Pairing the CAP with LDN: A New Beginning

Submitted by kitkat2 on Sat, 2007-10-27 13:17
Update: I have increased my Amoxicillin to 1GM twice daily, also splitting my Doxy doses to twice daily instead of all at once. I believe that the increase in Amox has allowed me freer breathing in both nostrils[new improvement] and my hearing is better. I noticed the clock ticking yesterday and I do not think I have heard that in over a year! I have lost 30 lbs since June through a steady effort of avoiding sugar, and the kitchen for that matter. I have found a less fattening way of preventing stomach upset with all these pills I take. An apple or half a banana beforehand seems to work. No more pb&j. I have found a doctor to prescribe ldn for me and started taking it this week. So far I have noticed increased spasticity and a kind of mild drowsiness during the day--not my desired outcome, but it is still too early to make a fair judgment. The good thing about it is that I could probably fall asleep without Trazadone. First time in over 10 yrs. If this improvement continues I will cautiously explore cutting back on Traz. I have long been bewildered by my sudden need for soporifics at the age of 36. Maybe ldn will be one of my magic bullets. Is it possible to have more than one? My body's need for Flagyl pulses presents as burning leg pain these days. The knee thing is still there but less prominent. Gait is still stiff, but not as frankensteinish as it was early in the cap. I still wall walk and need the rails going up and down the stairs. However I am still driving and very happy about that. Still plugging along. -kk2

And if I might say so, KK2, you sound happier and more positive with these changes than you have seemed for a long while.  Even a sense of humour is popping through, with regards to avoiding the kitchen as a way of losing weight.   By the way, I still use the banister rail for going up and down stairs: it seems silly not to, although ten years ago I would have laughed at anyone telling me to.  In fact, ten years ago we didn't have any banisters, throughout all three floors.  The staircases were all boarded in floor to ceiling when we bought the place.  I thought the original ones might be underneath the boarding, but no such luck.  It took us a couple of years to get around to putting new ones in.  Dreadful to think about now.Image removed..............SarahAn Itinerary in Light and Shadow   Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hey kk2,

you are sounding alot merrier which is clearly a good sign.  The hearing improvement is great, now you can stop people from shouting, lol.  Isn't it cool when things like that happen.  A while back I was watching the boob tube & suddenly things on my pre HD set seemed like it was in HD, I was like WOW I can see clearly now, the rain is gone! (to quote a song)

My merrier comes & goes, though I appreciate it very much when it is here.  Husband off to work from days off on Monday so I will pulse #3 then.

Blessings

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 9-30-07 2nd pulse 1 X 250 mg Metro

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<

I just sat down to play my piano-first time in over a year. I haven't wanted to and have become pretty rusty but I still managed to play a recognizable rendition of Come Rain or Come Shine. Fun.

 

On Wheldon regime [Doxy, Azith, and Flagyl]  for rrms since October '05.  EDSS was 6.5, now 5.5.  United States.

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Oh - you're inspring me!  I don't know when the last time I played was.  I'm afraid I'll have to get it tuned, first, though.

So happy things are going well for you! 

Finch - Western PA USA

ME/CFS since 1991 - CPn diagnosed June 07 - began Cipro 750 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 - Azithromycin 250mg M-W-F started on 10/10/07.

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.

KK2 - Yay! SO jealous. Being able to play speaks well for coordination, but wanting to play again speaks volumes for mental outlook. My piano is probably beyond tuning or repair. It hasn't been played in twenty-five years, having been buried under Dad's collection of junk (to the point the contractor didn't know there WAS a piano in the childhood home, er, museum)!!! When we DO all get together, Arttile will have to tap-dance, Sarah can give a lecture on the benefits of acrylics, Rica can bring goat cheese and we will munch on it while you play Sinatra tunes for us. Jim and I can give a slide show on the joys of renovating a home while undergoing abx treatment. Marie, can you hypnotize all of us into believing we're in the Bahamas, while we're at it?

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

KK2, Glad to hear you are doing so well. I think it took a month to get use to LDN and stiffness was a problem at first. It really helped me sleep - I remember having dreams again when I started taking it. 30 lbs - congratulations!!!!! I am going to have to give up my pb and j sandwiches as well! On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

KK2, sound like things are getting better for you.   It will be interesting to see how you get on with the LDN.  

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.

kk2, I have been on ldn 1.0mg since 2004. I tried the 3.0 mg but my legs became soo spastic that I couldn't tolerate the higher dose. The ldn helped with my digestion, and with not having to urinate every 2 hours. It has been a blessing. good luck, kc
dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On mino 100mg/day biaxin 1000mg day and NAC 600mg. ldn 2.0mg.

It has been just over a week since I began taking 4.5mg LDN every night. I really like how I drift off to sleep now vs. before when I used to have to wait for the Trazadone to knock me out. The LDN makes for a pleasant transition to bedtime...more like it used to be for me. I am sleeping through the night now without spasticity, but am awakened every am around 5:30-6 with jumpy legs. Today is the first day that I have enjoyed a bit more energy. I accomplished much more around the house than I have in awhile. If only the spasms would go away, but alas, they linger like so much Flagyl on the tongue. -kk2

 

On Wheldon regime [Doxy, Azith, and Flagyl]  for rrms since October '05.&nbsp Added Amoxicillin 1gm twice daily and LDN 4.5mg October '07; EDSS was 6.5, now 5.5.  United States.

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

well KK, sounds good.  I am sooo looking forward to the day I can ditch the myriad of sleeping pills I take, including tarazadone.  sighhh.

I have inquired about bass guitar lessons.  I think I will move the Geddy Lee jazz bass & amp upstairs where I see it more.  I need to install my tutorial program on the laptop & plunk away at it!

I hope to play in our band at church for worship some day!(in addition to a plethora of other interests)

Image removed.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day

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<