Gibbledygook's antibiotic log

SarahLonglands · Post by **SarahLonglands** » Sat Nov 26, 2005 1:47 pm

Alex, some antibiotics such as bactrim contain sulphur. You give no reference to what you read, so was it by any chance elemental sulphur pills, because there is no elemental sulphur in either NAC or something like bactrim. Also eggs and garlic contain quite a lot of sulphur, but you aren't advised to avoid these whilst taking antibiotics. I certainly don't take NAC two hours away from antibiotics, which would be quite difficult when you are on a flagyl pulse in any case!

Sarah

gibbledygook · Post by **gibbledygook** » Sun Nov 27, 2005 2:42 am

Actually I realise that I've got into a confusion! I read this from a leaflet about GH3 (some product which a nutrionist wants me to take) "where other medication has a sulphur base (some antibiotics for instance) GH3 has been found to neutralise them". Clearly the sulphur in the NAC will NOT be a problem.

I also realise that I've been taking 2mg of zanaflex in the mornings this last week and that is known to cause walking difficulties! Doh.

gibbledygook · Post by **gibbledygook** » Tue Nov 29, 2005 7:29 am

I just wanted to add something that I've noticed over the last 2 to 3 weeks which is a headache around the left ear area. This is intermittent but always in the same sort of area. As most of my disability is on the right hand side I can't help thinking that the NAC and antibiotic combination is finally hitting those disabling lesions which might additionally explain why I've suffered a bit over the last week or so with my walking. Then again it could be the weather and then again it could be my autumn/winter relapse. On the other hand I walked my best in early autumn in at least 25 degrees C in a warm top and today walking felt considerably better even though it was, I think, colder today than yesterday.

Sarah, I really think your team is onto something!! Last night as the left part of my head was racked with aching pain (I have NEVER suffered from headaches) and the spasms in my right leg really took off I nevertheless really felt that these were good signs. That somehow these exacerbations are the infection under attack and that soon enough some healing may be about to take place. Of course, I could be deluding myself but at any rate I'm enjoying the delusion.

Katman · Post by **Katman** » Tue Nov 29, 2005 7:45 am

Cheers to you for staying the course! It takes more time than we would like but most of us consider the alternative and doggedly persevere. Sounds like breakthroughs to me but what do I know?

Rica

gibbledygook · Post by **gibbledygook** » Thu Dec 01, 2005 8:31 am

I really think that this N acetyl cysteine stuff may be very effective in this abx treatment. I spent yesterday mainly fast asleep during my 5th day of flagyl and nearly my 30th day of NAC. I was just exhausted. I never normally sleep during the day but yesterday a dull left side headache and sleepiness kept me in bed till 2pm and back in bed by 4pm. I had passed out again at 10pm. Today I walked without aid firstly 900meters and then half an hour later 1.2kilometers. The first walk felt pretty bad after 750 meters but I had started very quickly with a spring in my step (like I used to) and I realised at about 600 meters that I had to moderate my speed. The second walk was of an unintended length but it didn't feel nearly as bad as it ought to have. This is a record. Yet only a few days ago in the bitter Parisian cold I could hardly walk 400 meters. But I reckon that my walking in France was poor because I'd spent much of that week taking excessive quantities of NAC (1,800mg per day as opposed to 1,200mg). I would definitely consider this amino acid essential in the treatment protocol.

mrhodes40 · Post by **mrhodes40** » Thu Dec 01, 2005 9:24 am

Oh Alex! this is good news! You lucky girl walking 1.2 KM Crumb, a KM is about .6 of a mile so you went a long ways. And on NAC too! I also have trouble with NAC. But my husband does not react at all. Me, my nose runs I feel sick, uncoordinated. I can't seem to take it continuously.
Long flagyl pulses take a long time to recover it appears. So what is your plan now? Will you stay with short pulses instead? And what are you taking now overall for abx?
Marie

gibbledygook · Post by **gibbledygook** » Thu Dec 01, 2005 10:36 am

Hi Marie,

Yes, I shall continue with short pulses of flagyl. I shall take NAC continuously, even though it seems to give me a snotty nose, sore eyes, headaches, dizziness and occasional exhaustion. In January I shall add INH, amoxicillin and rifampin to the doxicycline, roxithromycin, pulsed flagyl and NAC. This could well be quite hard so I will start off with amoxicillin and then add the INH and rifampin combination later. I'm expecting these to make me feel worse before anything makes me feel better. I think one needs to be a glutton for punishment with this regime!

viper498 · Post by **viper498** » Fri Dec 02, 2005 12:25 pm

I think it is very risky to use AB's to treat yourself. If you contract a bacterial virus, like Clostridium difficile (C-Diff) you will be in very big trouble. Also, Out of all of the forums I've read on AB's I've not read any where people have shown dramatic results or a halt in their disease. Why do you put yourself and your body through all of that for no noticeable, or proven effects? Is it worth it? Has anyone stopped MS with AB's?

Also, I read a lot of these forums, where is everyone getting almost unlimited access to these medications? I am from the US, so that probably makes a difference as to what I can and can't get, but still? It seems like a lot of people here can get whatever they want??

Brock

SarahLonglands · Post by **SarahLonglands** » Fri Dec 02, 2005 12:46 pm

Deleted because I did something to amuse Cureorbust again!

SarahLonglands · Post by **SarahLonglands** » Fri Dec 02, 2005 12:47 pm

Hey, hang on a minute: I was diagnosed with aggressive SPMS not quite two and a half years ago, I started on antibiotic treatment on the advice of my husband who is a consultant microbiologist, and I have not had an adverse event since. My lesions in subsequent MRIs have either drastically shrunk or completely vanished and I have absolutely no active disease. Does this not qualify as a halt in my disease? I was deteriorating so rapidly that if I had done nothing I would be absolutely useless by now, not doing some of the best painting I have ever done.

Gibbledegook is not treating herself, she saw my husband. She might now be using a few things not initially prescribed by him, but they are all used at Vanderbilt. Clostridium, as an anaerobic bacterium is unlikely to be a problem for her since she is taking metronidazole and the use of probiotics make it even more unlikely. Apart from which it tends to e a disease of old people and also nosocomial.

Many people on this forum are either seeing my husband, David Wheldon, Charles Stratton or Ram Sriram from Vanderbilt, who started all this, or other doctors willing to use one of these protocols. Some people who have no access to a suitable doctor are doing it them selves, but they also are welcome to write for advice as needed.

It is certainly worth it: we wouldn't be doing it otherwise!

Sarah

viper498 · Post by **viper498** » Fri Dec 02, 2005 12:53 pm

For how many people is this the case for? Also what is the mode of action for the multiple antibiotics, plus the pulses of flagyl? Please explain to me.

How do you deal with the resistance to AB's after being on AB's for so long? Has this been thought of? I doubt taking AB's for the rest of your life to stop MS is going to be a solution? Please help me understand how this could be safe?

Brock

Katman · Post by **Katman** » Fri Dec 02, 2005 2:05 pm

Hi Brock

Another one getting better on antibiotics (abx) Take some time and do some reading. David Wheldon, Charles Stratton, the stories of Sarah Wheldon (Anecdote), Lifeontheice (Barbara,M.D.), MRhodes (Marie RN), Natgas (Roy) and even me- Katman (Rica) We all chose this with our eyes open and are all, for the most part, medical people or spouses. And the main thing: we are, without exception, getting better. Many of us are or were, progressive. I was for 10 long, grey years and now I'm not. Hasn't been easy but neither was PPMS.

Rica,

SarahLonglands · Post by **SarahLonglands** » Fri Dec 02, 2005 4:09 pm

Brock, read this:
http://www.davidwheldon.co.uk/ms-treatment.html

And look here:
CPn Help

Rica, I have just been accepted by a New York gallery!!! Drinking champagne as I write.

Sarah

Katman · Post by **Katman** » Fri Dec 02, 2005 5:03 pm

Congratulations is not enough!!! Bring your paintings and I'll bring champagne to the (re)union! So exciting. You must feel wonderful! I am so happy for you!

Rica

LifeontheIce · Post by **LifeontheIce** » Sat Dec 03, 2005 5:35 am

Count me in! I coming, too! Congratulation, Sarah!
B.

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Gibbledygook's antibiotic log

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