Frank ABX diary

A forum for the discussion of antibiotics as a potential therapy for MS

Frank ABX diary

Postby Frank » Sat Mar 24, 2007 6:24 am

Hello everyone,

I'm planing to stop my Tysabri treatment and instead I want to use ABX.

I have been to my pharmacy today and asked about the availability and pricing of the ABX drugs on the protocol.

I was told NAC is the same as AAC which is used to treat bronchitis, is that the right drug ?
I'm afraid I can only get it as a fizzy tablet ( I dont like their taste too much ) in 600mg doses.
It costs 30,89 EUR for 100 Tabs 600mg (which is the highest does available here)

Docycycline is quiet inexpensive it cost 14,92 EUR for 20 Tabs 200mg

Azithromycin costs 20,00 EUR for 6 Tabs 250mg

It's going to be a small problem to get Tinidazole here in germany as it was drawn off the market for a reason I currenty do not know.
Would you prefer Metronzidazole or Tinidazole regarding its effectiveness and how well it is tolerated?
What would the dose for Tinidazole be (instead of Metronidazole 400mg)? How much do you pay for it?

Metronidazole would cost 16,17 EUR for 20 Tabs 400mg.

What product do you use to maintain the bowl flora? How much do you pay for it?

Thanks!

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Notdoneyet » Thu Mar 29, 2007 7:17 am

Hi Frank,
I'm surprised no one has answered your questions here. Maybe if we move it back up to the top it will be noticed. I think you made a good decision to start abx.

NAC is short for N Acetyl Cysteine. I don't know anything about AAC. Tinidazole is not available in Canada, either, so I've been taking metronidazole. Tinidazole is said to be more easily tolerated, but is more expensive. It is also said to be as effective as metronidazole.

I use acidophilus tablets for bowel flora, but I think others use yogurt, which I'm not really fond of. I only take one capsule daily and find that to be enough. I think others take more. I think it costs about $10 CAN for 100 capsules.

I hope this helps a bit and that others will respond, as well. Good luck with your treatment.


Colin



Started antibiotic treatment of MS in May, 2004 and have no regrets.
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Postby SarahLonglands » Fri Mar 30, 2007 4:36 am

Hi Frank, NAC stands for N acetyl cysteine, an amino acid, but AAC is geprafloxacin, an antibiotic and not the same thing. You can find out more about NAC here:
http://www.davidwheldon.co.uk/NAC.html

I will send you by private message a list of supplements used, including NAC and a good probiotic. They all come from the same place in the USA, which I find is a very cost effective way to buy supplements in the UK at the moment, as long as you don't just order things one at a time. I don't know how that applies to Germany.

Since you are in Germany you will be able to get roxithromycin in place of azithromycin. You take 2 x500mg a day, either together or separately. It is much more tolerable than azithromycin.

Also tinidazole is much more tolerable than metronidazole. I take that as well. It is called Fagisyn and manufactured by Pfizer, still under patent and so a bit more costly. I don't know why it is presently not available in Germany: maybe it isn't here either, but I only take abx for two weeks every three months now. It might be just a manufacturing problem. You won't need it for at least three months, though.

I'm sorry I didn't see you, Frank, I'm sure I looked more recently than nearly a week ago, and as Colin says, good luck with your treatment!

Sarah
Last edited by SarahLonglands on Tue Jun 19, 2007 5:28 am, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Hi again

Postby mormiles » Wed Apr 04, 2007 9:20 am

Frank, I've been away lately, so I'm sorry that I missed your blog too. This is wonderful news. When and if you begin to experience bacterial die-off symptoms, we are ready to help. Please let us know how things are going. Joyce
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Postby Frank » Thu Apr 19, 2007 7:20 am

Hello everyone,

I'm now taking the NAC 2x1000mg for 10 days now without any problems.
Next monday I have a date with my neuro regarding the ABX prescription.

Could you please tell me what dose of the Tinidazole I should take?

Thanks
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby SarahLonglands » Thu Apr 19, 2007 7:48 am

Hi Frank, its 150mg, twice a day, but not for at least three months. Stick with the bacteristatics until then.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Frank » Sat Apr 21, 2007 1:49 am

Thanks Sarah!

I got some problem and I'm not sure where it comes from.
Two days ago I pretty much lost my sense of taste.
It may also be, the it was a slow process and I just noticed it now, as it reached a very significant stage.

I do smell things quite normal and I also taste the basics from the tongue like sweet, salty, sour, bitter.

For MS I currenty take LDN (for 25 days now), NAC 2x1000mg.

To treat my allergy I used a steroid nasal spray (for 60 days) and citrizin pills (same period).

Does someone have an idea where my problems could come from.

I stoped my steroid nasal spray today, it is not mentioned as a sideeffect, but it seems to be the best guess to me...

Greets
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby SarahLonglands » Sat Apr 21, 2007 4:05 am

Frank, if you need the spray for your allergy, I should keep on with it, then when you finish your sense of taste should return. Citrizin might also be the cause, since I have noticed a similar thing when taking anti-histamines for hay fever. The fact that your smell in normal and you can still taste the basics seems to indicate that......Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby CureOrBust » Mon Apr 23, 2007 1:22 am

When I started ABX's, and I asked my GP if there was any reason my symptoms would worsen under ABX's, he said it was not unheard of for people to loose (some of) their sense of taste. And this was for non MS people.

His peronal theory was that this loss of taste was caused by inflamation/demylination of the nerves to the toungue.
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Postby Frank » Mon Apr 23, 2007 4:02 am

My taste is completly restored, now that I stopped my Nasonex steroid nasal-spray.
Thanks everyone for your suggestions!

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Frank » Tue Apr 24, 2007 1:51 pm

I got my presciption today. Not from my Neuro, who refused the ABX because they are not approved for MS, but from my GP.

I'll start with Minocycline (which I favoured over Doxy, because its also in trials for MS as a monotherapy) 100mg tomorrow...

I plan to take it for two days and then move on to add the Roxy 2x150mg if I tolerate Minocycline well.

After two well tolerated days of Roxy I plan to up my dose of Minocyline to 200mg.

Greets
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Postby SarahLonglands » Tue Apr 24, 2007 11:52 pm

Excellent: remember, if you find minocycline a bit difficult to tolerate, you will probbly find doxycycline better. Roxithromycin is the best of all.

Good luck,

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby CureOrBust » Wed Apr 25, 2007 2:30 am

keep us posted on your reactions. Did you have any reaction to NAC?
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Postby Frank » Wed Apr 25, 2007 3:45 am

The NAC was absolutly no problem.
After the first Mino 100mg today I encounter a bit pressure in my stomach.
But currently its no problem its just noticeable.
I'm going to take my Mino in the morning and about one hour after that I'll take my probiotics.

Is that schedule a good idea?
What daytime is the best to take the roxy (2x150mg)?

Thanks!
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Frank
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Postby SarahLonglands » Wed Apr 25, 2007 5:26 am

Frank, it is best to leave at least two hours between pro' and antibiotics, but as for the roxithromycin, you can take it with the minocycline if you want: I did, but some people find it more easily tolerated to split things up......Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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