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Tell us about how you are beating this
ddarcher
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F/U

Post by ddarcher » Fri Mar 07, 2003 2:02 pm

One more day of Levaquin!! Can't wait to get off this crap! Ofcourse I still have a fear in the back of my mind: what if I relapse without the antibiotic? Symptoms are 90%improved. Regimen remains the same. I'll keep you posted.
This communication provides general information, and is not a substitute for face-to-face medical care. Therefore a doctor-patient relationship should not be assumed by the reader.
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Dale (Psychiatrist)

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Post by webslave » Fri Mar 07, 2003 3:06 pm

Dale, after reading one bazillion messages over the years from guys who have used antibiotics, sometimes for years at a time :shock: to control symptoms, I can assure you that this is not really the best way to go. You are not helping things long-term by devastating your gut's natural (vitamin-synthesizing) flora, or tempting fate by jeopardizing your tendons, and so on.

ddarcher
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I know....

Post by ddarcher » Sat Mar 08, 2003 2:01 am

Thanks Mark. Intellectually I know your right....but psychologically, that'a another story! Anyway I just took my last pill of a 6 week course which was the plan with my Doc so we'll see. I just hope I'm still able to post under the success stories topic. :-)
This communication provides general information, and is not a substitute for face-to-face medical care. Therefore a doctor-patient relationship should not be assumed by the reader.
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Dale (Psychiatrist)

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Post by ddarcher » Sun Mar 09, 2003 1:21 pm

Day 2 post antibiotics. So far so good. Other than the vitamins and such I'm taking singulair in the AM and vistaril 25mg at bedtime. Also ultram if needed and I took one the last 2 nights just to be sure. 85% better. As per Marks advice I switched to vistaril from clariten. I also have exercise induced asthma so I take albuterol and flovent before exercise. I find the clariten worked better for the allergies but the vistaril works better for the CP and helps me sleep very well. I'll list all the vitamins and nutrients I'm on soon.
This communication provides general information, and is not a substitute for face-to-face medical care. Therefore a doctor-patient relationship should not be assumed by the reader.
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Dale (Psychiatrist)

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Post by webslave » Sun Mar 09, 2003 2:14 pm

Maybe you can take both VISTARIL and CLARITIN simultaneously? Seems a pity to give up Claritin if it's helping...

ddarcher
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Yes

Post by ddarcher » Sun Mar 09, 2003 2:47 pm

Yes Mark I thought about that but the allergies aren't that bad so for now I'll continue. Another interesting point is milk. I now have found that since the vistaril milk not only doesn't bother me but actually helped some CP pain last night! Had pain, craved a large glass, drank it and felt better in about 20 minutes. Crazy, but argues in favor of allergies causing the milk symptoms. But have no idea why milk would help the CP?
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Post by webslave » Sun Mar 09, 2003 5:29 pm

Always dangerous to link cause and effect like that. I've seen it so many times with this thing. Most commonly guys say : "I had sex and then a few hours later I got CP!" They link the 2 things as causative whereas there is no such link, other than the fact that ejaculation causes a 24-hr increased blood flow in the area, which may in itself allow symptoms to rise over the consciousness threshold.

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OK

Post by ddarcher » Tue Mar 11, 2003 12:55 am

Day 3 no antibiotics. 90% improved. In the past the 3rd day after antibiotics would always be when the relapse would start taking shape ( even though I never had this level of improvement ). But not this time. I may relapse but not on the third day because I feel great! The fuzzy side effect feeling from the levaquin is gone too. Still some urethral pain present. Taking ultram at night more as a preventative since pain not enough to warrant. About the milk I know it was pure speculation but what if.....Well I believe we crave foods that our body needs for some nutritional, genetic reason. Well what if my body needed milk but I was allergic to it. So I needed some nutrient but every time I tried to get it my allergy got in the way. Now that I'm on vistaril the allergy is under control so the milk is helpful! As we say in Mental health that's a real SWAG! That's Scientific Wild Ass Guess. Anyway, taking one day at a time.

Dale
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Dale (Psychiatrist)

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Post by webslave » Tue Mar 11, 2003 1:36 am

The foremost immunologist on food allergy in the world, Jonathan Brostoff, says (edited for length) : "Craving the culprit food is the most bizarre aspect of food intolerance. These patients tend to crave the food that is causing their problems. .... Endorphins are all peptides. Some foods when broken down into peptides (proteins split into shorter lengths in gut) resemble natural endorphins (have similar amino acids). These are known as exorphins and have been produced in the laboratory by human digestive juices from milk, wheat, maize and barley. .... Exorphins shown in experiment to bind to sites for endorphins in vivo etc etc.

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Link

Post by ddarcher » Tue Mar 11, 2003 1:09 pm

That's interesting Mark. Do you have a link? I'd like to read more. You can email it if you feel we're getting off topic too much. But this could play a role in some cases of CP. I think in seriousness for me the milk is an ancillary finding. I've gone weeks with it or without it and really in the grand scheme of things objectively can't tell much difference with CP symptoms. But I do feel I probably have a very mild allergy to it as well. Anyway, day 4 post antibiotics and doing well.
This communication provides general information, and is not a substitute for face-to-face medical care. Therefore a doctor-patient relationship should not be assumed by the reader.
Good luck,
Dale (Psychiatrist)

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Post by webslave » Tue Mar 11, 2003 1:20 pm

The Brostoff book is available via here. Very readable. (BTW, Brostoff has also written the Immunology textbook, the "Bible" of immunology, link here). I really do highly recommend former book. Most MDs just are not trained well in this area. The book is a real eye opener :!:

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Thanks

Post by ddarcher » Tue Mar 11, 2003 2:14 pm

Thanks Mark, ordered the book. Speaking as an MD, I recieved NO, NONE, NADA training on food allergies or intolerance in the late 70's when in Med school. Hopefully current Medical School training is more up to date.
This communication provides general information, and is not a substitute for face-to-face medical care. Therefore a doctor-patient relationship should not be assumed by the reader.
Good luck,
Dale (Psychiatrist)

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Post by webslave » Tue Mar 11, 2003 2:18 pm

Having spoken to a young MD recently (family friend), I can tell you that things haven't changed much. :mad2:

The allergy and immunology field is still evolving at quite a pace. This shows it:
viewtopic.php?t=323

ddarcher
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Day 5

Post by ddarcher » Wed Mar 12, 2003 4:48 am

Day 5 post antibiotics. 80% improved. Some increased burning after urination today. Relieved with tylenol. Supervisng my son and friends spring break High school trip in Acapulco for the next 5 days, so this should be a real test for the CP! Probably won't have internet access so I'll report after I get back. I wonder if tequila is good for CP? :wink:
This communication provides general information, and is not a substitute for face-to-face medical care. Therefore a doctor-patient relationship should not be assumed by the reader.
Good luck,
Dale (Psychiatrist)

ddarcher
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Also

Post by ddarcher » Wed Mar 12, 2003 12:13 pm

Forgot to add that I had increased shooting pain in the evening completely treated with hot bath, stretching and valium 5mg. I find low dose valium very effective with the muscular component of CP. Makes me drowsy so I only take occaisionally at night. Valium is the most effective muscle relaxer of the benzodiazepines, so you get the antianxiety and muscle relaxant properties all in one.
This communication provides general information, and is not a substitute for face-to-face medical care. Therefore a doctor-patient relationship should not be assumed by the reader.
Good luck,
Dale (Psychiatrist)

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