Yikes! Tolerating Abx?

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

Yikes! Tolerating Abx?

Postby Smilingface » Sun Apr 22, 2007 12:44 pm

I'm in week 13 of a regime of doxycycline, azithromicin and metronidazole pulse every 4 weeks. When that 4th week rolls around, my stomach goes on strike. I'm pretty religious about either eating yogurt and taking probiotics but I get to the point where one more pill will throw me over the edge. Anybody have any diet suggestions? I'm following the Swank diet as closely as I can, but some days I feel that I'm eating just antibiotics, a multivitamin and a couple of supplements. Yikes, I know that can't be good for me.
Also, are there any PPMS'ers out there who have been on a similar regime with positive results?
I refuse to give up, but I sure would like to hear some encouragement. :D
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Postby Anecdote » Sun Apr 22, 2007 3:39 pm

Hello Smilingface,

I am Sarah, Dr. Wheldon's wife, pleased to meet you.

I'm not surprised, though, your stomach going on strike! Has this regime been prescribed for you? I didn't start taking metronidazole until I had taken doxycycline and roxithromycin for three months. Then I had no trouble apart from the fact that metro made me so depressed and extra fatigued. Some people don't start until they have been taking the bacteristatics for six months and most people build up by doing just a one day pulse, then a two and so on. You sound as though you have just jumped in a bit too quickly.

Your diet sounds fine so I think it is just a matter of grinning and bearing it, but cut back on the metronidazole a bit. I would often cut the five day pulse a bit short, but now I take tinidazole in preference, because it is more tolerable and just as effective. It costs more though, because it is still under patent.

I have SPMS, but there are people with PPMS taking the regime very successfully. The main one being Katman who you can see in the regimens section here and also at http://www.CPn Help.org in the Patient Stories. You must have a look.

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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Nice to meet you too!

Postby Smilingface » Sun Apr 22, 2007 5:07 pm

Very nice to meet you too! My regime was prescribed by my neurologist.
I started with Rifampicin, azithromycin and metronidazole. With input from Dr. Wheldon via email, I switched the rifampicin for doxycycline at one month. The metronidazole is prescribed 500mg 3X daily for 7 days. After your comments, I don't feel so bad that I can't tolerate it. Thank-you!
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Postby Anecdote » Mon Apr 23, 2007 4:04 am

Seven Days :?: :!: Crumbs, I never managed more than five, and that was pushing it. Are you taking either activated charcoal or chlorella to help mop up the debris? I prefer chlorella myself.

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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Algae or ashes?

Postby Smilingface » Mon Apr 23, 2007 3:39 pm

Lets see....Algae or ashes? Sounds like a tough decision to me. Why do you prefer chlorella? How does it work? The only thing I think I'm taking for clean up is tumeric suggested by you know who. The vit C I'm taking because it tastes good might be assisting as well. I'm definitely open for suggestions!

My neurologist has suggested fumaric acid which I plan to take once I find my antibiotic balance. Any thoughts on fumaric acid? My limited understanding is that fumaric acid increases a T2 response which is favorable
in MS patients because it allows improved regulation of the unfavorable T1 response.
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Postby Anecdote » Tue Apr 24, 2007 3:26 am

Algae wins hands down with me, ashes can make you constipated and give you a weighed down feeling. Also you can take the algae with other things, whereas ashes you have to wait for at least two hours after eating or taking abx, which can be difficult.

Here is my "Beginner's Guide to Supplements" a way of keeping what are regarded as the essentials to a minimum, and something about chlorella:

http://www.CPn Help.org/sarahs_beginners_guide__0

http://www.CPn Help.org/?q=basic_supplementation

By the way, if you look up Ken H, http://www.CPn Help.org/5_goes_fine he is from North Carolina as well, and has PPMS. He has been doing this for some months, prescribed by his neuro.

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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Re: Algae or ashes?

