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Hi Annete,  Steve also took Rebif for a year and got worse on it.  He stopped it last April and started LDN in June at 3mg/night.  About the only symptoms LDN has helped were urogenital, and that was a significant help.  However, the effect peaked in December and declined rapidly.  The dosage was upped to 4.5mg about 5 weeks ago and has resulted in only minor improvement that already seems to be declining.  We will probably try 6.0mg in the near future.  The only side-effect he has ever noticed from the LDN was dizziness and slight nausea and that was only the day after he started it.  There has never been any indication of negative interaction with the CAPi meds, but everyone is different.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyli 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. 

Hi Anette, I have been taking LDNi (4.5 mg) since May, 2004. I have started antibiotics in February, 2005. Never noticed any problem. I tried to stop LDN in December, 2005. One month later I started having back pains at night. It went away very soon after I resumed naltrexone.
The dose of naltrexone is too small to cause any ill-effects.
Barbara.
Multiple sclerosis, on Wheldon protocol since February 2004, EDSSi 0 for over 4 years

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Cured of multiple sclerosisi, on the intermittent Wheldon protocol since March 2006, EDSSi 0 for over 4 years.

Hi Annette, I started LDNi in 2004 and started CAPi in 2006 and have never noticed a problem. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDN 2004

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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

Cypriane,

Steve’s LDNi experience is quite similar to my own. I was dumbfounded after just one night of taking it when I no longer had to get up in the middle of the night anymore for the bathroom. It had a major effect on my urogenital issues. For about 2 months following that I continued to make gains at which point I’d say I reached a plateau.

Then I noticed problems slipping back in but I just can’t combine the Abx and LDN - something very strange begins to happen.

I just wanted to mention to you that I attended the LDN conference in DC last year and I posed this exact question “ Whether it loses its effectiveness over time..” While I didn’t get a clear answer it would seem that there was lots of discussion about whether to have a break - for a few days or not.

When I spoke to Dr Jill Smith, who conducted the first official trial into LDN and Crohn’s, she suggested that lowering the dose rather than increasing it might also work. Build-up or something. ‘Less is more’ kinda theory. I know you must be stunned by my rocket science. She stated it beautifully but all the details have fallen into one of my brain holes right now. I’ll let you know if I find them.LOL.

But I just thought you might like to bear that in mind.

Barbara and Wiggy,

I am delighted that you are both able to take the Abx and LDN without any untoward side-effects. It is a great little drug that, in my experience, works.

But I just can’t figure out why I can no longer tolerate it. Most odd.

Thank you for sharing your experiences.

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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.

Annette,  When "less is more" means "less is more," there's no reason to elaborate.  Taking a break or cutting back on something to allow the opportunity for a fresh reception is not unheard of.  I appreciate your mention of Dr. Smith's comment, as I had been wondering about the eventualities with Steve's LDNi usage.  While I don't think it is something he will need in the future, it's definitely something he will want---that genie is out of the bottle! 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyli 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. 

Golly, Annette...am so glad that you posted this! And, that you and the others here, are LDNi veterans. You even attended the LDN conference? Wow! Am so sorry to hear that you can no longer tolerate it!

I just started it three weeks ago. Only taking 1.5mgs. So far it's been wonderful because, like Barbara, I had back pain that it's taken away. And neck, shoulder, hip, knee and ankle pain that it has eliminated, too. Had nausea (quite comparable to that which I had only experienced with the morning sickness of my second pregnancy).

But unlike you, it makes me have to get up to urinate 1-2 hours after I take it. Urine is very dark from it.

Also, it seems to have decreased spasticity, for the most part; but sometimes I think that it increases it early in the day. Two days in a row, a knee collapsed on me going downstairs in the AM. But, it didn't today, so am hoping the spasticity will decrease as they say it will.

Another irritating thing is that I have develped numbness and tingling in both arms and hands, whereas I didn't have this before.

Was just thinking...LDN seems to be effecting me, so much, hormonally. Well, it does work on triggering our production of pheromones, right? Probably not, but any chance that your intolerance for it might have anything to do with the induced-menopause that you recently wrote that you have had?

Totally inexperienced, and just musing...so I do apologize!

Welcome back, btw...am so sorry to have just read about all that you are/have been going thru! Me--I had to re-start CAPi, too. Am taking it quite slow, this time.

--Minai

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon 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 and Doxy 2/07. LDN 4/07. USA

Having recently done my own research on LDNi, I did read about this 'tolerance' issue for some people. It can be quite discouraging. One article had a specific suggestion: To alternate LDN ten days on/two days off. Apparently this has worked for some people. You may wish to see what your doctor thinks about it. If I can dig up that link I'll post it here. -kk2

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

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Began Wheldon Protocol for rrmsi October '05.  Currently OFF all abxi since June 26, '08 due to severe porphyriai. Added LDN 4.5mg qhs October '07.  All supplementsi.

Cypriane,

I was having a lucid moment and fished out those details. Prepare to be impressed.:)

One of the proposed mechanisms of naltrexone is that it transiently blocks the opioid receptor resulting in an exaggerated release of endogenous enkephalins and endorphins. Once the naltrexone wears off, then the endogenous opioid can interact with the opioid receptor to have its effect. However, if the naltrexone dose is too high, and the receptor is blocked for an extended period of time, the effect of the opioids will be lost. So, the first thing I would think of with a higher dose being a problem, may be that the receptor is blocked too long and you are losing the benefit.

