I was told that the reason I didn't notice the pain of the bladder infections was because of my meds, but,

I wonder if the reason we don't feel the pain of the bladder infections is because the nerves involved have been damaged by the TOS in some way, so that they no longer trigger us to "go", for instance, or, the pain of it.

I have to "go" on a schedule now to avoid getting repeated infections.

But, anyways, I always say God bless to you, and I am glad that you do not have to take more meds, and those ERs can be real mean people some times.

what is also strange, is that demerol does not "work" for my pain at all, while it does for you, and I am a "high" need doseage for pain, but not for demerol, obviously - just goes to show again how we all can have neuro TOS but it is slightly different in each person, or, we have other conditions on top of it that makes managing our pain more complex and the docs just give up.

I have a suggestion:

People who cannot metabolize alcohol, have a genetic error in the alcohol dehydrogenase system. This is more common in Asians but does occur in other races too.

A specific vitamin works in this system called Thiamine. B1.

It might be helpful for you, tshadow, to try high doses of this to see if it helps your pain.

The advanced improved form of thiamine, called benfotiamine, is now available in US for less money than it used to be when it first came out. It is stored in the body longer than regular thiamine which can be excreted very quickly.

Some of us on PN use benfotiamine with success for our PN.

Doses for regular thiamine would be 300mg a day in divided doses (100mg 3 times a day).

Benfotiamine would start at 300mg a day, and with time and improvement one may be able to lower it to 150mg a day.
Both are relatively benign, and have few side effects.

Thiamine is common in drugstores and grocery outlets.
Benfotiamine is not commonly found locally and is more available on the net. I use Doctor's Best Brand (available at iherb.com . We have a person on PN who uses 600-900 or more a day of this, but I think that is exceptionally high.

People who are slow metabolizers do exist and they can be identified with the new genetic testing DNA, being done now. Not all insurances pay for it, and it can be over $400 but this testing can be very valuable for people who have unique genetic issues with liver metabolism.

Here is one example of a website to look at:
The chart is interesting, and it grows yearly as more is learned about this subject:
http://www.genemedrx.com/Cytochrome_...lism_Table.php

There are other DNA testing sites on Google.
use keyword "DNA genetic Cytochrome testing"

Quote:

Originally Posted by mrsD I have a suggestion: People who cannot metabolize alcohol, have a genetic error in the alcohol dehydrogenase system. This is more common in Asians but does occur in other races too. A specific vitamin works in this system called Thiamine. B1. It might be helpful for you, tshadow, to try high doses of this to see if it helps your pain. The advanced improved form of thiamine, called benfotiamine, is now available in US for less money than it used to be when it first came out. It is stored in the body longer than regular thiamine which can be excreted very quickly. Some of us on PN use benfotiamine with success for our PN. Doses for regular thiamine would be 300mg a day in divided doses (100mg 3 times a day). Benfotiamine would start at 300mg a day, and with time and improvement one may be able to lower it to 150mg a day. Both are relatively benign, and have few side effects. Thiamine is common in drugstores and grocery outlets. Benfotiamine is not commonly found locally and is more available on the net. I use Doctor's Best Brand (available at iherb.com . We have a person on PN who uses 600-900 or more a day of this, but I think that is exceptionally high. People who are slow metabolizers do exist and they can be identified with the new genetic testing DNA, being done now. Not all insurances pay for it, and it can be over $400 but this testing can be very valuable for people who have unique genetic issues with liver metabolism. Here is one example of a website to look at: The chart is interesting, and it grows yearly as more is learned about this subject: http://www.genemedrx.com/Cytochrome_...lism_Table.php There are other DNA testing sites on Google. use keyword "DNA genetic Cytochrome testing"

I have already been taking some of the vitamins / herbal remedies you and others have suggested. ANd, for a LONG, LONG time. I am not new to neuro TOS..

I have not given my doctor credit for explaining what will be a fully researched article soon. The point is this: some of the chronic pain patients will require high doses of only certain meds, while other meds will have no effect on them at all, while these same meds can have extremely good results on others. He is identifying and listing the drug groups and trying to help patients so that the insurance co.s cannot say we are drug seeking when it is actually our own bodies that are determining the correct amount of medication to take, (outside of body tolerance and completely excluding pain seeking patients.) This doctor believes that there are a huge number of patients being identified as drug seeking when it is really their bodies controlling the result.

Mrs. D I might add that in reading your other thread, you are (or seem) to be very active. I have been bedridden within 9 months of getting neuro TOS. The symptoms for neuro TOS started within one year of sitting at a computer 70 or more hours a week.

Everyone seems to jump on the alcohol intolerance as the most interesting, but if you add the ten other factors that the doctor tests and includes in the theory, it is not what you are concluding at all. But, like I said, I am not able to get the article yet, but when I do, I will share it with the TOS group immediately.

I do thank you but until someone is bedridden and has gone through about 50 medicines already to try to bring the pain down, I don't think they have any idea about my case. I know of two people who are as debilitated as I am and I want to share this information if there are any other (few) sick people like me. WIth all respect, I don't think your case matches mine at all. But I am happy for you to have the abilities and good mind set and help that you give at the board. You are a kind person just trying to help everyone!

God bless you.

I am not aware of any opiates that are NOT metabolized by the liver. All are as far as I know.

Fentanyl is used sublingually and in patch form to avoid FIRST pass by the liver and because orally it is not very effective.
But it IS metabolized by the liver once it is in the blood stream.
It takes 3 to 5 days to reach steady state dynamics to give optimum response.

There are some drugs not metabolized appreciably by the liver.
Neurontin and Lyrica are examples. I believe a very small amount does go to the liver but not significant amounts.

Levofloxacin (antibiotic) is not liver extensively metabolized. Stats say about 87% is excreted unchanged in the urine. But this drug is also hepatotoxic which is interesting.

Lisinopril (blood pressure), also.

One place to quickly see metabolic fates of various drugs is
rxlist.com Click on the pharmacology section, and the distribution, and excretion will be there for most. Some very old drugs no longer covered by patent, are not well reported anymore, there however.

As sk8ter as offered, this is a genetic issue... and can be tested for. Everyone metabolizes things basically according to their own inherited genes.
There have been predictions in the medical media, that within 10 yrs we will see personally taylored doses of medications given based on individual metabolic capability. I personally think this will alleviate much suffering and nasty side effects from drugs.

For the first time I got allergy blood test, was expecting some airborn onne, but they said nothing turned up at all. Docs have been treating my "allergies" for years.

Also turned up with a thyroid nodule. It didn't hurt till they did ultra-sound but that definitely aggravated it. Going in for a needle biopsy.

tshadow, please read this :

http://www.doctorellis.com/TOS_neurogenic.html
http://thejns.org/doi/pdf/10.3171/SPI/2008/8/4/347
http://www.doctorellis.com/Lecture.html