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


Postby mom10789 » Sun Sep 30, 2007 4:02 pm

ok i'm a pansie, i took mon-thurs off
i felt pretty good, took naproxin for a few days started abx again
fri not too bad
sat worse
sun back to agony
why are roobie and i in so much pain
this can not be herx, can it
sat, i got some sore in my ear, today i got a massive cold sore my life is hell, i bow down to all of you that have finished

hey robbie, bought a vapourizer it seems to help because my ribs are in agony and you don't need to take a deep breath

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Postby MacKintosh » Sun Sep 30, 2007 5:30 pm

Okay, pansy, yes this is die-off and yes it stinks and you just have to tough through it. It beats the alternative.

Why are you in pain? Because when the little critters die, they spew their little dead-body poisons into your system. This causes toxins to float freely through you til your body clears them and it causes inflammation, which is where most pain and neurological manifestations come from. (Okay, that's a simple version, but now is not the time for a lengthy scientific explanation.)

We always say go as fast as you can, but no faster. We also caution against starting and stopping, as this is a sure way to build resistant strains of bacteria. Take Aleve, take ibuprofen, sleep as much as you can to get through the rough patches, take low doses of abx and build up, but don't keep starting and stopping or you'll cause yourself a problem.

Lecture over. Several of the patient stories on CPn Help list recovery issues like both of you are talking about. A few report outbreaks of cold sores that are inexplicable. We basically think this is just your body pushing poisons out. Please remember you would NOT be having these reactions to abx if you were 'healthy'. It's the fact the abx are doing their jobs and killing the bad stuff inside you that you can take some comfort in. This WILL pass. Be stoic.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby SarahLonglands » Mon Oct 01, 2007 4:25 am

Right Chicken, listen to Mac and just read what I just said here:

You and Robbie aren't alone, you have RFK aswell and probably lots of others who don't even post. This initial period won't last for ever nd you'll end up glad you did it!

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 Katman » Mon Oct 01, 2007 7:27 am

This discussion reminds me of some we had before and brought to mind the weird infections I used to get: one recurrect area was the front of my left nostril (always my worse side for chronic sinusitis) - a stubborn "skin thing" that responded to nothing ever; a recurring spot on my right cheek bone, a similar place on the edge of my left ear. You get the idea - there were others. All gone now, I'm happy to say.

2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Dovechick » Mon Oct 01, 2007 8:34 am

The fact that you felt better when you stopped taking the ABX is proof enough for me that you should keep taking the ABX. You will have to stand your ground and tough it out, there is no alternative. The pain you are suffering is as a result of the battle going on inside you. If there were not a battle you would not be hurting.
It is hard to continue doing stuff that makes you feel bad, but in the end the people who succeed are the ones who have the guts to stick to it. On the CPn site the people who have stuck it out through bad times are getting better, but even those who have been doing the treatment for months still have to occasional bad time. It gets easier and you also get to know how to cope with the difficulties, how to prepare, how to handle the die offs, how to plan for the tough times...
If you feel strong enough to take another journey through the ether come and join us... there are many more experiences to learn from.
Don't give up this site it is great for all kinds of reasons but CPn Help can support you too....
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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