I have read previous discussions regarding LDNi and never really knew what it was or used for. A new doc that my hubby saw yesterday mentioned using it and it being very effective for the immunei system. Questions: Do you use it forever? I read where people plateaued on it and also where people couldn't tolerate it. If you start using it and after time, quit using it, do your symptoms come back?
Goodwife
Hubby dxi scleroderma 8/06; minoi 200mg/day 11/06; 250mg zithi/MWF 2/07; NAC 600mg/day 2/07
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Hubby dxi scleroderma Aug '06; Minoi 200mg/day Nov '06; Cpnii/Mpn Jan '06; NACi Feb '06; Azith Feb 14, '06
Hi GoodWife, There are
Hi GoodWife,
There are others, here, who can give you more experienced adviced than I. But, I can't help but respond given what I am currently going through with LDNi.
In my situation, the answer is yes--symptoms do return. Even with dose reduction.
I started LDN 6 weeks ago, at 3mgs. It alleviated pain in my back, shoulders, neck, spine; making it much easier to move and walk. I also had more energy. However, it increased spasticity in legs, bladder and bowel. Initially suffered from nausea and bizarre dreams-both good and bad. It caused emotionalism, that depending on triggers, was either extreme euphoria or severe depression.
So, two weeks ago, I obtainded a new script for 1mg capsules with which to play. Started taking only 1mg, negative symptoms returning after 3 days. So I increased it to 2mgs. Same result. It wore off, but later in the day. Am back up to 3mgs, now. And so far, only the spasticity is starting to return. Just returned from my prescribing GP with a .5mg script, to add, hoping I can at least reduce the dose to 2.5mg.
Just like with CAP, each individual's experience and response is unique. For me, there seems to be a worthwhile trade-off at the price of spasticity. Maybe your husband, with his diagnosis of scleroderma, and depending on his individual symptoms may be one of the luckier ones. I just wish that there were more absolute and simpler answers. :-)
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC Doxy 2/07. LDN 4/07. 150mgs Roxi 5/07. USAHi GW, I'm also the good
Hi GW, I'm also the good wife; at least I like to think so. Initially, my husband Steve took LDNi as a stop-gap measure, because it was the next best thing I could find short of the CAPi. Our hope was that it might at least halt his MSi progression while we continued our search for a CAP doc. His neurologist of that time frame refused to prescribe the CAP, but grudgingly agreed to prescribe LDN. It was obvious he didn't believe in LDN's effectiveness, but viewed it as harmless. The benefit he received from it was impressive improvement of urogenital issues.
Yes, in Steve's case as in some others, there has been a decline in benefit. His dosage was increased from 3.0 to 4.5mg, and the result has been underwhelming. However, since the benefit Steve enjoyed for the first 6 months was so impressive, we intend to stick with it, tinker with dosages and timing, allow breaks to dissipate saturation, etc.
At this point, we expect that improvements resulting from the CAP could eclipse the urogenital improvements provided by taking LDN. But, since we don't know if and when that will happen, Steve will stay on LDN for life or until no benefit is surmised in continuing with it. There is a physician who is a site user here who has secondary progressive MS. Thanks to the CAP, she is now asymptomatic. Along her journey with SPMSi, she started taking LDN and has chosen to continue it indefinitely. Her choice is based on better quality of sleep and a sense of well-being that she doesn't have when she does not use LDN. It's a safe enough drug to make a choice based on those criteria. Besides, if you've spent plenty of time feeling like crap due to a chronic inflammatory illness, you're due a lot of having a feeling of well-being.
Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDN.
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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 found LDN gave me a sense
I found LDNi gave me a sense of well being also I took it for 1.5 years prior to CAPi and meant to stay on it for that reason alone since it did not halt my progression at all, I lost ground that 1.5 years just like very other year prior to that. Knowing people who were very much greatly helped by that I was surprised, but we are all different. When I started CAP I began having sleep probelms as people would describe with the LDN. It changed my tolerance of the LDN greatly and I dropped it with no difficulty.
marie
On CAP since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini cont. since April '07, all supplementsi.
"Color out side the lines!"
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy