Do I have peripheral neuropathy now?

[Katzenklaur]

4 days ago I was diagnosed with c diff after a month of having diarrhea and lightheadedness. The doctor prescribed 500mg of Flagyl 3 times daily. I took 2 pills that day and 3 the next and then noticed a tingling in my left foot. The next day, the tingling spread to my arms, legs, hands and other foot. Finally, yesterday after taking a pill in the morning, I decided to see if it was a side effect of the drug and found all these horror stories of people having permanent nerve damage from the drug. However, they were all on it for much longer than I was or were older (I'm 24). That final dose was a day and a half ago now, but I still have tingling. My doctor said it would go away after a week but I'm still really scared of what I've read. Is this permanent?

[AllisS]

No one on this site could say with absolute certainty whether any side effect, including the one you describe, is permanent or not, since we're not doctors. (Doctors seldom know anything for sure either.) My best guess would be, no, it's not permanent, mainly due to the brief time you were on the drug. Virtually all drugs come with a list of worst-case-scenario adverse effects, e.g., "permanent this or that." If a doctor wants to prescribe Flagyl for you for anything in future, mention the side effect, even if it goes away quickly (which, per above, I believe it will). It might be considered an allergic reaction, and Flagyl could be a drug you would want to avoid for that reason.

[seekingcure]

I'm not in the medical field either, but I agree that, in all likelihood, the side effects will gradually decrease after you've been off it for a few days. I also had some tingling in my hands and toes, although much more minor than you. I also had severe anxiety while on the Flagyl, with a severe, and I do mean severe, panic attack on the night of my last dose. While I can attribute some of the anxiety to the c-diff itself, I can't blame c-diff for the panic attack. It probably took about two weeks being off it before I was back to normal. It's a nasty drug and I don't intend to ever take it again. I have listed it on my medical records as a drug that I'm allergic to and I would advise you to do the same, as AllieS suggested.

I'm assuming you're now on Vanco and you should feel much better on it. I sure did. Plus it has a better cure rate than Flagyl. Let us know how things go.

[saraht]

So sorry you are going through this. I too got some tingling in my hands and feet but not to the extent you do. Some people are more sensitive than others. I do remember feeling absolutely horrid on flagyl. Tired, dizzy, out of it, and just unwell. If it gets worse I would definitely call the dr back and see if he can get you on vanco. Funny thing, when I first had c.diff at 23 my old primary treated me for 6 months on and off with flagyl until I was referred to a GI who put me on vanco.


Years later when I had c.diff again and seen an Infectious Disease Dr at Johns Hopkins I told him about my first run in with c.diff and the flagyl, and he said "wow, Im surprised you didn't get neuropathy from the long exposure" Great way to find out about it huh?

Keep us updated on how you do! Prayers for you, and that you beat this quickly!

-sarah

[Katzenklaur]

It's been two weeks now and the tingling and numbness has almost entirely disappeared. Unfortunately, my c diff is still around. Just thought I should give an update.

[AllisS]

SOMEWHAT BELATED INTRO LETTER: Welcome to the site. Read the first forum, All Users Read This First, and the subtopic Guidelines for Posting to Our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody’s article and topics in CDI – C. Diff Info – Formerly FAQ, including Tests, Hygiene Tips, and Nutrition. Also read The C. Diff Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one or two rounds of Flagyl or vancomycin. A small percentage do not. Most people eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. (See FMT Information and Treatments.) Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See CDI – Antibiotics Most Likely to Cause C. Diff/Antibiotic Resistance.) Some people tolerate them; some develop C. diff again. (See Dr. Borody's article.) Don’t take medications for C. diff unless you are tested. (See CDI – Tests.)

For further information, see http://www.peggyfoundation.org/ and several other support groups on Facebook. Also, visit reputable medical sites, such as www.mayoclinic.org and www.webmd.com.

This is a support site, not a medical site. We can’t give you medical advice, but we can tell you what did or did not work for us. No one will understand exactly what you are going through unless they have had this unpredictable disease. The best protection, for you and others, is thorough hand-washing and good overall hygiene.

Although we know how devastating C. diff can be physically, mentally, and financially, this is not a fundraising site. We rarely ban posters unless they are verbally abusive, combative, or insulting; use inappropriate language consistently; or attempt to sell something through the site, in which case we usually issue a warning first.

Again, welcome. Remember, the odds are in your favor.

END OF LETTER.

Katzenklaur, sorry to hear that the c. difficile is still with you. Did your dr. switch you to vanco? That antibiotic is generally more effective than Flagyl. Better still is a new drug, Dificid, if your insurance will cover it. Glad to hear that the neuropathy you were experiencing a few weeks ago resolved.

[Katzenklaur]

AllisS wrote:
> Katzenklaur, sorry to hear that the c. difficile is still with you. Did
> your dr. switch you to vanco? That antibiotic is generally more effective
> than Flagyl. Better still is a new drug, Dificid, if your insurance will
> cover it.

I just finished a round of liquid Vanco last Saturday. It helped some, especially towards the end of the round, but the diarrhea has come back after it was over. I'm waiting for a call back from the doctor on what to do next. I also volunteered for a medical study testing anti-toxin antibodies for c-diff. I had an infusion two weeks ago and get regular checkups with the doctor.

The worst part of all this is the lightheadedness / wooziness that I've had near constantly since the diarrhea started a month and a half ago. The doctors say it's due to the diarrhea and I try to drink lots of water and eat the right foods (bananas, rice, toast) but it doesn't seem to go away.

[AllisS]

Sounds like an awful experience. Hope the dr. can help. Possibly the lightheadedness you describe is caused by electrolyte imbalance brought on by dehydration. You may want to check with dr. re: whether Gatorade or Pediolyte would be better than water (or good in addition to it) to help address this.

[Katzenklaur]

We've talked about drinking Gatorade. I'm somewhat reluctant to drink too much of it because it has a lot of sugar. Never heard of pediolyte before.

[Bobbie]

Mix Gatorade with l/2 water - reduces the sugar and calories but still get hydration. Pedilyte is what they give infants who are dehydrating. Used to have to give it to my son - tasted terrible then. Think it is in different flavors now. Full of electrolytes - look in "baby aisle."

[getwellsoon]

If you are still experiencing the lightheadedness and dizzyness I would suggest a visit to the Dr. It sounds like you might need a bag or two of saline to prop you up. When I had CDiff and would go to the ER, they would give me a few bags and I felt like a new person for a few hrs. Of course, since they weren't treating the CDiff it always came back and I would feel terrible again. Please don't wait until you pass out or have worse things happen. Your body is telling you it needs more hydration and water or pedialyte probably won't do it. Let us know what he says. If he refuses and you still feel bad I would go to the ER just to be on the safe side. Hope you feel better today. Carol

[Katzenklaur]

Well, I went in for a saline infusion but it didn't do much to help. They tested my electrolyte levels and found that they were completely normal. The doctor said it could still be due to a pH imbalance or a-something-lyte balance. I can't remember the word he used. I'm going to visit my doctor on Monday.

[Katzenklaur]

The second round of Vanco is working well, much better and faster than the first round. I still don't know what is causing my wooziness, though. I thought that as the diarrhea got better, so would my head problems, but that doesn't seem to be the case. I had a ton of blood tests done: full metabolic, CBC, A1C. All came back normal. The doctor said he might refer me to a neurologist or ear,nose,throat specialist if all came back normal. I can't believe my symptoms aren't related to the c. diff though, they came on at almost the exact same time. Frustrating.

[seekingcure]

Well, I'm glad to hear you are at least better with the D. Hopefully with all the tests, you will get some answers soon. It is frustrating to have something going on and nobody can figure out what's causing it or how to fix it.

[getwellsoon]

I had some of the wooziness you are experiencing. As you get better I think it will subside, mine did. I would still rule out anything else, your Dr. is right to send you for further consults. Let us know what you find out and hope you feel better soon. Did he say you could take anything, like an antihistimine? If you do have some fluid in the ear etc. it might help but I would run it by the Dr. Hope today is a better day and so glad this round of Vanco is working better for you. Let us know how you do. Carol