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Ragtop262 03-13-2016 09:12 PM

Antibiotic Neurotoxicity Prevention?
 
Yesterday, my son who is away at college calls home saying he is suffering from severe abdominal pain and thinks he needs to go to the hospital. After talking with him, he seemed to have the classic signs of appendicitis – so we tell him to get to urgent care ASAP. Meanwhile my wife & I pack quickly and make the 3.5 hour drive to meet him there. By the time we arrive, he was transferred from urgent care to emergency room – and has had two CT scans and consults with several doctors and radiologists. Ultimately they decide that he does have inflammation and infection in his appendix, but also in the small intestine. They decide that the underlying cause is not appendicitis but Crohn’s disease. They indicated that it is critical to get the infection under control before too much damage is done to the intestines. They prescribe him flagyl and cipro. I ask about the neurotoxicity of these drugs and whether there are alternatives – but I am told these are the drugs that have been proven most effective for these types of infections. They also indicated that this infection would be extremely serious and potentially life threatening if not controlled quickly.

Ultimately, we decided that the certainty of the serious infection outweighed the potential adverse side effects of the medications. (Gut wrenching decision to say the least.)

So, just looking for some advice regarding what might be the best supplements or anything else that can be done to reduce the potential for the neurotoxic effects of the antibiotics. It would kill me to see him suffering with the same things I do at such a young age. It's bad enough that he will apparently be living with a chronic autoimmune disease for the rest of his life.:(

banjanti 03-13-2016 09:17 PM

Quote:

Originally Posted by Ragtop262 (Post 1204179)
Yesterday, my son who is away at college calls home saying he is suffering from severe abdominal pain and thinks he needs to go to the hospital. After talking with him, he seemed to have the classic signs of appendicitis – so we tell him to get to urgent care ASAP. Meanwhile my wife & I pack quickly and make the 3.5 hour drive to meet him there. By the time we arrive, he was transferred from urgent care to emergency room – and has had two CT scans and consults with several doctors and radiologists. Ultimately they decide that he does have inflammation and infection in his appendix, but also in the small intestine. They decide that the underlying cause is not appendicitis but Crohn’s disease. They indicated that it is critical to get the infection under control before too much damage is done to the intestines. They prescribe him flagyl and cipro. I ask about the neurotoxicity of these drugs and whether there are alternatives – but I am told these are the drugs that have been proven most effective for these types of infections. They also indicated that this infection would be extremely serious and potentially life threatening if not controlled quickly.

Ultimately, we decided that the certainty of the serious infection outweighed the potential adverse side effects of the medications. (Gut wrenching decision to say the least.)

So, just looking for some advice regarding what might be the best supplements or anything else that can be done to reduce the potential for the neurotoxic effects of the antibiotics. It would kill me to see him suffering with the same things I do at such a young age. It's bad enough that he will apparently be living with a chronic autoimmune disease for the rest of his life.:(

Ok, those antibiotics don't cause neuropathy in every use, in fact I believe it's pretty rare they do. They are not chemo drugs, I personally know many people who took then plenty of times without any ill effects
What happen is that they are over prescribed for any mild condition in out patient settings
The use in that condition is more than justified
I wouldn't really worry about PN, rather about his actual condition
Hope he's doing fine and hope he'll get back to full heath soon!

Ragtop262 03-13-2016 09:54 PM

Quote:

Originally Posted by banjanti (Post 1204182)
Ok, those antibiotics don't cause neuropathy in every use, in fact I believe it's pretty rare they do. They are not chemo drugs, I personally know many people who took then plenty of times without any ill effects
What happen is that they are over prescribed for any mild condition in out patient settings
The use in that condition is more than justified
I wouldn't really worry about PN, rather about his actual condition
Hope he's doing fine and hope he'll get back to full heath soon!

Thanks for the reply. I know its uncommon, but still scares the heck out of me. Just want him to take every precaution he can in order to reduce the risk.

The only good thing for my son is that he finally has a diagnosis that seems to make sense. He's been suffering with stomach problems for 5 years, and got all kinds of crazy theories from the doctors - everything from IBS to cyclical vomiting syndrome to abdominal migraines. Not to mention this was his second trip to ER in 3 days. (The first hospital he went to just pumped him full of anti-emetic drugs and sent him home, saying he was just having one of his usual "episodes" and it was nothing to worry about. Fortunately, I had him go to the other hospital in town the second time - and they actually did some diagnostics.)

kiwi33 03-13-2016 10:30 PM

Ragtop262, I am sorry to read that your son's doctors suspect Crohn's Disease.

It is one of the Inflammatory Bowel Diseases and is a chronic condition which can not yet be cured but often can be managed. I suggest that you get a referral to a specialist gastroenterologist for your son. A gastroenterologist will be able to carry out detailed investigations and then discuss management options with him. Many of these involve anti-inflammatory medication (there are many possible options).

A significant risk factor for Crohn's Disease is bowel cancer, usually close to the Crohn's Disease lesions (a dear IRL friend of mine died from bowel cancer secondary to Crohn's Disease). Because of this, regular colonoscopic examination is recommended - the gastroenterologist will be able to discuss how frequent these should be with your son.

There is some general information about it here; http://www.mayoclinic.org/diseases-c...n/con-20032061.

All the best.

Neuroproblem 03-14-2016 03:54 AM

Quote:

Originally Posted by kiwi33 (Post 1204187)
Ragtop262, I am sorry to read that your son's doctors suspect Crohn's Disease.

It is one of the Inflammatory Bowel Diseases and is a chronic condition which can not yet be cured but often can be managed. I suggest that you get a referral to a specialist gastroenterologist for your son. A gastroenterologist will be able to carry out detailed investigations and then discuss management options with him. Many of these involve anti-inflammatory medication (there are many possible options).

A significant risk factor for Crohn's Disease is bowel cancer, usually close to the Crohn's Disease lesions (a dear IRL friend of mine died from bowel cancer secondary to Crohn's Disease). Because of this, regular colonoscopic examination is recommended - the gastroenterologist will be able to discuss how frequent these should be with your son.

There is some general information about it here; http://www.mayoclinic.org/diseases-c...n/con-20032061.

All the best.

Chron's disease, may indirectly lead to PN eventually due to it being autoimmune. He also needs to get his chrons treatment, to avoid serious complication in the future. With chron's disease he might need an immune modulator, like anti-TNF monoclnals. Hopefully he gets treated for his infection quickly enough, to deal with chron's

mrsD 03-14-2016 08:48 AM

People may need someday to make a decision like this.

One may have to use one of these drugs someday.

In the case with Flagyl.... using thiamine or benfotiamine with it may prevent some of the side effects. This drug cannot be used with alcohol. I have seen some doctors withhold any fermented food product, including vinegar, in patients using Flagyl. This drug impacts alcohol and aldehyde metaboism, causing aldehydes to build up in the body. There are many natural alcohols generated in the body's metabolism. So enhancing metabolism with Vit B1 may help. (Antabuse for alcohol rehabilitation also impairs aldehyde removal ...only its effects are faster and more apparent and dramatic)

Cipro disrupts DNA of bacteria, and also that of the host. It is unclear what could help block this. The only hint I've seen
appeared on Dr. Jay Cohen's website that glutathione and magnesium helped one patient who corresponded with him.

Let's hope your son is one of the lucky ones, and has little or no negative consequences from his necessary treatment.

Healthgirl 03-14-2016 08:57 AM

Quote:

Originally Posted by mrsD (Post 1204245)
People may need someday to make a decision like this.

One may have to use one of these drugs someday.

This drug impacts alcohol and aldehyde metaboism, causing aldehydes to build up in the body. There are many natural alcohols generated in the body's metabolism.

1. That is very interesting. So it must be the aldehyde build up which causes the nerve damage?

2. My dad wound up admitted to the hospital for a serious infection and had to be on IV of these 2 drugs in addition to doxycycline. It was amazing how rapidly they started working. It was with in 24 hours. They saved his life. He had some stomach upset and sensitive skin, but no neurological effects.

banjanti 03-14-2016 10:05 AM

Used in hospital settings these drugs save lives
What bumps up statistics with PN is over use and misuse that also leads us to very dangerous antibiotic resistance bacteria
I took my fair share of those drugs, metronidazole once and cypro 4 or 5 times, at least half of those times I would be fine with something different
If it caused my PN or it didn't it will stay a mystery
I knew about the risks but they were described as extremely rare, maybe they are not that rare after all
I'll avoid those drugs by any means from now on, they should be used only in specific cases, my use of them was obviously a misuse

DavidHC 03-14-2016 01:03 PM

Ragtop,

I don't have anything special to say here, others seem to be more informed. But I wanted to say I'm sorry to hear this, and I do hope for the best outcome for your son.

Dave


Quote:

Originally Posted by Ragtop262 (Post 1204179)
Yesterday, my son who is away at college calls home saying he is suffering from severe abdominal pain and thinks he needs to go to the hospital. After talking with him, he seemed to have the classic signs of appendicitis – so we tell him to get to urgent care ASAP. Meanwhile my wife & I pack quickly and make the 3.5 hour drive to meet him there. By the time we arrive, he was transferred from urgent care to emergency room – and has had two CT scans and consults with several doctors and radiologists. Ultimately they decide that he does have inflammation and infection in his appendix, but also in the small intestine. They decide that the underlying cause is not appendicitis but Crohn’s disease. They indicated that it is critical to get the infection under control before too much damage is done to the intestines. They prescribe him flagyl and cipro. I ask about the neurotoxicity of these drugs and whether there are alternatives – but I am told these are the drugs that have been proven most effective for these types of infections. They also indicated that this infection would be extremely serious and potentially life threatening if not controlled quickly.

Ultimately, we decided that the certainty of the serious infection outweighed the potential adverse side effects of the medications. (Gut wrenching decision to say the least.)

So, just looking for some advice regarding what might be the best supplements or anything else that can be done to reduce the potential for the neurotoxic effects of the antibiotics. It would kill me to see him suffering with the same things I do at such a young age. It's bad enough that he will apparently be living with a chronic autoimmune disease for the rest of his life.:(


Ragtop262 03-14-2016 07:34 PM

Quote:

Originally Posted by mrsD (Post 1204245)
People may need someday to make a decision like this.

One may have to use one of these drugs someday.

In the case with Flagyl.... using thiamine or benfotiamine with it may prevent some of the side effects. This drug cannot be used with alcohol. I have seen some doctors withhold any fermented food product, including vinegar, in patients using Flagyl. This drug impacts alcohol and aldehyde metaboism, causing aldehydes to build up in the body. There are many natural alcohols generated in the body's metabolism. So enhancing metabolism with Vit B1 may help. (Antabuse for alcohol rehabilitation also impairs aldehyde removal ...only its effects are faster and more apparent and dramatic)

Cipro disrupts DNA of bacteria, and also that of the host. It is unclear what could help block this. The only hint I've seen
appeared on Dr. Jay Cohen's website that glutathione and magnesium helped one patient who corresponded with him.

Let's hope your son is one of the lucky ones, and has little or no negative consequences from his necessary treatment.

Thanks for the reply Mrs. D. Fortunately my son is not a drinker at all, so no worries there. I'll share some of my benfotiamine with him, hopefully that will help some.

Ragtop262 03-14-2016 07:43 PM

Thanks to everyone who expressed concerns. My son had a follow up appointment with a GI Doctor that specialized in Crohns. She wasn't as sure as the other Doctors that he actually has it. Upper/lower GI scheduled for Friday (unless she sees something when she receives the CT images that indicates it would be too risky).

Keeping fingers crossed. But while not convinced he has Crohns - the doctor also indicated he may still need surgery to remove the damaged section of intestines - depending on endoscopy findings. :(

bluesfan 03-15-2016 11:03 PM

Hi Ragtop

Sorry your son is having to go through this. Did they actually remove his appendix or are they just trying to manage the infection?

I had an appendectomy 18mths ago and was given Metrodiazanole (Flagyl) while in hospital. I already had mild PN in hands & feet and after the surgery it became full-body intense PN. No one can confirm if it was the Flagyl as I also have an auto-immune condition.

Hopefully your son can avoid PN developing. As others have suggested supplements that may help I won't add any. Re the possibility of him having Crohn's disease there is some work being done in using Low Dose Naltrexone (LDN) to help relieve symptoms. Here's a link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

Let me know if you want more info - I have several sites bookmarked.

All the best for getting the diagnosis sorted and getting him the right treatment.

Neuroproblem 03-16-2016 02:45 AM

Quote:

Originally Posted by Ragtop262 (Post 1204346)
Thanks to everyone who expressed concerns. My son had a follow up appointment with a GI Doctor that specialized in Crohns. She wasn't as sure as the other Doctors that he actually has it. Upper/lower GI scheduled for Friday (unless she sees something when she receives the CT images that indicates it would be too risky).

