posted
Hello. I had called my LLMD's office several times and told her I had whole body neuropathy and going on week 3 now. Her first answer was to take the IV once a week instead. I could not do that and good thing because it is getting no better. I called and told her that and am taking all the necessary supplements and vitamins to help the neuropathy to no avail. Her answer is that she thinks it's helping me and I shouldn't go off. She has given me no alternative. Sounds like she's not happy with me and yes, my Lyme symptoms are worse since stopping the Flagyl, but the neuropathy is causing me all sorts of problems and depression. What would you do??? Now, I am very worried about my care going forward.
Posts: 319 | From Mass | Registered: Feb 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i was on flagyl recently for my diverticulitis. 1000 per day.
i developed bad tingling and numbness in my hands and feet. it really hurt. i made it through the 10 days but i will not take it again.
i'm still having residual pain and i'm hoping it will go away.
there must be something else. i've been on it numerous times but the last couple have been absolutely the worst. and i'm afraid the next time it won't go away so i'm not chancing it.
i'd rather go with the lyme than that awful burning and pain.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Oh, I hear you! Did your doctor give you an alternative? Seriously, I had neuropathy in my feet after the first dose and for the next 6 doses and then I had no warning and it is everywhere! It depends on the day and time of day where the pain and tingling is and how bad it is. There is no end in sight for me. This is constant agony, I agree.
Posts: 319 | From Mass | Registered: Feb 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
He said to finish the last couple of days and then no more. If I have another attack well we'll take it from there.
Seems the list of what I cant take is getting longer and longer
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I know, my list is becoming like that. As time goes on( after 3 years it started), seems like I have side effects from more and more. I wonder why that is.
Posts: 319 | From Mass | Registered: Feb 2010
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Is oral tinidazole an option? It was my understanding that it has less side effects than Flagyl. I enjoy taking the tinidazole.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
It is supposssed to be, but seems like my LLMD thinks I am just taking a break from flagyl and going to put me back on. I am puzzled. Being off of a cyst buster after making progress doesn't seem like the best option for someone.
Posts: 319 | From Mass | Registered: Feb 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Have you asked if you could try Tinidazole or Tindamax? It's usually tolerated much better. Flagyl is known for causing depression and neuropathy.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Neuropathy is not something to be ignored, especially if it progresses. Any LLMD worth their salt should be understanding if a patient can't tolerate a treatment for whatever reason and thus should offer an alternative.
Tindamax (Tinidazole) is probably a good option to try. Tindamax generally has the same wide-ranging, cyst-busting action as Flagyl (Metronidazole), but is MUCH better tolerated by most patients. It doesn't have the metallic taste issue, neuropathy, and other issues nearly as often, that are much more prevalent with Flagyl. Up until recently, the main downside to Tindamax was its expense compared to Flagyl - Tindamax was brand name only and Flagyl was generic. However, for about... close to a year at least, there is generic tinidazole available.
Oh, anyone who wanted a reply from me a few weeks ago, I'll try to send what answers and information I am able.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
How 'bout Samento & Banderol? Or systemic enzymes? Or Grapefruit Seed Extract? I've heard these things also bust cysts, without the risk of neuropathy...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Page 15 of Burrascano:
"Flagyl can be irritative to the nervous system- in the short term, it may cause irritability, "spacey" feelings, etc. Longer term, it can affect the peripheral nerves, causing tingles, numbness, etc. If mild, a change in dose may be required. Often, extra vitamin B can clear these symptoms. If the nerve symptoms persist or are strong, then metronidazole must be discontinued or these symptoms may become very long lasting."
I hope you are taking extra B vitamins. See Burrascano's recommendations for B vitamins in his "Required Supplements" list.
Posts: 9931 | From Maryland | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Ask for Tindamax instead
Posts: 3528 | From US | Registered: Apr 2007
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