I wish I could take the credit for this explanation but unfortunately I can't. Her words. Not mine.

Minai,

Thank you for the warm welcome back.

I never cease to be amazed at how we all react so differently to the same little drugs. I almost had the opposite reactions to what you described.

My spasticity increases, my numbness and tingling disappears, my bladder control improves.

I am sure you are right about the hormones. Something very weird has been going on there and while I am now emerging out of the induced hormonal wipe-out, this month my PMS translates as Potential Murder Suspect. I am feeling terrible. Nobody seems to be able to help me in this matter.

Oh well, That's life. Or not, as the case may be.

I am also on the Go-Slow Protocol Minai. What doses are you up to right now?

Kitkat,

Yes. The 1 day off in 7; or 2 in 10; or 1 week off in 3 were the options presented initially by Dr Lawrence in the UK. Then there was a lot of debate about the workings behind the drug and it was agreed that Bihari's Never-take-a-break treatment was the way to go.

However, Dr. Smith who is now on her next official trial into LDNi, works under Zagon. She was quite clear in her comments that Dr Zagon was the 'discoverer' of LDN and not Bihari who has been getting all the credit. [Behind the scenes info I thought you'd like.]

Anyway, she's probably one of the top LDN people in the world right now so if she says so, then that's good enough for me.

Interestingly, she previously worked for Elan and trialled Antegren, now remarketed as Tysabri. So while she is really a Crohn's researcher, she had a lot to share with me about MS drugs. [Not encouraging things to say about Tysabri]

Are you thinking of starting LDN?

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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.

I have been on LDNi since 2004 way before I started CAPi. I was initially on 3mg and became sooo spastic I had to cut back to 1.0mg per night. I was sometimes getting up at night every 1.5hours to urniate but this greatly decreased it to once a night. I still think I am more spastic because of it but will not stop it because I do believe I have pretty much stopped to progression of the msi with it. Put it this way if the house was on fire the ldn would be the one drug I would take out with me. I tried to stop it last fall thinking maybe I don't need it anymore. My sleep pattern went beserk and I was getting about 2 hours of sleep a night. One think bihari told me to take to keep the effects going thru out the day was to take an animo acid. Which I will have to tell you later because I forgot the name of it. Skips pharmacy in Baton Rouge Florida is very knowlegable on ldn. kc

start doxyi/azith 10/05 Start tinii 1/06 switching to flagyli slowly since it seems to provide people with most physical improvement

dx ms

Now at full flagyl pulse. (1000mg x 5 days) Having trouble getting the Naci up from 500mg per day. Ldn si

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dx 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.

This is a very helpful thread. Thanks for starting it Annette, and thanks to all contributors for sharing valuable info. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyli pulses; antivirals; chelation; LDNi.

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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. 

You are quite welcome, Annette!

 

And, thanks, again! You are certainly a wealth of information. But I just hate the fact that you have most likely gained it because of years of struggling and suffering from this darn disease/infection. And, that you continue to suffer so, from it. I certainly hope that you will find someone you can see and/or something you can do to sort out your hormonal nightmare! I can’t help but believe that some of it may be a result of the compartmentalization of medicine. Where those who treat fail to see the big picture of your individual health in its entire context! 

 

Had never even heard of Dr. Jill Smith. Nor of Dr. Zagon. Very interesting politics, re Bihari getting all the credit. Am glad to know who she is. And, of her opinion of Tysabri (for some reason I am not surprised!) 

What doses am I on? Only 100mgs Doxyi and 500 mgs NACi. I just can’t seem to tolerate much more than that, yet. Am so glad for you that you can, but frustrated for you that you can’t tolerate LDNi. Maybe that will change for you? I do hope so!

 

Oh, and KC…thanks so much to you, too! Again, am so glad to know that I am not alone.  So good to know of your experience. You’re going thru hell with CAPi, too. Yet, still find the LDN so invaluable!

Yes, I get mine from Skip’s, too.  And that you’ve actually consulted with Bihari…wow! Yes, if you can think of the name of the amino acid, I would be quite interested. Does it seem to help you? 

Thanks to all, 

--Minai  

RRMSi, diagnosed 2/04. NAC 4/06. Started Wheldon 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 and Doxy 2/07. LDN 4/07. USA

 

CAPi & LDNi are OK - I used LDN but it did nothing for me.  However I comment that CAP & LDN would not be expected to have any negative drug interaction.  The normal LDN dose is 4.5mg for women  and 3mg for men taken after 9pm each night.   LDN should be introduced slowly, not at the full dose at the start.  I have medical heresay information that LDN works for 30-40% of pwMS.  For me this puts it in the 'worth a try' list of drugs for pwMS.  If it seems to work for you (symptom relief or stops progression) then keep taking it.  If you are on LDN and wish to start CAP I advise going slowly with the NACi/abxi introduction.  This is gut feel cos I can surmise some potentiation effect of the LDN/CAP combination.

Annette please update your signature line, if I didn't recognise you I would not be commenting.  Mark.

Mark Walker - Oxford, England.

RRMSi Nov 91, Dx 97. CFSi Jan03. DW Patient Jan06. CAP (NAC, Dox, Rox) with Copaxone Feb06. Met monthly pulses, from Jun06. Pharma Consultant (worked til Jan03)

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Mark Walker - Oxford, England.

RRMSi Nov 91, Dx 97. CFSi Jan03. Copaxone + continuous CAPi (NACi, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abxi from June 07 onwards.