Keeping fingers crossed. But while not convinced he has Crohns - the doctor also indicated he may still need surgery to remove the damaged section of intestines - depending on endoscopy findings. :(

im curious, you mentioned infection, did they say what kind,

Ragtop262 03-16-2016 11:25 AM

Quote:

Originally Posted by Neuroproblem (Post 1204576)
im curious, you mentioned infection, did they say what kind,

No, the infection was seen on the CT scans. No testing was done to isolate the specific type. I assume that's why they are treating him with both flagyl and cipro (between the two, I think you pretty much cover the spectrum of infectious agents that could be in the digestive system.)

One of the interesting things I read was that flagyl used to be a standard treatment for Crohns disease. More recently they have moved toward cipro due to the neurotoxic effects of flagyl.

But if you have a serious infection that's eating up your intestines, you do what you have to do to stop it - even if there is some risk involved.

SylvieM 03-16-2016 01:30 PM

Quote:

Originally Posted by Ragtop262 (Post 1204643)
No, the infection was seen on the CT scans. No testing was done to isolate the specific type. I assume that's why they are treating him with both flagyl and cipro (between the two, I think you pretty much cover the spectrum of infectious agents that could be in the digestive system.)

One of the interesting things I read was that flagyl used to be a standard treatment for Crohns disease. More recently they have moved toward cipro due to the neurotoxic effects of flagyl.

But if you have a serious infection that's eating up your intestines, you do what you have to do to stop it - even if there is some risk involved.

I would also like to send my kindest wishes for an excellent outcome for your son.

Sylvie

Ragtop262 03-21-2016 07:55 AM

Well, this is my son's last day on the antibiotics and no issues so far. Keeping fingers crossed.

He had upper and lower GI endoscopy on Friday, and the doctor saw nothing visible to suggest Crohns, and no signs of ongoing infection or inflammation in the area where it was previously seen on CT. Although we will have to wait and see what the biopsies show.

Next step is to have him swallow a capsule camera, (to take pictures of the entire length of the small intestine). And an MRI of the intestines to detect any other abnormalities.

At least this happened early in the year. Although the bills haven't hit yet, I'm assuming we are well beyond our out of pocket max - so any other tests or treatments he receives should be 100% covered.

pinkynose 03-29-2016 09:15 AM

How is your son doing?
 
I only saw this post yesterday and was wondering if you can give us an update since he is done with his antibiotics? No pressure if you're not ready.

I hope he has smooth sailing from here on out. We are here to support you.
carol

Quote:

Originally Posted by Ragtop262 (Post 1205300)
Well, this is my son's last day on the antibiotics and no issues so far. Keeping fingers crossed.

He had upper and lower GI endoscopy on Friday, and the doctor saw nothing visible to suggest Crohns, and no signs of ongoing infection or inflammation in the area where it was previously seen on CT. Although we will have to wait and see what the biopsies show.

Next step is to have him swallow a capsule camera, (to take pictures of the entire length of the small intestine). And an MRI of the intestines to detect any other abnormalities.

At least this happened early in the year. Although the bills haven't hit yet, I'm assuming we are well beyond our out of pocket max - so any other tests or treatments he receives should be 100% covered.


Ragtop262 04-01-2016 10:20 AM

Quote:

Originally Posted by pinkynose (Post 1206311)
I only saw this post yesterday and was wondering if you can give us an update since he is done with his antibiotics? No pressure if you're not ready.

I hope he has smooth sailing from here on out. We are here to support you.
carol

Hi Pinkynose. My son is back at school and doing pretty well. All the biopsy results were negative, so we still don't know what's going on with him. His course of antibiotics is done, and he hasn't had any side effects - (at least not any short term ones). He is coming home in two weeks to do the MRI on his intestines. Then most likely they will do the capsule camera procedure when he is done with school in May.

Already over $30,000 in medical bills - and we still know nothing other than he had an infection. Its starting to seem a lot like trying to figure out what causes my SFN symptoms. :mad:

mrsD 04-01-2016 12:01 PM

If he had the Cipro.... remind him of the tendon rupture potential.
This can happen in the future... so remind him to not strain any muscles or do extreme athletics.

Ragtop262 04-04-2016 07:53 AM

Quote:

Originally Posted by mrsD (Post 1206684)
If he had the Cipro.... remind him of the tendon rupture potential.
This can happen in the future... so remind him to not strain any muscles or do extreme athletics.

Thanks for the reminder - I had forgotten about that side effect. Not too much of a concern with this kid though - he isn't into any heavy duty sports. His exercise is mostly of the low impact/aerobic type (and not as much of that as he should be doing).


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