Year and a half update.

Submitted by paron on Sun, 2007-09-30 16:16
I haven't posted in a while, not because there's no progress, but because it is so uneventful. Let's see: I can now putter around the workshop for 2 hours, dig a big hole in the back yard for an hour, and go to the library in one day without being hammered the next, if I take two naps in between the activities. Or, I might work at my computer all day, vacuum the house, then go to the grocery store. We recently visited our daughter in France. Pushing hard to see as much of Paris as is possible in three days took a toll. I needed three naps per day for the first few days at her house. She lives in the Charente, a fairly quiet region (I loved it there). Our daughter assisted Dianna in watching for the grayness of my face, and saying things like, "We have a few minutes until lunch, Dad, if you wanted to, oh, lie down and read for a while." Also, a day's work at the computer and a 90 minute yoga class is about 30 minutes too much yoga. I was still recovering the next day, which means I exceeded my capacity at some point. I can tell I've gone too far when exertion makes me cold and disconnected, instead of warming me up and energizing me. People who only see me one time might not notice anything, people who see me weekly might not notice anything for a few months, but people who know me well sense immediately that I still have some deficits. There it is, then -- all completely subjective; not a measurable result in sight. Still, maybe this will serve as a trail marker for those who are coming along behind me. Ron

I should have said that people who know me well sense within a few hours that I still have some deficits. "Immediately" was vile journalistic hyperbole.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.

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Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Dear Ron,

I'm sorry things are not moving along as you hoped for.  That must be very frustrating.

You were so very kind and patient with me when I first came on here that I wanted to just say "hello." 

Have you ever tried NADH -- it seems to pull me out of "crashes." 

Perhaps more green veggies and other good nutrients might help sustain the improvements.  Maybe time to add some new vitamins to go along with the Cpn protocol?  Have you tried cutting some things out like gluten, etc.?

I'm still not on abx as I have to go very slowly.  I am trying to build myself up via nutrition and my doctor's compounded concoction which has glutathione and some other stuff.  Adding some vitamins very slowly. 

I've noticed some very odd changes -- for example, my nails which have been brittle and ridgy my entire life are now smooth and hard and not splitting.  It's a peripheral change, but seems significant.

I've also noticed I'm calmer, can get to sleep a bit earlier (5AM versus 10AM) and have much better concentration.

So something is improving.  I've been on this compounded supplement for almost a year, so I can see it works very slowly.  I haven't added any other new vitamins so it must be this particular one. 

Of course I want the BIG change which is a normal energy level -- I want to be able to do more than just a few hours of something. 

It is so hard to live with peripheral changes and not see the big changes in energy come about.  BUT as people have said here -- you ARE making progress, but it is modest and slow.  I could never travel to France or do something that exhausting.

It's great to hear from you and how you are doing -- I was thinking about you and wondering how you were.  Enjoy this lovely fall weather and I hope things will move forward for you.

denise

 

63 year old woman who feels like 100!  CFS since 1998.  Main problem -- severe fatigue with "going into shock" feeling very often.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - had to stop.  No abx yet --

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

 Ron- I can recall when some house cleaning wiped you out for two days, so progress there definitely is. Albeit slow. It might be time to add INH or rifampin to the mix, or try the sauna addition (call me about it). I think that a lot of us CFS folks need some additions to get to the nature of the infection we have. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

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

Hi Ron - I'm just getting started here, so I'm one of those coming along behind you.  Vacuuming the house and going to the grocery store after working all day without getting hammered?  That sounds great!   You must be making progress!

Also 90 minutes of yoga - wow.  I'm barely able to do any yoga at all right now, or even just walking.  Even 30 minutes of yoga is way out of reach for me.  This is very frustrating, isn't it - to feel you're losing all of your fitness?

As a fellow PWC, I think you're coming along great.  If I can do in another year what you're doing now, I will feel like I'm getting there.

I also notice that you, Jim, and I are quite close geographically.  Haven't we had some really great weather lately?  Unusual.

Finch - Western PA USA

ME/CFS since 1991 - CPn diagnosed June 07 - began Cipro 760 mg 2x per day - added NAC 600 mg 2x per day July 07 - Stopped Cipro and began Doxy 100mg 1x per day on 9/18/07

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

 Yes, today was exquisite! Went apple picking with my daughter and a neighbor and it was the most balmy, beautiful fall day in record. Nice to be able to enjoy, pick apples, and not be totally wiped out after.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

 

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

Denise, I get the feeling that Ron's post was slightly tongue in cheek... I don't think he is disappointed at all. I think he realises that the progress he has made so far is more than one could expect from any other treatment. Being able to do 90 minutes of yoga even if you have to pay for it later is one substantial achievement.

Good on you Ron you and I probably started at about the same time and I can now say that I have noticed improvements in my more painful bits, feet and guts. However my hair is taking a slight step back at the moment. But I think that is the way things go with this treatment.

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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

Thanks for the suggestions, everyone. Jim, I will be seeing my Doctor soon, and I will mention the Rifampin. I am also considering asking about continuous Flagyl. I will also ask about the NADH -- it would be nice to have something extra for those little setbacks.

 I wish it were faster, it's true, but at least I am improving instead of getting worse. As Michele notes, we even get 'worse' sometimes, for a short while. 

 Finch, I am lucky in one way -- I didn't get sick until 2004, so the road back should be shorter. You are right about the weather. Our area's only claim to a decent climate is that we have a long, delicious Autumn, but this year's has been exceptionally fine. Even my daughter in France is jealous.

 

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent