFS, fibromyalgia, and the other vague-in-my-mind diseases, to put together another survey for him. 

The comments about the first part of my blog deserve comments in themselves, but I am strange, so my comments are distorted if well-meaning, and from memory: Michele, thank you for remembering that my vertigo is an old, recurrent symptom. 

Ruth, I do, indeed, keep my thumb in it's own little splint consisting of a flat piece of inflexible plastic and some duct tape (what would this world be without it?).  I remove it at night - it is getting better.  

Daisy, it is the Rifampin!

Hope I haven't bored anyone too much - if I have, just read something else!



Is there a possibility that the steroid shot has done this to you? There is sadly some unproven stuff written about steroids really saying that they can knock your world upside down especially with an MS/cpn diagnosis. I can look for this if you want it?This is also true for lyme.So much for steroids - temporary relief at best.Take care.



diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,

I know that steroids have a bad press, but they have been a life saver for my daughter.   Rica's vertigo is an old symptom and I know that old symptoms have a way of reappearing from time to time for a further clearout.

I was noticing today that I am able to stand on one foot to get dressed.   This is not something I have been able to do for quite a few years, and I can only put it down to my joints being so much better... but there are days when my knees are very painfuland I feel as if I have made no progress at all.

That is the way it goes with this treatment.

Rica I hope you ditch the vertigo soon and are fit and well for the forthcoming surgery.   

I'll be thinking of you for the next few days and sending you positive thoughts.


Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Rica, you are one amazing gal!

I suppose you could be slammed because of putting off the pulse?  no??  more bugs to kill.

Rest up that poor thumb, if you haven't already done so..tape it up for chores & such.  that may help the boo boo.

Sorry about your last sibling diagnosis.  I understand that not pushing this on people thing.  I just sent a bunch of info for my sister, who has had arythmia problems for some time.  My heart arythmia just kicks up occasionally now.  Her doc told her the heart is 15 years older than she is & she has had some clotting problems of late!  Anyway, I sent the info for her to decide what she wants to do.  I wouldn't be surprised if she does nothing.  I will not mention this information to her again, the ball is in her court.

I think my family thinks I am "a little out there" with all the supplements I take etc.   They just don't know but pass judgement anyway.  Frustrating, but what can you do.  Not all of us are willing to do what it takes to better our health.




CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

OUCH!!!!! Of course, this could be the universe calling, teling you to GET SOME REST. Take good care, my friend.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Rica - Amazing that by delaying pulses to enjoy life that you could build up so much that at 4 plus years in you could experience such a noticeable die off - WOW

Congratulations on living and enjoying your life rather than accepting an unthinkable alternative! 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Rica- I'm with Daisy. This tricky little beast really likes to hide in shut-down mode. Fortunately you've got the flagyl to nail it. Sounds like you got nailed along with it. After all your high level activity, time to sit down!


CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral