Dark night of the soul...

Submitted by wini on Mon, 2008-01-14 08:58

I feel as if I just gambled... and lost.  I staked my old, really bad state of health in an abx poker game; the winner's pot would have been increased health.  And I lost.  

Now my heart is messed up, I can't exert myself without cardio symptoms.  And I know this about my body:  it can't clear toxins without exercise. 

I don't even know where to start, and the pain is so bad I can't sleep.

As Scarlett said, tomorrow is another day (or something like that); and I'll think of... something.  But oh, tonight is dark and ... almost hopeless. 

I know --- I hope --- you folks will understand.  I wear my warrior's mask most of the time; it's better for those I love, and for me.  It's just, sometimes, I need to weep. 

 

Wini

Things can look very bleak in the beginning, go only as fast as your body can tolerate.   Cardio symptoms are not unheard of but are not usually permanent.  

You can bare your sould here, Wini... we have all been were you are so we know what you are going through.

Michèle (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.

Cardio symptoms. (The reason I led off with this is so the topic of your post will get more notice, hopefully from the people who've experienced this on the protocol.) Wini,You haven't lost. The dr couldn't find anything wrong, so that's great. There's no test or measurement right now for killing cpn; those of us exeriencing it can 'feel' it, but can't quantify it. You're obviously 'feeling' it, which I'm sorry about. If you can't exercise, load up on water and antioxidants. Give yourself permission to relax. Anxiety over what you cannot control will just serve to make you crazy. Come tell us anything and we will tell you jokes, dance on the table, or do silly bird calls for you...whatever it takes to get you through this little tunnel you're in.

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

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

 I don't excerise and haven't been able to do that for many years because of my CFS. Every time I tried I felt  my body was breaking down not building up. It's no fun not being able to excercise if you are used to it,  but I agree with MacKintosh. I believe you are helping your body by taking it easy, not pushing yourself.

"Odhilda" CFS, not able to work or study since 1993. Mekobalamin (B12) injections 10mg x12/month.  Levothyroxine(T4). NAC 1000 mg. Started Doxycyklin 100mg 20/09-07. Roxithromycin. 20/11. Swedish is my first language.

"Odhilda" CFS, not able to work or study since 1993. Mekobalamin (B12) injections 10mg x12/month. Levothyroxine(T4). NAC 500-850. Started Doxy Sept-07. Started Roxi Nov-07 first Metro-pulse March-08. Swedish is my first language.

Wini,  the stakes are high but you have not lost, this is how it feels when you start to win.  I know EXACTLY how you're feeling because when I first started the CAP  my reactions were so dramatic and made me feel so ill that I thought I'd condemned myself to that state of health even worse than the one I'd just left. 

Slow down and give your body time to recover, it might not seem like it now but you will get though this and forget about how awful it is.

When I was in bed almost all the time and couldn't exercise at all I found that a chi-machine helped

http://www.thechimachine.co.uk/use.htm

 it gives you a massage and gets the lymph moving.   

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Wini, three years ago this month my husband had to do the Heimlich Maneuver on me twice, I was unable to think (which may be the main difference between you and me), I was still losing physical abilities, and never expected to recover any of it. I did not necessarily hope - I only existed, read, and took my pills. It has been a long, long rough road, but so worth it. Give yourself time - it will be long. I will repeat over and over - THIS BUG NEVER GOES QUIETLY!

 

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 48 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I sometimes think of scarlet o'hara too Image removed.!!  Wasn't she scrabbling about in the dirt at the time, though with rude health as i remember  ...

Meanwhile at times we can only weep and sleep or even weep and not sleep .... as our bodies try to heal .... i myself have had a difficult weekend  but ironically i think these are hopefully signs of healing, .....

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.
DD

Hey Wini,

Hang in there.  I find it really hard when I feel like s--t to remember that the junk left in my system after the death of the CPn is the culprit.  Once I can get it, that after clearing all the dead remains of my enemy I will not only feel better but actually have taken one more little step toward being actually healthy, then I can get things back into perspective.  I started pulse #6 on Saturday, and whoa boy--Sunday was a real wake up call--OMG I'm sick,, no maybe just tired,, or too cold-no hot,, can't think,, then--oh yeah I took the first dose of flagyl (2 tabs) yesterdayImage removed..  I forgot to expect to feel like this truck hit me!  Yep, that's it.  Well, a nap is in order and any other kind thing I can think of to get through the next few days.  Maybe a few dozen Charcoal tabs too just to help this stuff get cleared out. 

Keeping sight of the goal to get rid of this critter helps me be more tolerant and allow myself some 'down' time.  This site is great for adding levity and empathy in just the right doses.  I'll be thinking and pulling for you.

 

DD

CAP for CPn.

DD

Dx:CFS/ME;CPn;Post Polio:  On CAP since 3/05. Azith 500mg MWF, Doxy 200mg bid, NAC 1200 mg bid, Calcium Pyruvate 6GM bid, flagyl pulses,  B6, B12, Magnesium/Potasssium 2400/400 dly, Magnascent, Cholestyramine, D3 2GM dly, .

Win,

things will improve...expect the unexpected & have all the toxin remedies at hand & take them until you start to feel better.

Blessings

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

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<