posted
I've been slowly some losing sensation in some of my fingertips and toes, more on the right side than the left. I've had similar numbness and also neuropathy pain since before tx which I attributed to lyme/co's, but I feel like this might be different.
An example is when I am trying to handle bills or rummage through my purse. I see my fingers touching stuff and there is enough sensory feedback to confuse me, because what I feel and what my fingers are actually accomplishing are two different things. My fingers aren't working very well to handle light or delicate things.
Has anyone had this and improved after discontinuing the drug?
I feel like I made good progress with this, I saw a decent return of energy with it and doxy. But over the last three months sx have been returning and increasing, so it may be time to change the game a little anyway.
Posts: 474 | From US | Registered: May 2014
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posted
I haven't had neuropathy with Tinidazole but I have heard it happens.
Are you taking a b-complex? It is said to help clear the neuro side effects of Tinidazole.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
Yes, B-complex, ALA, Mg, EFA's, K2, C, liver support, and some others since at or before beginning tx. Dr. B guidelines state extra B6 can be added for severe neuropathy, perhaps that could be helpful for this when I am able to add it.
Whether this is a side effect of the tini or caused by lyme/co's I can't really know for sure until it goes away.
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posted
Thank for the replies so far. I think it is always best to first take issues to the doc, except that I haven't been able to afford to see my LLMD for a couple of months, I can't imagine he would do more than tell me to discontinue the drug for the time being.
I have an extremely anti-ILADS protocol GP, so the last thing I want to do is take her a complaint of an adverse drug reaction, especially if there is nothing she can do to help me with it.
I'm not so worried about discontinuing a cystbuster per se, but that I am dropping a tx that may have been hitting babs/similar. My bart sx have been worsening over the last few months, and the babs sx have been increasing over the last 4 weeks.
Posts: 474 | From US | Registered: May 2014
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posted
You may want to increase your B-complex, ALA and EFA's, or you may want to decrease your dose of tinidazole. According to Burrascano that may help. If the symptoms are only light they will probably reverse upon discontinuing the drug. But if symptoms are severe or therapy is continued for a long period of time then symptoms can become persistent or very hard to reverse.
What dose are you on now?
Tinidazole is often pulsed to prevent neuropathy from happening. Like a couple of days or weeks on, followed by a break for a couple of days or weeks.
Posts: 381 | From The Netherlands | Registered: Nov 2013
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posted
I've been on it continuously since July, 500 mg BID. The numbness seems only very slight, I feel like I could probably still "pass" a simple quantitative test for neuropathy. I can still feel things, but there is a definite loss of sensation.
I had similar losses of sensation in hands/feet since before I began the tinidazole that didn't show as anything remarkable upon assessment. Not sure if this is related, and I'm cautious to chance that it's not the med since it is starting to affect my function.
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posted
Come to think of it, my wrist tendinitis has been aggravated lately, and my hands have been painful with some swelling which is a new one for me. All this getting worse in the last month too. Perhaps the numbness is related to the increase in my other sx.
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posted
Something else is my hands falling asleep, but I never connected it to this before. My hands always fall asleep at night whether my arms are straight down my sides or lying across my chest. They are never under me or bent into angles.
Digging around, I found numerous discussions about these sx being rather particular to bart. That could make a lot of sense to me. My bart sx have become unbearable beyond everything else right now. This eases my mind a little, hopefully it'll clear when I start treating bart more appropriately.
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
If it were me, I'd stop it immediately.
I'm dealing with permanent peripheral neuropathy from an adverse drug reaction.
Try Alinia or another cyst buster.
It's not worth it to get permanent nerve damage from what's suppose to help you.
Posts: 2839 | From California | Registered: Jul 2012
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posted
What you think are Bart sx may or may not be truly be from Bart. --that's something your doctor should determine.
The main issue is that you have neuro symptoms that are gradually WORSENING on the regime you are currently taking. That alone is a reason to call your doctor and review what might be going on, and where to go from here.
If this is medication-related neurotoxicity, you could potentially end up with irreversible damage if it's not stopped in time.
-------------------- Please consult your physician before making any changes to your diet, medications, or supplements. I am not a healthcare professional and nothing I write should be construed as medical advice. Posts: 166 | From USA | Registered: Dec 2014
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posted
Thanks for the concern, I stopped the tinidazole a few days ago. I'm not seeking medical advice so much as the comfort that comes from the support of others sharing similar experiences.
I felt the Alinia was doing something when I included it in a parasite protocol and was thinking it would make a good sub for the tini. I agree that permanent damage shouldn't come from a drug that is supposed to get you better, and some tx's are best left alone (for me, anyway).
I am very wary of this, at this point I'm not convinced it is the med but don't want to take any chances either. Thankfully it is something that I should be able to (hopefully!) cover with other meds, because I did get a lot of energy back with taking tini.
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I did well on tini, but didn't realize some of my pain was being caused by it.
When I took levaquin it pushed the pain and peripheral neuropathy over the edge.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I've seen some of your posts about the levaquin, I wish I knew what to say. Your situation speaks to the severity of damage some drugs can have.
Fluoroquinolones are helpful and curative for many, but the potential harm they can cause is frightening. I hope anyone who considers taking them is able to be well informed about them.
I have a lot of tendinitis already, hopefully it hasn't been affected by the tini. Can't tell but doesn't seem like it. The next tx's I add for bart will hopefully turn out effective because at this point I am set against taking any fluoroquinolones.
Posts: 474 | From US | Registered: May 2014
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posted
It appears the issues I was having with my fingertips are clearing. Very slowly, but there is a discernible difference.
Unfortunately, my babs sx are roaring now. I am back to full on air hunger, headaches, palps, chest pain, fatigue, and more. I think the tinidazole was definitely slowing down whatever is causing the babesia sx.
I had been on the alinia for some time and while I do think it was hitting something, it is not anywhere near the effectiveness of tini for me for babs. In a way, the switch to babs sx is a relief from the overwhelming bart sx I could hardly deal with, but now I feel like I'm back to square one again.
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