Postby CureOrBust » Tue Apr 24, 2007 4:01 am

Smilingface wrote:My neurologist has suggested fumaric acid which I plan to take once I find my antibiotic balance. Any thoughts on fumaric acid? My limited understanding is that fumaric acid increases a T2 response which is favorable in MS patients because it allows improved regulation of the unfavorable T1 response.
If I am not mistaken, fumeric acid is the basis for BG-12, which is currently in trials. I have been offered the option to join one here in australia, and am interested in getting it prescribed off label. However, I dont remember reading spectacular results from any previous trials (ie not as good as tovaxin, more similar to current treatments)
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Re:BG-12

Postby Smilingface » Tue Apr 24, 2007 3:43 pm

[/If I am not mistaken, fumeric acid is the basis for BG-12, which is currently in trials. I have been offered the option to join one here in australia, and am interested in getting it prescribed off label. However, I dont remember reading spectacular results from any previous trials (ie not as good as tovaxin, more similar to current treatments)[/quote]

From my brief literature search on BG-12, you are correct! I'm not sure what is different about BG-12, an oral fumarate derivative and the fumaric acid that can be obtained from a pharmaceutical distributor. Fumaric acid has been prescribed for me 240mg/3x a day. A local compounding pharmacy will
purchase it in bulk and put it in capsules. My neurologist did warn me that
there is not much information on how fumaric acid might interact with the anti-biotics I am on, but he sure did not say anything about the BG-12 trials.
Thank you for your response.
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Postby Anecdote » Wed Apr 25, 2007 12:55 am

Don't worry, fumeric acid will be fine with the antibiotics: it is present naturally in many foodstuffs......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 Smilingface » Wed Apr 25, 2007 9:58 am

Anecdote wrote:Don't worry, fumeric acid will be fine with the antibiotics: it is present naturally in many foodstuffs......Sarah


My concern is the GI disturbance that I'm finding well documented in the BG-12 trials. My stomach is already on strike. I'm getting some really good suggestions from you seasoned antibiotic users so I know I'm going to prevail. Now if I could only find some BG-12 trial folks.....
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Postby Anecdote » Thu Apr 26, 2007 1:42 am

Smilingface, BG-12 appears to be one of the many things that somewhat helps relasing remitting disease, so I wonder why your neuro bothered to prescribe fumaric acid for you, with PPMS when he has also prescribed antibiotics?

http://tinyurl.com/ysvqrr


http://www.thisisms.com/article270.html

Any gastric disturbance due to the antibiotics should soon sort itself out, but any caused by something which isn't going to help, seems silly, no matter that it isn't going to conflict with the antibiotics.

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 » Thu Apr 26, 2007 4:39 am

I could not read the second link (paid download), but the first talks of reduced lesion load, not reduced relapses. However, It was a bit of a shock to see how high the numbers were; I had in my head they were much less impressive.
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BG-12

Postby Smilingface » Thu Apr 26, 2007 3:05 pm

Anecdote wrote:Smilingface, BG-12 appears to be one of the many things that somewhat helps relasing remitting disease, so I wonder why your neuro bothered to prescribe fumaric acid for you, with PPMS when he has also prescribed antibiotics.
Sarah


My neuro's understanding is that fumaric acid acts on the final common pathway of CNS injury which he interprets as meaning it may be effective in
a variety of situations. He feels that prilosec will help me with any GI issues.
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Re:BG-12

Postby CureOrBust » Fri Apr 27, 2007 2:58 am

Smilingface wrote:Fumaric acid has been prescribed for me 240mg/3x a day.
So I will guess that your script is written as "Fumaric acid"? I will be looking into if this is something I would want to add to my regimines.

Smilingface wrote:My neurologist did warn me that there is not much information on how fumaric acid might interact with the anti-biotics I am on, but he sure did not say anything about the BG-12 trials.
On monday I see a neuro regarding the FTY720 and BG-12 trials. I will hopefully remember to ask if he knows anything with regards to antibiotics and BG-12, and get back to you.
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Postby tory2457 » Mon May 14, 2007 9:21 pm

if I may add:

what type of probiotic are you taking..or were you taking?

I found Theralac to be very good. I'm on Minocycline, Rifamphin and Tindamax daily and have been in abx treatment for 7 mths and don't have a stomach or yeast problem.

I also like Chlorella very much, and follow Dr Wheldon's supplemental guide each and every day!

Sometimes we need the correct probiotic to correct our GI tracts too. Theralac talks about that in length on their website.

the best to you,
tory
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