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After reading this discussion yesterday, I was concerned because I had stated taking 1200mg of NAC daily almost a week ago in preparation for starting doxycycline in two weeks.

I have not had any reaction to it and was concerned after reading flu like symptoms should have appeared by now.

Thanks for clearing this up, Sarah.

gwa

My husband didn't really get a reaction to the NAC until he upped the dose to 1800 mgs a day AND upped his Selenium to 200 mcgs per day. Hello - major NAC flu. He had to back the NAC dose down and he is now in the process of re-titrating it back up. Coincidentally, what seemed to be a full on severe cold developing (sneezing, runny nose, coughing) disappeared within 24 hours of discontinuing the NAC.

For me (well person), I took NAC 1200 mgs for 3 days and then went to 2400 mgs per day on Day 4 then by Day 5 major NAC flu (coughing, sneezing, voraciously running nose, achey, fatigue). Lasted for 3 1/2 weeks. It was very rough but now my sinuses are very clear!

When I upped my Selenium to 200 mcgs per day with 2400mgs of NAC (1200 mgs twice daily) I got a repeat of sneezing attacks. Now I am going to experiment with 2400mgs of NAC and 200mcgs of Selenium in a single daily dose to see if that pushes anything else out.

Just over 2 years ago my neurologist told me he thought I may have MS, since then it has been a catalogue of errors with cancelled appointments and lost test reports, I am currently waiting to repeat the tests at the National Hospital for Neurology, as I still do not have a diagnosis.
However, in that time I have deteriorated from walking 3 miles with a break to needing a wheel chair for anything more than 10 yards.
A friend told me about a doctor in my area treating mainly ME sufferers with combined antibiotics and thought he could help me.
4 weeks ago I started on 4000mg Penicillin a day and 250mg azithromycin 3 times per week. the first week I felt as if I had flu, the second week I actually wanted to do things but I think I did too much and it has knocked me out for a week and a half, I am just begining to come round again.
There seems to be suttle improvements, little things like being able to put my foot on the chair while sitting watching TV but I am frightened that I may be imagining one off occurences as improvements.
Can anyone give me any indication of how long before I can actually be certain that I am getting some improvement?

Hi Glynnis, I'm afraid it's impossible to state when or if one will experience improvements on an antibiotic regimen. some people have managed a swift recovery but after at least 8 months of treatment. Others like myself have experienced no improvements after 2.5 years on the protocol. It probably depends where the lesions are based. Spinal cord lesions don't heal as quickly as brain lesions.

That must be really frustrating for you, how do you know it is worth staying on them?

Well, the government neurologist said that I should definitely continue with doxicycline since there is now quite a bit of evidence which proves that it is helpful in reducing relapses. Until I used an infrared sauna on my head and spine my MS had been stable for the 2.5 years of antibiotic use. This may only have been due to the doxicycline. However I find the theory behind using antibiotics compelling and it is also one of the cheapest remedies available. So those are the main reaons for continuing, plus blind self-delusion, despair, hope.

thanks for that, I will carry on hoping.

Glynis, I am a newbie at this too but I agree with everything that gibbledygook has said. When I saw the neuro to confirm the MS diagnosis he said that I was "progressive" MS and had nothing to offer me except a referral to an MS nurse to learn how to live with it.

Soon after I found a link to David Wheldon's website and the science behind the antibiotics treatment impressed me so much that I am now nearly 2 months into the treatment. My GP is a star in that he recognises that I won't accept that there is nothing to be done and will support and monitor me throughout what will be a long haul.

I can't say that any miraculous recoveries have happened yet but the last symptom I had was a reduction in fine motor skills in my right hand. I am now making fewer typos on the keyboard, so I regard this as progress and a sign that I am on the right road. It may be wishful thinking but I will take anything at the moment and hope - at least it's more than conventional MS doctors could offer.

Anecdote wrote:If you get no reaction to NAC because of the time it has already been taken, the surest way to check is to start doxycycline. I started straight on that before NAC. Unfortunately I don't remember much of my reactions because my disease was affecting my cognition very badly, but I do vaguely remember the night sweats, feeling so tired I wanted to sleep all the time and a certain amount of gastro-intestinal upset. Even this isn't guaranteed, though. Well, unless people experience it but don't admit to it!

By the way, naypay, how much NAC has your wife been taking? If only 600mg, for example, if she ups it to 2400mg, she might still get a runny nose. I did when I started it several months into abx.

Sarah

She's been taking 4800mg. We don't recall any sweating or tiredness. Actually most of that feeling went the wayside with the Avonex. She's now on Copaxone, which BTW is the combination therapy that's been tested with NAC. napay

Hello Glynis,

I guess I know who is prescribing for you, but one thing I noticed is that he is prescribing penicillin with azithromycin. This is a new one on me for someone with MS. I know he teats mainly people with ME, but I know he also treats some people with that with what we all use on this forum and on CPn Help That is doxycycline and azithromycin or roxithromycin. The beauty of doxycycline is that it can be taken safely for a very long time.

I felt it doing something the very night I started, difficult to describe. I was really bad and didn't think anything would work. It took much longer than that before I noticed any neurological improvements. What it did from the very start, though, is stop my disease progressing which it was doing very rapidly up to that very night.

Sarah (wife of the David Wheldon, in Speedbird's post!)