A couple of recent posters suggested that their use of LDNi (low-dose naltrexone) seemed to buffer or mitigate the severity of die-off symptoms on the CAPi. I thought I'd put the question out and see if those of you using LDN for other reasons have noticed any variation, for example when you have run out of LDN but continued your CAP meds, or had Flagyl pulses with and without LDN, or had inadequate LDN dosage for a time inadvertently, etc.
If LDN acts as a immunomodulator as it is suggested, perhaps it is modulating the inflammatory cytokinei reactions to bacterial kill.
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CAPi for Cpnii 11/04. Dxii: 25yrs CFSii & FMSii. Currently: 250 aithromycin mwf, doxycycline 100mg BIDii, Tiniii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
Mmm, I've wondered a lot
Mmm,
I've wondered a lot about this Jim but have no medical background to figure out what is going on.
I was a HUGE fan of LDNi for a couple of years. But then it didn't seem to work any more for me and no matter how I played around with the dose I couldn't seem to get the effects I had in the first year.
When you say "had inadequate LDN dosage for a time inadvertently" I'm really not sure how to respond as I was never quite sure what my 'adequate' dose was. Does that make sense?
All I know is when I added the Abx + NACi, I couldn't tolerate the LDN. Recently, I cut out NAC and began ramping up on LDN again but I still feel lousy - with very obvious mood swings.
I've just decided to cut it out altogether until I get my Abx doses right. Mixing in the LDN has only made things worse for me personally.
I will be very interested to read of others' responses. I know some CAPers are doing well on the CAP+LDN combo.
Began CAP Oct.06 for SPMSi. Currently on Doxy/Roxy. No pulses as yet.
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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.
Most of my patients are on
Most of my patients are on either LDNi (all the cancer patients are on it), or CAPi. I do have 5 people on both, myself not included.
It is impossible to tell how LDN influenced their treatment, because LDN was started before CAP, or simultaneously. I did not get any report that there was something wrong.
I will try to contact all of them and specifically ask what do they think about the combination.
Barbara
Multiple sclerosis, on Wheldon protocol since February 2004, EDSSi 0 for over 4 years
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008, but still occasionally pulsing. EDSSi 0 for over 6 years.
I do not know as I was on
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Jim, For what it's worth,
Jim, For what it's worth, what you are groping for is exactly what I have been hoping for since the begiinning: a kinder and gentler CAPi with the help of LDNi. Steve started LDN about two months before starting the CAP; thus, we have no basis of comparison. Just to cloud this picture more...because of an idea mentioned in that recent thread on LDN, I withheld LDN from Steve this past Friday and Saturday nights to allow dissipation of any possible saturation. Perhaps the timing for this experiment could have been better. Steve's pattern lately has been to have a shorter post-pulse period than previously, but then to experience a later wave of bacterial die-off and apoptosisi. It's been almost like getting a "2-fer," and his cycle is still running in the 5-6 week range due to this double punch. Anyway, last week the strong exacerbation seemed to be over, but he was not doing well either, just sort of feeling crummy. On Sunday, following the two nights of LDN abstinence, Steve experienced that same type of visual brown-out with the hood effect like he had a couple of weeks ago. It lasted for several hours again, and he was very weak, fatigued, and tottery. His right leg was more rubbery than I've ever seen it. I gave him some coaching about his gait in consideration of this opportunity to train the new cells that will replace the ones he is losing to apoptosis (thanks to Norman). I gave him one of those baby-dose Cortefs Sunday evening to get him through the workday on Monday, and he did reasonably well.
It's impossible to decipher what happened with regard to the LDN factor in this, but the 2nd wave should have been milder since his peri-pulse Lauricidin abstinence had been lengthened. Instead, this 2nd wave was stronger than the 2nd wave following the previous pulse. You can interpret this in a few different ways---it's very clouded.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / CAP since August 06, antivirals, heavy metal chelation, LDN, oral IgG/lactoferrin/IGF-1 booster, Lunesta, Metanx, Lauricidin, gamma oryzanol, astaxanthin, GF/CF diet.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
I have been on ldn (1.0mg)
start doxyi/azith 10/05 Start tinii 1/06 switching to flagyl 11/06 at full flagyl pulse. (1000mg x 5 days) Having trouble getting the Nac up from 600mg per day. Ldn since 2004 dxi: multiple sclerosisi edssi 7.2
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dxi msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.